desperate

[Guest guest]

Sue

How much does AZT cost?

Steve

On Apr 12, 2010, at 11:28 AM, Sue wrote:

> kathryn i was in a similar position as you just a few weeks ago. i

> was ready to end my life. i got tested for XMRV and started AZT. i

> am 25% improved already, believe it or not.

>

> have you been tested?

>

>

>

> From: Kathry Froese <kathryn@...>

> Subject: Desperate

>

> Received: Monday, April 12, 2010, 1:40 PM

>

>

>

> I have had Chronic Fatigue Syndrome for 20 years, becoming very

> debilitated over time, mostly housebound and in recliner or bed.

> Hypothyroid for 10 years. Diagnosed with 's Disease (ACTH Stim

> test - the gold standard) two years ago but unlike most people with

> 's, my blood pressure and heart rate tends to be high. This

> does

> not make sense to any of my endos or doctors but much like CFS, they

> simply ignore it because they don't have any answers. My illness has

> worsened after starting Hydrocortisone (steroids), the treatment for

> 's.

>

> I have had nausea for almost two weeks accompanied by tremors,

> sometimes

> severe. I went to Emergency by ambulance a few days ago - waited on

> stretcher for almost 8 hours before being seen by a doctor probably

> because none of my vitals looked alarming. I was nauseous and shaking

> but not vomiting. Retching but not vomiting. With severe tremors.

>

> I begged for a saline iv to avoid dehydration without anti-nausea meds

> because all of them make me more nauseous. Without fail. But was told

> I had to see the doctor before I could get the iv. Finally after 8

> hours was given 60 mg. Hydrocortisone by iv drip instead of injection

> because when I take Hydrocortisone in pills, my blood pressure and

> heart

> rate goes up so I guess they didn't want to risk an injection. After

> the

> drip, my blood pressure went down further than it's been in many

> years -

> top number was 112 - I did write it down in the ER but too weak to

> find

> where it is right now. (Blood pressure and heart rate is supposed to

> go

> up in 's when getting HC, low blood pressure is one of the

> major

> symptoms of 's) and my heart rate went from over 100 to low

> 70's.

> That day I had a total of 105 mg. Hydrocortisone and felt better

> immediately after the drip but the next day I was back to where I'd

> begun

>

> None of my doctors know how to treat me. If I'd been vomiting, I would

> have been seen immediately. For some reason, I've always had a hard

> time vomiting - I have writhed on the floor in agony with nausea but

> rarely vomit. There was little or nothing in my stomach to bring up. I

> have been back home for 4 days and the nausea is relentless. I waken

> at

> night with highish blood pressure and heart rate of over of 100 on 40

> mg. HC. I am forcing myself to eat - have to eat if taking cortisol,

> but the nausea is non-relenting. I am too weak to go see a doctor and

> most definitely cannot go to Emergency again. I couldn't lie down flat

> because of the nausea but couldn't stay in bed because of severe lower

> back pain. CFS makes me very weak so I basically had no place to rest.

> And they don't know how to treat me because my symptoms don't follow

> the

> rules.

>

> I am too weak to remain upright for more than a few minutes. I have a

> lot of bruises - a sign of high cortisol. I shake a lot.

>

> I am desperate; can anyone help? I was on 30 mg. Hydrocortisone for

> several months after being on 20 mg. for almost 2 years but have

> gone up

> to 40-45 for 5 days. It is much as I can tolerate. There must be a CFS

> connection here???

>

> I have no stress tolerance; I can't go on like this much longer. If

> anyone can help. . . .

>

>

>

>

[Guest guest]

like $100 a month

>

> From: Kathry Froese <kathryn@...>

> Subject: Desperate

>

> Received: Monday, April 12, 2010, 1:40 PM

>

>

>

> I have had Chronic Fatigue Syndrome for 20 years, becoming very

> debilitated over time, mostly housebound and in recliner or bed.

> Hypothyroid for 10 years. Diagnosed with 's Disease (ACTH Stim

> test - the gold standard) two years ago but unlike most people with

> 's, my blood pressure and heart rate tends to be high. This 

> does

> not make sense to any of my endos or doctors but much like CFS, they

> simply ignore it because they don't have any answers. My illness has

> worsened after starting Hydrocortisone (steroids), the treatment for

> 's.

>

> I have had nausea for almost two weeks accompanied by tremors, 

> sometimes

> severe. I went to Emergency by ambulance a few days ago - waited on

> stretcher for almost 8 hours before being seen by a doctor probably

> because none of my vitals looked alarming. I was nauseous and shaking

> but not vomiting. Retching but not vomiting. With severe tremors.

>

> I begged for a saline iv to avoid dehydration without anti-nausea meds

> because all of them make me more nauseous. Without fail. But was told

> I had to see the doctor before I could get the iv. Finally after 8

> hours was given 60 mg. Hydrocortisone by iv drip instead of injection

> because when I take Hydrocortisone in pills, my blood pressure and 

> heart

> rate goes up so I guess they didn't want to risk an injection. After 

> the

> drip, my blood pressure went down further than it's been in many 

> years -

> top number was 112 - I did write it down in the ER but too weak to 

> find

> where it is right now. (Blood pressure and heart rate is supposed to 

> go

> up in 's when getting HC, low blood pressure is one of the 

> major

> symptoms of 's) and my heart rate went from over 100 to low 

> 70's.

> That day I had a total of 105 mg. Hydrocortisone and felt better

> immediately after the drip but the next day I was back to where I'd

> begun

>

> None of my doctors know how to treat me. If I'd been vomiting, I would

> have been seen immediately. For some reason, I've always had a hard

> time vomiting - I have writhed on the floor in agony with nausea but

> rarely vomit. There was little or nothing in my stomach to bring up. I

> have been back home for 4 days and the nausea is relentless. I waken 

> at

> night with highish blood pressure and heart rate of over of 100 on 40

> mg. HC. I am forcing myself to eat - have to eat if taking cortisol,

> but the nausea is non-relenting. I am too weak to go see a doctor and

> most definitely cannot go to Emergency again. I couldn't lie down flat

> because of the nausea but couldn't stay in bed because of severe lower

> back pain. CFS makes me very weak so I basically had no place to rest.

> And they don't know how to treat me because my symptoms don't follow 

> the

> rules.

>

> I am too weak to remain upright for more than a few minutes. I have a

> lot of bruises - a sign of high cortisol. I shake a lot.

>

> I am desperate; can anyone help? I was on 30 mg. Hydrocortisone for

> several months after being on 20 mg. for almost 2 years but have 

> gone up

> to 40-45 for 5 days. It is much as I can tolerate. There must be a CFS

> connection here???

>

> I have no stress tolerance; I can't go on like this much longer. If

> anyone can help. . . .

>

>

>

>

[Guest guest]

Hi, I just spent 5 days at Duke for pain control due to excrutiating pain. When

this pain comes on I wish I were dead. At Duke they told me I needed no

intervention as the discs below my C1-7 fusion and above the L2-S1 fusion are

merely bulging and not pressing on nerves. I had a discogram of L1-2 a year ago

that showed the disc had no integrity whatsoever. It was marked a 10 out of 10.

The Dr. who ordered the discogram is a Hopkins trained orthopod who sees

complicated spines. He suggested doing an xlif at that level and if it didn't

take redoing my lumbar fusions posteriorly. I had the surgery scheduled last Jan

and then had to cancel as I needed a pancreatectomy. The orthopod I saw at Duke

who does a lot of xlifs said he did not believe one would hold above such a long

fused area. I wanted to get some other opinions as I was also told I have

flatback but am now feeling desperate due to the degree of pain. This pain runs

the length of my unfused area and is particularly bad below the cervical fusions

and above the lumbar fusions. It is intense pressure and feels inflammatory in

nature. Has anyone else experienced this type of pain? Any suggestions on my

situation? Thanks much. Kate

[Guest guest]

Hi Bonnie, Thanks for replying and having an interest. I was inpatient at Duke as the 6mg of dilaudid I take 4x's a day wasn't touching the pain. I saw an orthopedic surgeon and had neurosurgeons look at my studies. Noone thought the MRI'S of my lumbar or cervical areas showed compression of nerves, though the discs below my C1-7 fusions and above my L2-S1 fusions are bulging. Despite there not being any indication of nerve compression I was having numbness in my feet and neuro signs that would come and go. As I stated, last Jan I had a discogram that showed the disc at L1-2 had no integrity. I can't believe it's gotten better. The intense pain in my lumbar spine comes and goes. At it's worse I am unable to cope. I am using ice, a TENs unit and 150mcg of fentenyl in addition to the high dose of dilaudid. I got on the high dose of narcotics while hospitalized for 2 mos in Apr and May for a pancreatectomy during which I developed an abd. abscess which led to a kidney removal. I've been trying to come off the narcotics and finding it impossible because of my spine pain. My dilemma is that I'm not sure the pain is from the L1-2 disc so don't know if I should risk the XLIF surgery. The orthopod at Duke told me I have flat back and I wonder if the pain could be from that. Because my tolerance to narcotics has gotten so high it could be disastrous to have surgery that didn't help and ratcheted up my pain level when there is nothing to treat it. Right now the pain has eased up and I can think clearly and consider going for 3rd and 4th opinions but when the pain gets outrageous I feel desperate and want to do anything to make it stop. This is the 1st reprieve I've had with it in over a week. I wish I understood what is going on. If you have a suggestion I'd love to hear it. Thanks much, Kate

From: Bonnie Stone

Sent: Friday, August 06, 2010 8:05 PM

Subject: [ ] Re:desperate

Hi Kate,What kind of doctor did you see when you were at Duke? An ortho? a physiatrist? an anesthesiologist/pain doc? And may I ask, are you saying you were an inpatient for 5 days? And, as Cam asked, why didn't you seek help from the doc who did the discogram? I would like to help, if I can, but I really can't without getting this information, and anything else you can tell us that would clarify your situation. I hope you don't mind my asking.Bonnie

[Guest guest]

Hi Kate, My goodness, you are suffering. I read it in your words. I too am pre-revision. I have been there and am still struggling with pain of flatback and degeneration. I know this is a very silly question, but are you able to do any exercises at all, i mean gentle stretches, nothing too strenuous. I get heat and interferential therapy once per week, I have gentle exercises guided by a P.T. to do at home. I won't embarrass myself and do them in the clinic (lol). I have also just started taking supplements based on some research I have been doing, in what causes muscle spasm for people like us. Right now... here is what I have started taking... vitamin D, 400 IU.vitamin E, 400-800 IU.calcium, 1,000 mg.boron, 10 mg.silica, 1,000 mg.Magnesium, 500 mgMultivitamin, with

minerals.I have only been taking them for a week. It will take a couple of months to figure out if it will help but right now I am noticing after a week that the tightness I have in the left hip is a little bit less. I don't know if it will work but until I can get all the second and third opinions necessary to get comfortable enough to trust a surgeon to the surgery if it works that is bonus. I am taking 40Mg percacet every 6 hours, 350Mg tramadol x 2 every 12 hours, and naproxen. I have morphine for when the pain is at a maximum. I know how you feel, I have ended up in hospital too with unbearable pain. Flatback will play a major role in pain, and so too will adult degenerative scoliosis. Try to hang in there, take one day at a time. I am at a point now, where I can tell when the muscles are in the early stage of spasm and that is when I know it is time to go easy. Have you tried ice! Last time, more than anything, laying on ice really helped.

