RE: MRI results- help please - neuropathic pain

[Guest guest]

I think Jenn may be on to something regarding your pain. I am now remembering

that after my spinal fusion I had horrible leg pain -- and I was convinced all

the muscles were seized up -- eg, it felt like I needed them massaged, like you

describe, they were in knots -- but when I went to my massage therapist she told

me my muscles were not overly tight to be causing this and that she felt it was

nerve pain. My legs would also scream with pain til I got on my oxycodone in

the morning -- I couldn't stand for more than a minute. I was just about ready

to try a drug specifically for the nerve pain as recommended by some good folks

in this group, and then everything started to subside so never did have to go

that route.

That all resolved but that was definately neuropathic pain from my nerves being

disturbed with surgery, so it sounds like it can manifest in many ways. Before

my TC surgery I used to get really bad aching down my legs, especially my left.

That too was nerve pain -- but I never had pain like electricity/tingling.

Dee

To: tetheredspinalcord

From: lilacs007@...

Date: Sat, 12 Mar 2011 04:55:44 -0800

Subject: Re: MRI results- help please -

Sorry, now I'm confused.

The neuropathic pain was described to me (initially when it started in May) as

pain like electricity. I do get the spasm pain but that is super rare (once a

month) when I do get it I am in it for 3-5 hours, typically one arm or leg.

I don't know why the arm?

The other pain is a burning and a feeling like I am bruised everywhere. On top

of that I have hundreds of knots.

I really do mean hundreds.

Would this all be neuropathic pain?

>,

>

>The pain you describe sounds like neuropathic pain. After my second and

>third surgeries, my neuropathy went through the roof. After #2, I couldn't

>stand to have the sheets touch my lower legs. The worst of it lasted about

>a month. Before my third surgery, my neuropathy was at an all time high.

>Just horrible. The spasms were very intense as well. All the muscles would

>contract at one time in my legs and hold for about 15-30 seconds. If I was

>sitting down, my legs would straighten out with every muscle contracted.

>Talk about the worst charlie horse ever!

>

>Since that third surgery, my neuropathy is much better than before surgery,

>but it still feels like my lower legs are burning and tingling. I have

>tried every Rx on the market for neuropathy and I can't find one that works

>or works and has side effects that I can tolerate. Oh, or that I can afford.

>Cymbalta worked the best for me, but I can't afford it and insurance either

>won't pay, or even if it does, it sends me into the coverage gap at which

>point I have to pay 100% for both the Cymbalta and all my other meds. Just

>can't afford that! So, I have no choice but to grin and bear it.

>

>Jenn

>

>On Fri, Mar 11, 2011 at 1:31 PM, Dybowski wrote:

>

>>

>>

>> It's just so hard to do. The pain meds work on the back pain, but I have

>> other things that have developed.That is what is really bothering me.

>> I can't even touch my legs without feeling like I am touching a bruise, my

>> butt feels the same way, very hard to sit.

>>

>>

>>

>

>

>

[Guest guest]

Hi all,

 

I have the leg pain daily and at times it feels numb.  I have a hard time

sitting, standing and walking.  I also have the spasms. The only time I feel any

sort of relief is when I'm lying in the bed.  This is why I'm having the

surgery. This is no way to live.

>

>>

>>

>> It's just so hard to do. The pain meds work on the back pain, but I have

>> other things that have developed.That is what is really bothering me.

>> I can't even touch my legs without feeling like I am touching a bruise, my

>> butt feels the same way, very hard to sit.

>>

>>

>>

>

>

>

[Guest guest]

Kellie,

Have you tried any meds for the neuropathy and spasms? Baclofen is probably

the most commonly used Rx for spasms in people with SCI/D. It is a very

effective Rx. As I'm sure you've seen on the list, there are TONS of meds

for neuropathy. The only problem with finding one that works is that it is

a matter of trial and error and a trial of one med can take 4 weeks (2 weeks

gradual increase to therapeutic level and 2 weeks to wean off of it if it

didn't work).

I hope the surgery will help with your neuropathy. Its possible that even

if it ultimately will help, it will get worse before it gets better. Nerves

tend to rebel when they are messed with. I remember after my second surgery,

I couldn't even stand to have the sheet touch my lower legs. But it did get

better as I healed. Unfortunately, it never went away. Pain is hard to treat

with surgery. Surgery is better at stopping neurological decline, but

stopping surgery - sometimes it works, sometimes it doesn't and sometimes it

makes it worse. If pain is your only symptom, I would make sure you have

exhausted the possibilities to control it medically before surgery (just

MHO).

