Doc visit today

[Guest guest]

Well, I went to see Dr. Hanson. And honestly, I don't know what to

think. I did find out I am fused to L2 (I wasn't sure how far down

it went) and the fusion is solid. He took a sideways x-ray and I

think my saggital balance is okay. I asked and he sort of said it

was. He didn't say it wasn't.

He said he couldn't do anything about the shoulder/top of rod pain.

He didn't want to try and take the old rod out even though it is

broken. And he wasn't concerned I can't turn my neck very well any

more. He did order a CT mylegram. I guess for the lower lumbar

spine. He said that was the only test worth anything if you have a

Harrington rod. He did say I had some arthritis in the spine. And he

wanted to see the actual MRI from two years ago. I only had the

report, and it was very difficult to get that.

So I don't know what I am going to do. Or if I will do the test. I

got the impression he thought I was okay. He really didn't recommend

anything other than the test.

Kathy

[Guest guest]

one thing to keep in mind is that 'scoliosis specialists' who are

not revision specialists usually do not tell you what is wrong since

they don't feel competent to do the surgery.

at least, that has been my experience.

You might check and see if Dr Sachs ever has office hours at one of

the Texas Back Institute locations closest to you. He did a really

great job of explaining what was wrong with me just from looking at

xrays. He wanted more tests before gettting too specific about a

fix, but he was definitely the best doctor I have seen for talking

about the problem.

>

> Well, I went to see Dr. Hanson. And honestly, I don't know what to

> think. I did find out I am fused to L2 (I wasn't sure how far down

> it went) and the fusion is solid. He took a sideways x-ray and I

> think my saggital balance is okay. I asked and he sort of said it

> was. He didn't say it wasn't.

>

> He said he couldn't do anything about the shoulder/top of rod

pain.

> He didn't want to try and take the old rod out even though it is

> broken. And he wasn't concerned I can't turn my neck very well any

> more. He did order a CT mylegram. I guess for the lower lumbar

> spine. He said that was the only test worth anything if you have a

> Harrington rod. He did say I had some arthritis in the spine. And

he

> wanted to see the actual MRI from two years ago. I only had the

> report, and it was very difficult to get that.

>

> So I don't know what I am going to do. Or if I will do the test. I

> got the impression he thought I was okay. He really didn't

recommend

> anything other than the test.

>

> Kathy

>

[Guest guest]

Dear Cristl and Kathy,

This is just me, but what you said and the questions you still have , I think this is why it's wise to get a second opinion. I know I went from doc to doc in the 80's and 90's getting various ideas of what was going on with me, and nobody I saw was a revision specialist, didn't even know what revision was at that point or what Flatback was. All I knew was that I was in a lot of pain, that my walking was limited. I was told my fusions looked fine, oh well, your rod is completely unhooked, but look at your curve, you'll always have pain, so learn to live with it, and here is some pills. So here is my only advice, follow your gut, besides doing your homework. If you feel at all uncomfortable with either the doc or the plan, if it's not making sence to you, get a second or third opinion. Then at least you have you have options to weigh. This again is just me, but I feel I lost years of being a functional human being, because I wasn't properly diagnosised. I was symptomatic in 1984, and progressively got worse till I was diagnosised in 2000, till I got to a doc who recognised Flatback. Saying this, I'm not a doc, and you may be getting totally sound advice, but knowing now what I do, I would now travel if possible to get a consultation with top revision specialist, and since you are both in Texas a trip to see Dr. Lagrone might just be a good idea. Having more than one pair of eyes looking at a problem can't hurt, maybe will confirm what this doc told you, and then you choose the doc you feel the most confidence in. I'm glad this is process is over for me, maybe the hardest part, choosing a doc. I just knew down to my toenails that Kumar was my guy, that he had a plan that I was comfortable with, that he had the skills to deliver a great outcome. Here's wishing you both that feeling, and that you will find a doc you have that confidence in. My only advice is don't settle for less.

Colorado Springs

[ ] Doc visit today

Well, I went to see Dr. Hanson. And honestly, I don't know what to think. I did find out I am fused to L2 (I wasn't sure how far down it went) and the fusion is solid. He took a sideways x-ray and I think my saggital balance is okay. I asked and he sort of said it was. He didn't say it wasn't. He said he couldn't do anything about the shoulder/top of rod pain. He didn't want to try and take the old rod out even though it is broken. And he wasn't concerned I can't turn my neck very well any more. He did order a CT mylegram. I guess for the lower lumbar spine. He said that was the only test worth anything if you have a Harrington rod. He did say I had some arthritis in the spine. And he wanted to see the actual MRI from two years ago. I only had the report, and it was very difficult to get that.So I don't know what I am going to do. Or if I will do the test. I got the impression he thought I was okay. He really didn't recommend anything other than the test.Kathy

[Guest guest]

Tonni,This sounds all too familiar to me.  Why does the doctor say you do not have Fibromyalgia?  Did he test you for pressure points?  My original GP that I had for 8 years prior to my Hep C treatment told me that he didn't believe in the Fibromyalgia diagnosis but if there ever was a classic case I had it.. but he still didn't believe in it.  He said it wasn't it.  Then I had 4 other doctors tell me it definitely was Fibromyalgia.  I switched doctors and I am being treated for it.  I described my pain as waking up in the morning feeling like somebody had beat me with a crow bar during the night.  That was the only way I could explain it.  I still have pain but it is being managed a lot better now.  