I know it sounds basic but it will stop the blood flow and it might give you relief. Hang in there, you are part of a group of very experienced people who have been here with us, and have gone through it all and can support you through. It really does help you appreciate the good or better days when we have these major flairs for sure. I hope this helps. Maggie. From: Kate Carroll <katecarr@...> Sent: Fri, August 6, 2010 9:05:50 PMSubject: Re: [ ] Re:desperate

Hi Bonnie, Thanks for replying and having an interest. I was inpatient at Duke as the 6mg of dilaudid I take 4x's a day wasn't touching the pain. I saw an orthopedic surgeon and had neurosurgeons look at my studies. Noone thought the MRI'S of my lumbar or cervical areas showed compression of nerves, though the discs below my C1-7 fusions and above my L2-S1 fusions are bulging. Despite there not being any indication of nerve compression I was having numbness in my feet and neuro signs that would come and go. As I stated, last Jan I had a discogram that showed the disc at L1-2 had no integrity. I can't believe it's gotten better. The intense pain in my lumbar spine comes and goes. At it's worse I am unable to cope. I am using ice, a TENs unit and 150mcg of fentenyl in addition to the high dose of dilaudid. I got on the high dose of narcotics while hospitalized for 2 mos in Apr and May for a pancreatectomy during which I developed an abd. abscess which led to a kidney removal. I've been trying to come off the narcotics and finding it impossible because of my spine pain. My dilemma is that I'm not sure the pain is from the L1-2 disc so don't know if I should risk the XLIF surgery. The orthopod at Duke told me I have flat back and I wonder if the pain could be from that. Because my tolerance to narcotics has gotten so high it could be disastrous to have surgery that didn't help and ratcheted up my pain level when there is nothing to treat it. Right now the pain has eased up and I can think clearly and consider going for 3rd and 4th opinions but when the pain gets outrageous I feel desperate and want to do anything to make it stop. This is the 1st reprieve I've had with it in over a week. I wish I understood what is going on. If you have a suggestion I'd love to hear it. Thanks much, Kate

From: Bonnie Stone

Sent: Friday, August 06, 2010 8:05 PM

Subject: [ ] Re:desperate

Hi Kate,What kind of doctor did you see when you were at Duke? An ortho? a physiatrist? an anesthesiologist/ pain doc? And may I ask, are you saying you were an inpatient for 5 days? And, as Cam asked, why didn't you seek help from the doc who did the discogram? I would like to help, if I can, but I really can't without getting this information, and anything else you can tell us that would clarify your situation. I hope you don't mind my asking.Bonnie

[Guest guest]

Thanks so much Maggie!!! I do use ice and it is the most effective tool I have - funny as it is so basic. I take Vit D, calcium with 80mg magnesium, multivit and fish oil but not boron, silica or the higher dose of magnesium. What have you read about them? When I'm not in an acute flare up I walk and do gentle stretches with theraband. I had liked water exercise but the last few times I tried I caused increased pain. Who are you consulting with and what are you being told? When I get my flare ups it feels like core pain and not muscle spasm. It feels like my spine has intense pressure in it and I often get a pulsing in it-like a migraine but in my spine. Do you get pain like this or know what causes it? I am having some relief today and feel I can cope but when I'm flaring I just can't imagine going on much longer. I have a wonderful 14yo daughter who I have to hang in for. We just had to cancel our mountain vacation and I hate disappointing her like this, though she couldn't be more understanding. Thanks so much for making contact. It helps to know you are out there. I'd love to know more about what your situation is and what you are learning. If you want to email me offline you can use katecarr@... Take good care of yourself! Best, Kate

om: maggie stevens

Sent: Friday, August 06, 2010 10:35 PM

Subject: Re: [ ] Re:desperate

Hi Kate, My goodness, you are suffering. I read it in your words. I too am pre-revision. I have been there and am still struggling with pain of flatback and degeneration. I know this is a very silly question, but are you able to do any exercises at all, i mean gentle stretches, nothing too strenuous. I get heat and interferential therapy once per week, I have gentle exercises guided by a P.T. to do at home. I won't embarrass myself and do them in the clinic (lol). I have also just started taking supplements based on some research I have been doing, in what causes muscle spasm for people like us. Right now... here is what I have started taking... vitamin D, 400 IU.vitamin E, 400-800 IU.calcium, 1,000 mg.boron, 10 mg.silica, 1,000 mg.Magnesium, 500 mgMultivitamin, with minerals.I have only been taking them for a week. It will take a couple of months to figure out if it will help but right now I am noticing after a week that the tightness I have in the left hip is a little bit less. I don't know if it will work but until I can get all the second and third opinions necessary to get comfortable enough to trust a surgeon to the surgery if it works that is bonus. I am taking 40Mg percacet every 6 hours, 350Mg tramadol x 2 every 12 hours, and naproxen. I have morphine for when the pain is at a maximum. I know how you feel, I have ended up in hospital too with unbearable pain. Flatback will play a major role in pain, and so too will adult degenerative scoliosis. Try to hang in there, take one day at a time. I am at a point now, where I can tell when the muscles are in the early stage of spasm and that is when I know it is time to go easy. Have you tried ice! Last time, more than anything, laying on ice really helped. I know it sounds basic but it will stop the blood flow and it might give you relief. Hang in there, you are part of a group of very experienced people who have been here with us, and have gone through it all and can support you through. It really does help you appreciate the good or better days when we have these major flairs for sure. I hope this helps. Maggie.

From: Kate Carroll <katecarrnc (DOT) rr.com> Sent: Fri, August 6, 2010 9:05:50 PMSubject: Re: [ ] Re:desperate

Hi Bonnie, Thanks for replying and having an interest. I was inpatient at Duke as the 6mg of dilaudid I take 4x's a day wasn't touching the pain. I saw an orthopedic surgeon and had neurosurgeons look at my studies. Noone thought the MRI'S of my lumbar or cervical areas showed compression of nerves, though the discs below my C1-7 fusions and above my L2-S1 fusions are bulging. Despite there not being any indication of nerve compression I was having numbness in my feet and neuro signs that would come and go. As I stated, last Jan I had a discogram that showed the disc at L1-2 had no integrity. I can't believe it's gotten better. The intense pain in my lumbar spine comes and goes. At it's worse I am unable to cope. I am using ice, a TENs unit and 150mcg of fentenyl in addition to the high dose of dilaudid. I got on the high dose of narcotics while hospitalized for 2 mos in Apr and May for a pancreatectomy during which I developed an abd. abscess which led to a kidney removal. I've been trying to come off the narcotics and finding it impossible because of my spine pain. My dilemma is that I'm not sure the pain is from the L1-2 disc so don't know if I should risk the XLIF surgery. The orthopod at Duke told me I have flat back and I wonder if the pain could be from that. Because my tolerance to narcotics has gotten so high it could be disastrous to have surgery that didn't help and ratcheted up my pain level when there is nothing to treat it. Right now the pain has eased up and I can think clearly and consider going for 3rd and 4th opinions but when the pain gets outrageous I feel desperate and want to do anything to make it stop. This is the 1st reprieve I've had with it in over a week. I wish I understood what is going on. If you have a suggestion I'd love to hear it. Thanks much, Kate

From: Bonnie Stone

Sent: Friday, August 06, 2010 8:05 PM

Subject: [ ] Re:desperate

Hi Kate,What kind of doctor did you see when you were at Duke? An ortho? a physiatrist? an anesthesiologist/ pain doc? And may I ask, are you saying you were an inpatient for 5 days? And, as Cam asked, why didn't you seek help from the doc who did the discogram? I would like to help, if I can, but I really can't without getting this information, and anything else you can tell us that would clarify your situation. I hope you don't mind my asking.Bonnie

[Guest guest]

Hi Kate,

I hurt a bit just hearing how much you hurt, because I can truly

relate. I wish I had a simple answer for you. I certainly understand

your hesitancy to go for the recommended surgery given your past

problems and pain situation. Were the orthos at Duke specialists in

spinal deformity and specialize in dealing with flatback patients with

long, old fusions? If I were you, especially given all your

complications, I would get opinions from Dr. Bridwell and Dr. Boachie,

who are two of the most experienced surgeons and deal with the most

complicated cases and are the closest, I think, to where you live.

The key thing for you, and everyone else, is to get to the docs who

will get it right. I wish I could be more helpful, but there just are

no easy answers. Also, before you proceed with any surgery, I think

you should meet with the pain docs at the hospital where your surgery

will be performed. There are ways for you to be kept relatively

comfortable. God luck.

Bonnie

[Guest guest]

From: "maggie stevens" <maggiestevens@...>Sent: Friday, August 06, 2010 9:36 PM Subject: Re: [ ] Re:desperate

Hi Kate, My goodness, you are suffering. I read it in your words. I too am pre-revision. I have been there and am still struggling with pain of flatback and degeneration. I know this is a very silly question, but are you able to do any exercises at all, i mean gentle stretches, nothing too strenuous. I get heat and interferential therapy once per week, I have gentle exercises guided by a P.T. to do at home. I won't embarrass myself and do them in the clinic (lol). I have also just started taking supplements based on some research I have been doing, in what causes muscle spasm for people like us. Right now... here is what I have started taking... vitamin D, 400 IU.vitamin E, 400-800 IU.calcium, 1,000 mg.boron, 10 mg.silica, 1,000 mg.Magnesium, 500 mgMultivitamin, with minerals.I have only been taking them for a week. It will take a couple of months to figure out if it will help but right now I am noticing after a week that the tightness I have in the left hip is a little bit less. I don't know if it will work but until I can get all the second and third opinions necessary to get comfortable enough to trust a surgeon to the surgery if it works that is bonus. I am taking 40Mg percacet every 6 hours, 350Mg tramadol x 2 every 12 hours, and naproxen. I have morphine for when the pain is at a maximum. I know how you feel, I have ended up in hospital too with unbearable pain. Flatback will play a major role in pain, and so too will adult degenerative scoliosis. Try to hang in there, take one day at a time. I am at a point now, where I can tell when the muscles are in the early stage of spasm and that is when I know it is time to go easy. Have you tried ice! Last time, more than anything, laying on ice really helped. I know it sounds basic but it will stop the blood flow and it might give you relief. Hang in there, you are part of a group of very experienced people who have been here with us, and have gone through it all and can support you through. It really does help you appreciate the good or better days when we have these major flairs for sure. I hope this helps. Maggie.