One thing I learned from my surgeries is that every time I thought my pain

was horrible and I couldn't continue living like that (I used the same

phrase you did before my surgeries) and couldn't imagine it getting worse

and decided I needed to do surgery - low and behold, it always managed to

get worse. I think back to before my first surgery and remember thinking

that I needed the surgery because I was in pain 24/7 and I couldn't imagine

having that for the rest of my years. It was interfering with my career.

Surely, I thought, I need to do the surgery to put an end to this. I

couldn't take it. Because if I had to live like that for the rest of my

life, there was no point. 6 months after my first surgery, my pain was worse

than before. I decided no more surgery.

But, 1 1/2 yrs passed and even though I wasn't experiencing neuro decline, I

thought the pain was intolerable. By that point I was on chronic pain meds

(although a fairly low dose). It was getting harder to work. I repeated

the same thing to myself that I did before surgery 1 (you think I would have

learned my lesson). Same thing after that surgery, but then I lost function

in one of my legs and the neuropathy was through the roof (remember my

comment about the sheets). I ended up getting the function back, and the

neuropathy subsided a little, but that was only before everything came back

with a vengance. Only this time it was coupled with rapid neurological

decline. The pain was so bad. And coupled with the loss of function - so

much so I had to quit driving and couldn't do anything at home but lay in

bed or in my recliner b/c I could hardly walk (because I had lost so much

function) that I became suicidal.

That led to surgery 3. Not for pain control. I gave up on that, but b/c I

was losing so much function so rapidly. Surgery 3 paralyzed me.

I don't say this to scare you, but to tell you a story from someone who has

been where you are. And that pain can get worse and surgery doesn't always

fix it (not that it never does, but it is also not a guarantee), in which

case you will be back to trying to manage it medically.

Just wanted to share my story with you.

Jenn

>

>

> Hi all,

>

> I have the leg pain daily and at times it feels numb. I have a hard time

> sitting, standing and walking. I also have the spasms. The only time I feel

> any sort of relief is when I'm lying in the bed. This is why I'm having the

> surgery. This is no way to live.

>

[Guest guest]

Kellie, I've got the same thing going.  Within just over a year I'v gone from

being fairly active to hurting if I do more that just lay around.  I have to

wear a soft brace on my right foot and ankle or I risk rolling.  Waiting to

find out this week where and when I'm having surgery.  Wishing you the best

with yours.

>

>>

>>

>> It's just so hard to do. The pain meds work on the back pain, but I have

>> other things that have developed.That is what is really bothering me.

>> I can't even touch my legs without feeling like I am touching a bruise, my

>> butt feels the same way, very hard to sit.

>>

>>

>>

>

>

>

[Guest guest]

Jenn,

You wrote the below so perfectly. It's strange for those that experience the

" it can't get worse " phenomenon - you think you can't stand it, it can't be

worse, then lo-and-behold, it gets worse - then it again reaches a higher value

than before the surgery and again you think you can't imagine living with this

pain and it can't get worse, and it does get worse again. I chased my tail with

five untetherings in eight-nine years and (hope) that I've learned my lesson

that it can get worse, has gotten worse, and that with pain/decline and life -

things can get worse and you'd be surprised what you can learn to live with and

around.

When I think back to the first pains/aches that started after my initial

untethering and what I've experienced since; I know I'd give my right arm to go

back to that pain that I started with years ago.

Ahhh - if only we had a magic ball for anything that's relative in our lives so

we could see our future and realize it can and will get worse for some and come

up with a plan before that happens.

Kathy

One thing I learned from my surgeries is that every time I thought my pain

was horrible and I couldn't continue living like that (I used the same

phrase you did before my surgeries) and couldn't imagine it getting worse

and decided I needed to do surgery - low and behold, it always managed to

get worse. I think back to before my first surgery and remember thinking

that I needed the surgery because I was in pain 24/7 and I couldn't imagine

having that for the rest of my years. It was interfering with my career.

Surely, I thought, I need to do the surgery to put an end to this. I

couldn't take it. Because if I had to live like that for the rest of my

life, there was no point. 6 months after my first surgery, my pain was worse

than before. I decided no more surgery.

