more symptoms

November 28, 2003

I forgot to mention that for the first year after the strep episode

I often had night sweats, and incredible near fainting dizzy spells.

To this day when I wake up in an episode, I have a pallid complexion

and big bags under my eyes.

May 30, 2005

Hi Ken,

I hope you have gone the route of getting a second opinion, and

another, and another??! This surgery thing is serious- and non-

reversable. Have you seriously done all your PT exercises? Have

you looked at:

http://www.newyorker.com/printables/fact/020408fa_FACT

I have heard from a few people who have had great relief, and

improved 'quality of life' following back/spine surgery. However, I

know far more who are still in pain and regret ever going to a

surgeon. Something I learned from being in a few pain support

groups is the doctor 'recommendation' is dependant on the specialty

that doctor practices. I wish you well in all this.

God bless you

> I am scheduled for a c5-c6 fusion later this month for the

numbness in

> my thumb, index fingers and pain on the outer portion of my arm,

with

>

> Ken... again

March 8, 2009

Dear Diane,

Cam gave you some excellent points on dealing with Flatback and family and friends, and here too is some of my experience with it.

I have found that there will be people who will surprise you during this journey for the good, and those who will plain let you down. Some people you may loose for a period of time, as they bring their own struggles with pain and percieved loss to your illness/surgery, they plain can't handle it. For some it's easy to ignore it, and maybe it will go away, kinda my Dad's way of dealing. There will be some who feel they are superior to you in your medical knowledge, and try to one up you. My Mom had a friend ( was a retired nurse on a ortho floor) who said when hearing of one of my upcoming surgeries, that they should place a harrington and I'd be fine. My Mom explained in detail how my Harrington had started a cascade of problems for me, and she listened and said" Wow, your daughter has been well schooled and has a terrific doc, and I admire that even you know so much". So people bring to any medical problem what and who they know, and will draw from that, like the brother who had a single level fusion done, or a gal they knew with a bad disc, we all do that, but with us it really doesn't work, as none of that compares. I say a cascade of problems, as it really shows that we just don't usually have one problem, we have several, and just one of them would sideline most from everyday living. The surgery to improve us too, is as said here often, Spinal Reconstruction, revision just doesn't put to ones mind really whats happening.

You are living with a spine that has been surgically altered, by a spinal hardware system, and technique, that has been found to have flaws, that resulted in pain and disability, thats real, and not to be argued with. If your friend or even hubby had one of the difficulties maybe they could deal, but add three or four, like my case was, they'd be sidelined, and flustered too. Whats hard about your Friend being a PT, is that with what training she's had, she can SEE whats going on, and I'm sure that makes the hurt worse. Sometimes those in the medical field really loose their compassion gene, lets hope she can find her's again, and maybe you are the teacher to help her, as you go about this battle. Eye opening does happen, I have though my journey seen those around me change, become more understanding, unfortunately it took seeing me go through the process. I also at every opportunity become the teacher, as those who learn what actually is going on with you become your partner in the journey. I was very careful to print out very particular info and pass it out to my family and close friends, just what I was going to be going through, my Mom was very absent for me during my Harrington Rod surgery, but from this learning was hugely in my corner and a supportive during my revision. Sometimes, it works, sometimes it doesn't, but worth a shot, and always helpful if you can add just one name to the list that will really BE THERE for you.

As to your friends comment about US that are here on the internet, in a group like ours, being the" worst case senario's", in my thought process, anyone who has had scoliosis, has endured what we did as children, the surgery, Gosh Awful contraptions such as Striker Frames and Traction Devices, and pain control that was just lacking, the casting, and pretty much giving up a year or so of normal teenage life, the deformity, and then after being told the surgery had healed us, only to find years later that all this Sh% & had come back to bite us in the ass once again, I think we all could be considered" Worst Case senario's". This isn't a branding of us, but of what we have gone through, and was done to us. If you get to go to the retreat, you will get to see members that despite all of this, have families, amazing careers, and are happy positive people. A testiment to us, we have survived, and help others going through this too see that survival is possible despite Flatback that was thrust on us. I know I sound preachy, but comments like hers brings my dander up. No one faults people with Parkinson's or other debilitating conditions for having a support group, online or not, why not us, we too have been through it, are going through it, and face even despite this new surgical journey some uncertainty what life will be like as we age. Scoliosis and it's affects are a life long journey, and for me, I'm thankful for the support and comraderie I get here. I stay all these years after surgery, to share, to give hope, and to get advice and friendship among a knowing community that I don't have to explain myself too, they get it. It gives me peace.