Hope that helps some...Hugs,TeriOn Tue, Jan 18, 2011 at 8:47 PM, Tonni <tbrende7@...> wrote:

 

so, saw PCP today and he says I do not have fybromyalgia or even rheumotoid arthritis.....says he has no idea what I have, for he has never heard of long term bone pain from the chemo.....seriously, I know I am not the only one here....

He says that my shaky, shrinky feeling muscles, complete body BONE aches, and constant pain, fatigue and daily questionable ability to do anything more than get dressed, 2 years after stopping treatment withoput clearing is not soemthing he was ever taught about in med school....

However, he know sI am sincere and has a plan, which is betetr than yesterday. Tordol 50 mg and Lyrica 75mg is all I have tried thus far...today he gave me Ultracet (tordol with tylenol at a higher dose than before). He also perscribed Relpax for the headaches/migranes that have now started. I am hoping they are a sinus thing that will be resolved with the outpatient surgery on the 18th. Beyond that he changed the 6 month labs GI ordered and had me do more. Plus liver was slightly enlarged at last unltrasound, so he ordered another...funny how no one mentioned that to me before.

GI and Rheumo docs are next month. Taking same list to them both and gonna find a way to get beyond this pain. It ain't depressing, as much as it p's me off to not know what I may or may not be able to do from minute to minute. I know one thing a day, unless it is a day that the Lyrica seems to give me a bit of a high, which then I get house cleaned and go down for 2 days after in pain; but hey, house gets cleaned, so well worth it considering how rare that occurs.

DOES ANYONE HAVE THIS INNER, DEEP BONE PAIN THAT FEELS LIKE AN OUTLINE OF THE INNER BONE AND THAT ENTIRE INNER AREA OF EVERY BONE FROM ELBOWS TO FINGER TIPS AND PELVIS TO TOES CONSTANTLY ACHE? If so, do you have a name for it or an idea of anythign beyond burning hot baths that can touch the pain...without knocking me out, I have a special needs son dependent on me, so must have 2 feet on the floor at all times.

Thanks fo rhearing me out.

Tonni

[Guest guest]

TonniI really believe that a Rheumo Dr will be your best bet. At least if that is an arthritis specialist. It took a very long time and a whole lot of Dr visits; but, my brother was finally diagnosed with the Poly Facial myalgia. That is worse than the Fibromyalgia. Now there is another myalgia, but I don't remember what it is called. My sister in law suffers from that one.When I had completed my 1st treatment, I was aware very quickly that I had fibromyalgia. However, the GP sent to an arthritis specialist, with no hint of what I suspected. Didn't take him long at all to diagnose me with that disorder. Gloria

so, saw PCP today and he says I do not have fybromyalgia or even rheumotoid arthritis.....says he has no idea what I have, for he has never heard of long term bone pain from the chemo.....seriously, I know I am not the only one here....

He says that my shaky, shrinky feeling muscles, complete body BONE aches, and constant pain, fatigue and daily questionable ability to do anything more than get dressed, 2 years after stopping treatment withoput clearing is not soemthing he was ever taught about in med school....

However, he know sI am sincere and has a plan, which is betetr than yesterday. Tordol 50 mg and Lyrica 75mg is all I have tried thus far...today he gave me Ultracet (tordol with tylenol at a higher dose than before). He also perscribed Relpax for the headaches/migranes that have now started. I am hoping they are a sinus thing that will be resolved with the outpatient surgery on the 18th. Beyond that he changed the 6 month labs GI ordered and had me do more. Plus liver was slightly enlarged at last unltrasound, so he ordered another...funny how no one mentioned that to me before.

GI and Rheumo docs are next month. Taking same list to them both and gonna find a way to get beyond this pain. It ain't depressing, as much as it p's me off to not know what I may or may not be able to do from minute to minute. I know one thing a day, unless it is a day that the Lyrica seems to give me a bit of a high, which then I get house cleaned and go down for 2 days after in pain; but hey, house gets cleaned, so well worth it considering how rare that occurs.