From: Kate Carroll <katecarrnc (DOT) rr.com> Sent: Fri, August 6, 2010 9:05:50 PMSubject: Re: [ ] Re:desperate

Hi Bonnie, Thanks for replying and having an interest. I was inpatient at Duke as the 6mg of dilaudid I take 4x's a day wasn't touching the pain. I saw an orthopedic surgeon and had neurosurgeons look at my studies. Noone thought the MRI'S of my lumbar or cervical areas showed compression of nerves, though the discs below my C1-7 fusions and above my L2-S1 fusions are bulging. Despite there not being any indication of nerve compression I was having numbness in my feet and neuro signs that would come and go. As I stated, last Jan I had a discogram that showed the disc at L1-2 had no integrity. I can't believe it's gotten better. The intense pain in my lumbar spine comes and goes. At it's worse I am unable to cope. I am using ice, a TENs unit and 150mcg of fentenyl in addition to the high dose of dilaudid. I got on the high dose of narcotics while hospitalized for 2 mos in Apr and May for a pancreatectomy during which I developed an abd. abscess which led to a kidney removal. I've been trying to come off the narcotics and finding it impossible because of my spine pain. My dilemma is that I'm not sure the pain is from the L1-2 disc so don't know if I should risk the XLIF surgery. The orthopod at Duke told me I have flat back and I wonder if the pain could be from that. Because my tolerance to narcotics has gotten so high it could be disastrous to have surgery that didn't help and ratcheted up my pain level when there is nothing to treat it. Right now the pain has eased up and I can think clearly and consider going for 3rd and 4th opinions but when the pain gets outrageous I feel desperate and want to do anything to make it stop. This is the 1st reprieve I've had with it in over a week. I wish I understood what is going on. If you have a suggestion I'd love to hear it. Thanks much, Kate

From: Bonnie Stone

Sent: Friday, August 06, 2010 8:05 PM

Subject: [ ] Re:desperate

Hi Kate,What kind of doctor did you see when you were at Duke? An ortho? a physiatrist? an anesthesiologist/ pain doc? And may I ask, are you saying you were an inpatient for 5 days? And, as Cam asked, why didn't you seek help from the doc who did the discogram? I would like to help, if I can, but I really can't without getting this information, and anything else you can tell us that would clarify your situation. I hope you don't mind my asking.Bonnie

[Guest guest]

From: "maggie stevens" <maggiestevens@...>Sent: Friday, August 06, 2010 9:36 PM Subject: Re: [ ] Re:desperate

Hi Kate, My goodness, you are suffering. I read it in your words. I too am pre-revision. I have been there and am still struggling with pain of flatback and degeneration. I know this is a very silly question, but are you able to do any exercises at all, i mean gentle stretches, nothing too strenuous. I get heat and interferential therapy once per week, I have gentle exercises guided by a P.T. to do at home. I won't embarrass myself and do them in the clinic (lol). I have also just started taking supplements based on some research I have been doing, in what causes muscle spasm for people like us. Right now... here is what I have started taking... vitamin D, 400 IU.vitamin E, 400-800 IU.calcium, 1,000 mg.boron, 10 mg.silica, 1,000 mg.Magnesium, 500 mgMultivitamin, with minerals.I have only been taking them for a week. It will take a couple of months to figure out if it will help but right now I am noticing after a week that the tightness I have in the left hip is a little bit less. I don't know if it will work but until I can get all the second and third opinions necessary to get comfortable enough to trust a surgeon to the surgery if it works that is bonus. I am taking 40Mg percacet every 6 hours, 350Mg tramadol x 2 every 12 hours, and naproxen. I have morphine for when the pain is at a maximum. I know how you feel, I have ended up in hospital too with unbearable pain. Flatback will play a major role in pain, and so too will adult degenerative scoliosis. Try to hang in there, take one day at a time. I am at a point now, where I can tell when the muscles are in the early stage of spasm and that is when I know it is time to go easy. Have you tried ice! Last time, more than anything, laying on ice really helped. I know it sounds basic but it will stop the blood flow and it might give you relief. Hang in there, you are part of a group of very experienced people who have been here with us, and have gone through it all and can support you through. It really does help you appreciate the good or better days when we have these major flairs for sure. I hope this helps. Maggie.

From: Kate Carroll <katecarrnc (DOT) rr.com> Sent: Fri, August 6, 2010 9:05:50 PMSubject: Re: [ ] Re:desperate

Hi Bonnie, Thanks for replying and having an interest. I was inpatient at Duke as the 6mg of dilaudid I take 4x's a day wasn't touching the pain. I saw an orthopedic surgeon and had neurosurgeons look at my studies. Noone thought the MRI'S of my lumbar or cervical areas showed compression of nerves, though the discs below my C1-7 fusions and above my L2-S1 fusions are bulging. Despite there not being any indication of nerve compression I was having numbness in my feet and neuro signs that would come and go. As I stated, last Jan I had a discogram that showed the disc at L1-2 had no integrity. I can't believe it's gotten better. The intense pain in my lumbar spine comes and goes. At it's worse I am unable to cope. I am using ice, a TENs unit and 150mcg of fentenyl in addition to the high dose of dilaudid. I got on the high dose of narcotics while hospitalized for 2 mos in Apr and May for a pancreatectomy during which I developed an abd. abscess which led to a kidney removal. I've been trying to come off the narcotics and finding it impossible because of my spine pain. My dilemma is that I'm not sure the pain is from the L1-2 disc so don't know if I should risk the XLIF surgery. The orthopod at Duke told me I have flat back and I wonder if the pain could be from that. Because my tolerance to narcotics has gotten so high it could be disastrous to have surgery that didn't help and ratcheted up my pain level when there is nothing to treat it. Right now the pain has eased up and I can think clearly and consider going for 3rd and 4th opinions but when the pain gets outrageous I feel desperate and want to do anything to make it stop. This is the 1st reprieve I've had with it in over a week. I wish I understood what is going on. If you have a suggestion I'd love to hear it. Thanks much, Kate

From: Bonnie Stone

Sent: Friday, August 06, 2010 8:05 PM

Subject: [ ] Re:desperate

Hi Kate,What kind of doctor did you see when you were at Duke? An ortho? a physiatrist? an anesthesiologist/ pain doc? And may I ask, are you saying you were an inpatient for 5 days? And, as Cam asked, why didn't you seek help from the doc who did the discogram? I would like to help, if I can, but I really can't without getting this information, and anything else you can tell us that would clarify your situation. I hope you don't mind my asking.Bonnie

[Guest guest]

From: "Kate Carroll" <katecarr@...>Sent: Saturday, August 07, 2010 8:53 AM Subject: Re: [ ] Re:desperate

Thanks so much Maggie!!! I do use ice and it is the most effective tool I have - funny as it is so basic. I take Vit D, calcium with 80mg magnesium, multivit and fish oil but not boron, silica or the higher dose of magnesium. What have you read about them? When I'm not in an acute flare up I walk and do gentle stretches with theraband. I had liked water exercise but the last few times I tried I caused increased pain. Who are you consulting with and what are you being told? When I get my flare ups it feels like core pain and not muscle spasm. It feels like my spine has intense pressure in it and I often get a pulsing in it-like a migraine but in my spine. Do you get pain like this or know what causes it? I am having some relief today and feel I can cope but when I'm flaring I just can't imagine going on much longer. I have a wonderful 14yo daughter who I have to hang in for. We just had to cancel our mountain vacation and I hate disappointing her like this, though she couldn't be more understanding. Thanks so much for making contact. It helps to know you are out there. I'd love to know more about what your situation is and what you are learning. If you want to email me offline you can use katecarrnc (DOT) rr.com Take good care of yourself! Best, Kate

om: maggie stevens

Sent: Friday, August 06, 2010 10:35 PM

Subject: Re: [ ] Re:desperate

Hi Kate, My goodness, you are suffering. I read it in your words. I too am pre-revision. I have been there and am still struggling with pain of flatback and degeneration. I know this is a very silly question, but are you able to do any exercises at all, i mean gentle stretches, nothing too strenuous. I get heat and interferential therapy once per week, I have gentle exercises guided by a P.T. to do at home. I won't embarrass myself and do them in the clinic (lol). I have also just started taking supplements based on some research I have been doing, in what causes muscle spasm for people like us. Right now... here is what I have started taking... vitamin D, 400 IU.vitamin E, 400-800 IU.calcium, 1,000 mg.boron, 10 mg.silica, 1,000 mg.Magnesium, 500 mgMultivitamin, with minerals.I have only been taking them for a week. It will take a couple of months to figure out if it will help but right now I am noticing after a week that the tightness I have in the left hip is a little bit less. I don't know if it will work but until I can get all the second and third opinions necessary to get comfortable enough to trust a surgeon to the surgery if it works that is bonus. I am taking 40Mg percacet every 6 hours, 350Mg tramadol x 2 every 12 hours, and naproxen. I have morphine for when the pain is at a maximum. I know how you feel, I have ended up in hospital too with unbearable pain. Flatback will play a major role in pain, and so too will adult degenerative scoliosis. Try to hang in there, take one day at a time. I am at a point now, where I can tell when the muscles are in the early stage of spasm and that is when I know it is time to go easy. Have you tried ice! Last time, more than anything, laying on ice really helped. I know it sounds basic but it will stop the blood flow and it might give you relief. Hang in there, you are part of a group of very experienced people who have been here with us, and have gone through it all and can support you through. It really does help you appreciate the good or better days when we have these major flairs for sure. I hope this helps. Maggie.