My best advice is share, even though right now they don't get it, as maybe with time, and seeing your journey they will. Worked in my family. Your journey through this will change harden hearts, I saw it in my own family, who were pull yourself up by the bootstraps people, and don't tell everyone your struggles. You are giving them an opportunity through your struggle to transform their thinking, to learn empathy, and believe in the time following sugery I got told more than once from people that my surgical journey did that for them.

You are not ever alone in this, even if they don't get it, or don't want to get it, we will be here, and despite nay sayers, thats the purpose we share being here, to help, to listen, and to share in a warm place.

Colorado Springs

Re: [ ] more symptoms

Dear ,

Thanks so much for sharing your experience. It is good to know I'm not alone in these symptoms, although of course I don't wish them on anyone else.

I think one of the hardest parts of this journey is feeling like everyone, including the drs., thinks I'm exaggerating, or making up symptoms because I heard them on the internet. My best friend is a P.T. and I can't even talk to her about it because I feel like she lumps me in with everyone else who struggles with back pain, and like she thinks I should just get used to it. She even thought I should not be in this group because according to her it is just the worst case scenario patients. To be honest, I am spending a lot less time with her because I feel like she just doesn't understand. I don't know what I'd do without all the support I have here.

I know my hubby tries to understand, but even he compares it to his herniated disc problem of several years ago. When I told him that my back pain was less with this new annoying leg/hip/foot thing, he just said, "Well, wouldn't you rather have that than the back pain?" I suppose so...but it is alarming when other things start going wrong! I wouldn't want to lose the use of my legs!

And my sister...I avoid the subject now since she just seems to tune out when I discuss it. My mom just gets a pained and upset attitude about it. I know she believes me, but she hates to see me struggling, so I can't really talk to her about it.

Even my P.T. today...I had to take my daughter in because a friend jumped on her back in January and she is still in pain...joint is injured...anyway, so she asked how I'm doing since I have been done with therapy a month. When I told her what was going on she was all perky like, but when you got up from your chair you were able to move quickly, so it must not hurt too much...sheesh! That was the naproxen!

So anyway, all that to say, I'm so glad to have you all to air out my concerns and to hear your advice and encouragement. Thanks, again, . Also, thanks for the P.S. about even mild flatback causing pain. Sometimes I wish those diagnosing our issues had even a clue what it is like, but I wouldn't wish it on anyone, I suppose.

Diane VDW

Michigan

Diane, your stating that when your foot thing increased, your back pain decreased....I've had that same tendency but never knew exactly how to "voice it". It is perplexing, and I'm glad (not glad that you're going through all of this) to find that other(s) have experienced that. Seems like I mentioned it to a doctor once and got a "perplexed" look from him - I felt like he was thinking that I was making it up, or something to that effect. He had no comment to offer and didn't put it in my office visit notes so I quit trying to explain it. It is interesting to hear others describe something that I've been experiencing but never "wrote it down" or knew how to articulate.

G

P.S. No matter how mild flatback is, or even if that condition never makes it into someone's diagnosis, there's still PAIN.

____________________________________________________________ Shop save big on a huge selection of brand name flooring. Click here!

March 9, 2009

Speaking of PTs, I had one in rehab at New England Baptist correct me

when I told him I'd had a split spinal cord repaired, that I'd had a

bone spur stuck right through it and Dr. Woodard had removed it and

reconstructed my dura. He informed me that he'd seen my MRI, that the

bone spur didn't go all the way through, and that he "specializes in

these sorts of things"! I knew precisely what Dr. Woodard had told me,

and just to be sure I later confirmed it with Dr. Rand. The guy was

just plain deluded as to his own ability to read an MRI -- a medical

person, mind you.

Fortunately, I didn't have a friendship with my know-it-all PT. Diane,

I don't blame you for spending less time with your PT friend. Maybe in

time she can be made to understand, if you think it's worth the effort.