[Guest guest]

Kellie, I'm so sorry you are in such pain and so frustrated with your life right

now. I have to be honest...when I read this I said to myself, " Hey! Thats how I

live! " and I have had surgery   I know that this is a difficult decision for

all of you that havent had surgery yet, I dont mean to make it harder. I just

want you to understand that surgery may not fix what you are experiencing. In

the end, it will be lifestyle change, med or supplement management, diet,

exercise and a HUGE shift in perspective, expectations, dreams, hobbies, wants,

needs, self-worth (beliefs about what makes " you " , who you really are or what

you can or cant do?) that will make life worth living. For me, the biggest

pain reliever is distraction...change of focus. It may only be for moments at a

time but that is what works for me. I have pain when I wake to when I wake, all

the time. It is up to me to find ways to escape from it...in my mind. As someone

who worked all my

life (2 jobs at age eleven), was extremely active..camping, hiking, biking,

dancing, traveling etc the loss of all that was devastating. Just like someone

who is seriously injured in an accident (think Reeves) there is a

period of intense grieving that one must go through, life changes, for us it

happens gradually so I think its harder for us to admit that the same type of

changes must happen. Have I ever been suicidal, you betcha! There were moments

when I was sure I just could not make it to the next, that I was positive that I

could not and would not live like this. Those are defining moments. The thing

is, I did make it to the next moment. I did find some relief, even briefly but

relief none the less. I did find that using a powerchair or cane or walker

helped. I did find that although I cant do roadtrips anymore I can get on the

computer and see places I have never seen. I did find that although I can no

longer go dancing, I can still

enjoy music. I did find that I am more than a nurse, a mother, a grandmother,

a caretaker. I found that life, although redefined, is worth living. So, I truly

truly hope that your surgery helps you! With all my being But, if by chance

it gets worse before it gets better or if it just gets worse, hang in there and

redefine your life.

>

>>

>>

>> It's just so hard to do. The pain meds work on the back pain, but I have

>> other things that have developed.That is what is really bothering me.

>> I can't even touch my legs without feeling like I am touching a bruise, my

>> butt feels the same way, very hard to sit.

>>

>>

>>

>

>

>

[Guest guest]

I'm a bit in shock right now after reading this.  I really don't know what to

say.

>

>>

>>

>> It's just so hard to do. The pain meds work on the back pain, but I have

>> other things that have developed.That is what is really bothering me.

>> I can't even touch my legs without feeling like I am touching a bruise, my

>> butt feels the same way, very hard to sit.

>>

>>

>>

>

>

>

[Guest guest]

,

Your situation is a little different (when it comes to surgical decision) in

the sense that you are experiencing new onset neuro deficits. Neuro decline

is an undisputed indicator for surgical intervention to prevent further

decline and loss of function. The point of surgery is to prevent neuro

deficits, not to get the function back. Granted, it can (and has happened),

but that is just a bonus.

Good luck with your upcoming surgery.

Jenn

On Sun, Mar 13, 2011 at 7:58 AM, susan radzilowicz wrote:

>

>

> Kellie, I've got the same thing going. Within just over a year I'v gone

> from being fairly active to hurting if I do more that just lay around. I

> have to wear a soft brace on my right foot and ankle or I risk rolling.

> Waiting to find out this week where and when I'm having surgery. Wishing

> you the best with yours.

>

>

[Guest guest]

Kellie,

I think it is easy to be shocked. I know I would have been. It seems like

the surgeons make the surgery sound like a cake walk and that its guaranteed

to fix pain and arrest neuro decline. I know my first neurosurgeon made it

sound that way. Kind of like " snip snip and you'll be cured. " Between that

attitude about the surgery and a big list of scary things that would happen

to me if I didn't do the surgery, it seemed like a no brainer. I know if I

would have heard my story, it would have been a huge shock, thinking that it

sounds so different that what my MD said would/could happen. He never even

mentioned the possibility of retether. I didn't even know it was possible

until I joined this list wondering why my pain had returned 4 months later.

At least if you decide to do the surgery, you will go in with your eyes wide

open.

Jenn

>

>

> I'm a bit in shock right now after reading this. I really don't know what

> to say.

>

>

> >

> >>

> >>

> >> It's just so hard to do. The pain meds work on the back pain, but I have

> >> other things that have developed.That is what is really bothering me.

> >> I can't even touch my legs without feeling like I am touching a bruise,

> my

> >> butt feels the same way, very hard to sit.

> >>

> >>

> >>

> >

> >

> >

[Guest guest]

I have heard that he does not much believe in the diagnosis of TC. I think it

has something to do with the Doctors in NY that were investigated for doing

surgeries that were not needed. But I am not sure of any of this, but he does

not have experience with adults.

> > >

> > > >

> > > >

> > > > Kellie, I've got the same thing going. Within just over a year I'v gone

> > > > from being fairly active to hurting if I do more that just lay around. I

> > > > have to wear a soft brace on my right foot and ankle or I risk rolling.

> > > > Waiting to find out this week where and when I'm having surgery. Wishing

> > > > you the best with yours.

> > > >

> > > >

> > >

> > >

> > >

[Guest guest]

I agree with - get another opinion -- and another, if you have to.

When I was 21, I was Dx with a brain tumor. The original neurosurg said that

if I didn't let him to the needle biopsy, likely followed by surgery, I

wouldn't live to see 21. Something just didn't sit right with me - sticking

a needle into an unknown mass that had already hemorrhaged and had

apparently done so before the one that sent me to the ER. Just seemed like a

bad thing to do - stick a needle into something deep in my brain that

already had a propensity to bleed out (without a hole caused by a needle).

I checked out AMA. His partner referred me to a radiation oncologist for a

new treatment. I saw him. Total a$$, but he Dx me with a cavernous

hemangioma and said to leave it alone. He also said that if I had let the

other neurosurg do the needle biopsy, I would have been able to pick my own

vegetable.

I got about 3 more opinions from across the country. And this was when I

had to mail big thick packs of films around. You should be able to get

opinions from docs like Frim and Fuchs without having to visit them. you can

send them your MRIs and medical reports. They will tell you if they think

you actually need to come for a visit or if they can tell from your MRI that

you don't have TC or you do (or if they think you do, but need to be seen in

person), etc.

I DEFINITELY would NOT have surgery or injection without knowing what your

Dx is. I know its frustrating. Been there - and with a condition that they

said would kill me if I didn't treat it right away. So, I totally

understand.

Jenn

>

>

> I saw another ped neuro today (I had seen him last year, but switched to an

> adult sb clinic....who's neuro doesnt take my insurance) and he's not

> convinced I have a tsc. He's sending me to an adult neuro for an evaluation

> before he considers doing 'exploratory' surgery on me. I'm so confused and

> frustrated right now. The sb clinic neuro is all ready to operate, she said

> it's scar tissue and that I have a small cyst and continuing neuro deficits.

> the neuro I saw today is a highly regarded surgeon at one of nyc top

> hospitals. he doesn't see anything significant on the mri and feels that i

> still have a lot of strength in my legs and after all... i am getting older.

> I'm just so afraid that if I don't do something soon I will continue to

> decline to a point where there's no chance of recovering any normal function

> at all. To me the symptoms are pretty clear, sudden onset pain, decline in

> muscle strength, increased lack of sensation, slightly worsening bladder

> function. ???????

>

[Guest guest]

Oh my goodness Jenn! So happy you listened to your " gut " and didnt let them do

that needle biopsy. I agree, getting numerous opinions is a PITA and costly but

in the end, well worth the effort!  

>

>

> I saw another ped neuro today (I had seen him last year, but switched to an

> adult sb clinic....who's neuro doesnt take my insurance) and he's not

> convinced I have a tsc. He's sending me to an adult neuro for an evaluation

> before he considers doing 'exploratory' surgery on me. I'm so confused and

> frustrated right now. The sb clinic neuro is all ready to operate, she said

> it's scar tissue and that I have a small cyst and continuing neuro deficits.

> the neuro I saw today is a highly regarded surgeon at one of nyc top

> hospitals. he doesn't see anything significant on the mri and feels that i

> still have a lot of strength in my legs and after all... i am getting older.

> I'm just so afraid that if I don't do something soon I will continue to

> decline to a point where there's no chance of recovering any normal function

> at all. To me the symptoms are pretty clear, sudden onset pain, decline in

> muscle strength, increased lack of sensation, slightly worsening bladder

> function. ???????

>

[Guest guest]

heading to another " adult " neuro this Wednesday, Hopefully he will have a strong

opinion one way or another.

>

>

> I saw another ped neuro today (I had seen him last year, but switched to an

> adult sb clinic....who's neuro doesnt take my insurance) and he's not

> convinced I have a tsc. He's sending me to an adult neuro for an evaluation

> before he considers doing 'exploratory' surgery on me. I'm so confused and

> frustrated right now. The sb clinic neuro is all ready to operate, she said

> it's scar tissue and that I have a small cyst and continuing neuro deficits.

> the neuro I saw today is a highly regarded surgeon at one of nyc top

> hospitals. he doesn't see anything significant on the mri and feels that i

> still have a lot of strength in my legs and after all... i am getting older.

> I'm just so afraid that if I don't do something soon I will continue to

> decline to a point where there's no chance of recovering any normal function

> at all. To me the symptoms are pretty clear, sudden onset pain, decline in

> muscle strength, increased lack of sensation, slightly worsening bladder

> function. ???????

>

[Guest guest]

Hi Jenn, What is MSCIC?  The ped neuro gave me three names of adult neuro's and

out of the 3, the one I chose actually mentioned sb/tc as one of his

specialties.  I will question him regarding his experience with this.  Mine

would be post surgical, as I had a repair done shortly after birth.  I'm still

trying to understand why the neuro is questioning if I have TC or not.  He

suggested that I have neurogenic claudication. 

 

" Neurogenic claudication shows up as pain in the low back and leg. The pain may

feel like muscle cramps. It is brought on during walking and/or extending the

spine backwards (arching your back), and it is relieved by stooping, sitting,

and/or bending forward at the waist.  Other symptoms include pins and needles

going down your leg, and weakness. Bowel or bladder problems may occur if the

neurogenic claudication is severe .  Neurogenic claudication is a syndrome, or

collection of symptoms, associated with degenerative spinal stenosis in the

lumbar spine. It is often related to posture. The combination of the stenosis

with certain back postures such as arching puts pressure on lumbosacral nerve

roots and/or the cauda equina. "  

 

Sure, some of the symptoms are similar however, was he not listening when I

told him it bothers me to sit when I have to lean forward...like working on a

computer or sitting to eat.  Or that any activity the Pt's had me do increased

my symptoms.  I specifically told him I have burning pain in my back and if I

lean forward it starts to move up my spine. 

 

Well hopefully I will have a better idea after I see the new neuro on

Wednesday.  I'm still following up with my insurance company to see if they

will continue to negotiate with the other surgeon.

 

 

Sue

 

>

>

> heading to another " adult " neuro this Wednesday, Hopefully he will have a

> strong opinion one way or another.

>

[Guest guest]

Sue,

MSCIC is Model Spinal Cord Injury Center. The following website lists all

the MSCICs:

http://www.spinalinjury.net/html/_model_centers.html

I wonder why the pedi neurosurgeon would have given you the name of adult

neurosurgeons, unless he doesn't operate on adults. Some pedi neurosurgs

will not operate on adults, but since NTDs are generally a pediatric

problem, they have the most experience and expertise dealing with them.

There are some adult neurosurgeons that like to think that they are NTD

specialists because they have actually done these surgeries on adults, but I

don't know of any adult neurosurgeons that do these surgeries on a regular

basis.

The surgeon that did my first surgery said that I was so lucky to have found

him because he actually had a " lot " of experience with NTDs - he had done a

whopping 12 untetherings. I thought I had struck gold. How lucky was I? I

never would have thought to go to a pedi neurosurgeon - they didn't see

adults. If only I would have been on this list back then. Most pedi

neurosurgeons will not see adults, and they assume that because they don't,

others don't. But there are those that will for these conditions that are

generally pediatric in nature.

The problem with diagnosing a back condition based on symptoms is that

pretty much every spine condition has the same symptoms - pain, nerve pain,

loss or change in neurological function below the level of the injury. It is

possible for someone with TC to have other spine conditions, but a

symptomatic retether should be ruled out first, and is probably more likely

than having another rare condition of the spine (it can and does happen, but

the more likely should be investigated first) - when you hear hoof beats,

think horses, not zebras. There could be a zebra, but more likely it will be

a horse.

A symptomatic retether can be very tricky to Dx, even by someone that has a

lot of experience with them. After someone has had surgery to untether the

cord, it will generally always appear retethered due to scar tissue and

Dx-ing a symptomatic retether is often done based on symptoms alone. The Dx

of my initial retether was based on symptoms alone. He couldn't tell based

on the scan (b/c of scar tissue), but he was confident that was the cause of

my problems based on the symptoms I reported. Sure enough, I had a very

severe retether. There was significantly more scar tissue than he ever

expected. He said it looked like someone poured a bottle (or 2 or 10) of

super glue in my back.

You said that neurogenic claudication is caused by stenosis. Does your MRI

show stenosis? If it does, then I suppose it is possible that this could be

what is causing your symptoms, but if not, then I would say it is even more

likely that your problems are caused by a symptomatic retether.

Since you have a recent MRI, I would contact Dr. Frim and Fuchs and see

about having them look at your films and see what they think. They are very

skilled at identifying retethers. I would bet that Shriners would also

review your films free of charge. Another good place to check into to review

your films would be U of Miami - they have a very good SCI/D program there.

Jenn

On Mon, Mar 21, 2011 at 7:19 AM, susan radzilowicz wrote:

>

>

> Hi Jenn, What is MSCIC? The ped neuro gave me three names of adult neuro's

> and out of the 3, the one I chose actually mentioned sb/tc as one of his

> specialties. I will question him regarding his experience with this. Mine

> would be post surgical, as I had a repair done shortly after birth. I'm

> still trying to understand why the neuro is questioning if I have TC or

> not. He suggested that I have neurogenic claudication.

>

> " Neurogenic claudication shows up as pain in the low back and leg. The pain

> may feel like muscle cramps. It is brought on during walking and/or

> extending the spine backwards (arching your back), and it is relieved by

> stooping, sitting, and/or bending forward at the waist. Other symptoms

> include pins and needles going down your leg, and weakness. Bowel or bladder

> problems may occur if the neurogenic claudication is severe . Neurogenic

> claudication is a syndrome, or collection of symptoms, associated with

> degenerative spinal stenosis in the lumbar spine. It is often related to

> posture. The combination of the stenosis with certain back postures such as

> arching puts pressure on lumbosacral nerve roots and/or the cauda equina. "

>

>

> Sure, some of the symptoms are similar however, was he not listening when I

> told him it bothers me to sit when I have to lean forward...like working on

> a computer or sitting to eat. Or that any activity the Pt's had me do

> increased my symptoms. I specifically told him I have burning pain in my

> back and if I lean forward it starts to move up my spine.

>

> Sue

>

[Guest guest]

Jenn, I looked at the website and of course in NJ kessler is on there.....that

is where I was going for the adult spina bifida clinic....and was supposed to

have rehab after surgery.    I'd have to look into the NY one.  When i first

contacted the ped neuro he said he treats adults, but now I'm beginning to

question it.  I'm really just so sick of ALL of this right now. 

I know that I'm lucky to have gotten this far with relatively few problems, but

as undramatic as they may seem, they are a significant change to me and my

lifestyle.That is what I want the dr's to understand.  As far as the mri goes,

the report specific mentions in the thorasic area that there is no evidence of

stenosis. and the lumbar other than where i have the sb is normal.  I guess

the dr will have to review the films himself.  I will certainly consider

sending the mri off to one of the other dr's if I am not completely satisfied

with Wednesdays visit.  Thanks to everyone for all the info. 

>

>

> Hi Jenn, What is MSCIC? The ped neuro gave me three names of adult neuro's

> and out of the 3, the one I chose actually mentioned sb/tc as one of his

> specialties. I will question him regarding his experience with this. Mine

> would be post surgical, as I had a repair done shortly after birth. I'm

> still trying to understand why the neuro is questioning if I have TC or

> not. He suggested that I have neurogenic claudication.

>

> " Neurogenic claudication shows up as pain in the low back and leg. The pain

> may feel like muscle cramps. It is brought on during walking and/or

> extending the spine backwards (arching your back), and it is relieved by

> stooping, sitting, and/or bending forward at the waist. Other symptoms

> include pins and needles going down your leg, and weakness. Bowel or bladder

> problems may occur if the neurogenic claudication is severe . Neurogenic

> claudication is a syndrome, or collection of symptoms, associated with

> degenerative spinal stenosis in the lumbar spine. It is often related to

> posture. The combination of the stenosis with certain back postures such as

> arching puts pressure on lumbosacral nerve roots and/or the cauda equina. "

>

>

> Sure, some of the symptoms are similar however, was he not listening when I

> told him it bothers me to sit when I have to lean forward...like working on

> a computer or sitting to eat. Or that any activity the Pt's had me do

> increased my symptoms. I specifically told him I have burning pain in my

> back and if I lean forward it starts to move up my spine.

>

> Sue

>

[Guest guest]

,

I would get a copy of your MRI. This was more important when they were on

film (I've had too many hospitals lose them, even sending the originals to

another facility only to have them lose the originals - Grrrr). But,

whenever I have a MRI or CT done, I always request my own CD before I leave.

Most of my most recent MRIs, they had me the disc to take to my MD when I

walk out the door, so I can copy it on my own at home. But, I always tell

the tech that I want my own CD. Typically they run between $5-10, but I

have been lucky the last few times that when I tell the tech, she just gives

me one and doesn't charge me. If you go back later and ask to get one from

the receptionist, odds are that they are going to charge you. Granted, the

cost is MUCH less now, than when they were on film ($7-10 per page and even

just a L-spine MRI w and w/o contrast can be upwards of 10 pages, let alone

when I had my full brain and spine MRI - that was a pricey one!).

Kessler is a great facility. They should have docs that are familiar with

TC, bc as I mentioned before, TC can happen after any spine surgery,

including in someone with a traumatic SCI that was repaired. Even if someone

else does the surgery, that is definitely where you want to do your rehab -

not at a facility filled primarily with hip and knee replacements and

strokes.

Good luck with the consult! I hope this guy turns out to be good. The hard

part dealing with neurosurgeons, especially adult neurosurgeons, is that

they tend to have the personality and bedside manner of concrete. I have

noticed that pedi neurosurgeons tend to be better - prolly bc they deal with

kids and the bedside manner of concrete would go over just like that -

concrete.

Jenn

On Mon, Mar 21, 2011 at 6:24 PM, susan radzilowicz wrote:

>

>

> Jenn, I looked at the website and of course in NJ kessler is on

> there.....that is where I was going for the adult spina bifida clinic....and

> was supposed to have rehab after surgery. I'd have to look into the NY

> one. When i first contacted the ped neuro he said he treats adults, but now

> I'm beginning to question it. I'm really just so sick of ALL of this right

> now.

> I know that I'm lucky to have gotten this far with relatively few problems,

> but as undramatic as they may seem, they are a significant change to me and

> my lifestyle.That is what I want the dr's to understand. As far as the mri

> goes, the report specific mentions in the thorasic area that there is no

> evidence of stenosis. and the lumbar other than where i have the sb is

> normal. I guess the dr will have to review the films himself. I will

> certainly consider sending the mri off to one of the other dr's if I am not

> completely satisfied with Wednesdays visit. Thanks to everyone for all the

> info.

>

>

>

> >

> >

> > Hi Jenn, What is MSCIC? The ped neuro gave me three names of adult

> neuro's

> > and out of the 3, the one I chose actually mentioned sb/tc as one of his

> > specialties. I will question him regarding his experience with this. Mine

> > would be post surgical, as I had a repair done shortly after birth. I'm

> > still trying to understand why the neuro is questioning if I have TC or

> > not. He suggested that I have neurogenic claudication.

> >

> > " Neurogenic claudication shows up as pain in the low back and leg. The

> pain

> > may feel like muscle cramps. It is brought on during walking and/or

> > extending the spine backwards (arching your back), and it is relieved by

> > stooping, sitting, and/or bending forward at the waist. Other symptoms

> > include pins and needles going down your leg, and weakness. Bowel or

> bladder

> > problems may occur if the neurogenic claudication is severe . Neurogenic

> > claudication is a syndrome, or collection of symptoms, associated with

> > degenerative spinal stenosis in the lumbar spine. It is often related to

> > posture. The combination of the stenosis with certain back postures such

> as

> > arching puts pressure on lumbosacral nerve roots and/or the cauda equina.

> "

> >

> >

> > Sure, some of the symptoms are similar however, was he not listening when

> I

> > told him it bothers me to sit when I have to lean forward...like working

> on

> > a computer or sitting to eat. Or that any activity the Pt's had me do

> > increased my symptoms. I specifically told him I have burning pain in my

> > back and if I lean forward it starts to move up my spine.

> >

> > Sue

> >

>

>