From: Kate Carroll <katecarrnc (DOT) rr.com> Sent: Fri, August 6, 2010 9:05:50 PMSubject: Re: [ ] Re:desperate

Hi Bonnie, Thanks for replying and having an interest. I was inpatient at Duke as the 6mg of dilaudid I take 4x's a day wasn't touching the pain. I saw an orthopedic surgeon and had neurosurgeons look at my studies. Noone thought the MRI'S of my lumbar or cervical areas showed compression of nerves, though the discs below my C1-7 fusions and above my L2-S1 fusions are bulging. Despite there not being any indication of nerve compression I was having numbness in my feet and neuro signs that would come and go. As I stated, last Jan I had a discogram that showed the disc at L1-2 had no integrity. I can't believe it's gotten better. The intense pain in my lumbar spine comes and goes. At it's worse I am unable to cope. I am using ice, a TENs unit and 150mcg of fentenyl in addition to the high dose of dilaudid. I got on the high dose of narcotics while hospitalized for 2 mos in Apr and May for a pancreatectomy during which I developed an abd. abscess which led to a kidney removal. I've been trying to come off the narcotics and finding it impossible because of my spine pain. My dilemma is that I'm not sure the pain is from the L1-2 disc so don't know if I should risk the XLIF surgery. The orthopod at Duke told me I have flat back and I wonder if the pain could be from that. Because my tolerance to narcotics has gotten so high it could be disastrous to have surgery that didn't help and ratcheted up my pain level when there is nothing to treat it. Right now the pain has eased up and I can think clearly and consider going for 3rd and 4th opinions but when the pain gets outrageous I feel desperate and want to do anything to make it stop. This is the 1st reprieve I've had with it in over a week. I wish I understood what is going on. If you have a suggestion I'd love to hear it. Thanks much, Kate

From: Bonnie Stone

Sent: Friday, August 06, 2010 8:05 PM

Subject: [ ] Re:desperate

Hi Kate,What kind of doctor did you see when you were at Duke? An ortho? a physiatrist? an anesthesiologist/ pain doc? And may I ask, are you saying you were an inpatient for 5 days? And, as Cam asked, why didn't you seek help from the doc who did the discogram? I would like to help, if I can, but I really can't without getting this information, and anything else you can tell us that would clarify your situation. I hope you don't mind my asking.Bonnie

[Guest guest]

Bonnie, Thanks so much for writing! The docs I saw at Duke were not specialists in spinal deformity or long old fusions. I need to be seen by some of the guys written about here, no doubt. I sent an email to Dr. Bridwell through his site and am getting my head around needing to travel, which seems more possible now that I'm not in excrutiating pain. I have an appt at Hopkins with their flatback specialist Sept 1st. Thanks again, Kate

From: Bonnie Stone

Sent: Saturday, August 07, 2010 1:43 PM

Subject: [ ] Re: desperate

Hi Kate,I hurt a bit just hearing how much you hurt, because I can truly relate. I wish I had a simple answer for you. I certainly understand your hesitancy to go for the recommended surgery given your past problems and pain situation. Were the orthos at Duke specialists in spinal deformity and specialize in dealing with flatback patients with long, old fusions? If I were you, especially given all your complications, I would get opinions from Dr. Bridwell and Dr. Boachie, who are two of the most experienced surgeons and deal with the most complicated cases and are the closest, I think, to where you live. The key thing for you, and everyone else, is to get to the docs who will get it right. I wish I could be more helpful, but there just are no easy answers. Also, before you proceed with any surgery, I think you should meet with the pain docs at the hospital where your surgery will be performed. There are ways for you to be kept relatively comfortable. God luck.Bonnie

[Guest guest]

Kate, I had revision surgery with Dr. Lloyd Hey at Duke Raleigh Hospital. He used to be at Duke. I have been fortunate to be painfree since my revision three years ago. You might want to consider him for one of your opinions if he is local to you. There are a few others on this list that have seen him as well. He does initial surgeries with teens as well as surgeries with aging spines. I went to a couple of doctors in Greenville but Dr. Hey was the first to know and understand flatback. Be sure to get more than one opinion.

Peggy

[ ] Re: desperate

Hi Kate,I hurt a bit just hearing how much you hurt, because I can truly relate. I wish I had a simple answer for you. I certainly understand your hesitancy to go for the recommended surgery given your past problems and pain situation. Were the orthos at Duke specialists in spinal deformity and specialize in dealing with flatback patients with long, old fusions? If I were you, especially given all your complications, I would get opinions from Dr. Bridwell and Dr. Boachie, who are two of the most experienced surgeons and deal with the most complicated cases and are the closest, I think, to where you live. The key thing for you, and everyone else, is to get to the docs who will get it right. I wish I could be more helpful, but there just are no easy answers. Also, before you proceed with any surgery, I think you should meet with the pain docs at the hospital where your surgery will be performed. There are ways for you to be kept relatively comfortable. God luck.Bonnie

[Guest guest]

Hi Peggy,

I am confused about your advice to Kate that she should see Dr. Hey.

In your email to Kate, you said that you have been pain free since

your revision surgery with Dr. Hey. What confuses me is that I seem

to remember several times, including quite recently, when you said you

were in a lot of pain. I think you even said you were having a hard

time working because of the pain. Didn't you also say you were

getting injection to help the pain?

Bonnie

[Guest guest]

As far as my spine is concerned and the revision surgery, I have been pain free. I did have irritation at a screw head last year but one cortisone shot took care of it. But the revision surgery took care of the flatback symptoms - pinched nerves, degenerated discs, etc.

However, the new upright posture seems to be causing piriformis syndrome. The IT band on the side of my left leg has been very tight since surgery. I finally found the perfect stretch for it thanks to Dr. Oz. No one has really been able to figure out why I am having this problem with the piriformis and IT band. I finally figured it out a few months ago...when I assume an upright posture in standing or walking, it "pinches" that trigger point in my butt and sets it off. We had VBS a month ago at church. I noticed in the only picture of me that I was pitched forward a little bit again. I realized that I have continued to let my tight hamstrings pull me just slightly forward because the posture is more comfortable, i.e, I don't get the pinch in my butt!! I have been getting steriod injections in this area of my butt.

As far as painkillers, I might take one Norco a week. Nothing like I was before surgery. My fibromyalgia causes a lot more problems and difficulties than anything else at the moment. I went to bed at 11:30 pm on Saturday and didn't get up until noon yesterday. I got a couple of times to go to the bathroom and once to take my fibro meds but other than that I couldn't move or function. I totally missed all my responsibilities at church and singing with the choir at the nursing homes on Sunday afternoon. But my body just wouldn't cooperate. I have noticed that if I have a 40 hour work week, I must spend one full day, usually Mondays, in bed. It's just what the fibromyalgia is doing to me. If I still was suffering from flatback symptoms, I don't know how I would deal with anything.

Peggy

[ ] Re: desperate

Hi Peggy,I am confused about your advice to Kate that she should see Dr. Hey. In your email to Kate, you said that you have been pain free since your revision surgery with Dr. Hey. What confuses me is that I seem to remember several times, including quite recently, when you said you were in a lot of pain. I think you even said you were having a hard time working because of the pain. Didn't you also say you were getting injection to help the pain?Bonnie

[Guest guest]

Hi Kate and Maggie

I am also pre-revision, I have my revision surgery scheduled for early November,

and I completely understand your suffering with the pain of flatback. I have

severely tight muscles all over my body, from the flatback, because my body is

trying so hard to keep itself upright. My neck is in constant spasm, which

causes really tight painful jaw muscles and headaches. My shoulders and arms

have started to become affected due to pinched nerves in my neck, and I have

pain all the way along my back and abdomen, down my legs and even on the soles

of my feet when I stand. I also have sciatic pain down my right leg, which

actually started before all the other pain from the flatback - I only realise

now that it is probably related.

So I know exactly how bad it is for you, and how terribly exhausting and

difficult everything is. I have been doing pilates stretches which my physio has

taught me, and also some very basic yoga - I do these every day, sometimes twice

a day, and it really helps to get some pain relief. I also find walking helps a

lot, maybe you can try that as well - I am not sure how strong you are and if

you are able to walk?

I attended a pain management clinic, and one of the best things they taught me

was to pace yourself as much as possible - do a little bit, then rest, then do a

little bit more. I do this with every activity, like washing the dishes, or

folding the washing, even cooking supper - it means everything takes a bit

longer, but I can do a few things for myself and I also don't stir up my pain to

very horrific levels. Some days are really bad though and I do a lot less, and I

also find I have to have a rest day each week where I just do my stretches and

sit on the couch a lot.

I feel so sorry for your suffering, hang in there and try to stay positive, I

know it's really hard.

Take care

>

> Hi Kate,

> My goodness, you are suffering. I read it in your words. I too am

pre-revision.

> I have been there and am still struggling with pain of flatback and

> degeneration. I know this is a very silly question, but are you able to do any

> exercises at all, i mean gentle stretches, nothing too strenuous. I get heat

and

> interferential therapy once per week, I have gentle exercises guided by a P.T.

> to do at home. I won't embarrass myself and do them in the clinic (lol). I

have

> also just started taking supplements based on some research I have been doing,

> in what causes muscle spasm for people like us. Right now... here is what I

have

> started taking...

>

> vitamin D, 400 IU.

> vitamin E, 400-800 IU.

> calcium, 1,000 mg.

> boron, 10 mg.

> silica, 1,000 mg.

> Magnesium, 500 mg

> Multivitamin, with minerals.

>

> I have only been taking them for a week. It will take a couple of months to

> figure out if it will help but right now I am noticing after a week that the

> tightness I have in the left hip is a little bit less. I don't know if it will

> work but until I can get all the second and third opinions necessary to get

> comfortable enough to trust a surgeon to the surgery if it works that is

bonus.

> I am taking 40Mg percacet every 6 hours, 350Mg tramadol x 2 every 12 hours,

and

> naproxen. I have morphine for when the pain is at a maximum. I know how you

> feel, I have ended up in hospital too with unbearable pain. Flatback will play

a

> major role in pain, and so too will adult degenerative scoliosis. Try to hang

in

> there, take one day at a time. I am at a point now, where I can tell when the

> muscles are in the early stage of spasm and that is when I know it is time to

go

> easy. Have you tried ice! Last time, more than anything, laying on ice really

> helped. I know it sounds basic but it will stop the blood flow and it might

give

> you relief.

>

> Hang in there, you are part of a group of very experienced people who have

been

> here with us, and have gone through it all and can support you through. It

> really does help you appreciate the good or better days when we have these

major

> flairs for sure.

>

>

> I hope this helps.

> Maggie.