Sharon

Kirkaldie wrote:

Dear Diane,

Cam gave you some excellent points on dealing with Flatback and

family and friends, and here too is some of my experience with it.

I have found that there will be people who will surprise you

during this journey for the good, and those who will plain let you

down. Some people you may loose for a period of time, as they bring

their own struggles with pain and percieved loss to your

illness/surgery, they plain can't handle it. For some it's easy to

ignore it, and maybe it will go away, kinda my Dad's way of dealing.

There will be some who feel they are superior to you in your medical

knowledge, and try to one up you. My Mom had a friend ( was a retired

nurse on a ortho floor) who said when hearing of one of my upcoming

surgeries, that they should place a harrington and I'd be fine. My Mom

explained in detail how my Harrington had started a cascade of problems

for me, and she listened and said" Wow, your daughter has been well

schooled and has a terrific doc, and I admire that even you know so

much". So people bring to any medical problem what and who they know,

and will draw from that, like the brother who had a single level fusion

done, or a gal they knew with a bad disc, we all do that, but with us

it really doesn't work, as none of that compares. I say a cascade of

problems, as it really shows that we just don't usually have one

problem, we have several, and just one of them would sideline most from

everyday living. The surgery to improve us too, is as said here often,

Spinal Reconstruction, revision just doesn't put to ones mind really

whats happening.

You are living with a spine that has been surgically altered,

by a spinal hardware system, and technique, that has been found to have

flaws, that resulted in pain and disability, thats real, and not to be

argued with. If your friend or even hubby had one of the difficulties

maybe they could deal, but add three or four, like my case was, they'd

be sidelined, and flustered too. Whats hard about your Friend being a

PT, is that with what training she's had, she can SEE whats going on,

and I'm sure that makes the hurt worse. Sometimes those in the medical

field really loose their compassion gene, lets hope she can find her's

again, and maybe you are the teacher to help her, as you go about this

battle. Eye opening does happen, I have though my journey seen those

around me change, become more understanding, unfortunately it took

seeing me go through the process. I also at every opportunity become

the teacher, as those who learn what actually is going on with you

become your partner in the journey. I was very careful to print out

very particular info and pass it out to my family and close friends,

just what I was going to be going through, my Mom was very absent for

me during my Harrington Rod surgery, but from this learning was hugely

in my corner and a supportive during my revision. Sometimes, it works,

sometimes it doesn't, but worth a shot, and always helpful if you can

add just one name to the list that will really BE THERE for you.

As to your friends comment about US that are here on the

internet, in a group like ours, being the" worst case senario's", in my

thought process, anyone who has had scoliosis, has endured what we did

as children, the surgery, Gosh Awful contraptions such as Striker

Frames and Traction Devices, and pain control that was just lacking,

the casting, and pretty much giving up a year or so of normal teenage

life, the deformity, and then after being told the surgery had healed

us, only to find years later that all this Sh% & had come back to

bite us in the ass once again, I think we all could be considered"

Worst Case senario's". This isn't a branding of us, but of what we have

gone through, and was done to us. If you get to go to the retreat, you

will get to see members that despite all of this, have families,

amazing careers, and are happy positive people. A testiment to us, we

have survived, and help others going through this too see that survival

is possible despite Flatback that was thrust on us. I know I sound

preachy, but comments like hers brings my dander up. No one faults

people with Parkinson's or other debilitating conditions for having a

support group, online or not, why not us, we too have been through it,

are going through it, and face even despite this new surgical journey

some uncertainty what life will be like as we age. Scoliosis and it's

affects are a life long journey, and for me, I'm thankful for the

support and comraderie I get here. I stay all these years after

surgery, to share, to give hope, and to get advice and friendship among

a knowing community that I don't have to explain myself too, they get

it. It gives me peace.

My best advice is share, even though right now they don't get

it, as maybe with time, and seeing your journey they will. Worked in my

family. Your journey through this will change harden hearts, I saw it

in my own family, who were pull yourself up by the bootstraps people,

and don't tell everyone your struggles. You are giving them an

opportunity through your struggle to transform their thinking, to learn

empathy, and believe in the time following sugery I got told more than

once from people that my surgical journey did that for them.