DOES ANYONE HAVE THIS INNER, DEEP BONE PAIN THAT FEELS LIKE AN OUTLINE OF THE INNER BONE AND THAT ENTIRE INNER AREA OF EVERY BONE FROM ELBOWS TO FINGER TIPS AND PELVIS TO TOES CONSTANTLY ACHE? If so, do you have a name for it or an idea of anythign beyond burning hot baths that can touch the pain...without knocking me out, I have a special needs son dependent on me, so must have 2 feet on the floor at all times.

Thanks fo rhearing me out.

Tonni

[Guest guest]

Thanks Teri.....doc doesn't believe in it and went around a few points on my arm and I had no pain in any of them, so ended there....but more than muscle pain, I have severe inner bone pain that is my true issue...feels if I strech the bones they want to wrinkle up and break...and when I use my muscles, juist clean a room or something, then they feel the same way....

Tonni Brende Wife, Mother, Grandma too...

"Life is not about waiting for the storms to pass... it's about learning how to dance in the rain."

athan, PVL, ACC, Unknown Leukodystrophy, scoliosis, ITB therapy- He can't sit alone, who wants to. He can't stand alone, who needs to. He can't speak our language, but is more understood than most. He can melt anger with a smile. He can quiet a loud room without speaking. And he can teach every single one of us that the little things are what are important. He is our gift and we are forever grateful.

http://johnathanourgift.synthasite.com/index.php

so, saw PCP today and he says I do not have fybromyalgia or even rheumotoid arthritis.....says he has no idea what I have, for he has never heard of long term bone pain from the chemo.....seriously, I know I am not the only one here....He says that my shaky, shrinky feeling muscles, complete body BONE aches, and constant pain, fatigue and daily questionable ability to do anything more than get dressed, 2 years after stopping treatment withoput clearing is not soemthing he was ever taught about in med school....However, he know sI am sincere and has a plan, which is betetr than yesterday. Tordol 50 mg and Lyrica 75mg is all I have tried thus far...today he gave me Ultracet (tordol with tylenol at a higher dose than before). He also perscribed Relpax for the headaches/migranes that have now started. I am hoping they are a sinus thing that will be resolved with the outpatient surgery on the 18th. Beyond that he changed the 6 month labs GI

ordered and had me do more. Plus liver was slightly enlarged at last unltrasound, so he ordered another...funny how no one mentioned that to me before.GI and Rheumo docs are next month. Taking same list to them both and gonna find a way to get beyond this pain. It ain't depressing, as much as it p's me off to not know what I may or may not be able to do from minute to minute. I know one thing a day, unless it is a day that the Lyrica seems to give me a bit of a high, which then I get house cleaned and go down for 2 days after in pain; but hey, house gets cleaned, so well worth it considering how rare that occurs.DOES ANYONE HAVE THIS INNER, DEEP BONE PAIN THAT FEELS LIKE AN OUTLINE OF THE INNER BONE AND THAT ENTIRE INNER AREA OF EVERY BONE FROM ELBOWS TO FINGER TIPS AND PELVIS TO TOES CONSTANTLY ACHE? If so, do you have a name for it or an idea of anythign beyond burning hot baths that can touch the pain...without knocking me out, I have a

special needs son dependent on me, so must have 2 feet on the floor at all times.Thanks fo rhearing me out.Tonni

[Guest guest]

TonniI really could not say for certain that my Fibromyalgia was as a result of tx. I have a number of friends that suffer with it; but, have never had Hep or tx. Also, I can sure deal with my own case of Fibro; but, it's harder to deal with the cancer I have as a result of the HepC.Gloria

sounds like you are even worse than I am...and these docs say tehre are no long term affects from the treatments....

Tonni Brende Wife, Mother,

Grandma too...

"Life is not about waiting for the storms to pass... it's about learning how to dance in the rain."

athan, PVL, ACC, Unknown Leukodystrophy, scoliosis, ITB therapy- He can't sit alone, who wants to. He can't stand alone, who needs to. He can't speak our language, but is more understood than most. He can melt anger with a smile. He can quiet a loud room without speaking. And he can teach every single one of us that the little things are what are important. He is our gift and we are forever grateful.

http://johnathanourgift.synthasite.com/index.php

so, saw PCP today and he says I do not have fybromyalgia or even rheumotoid arthritis.....says he has no idea what I have, for he has never heard of long term bone pain from the chemo.....seriously, I know I am not the only one here....He says that my shaky, shrinky feeling muscles, complete body BONE aches, and constant pain, fatigue and daily questionable ability to do anything more than get dressed, 2 years after stopping treatment withoput clearing is not soemthing he was ever taught about in med school....However, he know sI am sincere and has a plan, which is betetr than yesterday. Tordol 50 mg and Lyrica 75mg is all I have tried thus far...today he gave me Ultracet (tordol with tylenol at a higher dose than before). He also perscribed Relpax for the headaches/migranes that have now started. I am hoping they are a sinus thing that will be resolved with the outpatient surgery on the 18th. Beyond that he changed the 6 month labs GI

ordered and had me do more. Plus liver was slightly enlarged at last unltrasound, so he ordered another...funny how no one mentioned that to me before.GI and Rheumo docs are next month. Taking same list to them both and gonna find a way to get beyond this pain. It ain't depressing, as much as it p's me off to not know what I may or may not be able to do from minute to minute. I know one thing a day, unless it is a day that the Lyrica seems to give me a bit of a high, which then I get house cleaned and go down for 2 days after in pain; but hey, house gets cleaned, so well worth it considering how rare that occurs.DOES ANYONE HAVE THIS INNER, DEEP BONE PAIN THAT FEELS LIKE AN OUTLINE OF THE INNER BONE AND THAT ENTIRE INNER AREA OF EVERY BONE FROM ELBOWS TO FINGER TIPS AND PELVIS TO TOES CONSTANTLY ACHE? If so, do you have a name for it or an idea of anythign beyond burning hot baths that can touch the pain...without knocking me out, I have a

special needs son dependent on me, so must have 2 feet on the floor at all times.Thanks fo rhearing me out.Tonni

[Guest guest]

Okay, if your doc doesn't believe in it he's not going to give you an exam that would prove it.  My pain is both muscular and bone.  There are times I am sure my hip has broken off.  The main pressure points for Fibro create a V around your neck...  Visualize you wearing a v-necked shirt.  Press down around where that " V " would be..  if it feels like it's bruised, that's a pressure point pain.  They form the V and then go around to the back of your neck.  There are several other places as well but I hit 14 points just in the " V " area.

Hope that helps some...Hugs,TeriOn Wed, Jan 19, 2011 at 8:41 AM, Tonni Brende <tbrende7@...> wrote:

 

Thanks Teri.....doc doesn't believe in it and went around a few points on my arm and I had no pain in any of them, so ended there....but more than muscle pain, I have severe inner bone pain that is my true issue...feels if I strech the bones they want to wrinkle up and break...and when I use my muscles, juist clean a room or something, then they feel the same way....

 

Tonni Brende     Wife, Mother, Grandma too...

 

" Life is not about waiting for the storms to pass... it's about learning how to dance in the rain. "

 

athan, PVL, ACC, Unknown Leukodystrophy, scoliosis, ITB therapy- He can't sit alone, who wants to. He can't stand alone, who needs to. He can't speak our language, but is more understood than most. He can melt anger with a smile. He can quiet a loud room without speaking. And he can teach every single one of us that the little things are what are important. He is our gift and we are forever grateful.

http://johnathanourgift.synthasite.com/index.php

 

 

so, saw PCP today and he says I do not have fybromyalgia or even rheumotoid arthritis.....says he has no idea what I have, for he has never heard of long term bone pain from the chemo.....seriously, I know I am not the only one here....

He says that my shaky, shrinky feeling muscles, complete body BONE aches, and constant pain, fatigue and daily questionable ability to do anything more than get dressed, 2 years after stopping treatment withoput clearing is not soemthing he was ever taught about in med school....

However, he know sI am sincere and has a plan, which is betetr than yesterday. Tordol 50 mg and Lyrica 75mg is all I have tried thus far...today he gave me Ultracet (tordol with tylenol at a higher dose than before). He also perscribed Relpax for the headaches/migranes that have now started. I am hoping they are a sinus thing that will be resolved with the outpatient surgery on the 18th. Beyond that he changed the 6 month labs GI

ordered and had me do more. Plus liver was slightly enlarged at last unltrasound, so he ordered another...funny how no one mentioned that to me before.GI and Rheumo docs are next month. Taking same list to them both and gonna find a way to get beyond this pain. It ain't depressing, as much as it p's me off to not know what I may or may not be able to do from minute to minute. I know one thing a day, unless it is a day that the Lyrica seems to give me a bit of a high, which then I get house cleaned and go down for 2 days after in pain; but hey, house gets cleaned, so well worth it considering how rare that occurs.

DOES ANYONE HAVE THIS INNER, DEEP BONE PAIN THAT FEELS LIKE AN OUTLINE OF THE INNER BONE AND THAT ENTIRE INNER AREA OF EVERY BONE FROM ELBOWS TO FINGER TIPS AND PELVIS TO TOES CONSTANTLY ACHE? If so, do you have a name for it or an idea of anythign beyond burning hot baths that can touch the pain...without knocking me out, I have a

special needs son dependent on me, so must have 2 feet on the floor at all times.Thanks fo rhearing me out.Tonni