>

>

>

>

>

> ________________________________

> From: Kate Carroll <katecarr@...>

>

> Sent: Fri, August 6, 2010 9:05:50 PM

> Subject: Re: [ ] Re:desperate

>

>

> Hi Bonnie, Thanks for replying and having an interest. I was inpatient at

Duke

> as the 6mg of dilaudid I take 4x's a day wasn't touching the pain. I saw an

> orthopedic surgeon and had neurosurgeons look at my studies. Noone thought

the

> MRI'S of my lumbar or cervical areas showed compression of nerves, though the

> discs below my C1-7 fusions and above my L2-S1 fusions are bulging. Despite

> there not being any indication of nerve compression I was having numbness in

my

> feet and neuro signs that would come and go. As I stated, last Jan I had a

> discogram that showed the disc at L1-2 had no integrity. I can't believe it's

> gotten better. The intense pain in my lumbar spine comes and goes. At it's

> worse I am unable to cope. I am using ice, a TENs unit and 150mcg of fentenyl

> in addition to the high dose of dilaudid. I got on the high dose of narcotics

> while hospitalized for 2 mos in Apr and May for a pancreatectomy during which

I

> developed an abd. abscess which led to a kidney removal. I've been trying to

> come off the narcotics and finding it impossible because of my spine pain. My

> dilemma is that I'm not sure the pain is from the L1-2 disc so don't know if

I

> should risk the XLIF surgery. The orthopod at Duke told me I have flat back

and

> I wonder if the pain could be from that. Because my tolerance to narcotics

has

> gotten so high it could be disastrous to have surgery that didn't help and

> ratcheted up my pain level when there is nothing to treat it. Right now the

> pain has eased up and I can think clearly and consider going for 3rd and 4th

> opinions but when the pain gets outrageous I feel desperate and want to do

> anything to make it stop. This is the 1st reprieve I've had with it in over a

> week. I wish I understood what is going on. If you have a suggestion I'd love

> to hear it. Thanks much, Kate

>

> From: Bonnie Stone

> Sent: Friday, August 06, 2010 8:05 PM

>

> Subject: [ ] Re:desperate

>

> Hi Kate,

>

> What kind of doctor did you see when you were at Duke? An ortho? a

> physiatrist? an anesthesiologist/ pain doc? And may I ask, are you

> saying you were an inpatient for 5 days? And, as Cam asked, why

> didn't you seek help from the doc who did the discogram? I would like

> to help, if I can, but I really can't without getting this

> information, and anything else you can tell us that would clarify your

> situation. I hope you don't mind my asking.

>

> Bonnie

>

[Guest guest]

Hi ,Something really off happened to me on Monday. I couldnt move my right arm at all... I tried... it was the strangest thing.I used my left hand to lift my right arm, then I let it go and it just fell. I spent about 1/2 hour trying to move it and shift it and finally something clicked and i was slowly able to move it again. My biggest issue right now is that the rib hump is gettingworse, and the rotation is forcing my scapula out and my clavicle is being over extended. That pain is incredible. Last week have started a regime of magnesium, calcium, etc. to try to give me back what is deficient and help with the spasm. We will see. Monday I will start on glucosemine. I am also going to see a DC to have consultation for the spinecor brace. I am under the guidance of my PT and he will

make the final decision if it is right for me. What I am hoping is that I will get reversal of the thoracic kyphosis, pull the shoulder back, and stabilization of the lumbar. I want to see (if my PT says it is okay) if this will also help to rebalance me and perhaps reverse the flatback. The brace I know is expensive but if I get the "go ahead" I would stilllike to try it. My secret goal (and perhaps silly) is to avoid surgery with the support of this brace. I am just getting overpneumonia because my breathing is so shallow.. It too six weeks to clear and I am now feeling stronger so I am ready to trythis.I appreciate your input on pain management too! Thanks, for the message! I wish you luck too!! Maggie. From: "bekkernicole@..." <bekkernicole@...> Sent: Thu, August 12, 2010 9:52:23 PMSubject: [ ] Re:desperate

Hi Kate and Maggie

I am also pre-revision, I have my revision surgery scheduled for early November, and I completely understand your suffering with the pain of flatback. I have severely tight muscles all over my body, from the flatback, because my body is trying so hard to keep itself upright. My neck is in constant spasm, which causes really tight painful jaw muscles and headaches. My shoulders and arms have started to become affected due to pinched nerves in my neck, and I have pain all the way along my back and abdomen, down my legs and even on the soles of my feet when I stand. I also have sciatic pain down my right leg, which actually started before all the other pain from the flatback - I only realise now that it is probably related.

So I know exactly how bad it is for you, and how terribly exhausting and difficult everything is. I have been doing pilates stretches which my physio has taught me, and also some very basic yoga - I do these every day, sometimes twice a day, and it really helps to get some pain relief. I also find walking helps a lot, maybe you can try that as well - I am not sure how strong you are and if you are able to walk?

I attended a pain management clinic, and one of the best things they taught me was to pace yourself as much as possible - do a little bit, then rest, then do a little bit more. I do this with every activity, like washing the dishes, or folding the washing, even cooking supper - it means everything takes a bit longer, but I can do a few things for myself and I also don't stir up my pain to very horrific levels. Some days are really bad though and I do a lot less, and I also find I have to have a rest day each week where I just do my stretches and sit on the couch a lot.

I feel so sorry for your suffering, hang in there and try to stay positive, I know it's really hard.

Take care

>

> Hi Kate,

> My goodness, you are suffering. I read it in your words. I too am pre-revision.

> I have been there and am still struggling with pain of flatback and

> degeneration. I know this is a very silly question, but are you able to do any

> exercises at all, i mean gentle stretches, nothing too strenuous. I get heat and

> interferential therapy once per week, I have gentle exercises guided by a P.T.

> to do at home. I won't embarrass myself and do them in the clinic (lol). I have

> also just started taking supplements based on some research I have been doing,

> in what causes muscle spasm for people like us. Right now... here is what I have

> started taking...

>

> vitamin D, 400 IU.

> vitamin E, 400-800 IU.

> calcium, 1,000 mg.

> boron, 10 mg.

> silica, 1,000 mg.

> Magnesium, 500 mg

> Multivitamin, with minerals.

>

> I have only been taking them for a week. It will take a couple of months to

> figure out if it will help but right now I am noticing after a week that the

> tightness I have in the left hip is a little bit less. I don't know if it will

> work but until I can get all the second and third opinions necessary to get

> comfortable enough to trust a surgeon to the surgery if it works that is bonus.

> I am taking 40Mg percacet every 6 hours, 350Mg tramadol x 2 every 12 hours, and

> naproxen. I have morphine for when the pain is at a maximum. I know how you

> feel, I have ended up in hospital too with unbearable pain. Flatback will play a

> major role in pain, and so too will adult degenerative scoliosis. Try to hang in

> there, take one day at a time. I am at a point now, where I can tell when the

> muscles are in the early stage of spasm and that is when I know it is time to go

> easy. Have you tried ice! Last time, more than anything, laying on ice really

> helped. I know it sounds basic but it will stop the blood flow and it might give

> you relief.

>

> Hang in there, you are part of a group of very experienced people who have been

> here with us, and have gone through it all and can support you through. It

> really does help you appreciate the good or better days when we have these major

> flairs for sure.

>

>

> I hope this helps.

> Maggie.

>

>

>

>

>

> ________________________________

> From: Kate Carroll <katecarr@...>

>

> Sent: Fri, August 6, 2010 9:05:50 PM

> Subject: Re: [ ] Re:desperate

>

>

> Hi Bonnie, Thanks for replying and having an interest. I was inpatient at Duke

> as the 6mg of dilaudid I take 4x's a day wasn't touching the pain. I saw an

> orthopedic surgeon and had neurosurgeons look at my studies. Noone thought the

> MRI'S of my lumbar or cervical areas showed compression of nerves, though the

> discs below my C1-7 fusions and above my L2-S1 fusions are bulging. Despite

> there not being any indication of nerve compression I was having numbness in my

> feet and neuro signs that would come and go. As I stated, last Jan I had a

> discogram that showed the disc at L1-2 had no integrity. I can't believe it's

> gotten better. The intense pain in my lumbar spine comes and goes. At it's

> worse I am unable to cope. I am using ice, a TENs unit and 150mcg of fentenyl

> in addition to the high dose of dilaudid. I got on the high dose of narcotics

> while hospitalized for 2 mos in Apr and May for a pancreatectomy during which I

> developed an abd. abscess which led to a kidney removal. I've been trying to

> come off the narcotics and finding it impossible because of my spine pain. My

> dilemma is that I'm not sure the pain is from the L1-2 disc so don't know if I

> should risk the XLIF surgery. The orthopod at Duke told me I have flat back and

> I wonder if the pain could be from that. Because my tolerance to narcotics has

> gotten so high it could be disastrous to have surgery that didn't help and

> ratcheted up my pain level when there is nothing to treat it. Right now the

> pain has eased up and I can think clearly and consider going for 3rd and 4th

> opinions but when the pain gets outrageous I feel desperate and want to do

> anything to make it stop. This is the 1st reprieve I've had with it in over a

> week. I wish I understood what is going on. If you have a suggestion I'd love

> to hear it. Thanks much, Kate

>

> From: Bonnie Stone

> Sent: Friday, August 06, 2010 8:05 PM

>

> Subject: [ ] Re:desperate

>

> Hi Kate,

>

> What kind of doctor did you see when you were at Duke? An ortho? a

> physiatrist? an anesthesiologist/ pain doc? And may I ask, are you

> saying you were an inpatient for 5 days? And, as Cam asked, why

> didn't you seek help from the doc who did the discogram? I would like

> to help, if I can, but I really can't without getting this

> information, and anything else you can tell us that would clarify your

> situation. I hope you don't mind my asking.

>

> Bonnie

>

[Guest guest]

Hi Maggie...There is zero evidence that any permanent improvement can be obtained by adults using the Spinecor brace. According to the brace inventor:"A US study is now evaluating the use of SpineCor ttreatment for adult patients. The treatment objectives for adults are quite different to children but the same principles of postural re-education through dynamic exercise and neuromuscular feed back still apply. Treatment objectives for adults are postural improvement and pain reduction. Whilst postural improvements may lead to very small Cobb angle reductions, true correction of scoliotic curves in adults is not possible and should never be the treatment objective. Early results with adults are very positive, with both postural improvements and pain reduction in all patients to date."Having spoken to the inventor, I would personally not trust a chiropractor to fit the brace, regardless of what the chiropractor says. I believe that some chiropractors jumped on the opportunity to prescribe the brace once the inventor sold the company, as they saw it as a huge profit source. If you want one, and you're willing to pay the hefty price (some insurance companies will pay for the brace, but I think most won't), I would find a licensed orthotist who has fitted a lot of them. And, don't expect miracles. The brace may help with your pain, but isn't likely a permanent solution.Regards,> >> > Hi Kate, > > My goodness, you are suffering. I read it in your words. I too am pre-revision. > >> > I have been there and am still struggling with pain of flatback and > > degeneration. I know this is a very silly question, but are you able to do any > > > exercises at all, i mean gentle stretches, nothing too strenuous. I get heat > >and > >> > interferential therapy once per week, I have gentle exercises guided by a P.T. > > > to do at home. I won't embarrass myself and do them in the clinic (lol). I > >have > >> > also just started taking supplements based on some research I have been doing, > > > in what causes muscle spasm for people like us. Right now... here is what I > >have > >> > started taking... > > > > vitamin D, 400 IU.> > vitamin E, 400-800 IU.> > calcium, 1,000 mg.> > boron, 10 mg.> > silica, 1,000 mg.> > Magnesium, 500 mg> > Multivitamin, with minerals.> > > > I have only been taking them for a week. It will take a couple of months to > > figure out if it will help but right now I am noticing after a week that the > > tightness I have in the left hip is a little bit less. I don't know if it will > > > work but until I can get all the second and third opinions necessary to get > > comfortable enough to trust a surgeon to the surgery if it works that is bonus. > >> > I am taking 40Mg percacet every 6 hours, 350Mg tramadol x 2 every 12 hours, and > >> > naproxen. I have morphine for when the pain is at a maximum. I know how you > > feel, I have ended up in hospital too with unbearable pain. Flatback will play > >a > >> > major role in pain, and so too will adult degenerative scoliosis. Try to hang > >in > >> > there, take one day at a time. I am at a point now, where I can tell when the > > muscles are in the early stage of spasm and that is when I know it is time to > >go > >> > easy. Have you tried ice! Last time, more than anything, laying on ice really > > helped. I know it sounds basic but it will stop the blood flow and it might > >give > >> > you relief. > > > > Hang in there, you are part of a group of very experienced people who have been > >> > here with us, and have gone through it all and can support you through. It > > really does help you appreciate the good or better days when we have these > >major > >> > flairs for sure. > > > > > > I hope this helps. > > Maggie. > > > > > > > > > > > > ________________________________> > From: Kate Carroll katecarr@> > > > Sent: Fri, August 6, 2010 9:05:50 PM> > Subject: Re: [ ] Re:desperate> > > > > > Hi Bonnie, Thanks for replying and having an interest. I was inpatient at Duke > >> > as the 6mg of dilaudid I take 4x's a day wasn't touching the pain. I saw an > > orthopedic surgeon and had neurosurgeons look at my studies. Noone thought the > >> > MRI'S of my lumbar or cervical areas showed compression of nerves, though the > > > discs below my C1-7 fusions and above my L2-S1 fusions are bulging. Despite > > there not being any indication of nerve compression I was having numbness in > >my > >> > feet and neuro signs that would come and go. As I stated, last Jan I had a > > discogram that showed the disc at L1-2 had no integrity. I can't believe it's > > > gotten better. The intense pain in my lumbar spine comes and goes. At it's > > worse I am unable to cope. I am using ice, a TENs unit and 150mcg of fentenyl > > > in addition to the high dose of dilaudid. I got on the high dose of narcotics > > > while hospitalized for 2 mos in Apr and May for a pancreatectomy during which > >I > >> > developed an abd. abscess which led to a kidney removal. I've been trying to > > come off the narcotics and finding it impossible because of my spine pain. My > > > dilemma is that I'm not sure the pain is from the L1-2 disc so don't know if I > >> > should risk the XLIF surgery. The orthopod at Duke told me I have flat back > >and > >> > I wonder if the pain could be from that. Because my tolerance to narcotics has > >> > gotten so high it could be disastrous to have surgery that didn't help and > > ratcheted up my pain level when there is nothing to treat it. Right now the > > pain has eased up and I can think clearly and consider going for 3rd and 4th > > opinions but when the pain gets outrageous I feel desperate and want to do > > anything to make it stop. This is the 1st reprieve I've had with it in over a > > > week. I wish I understood what is going on. If you have a suggestion I'd love > > > to hear it. Thanks much, Kate> > > > From: Bonnie Stone > > Sent: Friday, August 06, 2010 8:05 PM> > > > Subject: [ ] Re:desperate> > > > Hi Kate,> > > > What kind of doctor did you see when you were at Duke? An ortho? a > > physiatrist? an anesthesiologist/ pain doc? And may I ask, are you > > saying you were an inpatient for 5 days? And, as Cam asked, why > > didn't you seek help from the doc who did the discogram? I would like > > to help, if I can, but I really can't without getting this > > information, and anything else you can tell us that would clarify your > > situation. I hope you don't mind my asking.> > > > Bonnie> >>

[Guest guest]

Wow . Thx for this. My PT is aware and he has some questions that I will take to them and my PT gets the final word. Do you know how much these cost? Thx soo much! :)Sent from my BlackBerry® wireless deviceFrom: "" <linda.racine@...>Sender: Date: Fri, 13 Aug 2010 04:15:59 -0000< >Reply Subject: [ ] Re:desperate Hi Maggie...There is zero evidence that any permanent improvement can be obtained by adults using the Spinecor brace. According to the brace inventor:"A US study is now evaluating the use of SpineCor ttreatment for adult patients. The treatment objectives for adults are quite different to children but the same principles of postural re-education through dynamic exercise and neuromuscular feed back still apply. Treatment objectives for adults are postural improvement and pain reduction. Whilst postural improvements may lead to very small Cobb angle reductions, true correction of scoliotic curves in adults is not possible and should never be the treatment objective. Early results with adults are very positive, with both postural improvements and pain reduction in all patients to date."Having spoken to the inventor, I would personally not trust a chiropractor to fit the brace, regardless of what the chiropractor says. I believe that some chiropractors jumped on the opportunity to prescribe the brace once the inventor sold the company, as they saw it as a huge profit source. If you want one, and you're willing to pay the hefty price (some insurance companies will pay for the brace, but I think most won't), I would find a licensed orthotist who has fitted a lot of them. And, don't expect miracles. The brace may help with your pain, but isn't likely a permanent solution.Regards,> >> > Hi Kate, > > My goodness, you are suffering. I read it in your words. I too am pre-revision. > >> > I have been there and am still struggling with pain of flatback and > > degeneration. I know this is a very silly question, but are you able to do any > > > exercises at all, i mean gentle stretches, nothing too strenuous. I get heat > >and > >> > interferential therapy once per week, I have gentle exercises guided by a P.T. > > > to do at home. I won't embarrass myself and do them in the clinic (lol). I > >have > >> > also just started taking supplements based on some research I have been doing, > > > in what causes muscle spasm for people like us. Right now... here is what I > >have > >> > started taking... > > > > vitamin D, 400 IU.> > vitamin E, 400-800 IU.> > calcium, 1,000 mg.> > boron, 10 mg.> > silica, 1,000 mg.> > Magnesium, 500 mg> > Multivitamin, with minerals.> > > > I have only been taking them for a week. It will take a couple of months to > > figure out if it will help but right now I am noticing after a week that the > > tightness I have in the left hip is a little bit less. I don't know if it will > > > work but until I can get all the second and third opinions necessary to get > > comfortable enough to trust a surgeon to the surgery if it works that is bonus. > >> > I am taking 40Mg percacet every 6 hours, 350Mg tramadol x 2 every 12 hours, and > >> > naproxen. I have morphine for when the pain is at a maximum. I know how you > > feel, I have ended up in hospital too with unbearable pain. Flatback will play > >a > >> > major role in pain, and so too will adult degenerative scoliosis. Try to hang > >in > >> > there, take one day at a time. I am at a point now, where I can tell when the > > muscles are in the early stage of spasm and that is when I know it is time to > >go > >> > easy. Have you tried ice! Last time, more than anything, laying on ice really > > helped. I know it sounds basic but it will stop the blood flow and it might > >give > >> > you relief. > > > > Hang in there, you are part of a group of very experienced people who have been > >> > here with us, and have gone through it all and can support you through. It > > really does help you appreciate the good or better days when we have these > >major > >> > flairs for sure. > > > > > > I hope this helps. > > Maggie. > > > > > > > > > > > > ________________________________> > From: Kate Carroll katecarr@> > > > Sent: Fri, August 6, 2010 9:05:50 PM> > Subject: Re: [ ] Re:desperate> > > > > > Hi Bonnie, Thanks for replying and having an interest. I was inpatient at Duke > >> > as the 6mg of dilaudid I take 4x's a day wasn't touching the pain. I saw an > > orthopedic surgeon and had neurosurgeons look at my studies. Noone thought the > >> > MRI'S of my lumbar or cervical areas showed compression of nerves, though the > > > discs below my C1-7 fusions and above my L2-S1 fusions are bulging. Despite > > there not being any indication of nerve compression I was having numbness in > >my > >> > feet and neuro signs that would come and go. As I stated, last Jan I had a > > discogram that showed the disc at L1-2 had no integrity. I can't believe it's > > > gotten better. The intense pain in my lumbar spine comes and goes. At it's > > worse I am unable to cope. I am using ice, a TENs unit and 150mcg of fentenyl > > > in addition to the high dose of dilaudid. I got on the high dose of narcotics > > > while hospitalized for 2 mos in Apr and May for a pancreatectomy during which > >I > >> > developed an abd. abscess which led to a kidney removal. I've been trying to > > come off the narcotics and finding it impossible because of my spine pain. My > > > dilemma is that I'm not sure the pain is from the L1-2 disc so don't know if I > >> > should risk the XLIF surgery. The orthopod at Duke told me I have flat back > >and > >> > I wonder if the pain could be from that. Because my tolerance to narcotics has > >> > gotten so high it could be disastrous to have surgery that didn't help and > > ratcheted up my pain level when there is nothing to treat it. Right now the > > pain has eased up and I can think clearly and consider going for 3rd and 4th > > opinions but when the pain gets outrageous I feel desperate and want to do > > anything to make it stop. This is the 1st reprieve I've had with it in over a > > > week. I wish I understood what is going on. If you have a suggestion I'd love > > > to hear it. Thanks much, Kate> > > > From: Bonnie Stone > > Sent: Friday, August 06, 2010 8:05 PM> > > > Subject: [ ] Re:desperate> > > > Hi Kate,> > > > What kind of doctor did you see when you were at Duke? An ortho? a > > physiatrist? an anesthesiologist/ pain doc? And may I ask, are you > > saying you were an inpatient for 5 days? And, as Cam asked, why > > didn't you seek help from the doc who did the discogram? I would like > > to help, if I can, but I really can't without getting this > > information, and anything else you can tell us that would clarify your > > situation. I hope you don't mind my asking.> > > > Bonnie> >>

[Guest guest]

Hi , Thanks so much for your note. You are the 1st person I've heard describe having pain on the soles of your feet which I have as well. Sometimes it is quite painful to stand on them and I always wear crocs because they hurt the least. I have wondered if I had neuritis or something of the sort as sometimes my feet actually burn but I think it's from the muscle tightness. When I recently spent 5 days at Duke for pain control there was a day I couldn't invert or evert my right foot and the doc indicated he thought I was faking it as it takes different muscles following different nerve pathways but I have noticed this coming and going since then and know I wasn't faking anything. Sometimes my muscles work and sometimes they don't. It is strange.

I do walk every day I am able. Because it's so hot in NC, I go to our local mall with all the gray hairs (which I'm rapidly becoming). I don't stretch enough. Bought a pilates machine years ago and put it away in a closet as I could no longer use it but your note may just inspire me to get it out and try again. I do pace myself, really don't have any choice as I don't last otherwise.

I will be rooting for your revision surgery in Nov. Who is doing it? I really appreciate your note and thank you for sending it. Best, Kate

From: bekkernicole@...

Sent: Thursday, August 12, 2010 9:52 PM

Subject: [ ] Re:desperate

Hi Kate and MaggieI am also pre-revision, I have my revision surgery scheduled for early November, and I completely understand your suffering with the pain of flatback. I have severely tight muscles all over my body, from the flatback, because my body is trying so hard to keep itself upright. My neck is in constant spasm, which causes really tight painful jaw muscles and headaches. My shoulders and arms have started to become affected due to pinched nerves in my neck, and I have pain all the way along my back and abdomen, down my legs and even on the soles of my feet when I stand. I also have sciatic pain down my right leg, which actually started before all the other pain from the flatback - I only realise now that it is probably related.So I know exactly how bad it is for you, and how terribly exhausting and difficult everything is. I have been doing pilates stretches which my physio has taught me, and also some very basic yoga - I do these every day, sometimes twice a day, and it really helps to get some pain relief. I also find walking helps a lot, maybe you can try that as well - I am not sure how strong you are and if you are able to walk? I attended a pain management clinic, and one of the best things they taught me was to pace yourself as much as possible - do a little bit, then rest, then do a little bit more. I do this with every activity, like washing the dishes, or folding the washing, even cooking supper - it means everything takes a bit longer, but I can do a few things for myself and I also don't stir up my pain to very horrific levels. Some days are really bad though and I do a lot less, and I also find I have to have a rest day each week where I just do my stretches and sit on the couch a lot. I feel so sorry for your suffering, hang in there and try to stay positive, I know it's really hard. Take care>> Hi Kate, > My goodness, you are suffering. I read it in your words. I too am pre-revision. > I have been there and am still struggling with pain of flatback and > degeneration. I know this is a very silly question, but are you able to do any > exercises at all, i mean gentle stretches, nothing too strenuous. I get heat and > interferential therapy once per week, I have gentle exercises guided by a P.T. > to do at home. I won't embarrass myself and do them in the clinic (lol). I have > also just started taking supplements based on some research I have been doing, > in what causes muscle spasm for people like us. Right now... here is what I have > started taking... > > vitamin D, 400 IU.> vitamin E, 400-800 IU.> calcium, 1,000 mg.> boron, 10 mg.> silica, 1,000 mg.> Magnesium, 500 mg> Multivitamin, with minerals.> > I have only been taking them for a week. It will take a couple of months to > figure out if it will help but right now I am noticing after a week that the > tightness I have in the left hip is a little bit less. I don't know if it will > work but until I can get all the second and third opinions necessary to get > comfortable enough to trust a surgeon to the surgery if it works that is bonus. > I am taking 40Mg percacet every 6 hours, 350Mg tramadol x 2 every 12 hours, and > naproxen. I have morphine for when the pain is at a maximum. I know how you > feel, I have ended up in hospital too with unbearable pain. Flatback will play a > major role in pain, and so too will adult degenerative scoliosis. Try to hang in > there, take one day at a time. I am at a point now, where I can tell when the > muscles are in the early stage of spasm and that is when I know it is time to go > easy. Have you tried ice! Last time, more than anything, laying on ice really > helped. I know it sounds basic but it will stop the blood flow and it might give > you relief. > > Hang in there, you are part of a group of very experienced people who have been > here with us, and have gone through it all and can support you through. It > really does help you appreciate the good or better days when we have these major > flairs for sure. > > > I hope this helps. > Maggie. > > > > > > ________________________________> From: Kate Carroll <katecarr@...>> > Sent: Fri, August 6, 2010 9:05:50 PM> Subject: Re: [ ] Re:desperate> > > Hi Bonnie, Thanks for replying and having an interest. I was inpatient at Duke > as the 6mg of dilaudid I take 4x's a day wasn't touching the pain. I saw an > orthopedic surgeon and had neurosurgeons look at my studies. Noone thought the > MRI'S of my lumbar or cervical areas showed compression of nerves, though the > discs below my C1-7 fusions and above my L2-S1 fusions are bulging. Despite > there not being any indication of nerve compression I was having numbness in my > feet and neuro signs that would come and go. As I stated, last Jan I had a > discogram that showed the disc at L1-2 had no integrity. I can't believe it's > gotten better. The intense pain in my lumbar spine comes and goes. At it's > worse I am unable to cope. I am using ice, a TENs unit and 150mcg of fentenyl > in addition to the high dose of dilaudid. I got on the high dose of narcotics > while hospitalized for 2 mos in Apr and May for a pancreatectomy during which I > developed an abd. abscess which led to a kidney removal. I've been trying to > come off the narcotics and finding it impossible because of my spine pain. My > dilemma is that I'm not sure the pain is from the L1-2 disc so don't know if I > should risk the XLIF surgery. The orthopod at Duke told me I have flat back and > I wonder if the pain could be from that. Because my tolerance to narcotics has > gotten so high it could be disastrous to have surgery that didn't help and > ratcheted up my pain level when there is nothing to treat it. Right now the > pain has eased up and I can think clearly and consider going for 3rd and 4th > opinions but when the pain gets outrageous I feel desperate and want to do > anything to make it stop. This is the 1st reprieve I've had with it in over a > week. I wish I understood what is going on. If you have a suggestion I'd love > to hear it. Thanks much, Kate> > From: Bonnie Stone > Sent: Friday, August 06, 2010 8:05 PM> > Subject: [ ] Re:desperate> > Hi Kate,> > What kind of doctor did you see when you were at Duke? An ortho? a > physiatrist? an anesthesiologist/ pain doc? And may I ask, are you > saying you were an inpatient for 5 days? And, as Cam asked, why > didn't you seek help from the doc who did the discogram? I would like > to help, if I can, but I really can't without getting this > information, and anything else you can tell us that would clarify your > situation. I hope you don't mind my asking.> > Bonnie>

[Guest guest]

My understanding is that SpineCorporation Ltd, the current owner of the Spinecor

technology, has a recommended maximum retail price of $3,500. However, they

cannot control what providers charge. I've heard at least one person claim that

it cost them $7,000. When chiropractors prescribe the brace, they often insist

on a series of treatments to go along with it.

--

> > >

> > > Hi Kate,

> > > My goodness, you are suffering. I read it in your words. I too am

> pre-revision.

> > >

> > > I have been there and am still struggling with pain of flatback and

> > > degeneration. I know this is a very silly question, but are you able

> to do any

> >

> > > exercises at all, i mean gentle stretches, nothing too strenuous. I

> get heat

> > >and

> > >

> > > interferential therapy once per week, I have gentle exercises guided

> by a P.T.

> >

> > > to do at home. I won't embarrass myself and do them in the clinic

> (lol). I

> > >have

> > >

> > > also just started taking supplements based on some research I have

> been doing,

> >

> > > in what causes muscle spasm for people like us. Right now... here is

> what I

> > >have

> > >

> > > started taking...

> > >

> > > vitamin D, 400 IU.

> > > vitamin E, 400-800 IU.

> > > calcium, 1,000 mg.

> > > boron, 10 mg.

> > > silica, 1,000 mg.

> > > Magnesium, 500 mg

> > > Multivitamin, with minerals.

> > >

> > > I have only been taking them for a week. It will take a couple of

> months to

> > > figure out if it will help but right now I am noticing after a week

> that the

> > > tightness I have in the left hip is a little bit less. I don't know

> if it will

> >

> > > work but until I can get all the second and third opinions necessary

> to get

> > > comfortable enough to trust a surgeon to the surgery if it works

> that is bonus.

> > >

> > > I am taking 40Mg percacet every 6 hours, 350Mg tramadol x 2 every 12

> hours, and

> > >

> > > naproxen. I have morphine for when the pain is at a maximum. I know

> how you

> > > feel, I have ended up in hospital too with unbearable pain. Flatback

> will play

> > >a

> > >

> > > major role in pain, and so too will adult degenerative scoliosis.

> Try to hang

> > >in

> > >

> > > there, take one day at a time. I am at a point now, where I can tell

> when the

> > > muscles are in the early stage of spasm and that is when I know it

> is time to

> > >go

> > >

> > > easy. Have you tried ice! Last time, more than anything, laying on

> ice really

> > > helped. I know it sounds basic but it will stop the blood flow and

> it might

> > >give

> > >

> > > you relief.

> > >

> > > Hang in there, you are part of a group of very experienced people

> who have been

> > >

> > > here with us, and have gone through it all and can support you

> through. It

> > > really does help you appreciate the good or better days when we have

> these

> > >major

> > >

> > > flairs for sure.

> > >

> > >

> > > I hope this helps.

> > > Maggie.

> > >

> > >

> > >

> > >

> > >

> > >________________________________

> > > From: Kate Carroll katecarr@

> > >

> > > Sent: Fri, August 6, 2010 9:05:50 PM

> > > Subject: Re: [ ] Re:desperate

> > >

> > >

> > > Hi Bonnie, Thanks for replying and having an interest. I was

> inpatient at Duke

> > >

> > > as the 6mg of dilaudid I take 4x's a day wasn't touching the pain.

> I saw an

> > > orthopedic surgeon and had neurosurgeons look at my studies. Noone

> thought the

> > >

> > > MRI'S of my lumbar or cervical areas showed compression of nerves,

> though the

> >

> > > discs below my C1-7 fusions and above my L2-S1 fusions are bulging.

> Despite

> > > there not being any indication of nerve compression I was having

> numbness in

> > >my

> > >

> > > feet and neuro signs that would come and go. As I stated, last Jan

> I had a

> > > discogram that showed the disc at L1-2 had no integrity. I can't

> believe it's

> >

> > > gotten better. The intense pain in my lumbar spine comes and goes.