You are not ever alone in this, even if they don't get it, or

don't want to get it, we will be here, and despite nay sayers, thats

the purpose we share being here, to help, to listen, and to share in a

warm place.

Colorado Springs

Re: [ ] more symptoms

Dear ,

Thanks so much for sharing your experience. It is good to

know I'm not alone in these symptoms, although of course I don't wish

them on anyone else.

I think one of the hardest parts of this journey is feeling

like everyone, including the drs., thinks I'm exaggerating, or making

up symptoms because I heard them on the internet. My best friend is a

P.T. and I can't even talk to her about it because I feel like she

lumps me in with everyone else who struggles with back pain, and like

she thinks I should just get used to it. She even thought I should not

be in this group because according to her it is just the worst

case scenario patients. To be honest, I am spending a lot less time

with her because I feel like she just doesn't understand. I don't know

what I'd do without all the support I have here.

I know my hubby tries to understand, but even he compares it

to his herniated disc problem of several years ago. When I told him

that my back pain was less with this new annoying leg/hip/foot thing,

he just said, "Well, wouldn't you rather have that than the back

pain?" I suppose so...but it is alarming when other things start going

wrong! I wouldn't want to lose the use of my legs!

And my sister...I avoid the subject now since she just seems

to tune out when I discuss it. My mom just gets a pained and upset

attitude about it. I know she believes me, but she hates to see me

struggling, so I can't really talk to her about it.

Even my P.T. today...I had to take my daughter in because a

friend jumped on her back in January and she is still in pain...joint

is injured...anyway, so she asked how I'm doing since I have been done

with therapy a month. When I told her what was going on she was all

perky like, but when you got up from your chair you were able to move

quickly, so it must not hurt too much...sheesh! That was the naproxen!

So anyway, all that to say, I'm so glad to have you all to air

out my concerns and to hear your advice and encouragement. Thanks,

again, . Also, thanks for the P.S. about even mild flatback

causing pain. Sometimes I wish those diagnosing our issues had even a

clue what it is like, but I wouldn't wish it on anyone, I suppose.

Diane VDW

Michigan

Diane, your stating that when your foot thing increased, your

back pain decreased... .I've had that same tendency but never knew

exactly how to "voice it". It is perplexing, and I'm glad (not glad

that you're going through all of this) to find that other(s) have

experienced that. Seems like I mentioned it to a doctor once and got a

"perplexed" look from him - I felt like he was thinking that I was

making it up, or something to that effect. He had no comment to offer

and didn't put it in my office visit notes so I quit trying to explain

it. It is interesting to hear others describe something that I've been

experiencing but never "wrote it down" or knew how to articulate.

G

P.S. No matter how mild flatback is, or even if that

condition never makes it into someone's diagnosis, there's still PAIN.

____________ _________ _________ _________ _________ _________ ___

Shop

save big on a huge selection of brand name flooring. Click here!

March 9, 2009

Hi Again,

Thanks so much for the replies Cam, , and Sharon. This is why I'm

so glad to be here with you all. I do get discouraged with the lack of

understanding of friends and family. Your kind words really help.

The weird thing about my P.T. friend is that her reaction is so

uncharacteristic. She is a very compassionate gal. She's the kind who

drops off soup when you have a cold. She is generally the kind of gal

who reminds me how to repond to people who don't understand what's going

on with me (not in the pain area, but homeschooling, etc.). She'll tell

me that I need to say, " That just doesn't work out for my family " etc.,

when people try to get me to do extra stuff that with 5 kids I just don't

have time or energy for. So it is strange that she seems so distant with

me on this pain issue. I suppose I need to be more understanding of

things she is going through...she doesn't wear her issues on her sleeve,

sometimes I don't find things out about her situation until after the

fact...she had some suspect lumps, biopsies recently, and I didn't find

out until they were cleared. Now her husbands hours have been cut, and

she hasn't been able to pick up extra herself. Her parents leave the

responsibility of her grandma and aunt who are ailing to her while they

go to Arizona. SO anyway, perhaps she is simply reacting to her

struggles by not wanting to add mine to her list...She has said their

family has been praying for me. I think she may worry that a site like

this can give you more aches and pains (psychosomatic)...but she

definitely doesn't live in this body...I don't need to dream up symptoms,

I feel them. Sometimes I do RECOGNIZE the symptoms now as having to do

with my back though...as a non-medical person, I would have never linked

the hip and foot to my L5 nerve without the link on this site. But I

certainly am not psychosomatic about my symptoms.