> At it's

> > > worse I am unable to cope. I am using ice, a TENs unit and 150mcg

> of fentenyl

> >

> > > in addition to the high dose of dilaudid. I got on the high dose of

> narcotics

> >

> > > while hospitalized for 2 mos in Apr and May for a pancreatectomy

> during which

> > >I

> > >

> > > developed an abd. abscess which led to a kidney removal. I've been

> trying to

> > > come off the narcotics and finding it impossible because of my

> spine pain. My

> >

> > > dilemma is that I'm not sure the pain is from the L1-2 disc so

> don't know if I

> > >

> > > should risk the XLIF surgery. The orthopod at Duke told me I have

> flat back

> > >and

> > >

> > > I wonder if the pain could be from that. Because my tolerance to

> narcotics has

> > >

> > > gotten so high it could be disastrous to have surgery that didn't

> help and

> > > ratcheted up my pain level when there is nothing to treat it. Right

> now the

> > > pain has eased up and I can think clearly and consider going for

> 3rd and 4th

> > > opinions but when the pain gets outrageous I feel desperate and

> want to do

> > > anything to make it stop. This is the 1st reprieve I've had with it

> in over a

> >

> > > week. I wish I understood what is going on. If you have a

> suggestion I'd love

> >

> > > to hear it. Thanks much, Kate

> > >

> > > From: Bonnie Stone

> > > Sent: Friday, August 06, 2010 8:05 PM

> > >

> > > Subject: [ ] Re:desperate

> > >

> > > Hi Kate,

> > >

> > > What kind of doctor did you see when you were at Duke? An ortho? a

> > > physiatrist? an anesthesiologist/ pain doc? And may I ask, are you

> > > saying you were an inpatient for 5 days? And, as Cam asked, why

> > > didn't you seek help from the doc who did the discogram? I would

> like

> > > to help, if I can, but I really can't without getting this

> > > information, and anything else you can tell us that would clarify

> your

> > > situation. I hope you don't mind my asking.

> > >

> > > Bonnie

> > >

> >

>

[Guest guest]

Hi ...

When you say chiropractors and brace in one sentence it reminds me of the "Copes Brace" situation. Please tell me it isn't so!!

S.

[ ] Re:desperate

> > >

> > > Hi Kate,

> > >

> > > What kind of doctor did you see when you were at Duke? An ortho? a

> > > physiatrist? an anesthesiologist/ pain doc? And may I ask, are you

> > > saying you were an inpatient for 5 days? And, as Cam asked, why

> > > didn't you seek help from the doc who did the discogram? I would

> like

> > > to help, if I can, but I really can't without getting this

> > > information, and anything else you can tell us that would clarify

> your

> > > situation. I hope you don't mind my asking.

> > >

> > > Bonnie

> > >

> >

>

[Guest guest]

Thanks .I found that on the web too. My PT will be the final say, so if there is anything "off" he will be the wiser. I have to do something. I something to manage this pain. The meds. won'ttouch it anymore and the shifting is getting worse. If it is 3500 I may have to find an alternative. I just wished that I had kept my spanspint brace from my last surgery.... :)have a great day!MaggieFrom: "RSSSCOLIOSIS@..."

<RSSSCOLIOSIS@...> Sent: Sat, August 14, 2010 11:02:58 AMSubject: Re: [ ] Re:desperate

Hi ...

When you say chiropractors and brace in one sentence it reminds me of the "Copes Brace" situation. Please tell me it isn't so!!

S.

[ ] Re:desperate

> > >

> > > Hi Kate,

> > >

> > > What kind of doctor did you see when you were at Duke? An ortho? a

> > > physiatrist? an anesthesiologist/ pain doc? And may I ask, are you

> > > saying you were an inpatient for 5 days? And, as Cam asked, why

> > > didn't you seek help from the doc who did the discogram? I would

> like

> > > to help, if I can, but I really can't without getting this

> > > information, and anything else you can tell us that would clarify

> your

> > > situation. I hope you don't mind my asking.

> > >

> > > Bonnie

> > >

> >

>

[Guest guest]

I know! It's slightly different, in that the inventor did not mean for the

brace to be used by adults, although he does believe it can help SOME with pain.

Copes purposely went after adults, and made claims that were obviously

falsified. By the way, Mr. Copes went to jail for defrauding insurance

companies. Don't know if he's still there, but hopefully he's no longer trying

to treat unknowing patients who are desperate for a cure.

--

> > > >

> > > > Hi Kate,

> > > > My goodness, you are suffering. I read it in your words. I too am

> > pre-revision.

> > > >

> > > > I have been there and am still struggling with pain of flatback and

> > > > degeneration. I know this is a very silly question, but are you able

> > to do any

> > >

> > > > exercises at all, i mean gentle stretches, nothing too strenuous. I

> > get heat

> > > >and

> > > >

> > > > interferential therapy once per week, I have gentle exercises guided

> > by a P.T.

> > >

> > > > to do at home. I won't embarrass myself and do them in the clinic

> > (lol). I

> > > >have

> > > >

> > > > also just started taking supplements based on some research I have

> > been doing,

> > >

> > > > in what causes muscle spasm for people like us. Right now... here is

> > what I

> > > >have

> > > >

> > > > started taking...

> > > >

> > > > vitamin D, 400 IU.

> > > > vitamin E, 400-800 IU.

> > > > calcium, 1,000 mg.

> > > > boron, 10 mg.

> > > > silica, 1,000 mg.

> > > > Magnesium, 500 mg

> > > > Multivitamin, with minerals.

> > > >

> > > > I have only been taking them for a week. It will take a couple of

> > months to

> > > > figure out if it will help but right now I am noticing after a week

> > that the

> > > > tightness I have in the left hip is a little bit less. I don't know

> > if it will

> > >

> > > > work but until I can get all the second and third opinions necessary

> > to get

> > > > comfortable enough to trust a surgeon to the surgery if it works

> > that is bonus.

> > > >

> > > > I am taking 40Mg percacet every 6 hours, 350Mg tramadol x 2 every 12

> > hours, and

> > > >

> > > > naproxen. I have morphine for when the pain is at a maximum. I know

> > how you

> > > > feel, I have ended up in hospital too with unbearable pain. Flatback

> > will play

> > > >a

> > > >

> > > > major role in pain, and so too will adult degenerative scoliosis.

> > Try to hang

> > > >in

> > > >

> > > > there, take one day at a time. I am at a point now, where I can tell

> > when the

> > > > muscles are in the early stage of spasm and that is when I know it

> > is time to

> > > >go

> > > >

> > > > easy. Have you tried ice! Last time, more than anything, laying on

> > ice really

> > > > helped. I know it sounds basic but it will stop the blood flow and

> > it might

> > > >give

> > > >

> > > > you relief.

> > > >

> > > > Hang in there, you are part of a group of very experienced people

> > who have been

> > > >

> > > > here with us, and have gone through it all and can support you

> > through. It

> > > > really does help you appreciate the good or better days when we have

> > these

> > > >major

> > > >

> > > > flairs for sure.

> > > >

> > > >

> > > > I hope this helps.

> > > > Maggie.

> > > >

> > > >

> > > >

> > > >

> > > >

> > > >________________________________

> > > > From: Kate Carroll katecarr@

> > > >

> > > > Sent: Fri, August 6, 2010 9:05:50 PM

> > > > Subject: Re: [ ] Re:desperate

> > > >

> > > >

> > > > Hi Bonnie, Thanks for replying and having an interest. I was

> > inpatient at Duke

> > > >

> > > > as the 6mg of dilaudid I take 4x's a day wasn't touching the pain.

> > I saw an

> > > > orthopedic surgeon and had neurosurgeons look at my studies. Noone

> > thought the

> > > >

> > > > MRI'S of my lumbar or cervical areas showed compression of nerves,

> > though the

> > >

> > > > discs below my C1-7 fusions and above my L2-S1 fusions are bulging.

> > Despite

> > > > there not being any indication of nerve compression I was having

> > numbness in

> > > >my

> > > >

> > > > feet and neuro signs that would come and go. As I stated, last Jan

> > I had a

> > > > discogram that showed the disc at L1-2 had no integrity. I can't

> > believe it's

> > >

> > > > gotten better. The intense pain in my lumbar spine comes and goes.

> > At it's

> > > > worse I am unable to cope. I am using ice, a TENs unit and 150mcg

> > of fentenyl

> > >

> > > > in addition to the high dose of dilaudid. I got on the high dose of

> > narcotics

> > >

> > > > while hospitalized for 2 mos in Apr and May for a pancreatectomy

> > during which

> > > >I

> > > >

> > > > developed an abd. abscess which led to a kidney removal. I've been

> > trying to

> > > > come off the narcotics and finding it impossible because of my

> > spine pain. My

> > >

> > > > dilemma is that I'm not sure the pain is from the L1-2 disc so

> > don't know if I

> > > >

> > > > should risk the XLIF surgery. The orthopod at Duke told me I have

> > flat back

> > > >and

> > > >

> > > > I wonder if the pain could be from that. Because my tolerance to

> > narcotics has

> > > >

> > > > gotten so high it could be disastrous to have surgery that didn't

> > help and

> > > > ratcheted up my pain level when there is nothing to treat it. Right

> > now the

> > > > pain has eased up and I can think clearly and consider going for

> > 3rd and 4th

> > > > opinions but when the pain gets outrageous I feel desperate and

> > want to do

> > > > anything to make it stop. This is the 1st reprieve I've had with it

> > in over a

> > >

> > > > week. I wish I understood what is going on. If you have a

> > suggestion I'd love

> > >

> > > > to hear it. Thanks much, Kate

> > > >

> > > > From: Bonnie Stone

> > > > Sent: Friday, August 06, 2010 8:05 PM

> > > >

> > > > Subject: [ ] Re:desperate

> > > >

> > > > Hi Kate,

> > > >

> > > > What kind of doctor did you see when you were at Duke? An ortho? a

> > > > physiatrist? an anesthesiologist/ pain doc? And may I ask, are you

> > > > saying you were an inpatient for 5 days? And, as Cam asked, why

> > > > didn't you seek help from the doc who did the discogram? I would

> > like

> > > > to help, if I can, but I really can't without getting this

> > > > information, and anything else you can tell us that would clarify

> > your

> > > > situation. I hope you don't mind my asking.

> > > >

> > > > Bonnie

> > > >

> > >

> >

>

[Guest guest]

Hi

I had a revision surgery in 2001 due to kyphosis and a twisting of my

upper spine. My Dr. Vacarro besides a brace put me on a magnetic

brace. It was supposed to help with the healing of the fusion. It did

work and I still use to sometimes when the weather makes my back really

achy. Good luck .

[Guest guest]

Hi ,

As per my earlier answer, have you spoken with DrVacarro about using the VAX-D,

or whatever decompression device you are using?

Take Care, Cam