In fact, I often think I'm getting better when the meds are working, and

get false hope that maybe things aren't as bad as I think. Like

yesterday at church I had to play keyboard. It went great through the

hour practice, and great through the first part of church. Then about

3/4 of the way pf sitting through the sermon, I start getting pain in my

back and right leg. I shift my weight a bit, and I'm okay again, then

after the adrenaline of playing the last song, I go to pack up, and I get

hit with severe pain. I have to walk on my son's arm to get to the car.

Then I get out of the car and it subsides again...and so on. Then after

more meds I'm good the rest of the day. But then I wake up this morning

and remember that this is all too real. I just wonder how I'd feel if I

went off meds! So no one can tell me this is psychosomatic.

I also wanted to say that finding support in odd places is true. My 13

year old daughter...the age where most daughters and their mom's are

fighting...has been my big advocate. She has very keen abilities of

observation and perceptiveness. She often asks me about my pain, and

also tries to pick up the slack (i.e. laundry and dishes). I try not too

put too much on her since she's so young, but she often just picks up on

needs and fills them. She would make a great counselor someday. She

often puts things into perspective for me...weird for one so young.

Sometimes I wonder where she learned it from...I'm pretty sure I didn't

teach it to her, and we don't watch T.V. so she didn't learn it on Dr.

Phil. But anyway, despite her inability to give advice medically or

practically for what steps I need to take, etc., she is one person

besides you all that I feel understands what I'm going through. (She's

had lots of hard knocks in life herself: eczema from birth, scoliosis

bracing since age 6, peanut and shellfish allergies, other allergies, so

I think she understands that feeling of being different. She's a tough

chick.)

I do think Cam's idea that action oriented people are going to be

frustrated by my situation is probably true. My husband is definitely a

problem solver kind of person, and so the fact that there are no easy

solutions makes it hard for him...I'm not surgical according to Kasten,

and even if I was, do I feel like the loss of motility from the surgery

outweighs the pain I'm in now...which still comes and goes with meds and

activities...speaking of which...bending over a turkey the other night to

package up the leftovers was a killer! Thank goodness for my massage

chair!

I agree with you, , that the success of so many of the flatbackers

in carrying on their lives post surgeries, etc., is a testament to the

rest of us that a full life after surgery is possible. That's why I'm so

glad for this group. I totally disagree with my friend's comments about

the worst case scenario people...because honestly, all of us flatbackers

who deal with this do have a debilitating condition, and as some have

posted here, people shouldn't discount our pain whether our case is mild

flatback or not. (No one would discount my brother's Crohn's disease

just because a surgery didn't cause it.) So anyway, thanks for

listening again to my rambling. I appreciate all the validation I get

here.

Thanks again, you all!

Diane VDW

Michigan

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March 9, 2009

Diane, after reading how badly your back is affecting your life, I find

it odd that your doctor doesn't consider your case to be surgical yet.

I did have a significant forward lean, and numerous limitations as to

what I could do without hurting later, but did not have any of the

nerve pain that you describe. It's very common in our population, so I

guess I was odd (or lucky). I think Dr. Rand was slightly surprised

when I asked if I could go ahead and schedule surgery, but he certainly

didn't seem to think it was unnecessary.

I know lots of people have stories of being told to live with the pain,

that surgery would be much too risky, etc, etc. But once they found a

surgeon with proven skills in flatback revision the story changed

dramatically. Your Dr. Kasten may be one of those surgeons; I haven't

a clue. But my gut feeling is that another opinion or two is probably

in order.

By the way, I don't remember how low into the lumbar your fusion

extends, but for me adding the one additional level to the sacrum

didn't make an appreciable difference in flexibility for me, once I was

all healed and finished PT. If you're only fused to L3 or L4 there may

be more mobility to lose, and of course there are no guarantees surgery

can get you pain-free. But from what people have said here, that nerve

root pain tends to respond well to surgery by a true expert.

Sharon

sdvdw@... wrote: