Re: Can't find a neurologist

[Guest guest]

Hi Patsy,

I was diagnosed with Lipomeningocele in 1997 at age 36 and had five untetherings

within eight years (plus two spinal cord leak repairs). I was left with

debilitating pain and neuro deficits.

I see a neurologist for botox injections in my legs - but beyond that, I've

never really found a neurologist helpful. They're great at finding new problems

and helping certain deficits, but for long term care, the best doctor I have is

a physiatrist (also called a neuro-rehab). Call the largest hospital near you

and ask for the name(s) of these specialists within their system and then ask

your primary care for a referral to one or two (if your insurance requires it).

Kathy

Can't find a neurologist

Hi, my name is Patsy and I'm 58 years old. I didn't even know I had tethered

cord until intense pain hit my hip and leg when I was 50. Two years after my

first detethering, I retethered and had a second surgery. Unfortunately, my

surgeon could not get the last two " rootlets " free without leaving me paralized.

(You know how they monitor the surgery as it goes along.) Of course, those last

two control my bowels and bladder, so those problems have just increased. A

couple years ago, my pain increased also, so I knew I had completely retethered.

Since the last surgery wasn't complete, I know there is no reason to try more

surgery. I have a neurostimulator for my hip and leg pain. In the last year, the

pain has spread to my back. I can't afford to take anymore time off work for

surgery for fear of losing my job. So, instead of another neurostimulator, I

also have a TENS unit for my back.

My problem is that I cannot find a neurologist that knows anything about long

term care or prognosis when surgery is not an option. Last year, I thought I had

found one, but all he did was put me through painful and unnecessary tests that

only confirmed that I had in fact retethered. I had explained to him before I

went to the first appointment that I didn't want him to " fix " me, just tell me

what I have to look forward to. He finally admitted he didn't know.

I live in southeast Michigan. I have tried Henry Ford Hospital system and even

wrote to the head of neurology at University of Michigan. These are two of the

best hospitals in the US, and neither one has a neurologist that can help me.

Has anyone had any luck finding a doctor that has experience with TCS?

I'm sorry this post is so long, but I would also like to know if anyone has

gone on disability with this condition.

Thanks for your time, Patsy

[Guest guest]

I found out I had SBO, TC and diastematomyelia when I was 24. I had my first

untethering when I was 25 (april 2000). I retethered 4 months later. I had

my second untethering in Dec 2002. I had to quit working shortly before that

and applied for disability. When my MD did the second untethering, he also

Dx me with arachnoiditis. In Feb 2003, I started losing function in my legs

very rapidly. I developed hydrosyringomyelia. I had surgery to correct that

in June 2003, which left me a T12 para. I'd say my story is the exception,

rather than the rule when it comes to TC.

If you are not looking for someone to " fix " you, then you would probably be

best suited to find a good physiatrist (also listed under Physical Medicine

and Rehabilitation) to help you manage your condition - pain, function, etc.

A neurosurgeon is only going to evaluate you for surgery. If you were

looking for a neurosurgeon, then I would recommend Dr. Frim (Chicago) or Dr.

Fuchs (NC) - as they are the most experienced surgeons with TC. While they

are pedi nsgs, they do handle a lot of adult cases. I would hazard a guess

that they probably have the most experience in the US dealing with adults

with TC - especially retethers.

The other option is to contact the SBAA or your local chapter. The SBAA has

a list of NTD docs. Often, local chapters have even more extensive lists of

local MDs.

As far as what is to come, I don't think any MD can tell you that. There is

no crystal ball for TC. You could remain stable for the rest of your life,

you could end up a para. There is just no way to know. Knowing you are

retethered and having increasing symptoms, then, I think your long term

outlook is largely determined by how you treat your body. Taking it easy and

not doing those things that aggravate your symptoms are going to give you a

better long term outcome than trying to keep working and doing things you

think you " need " to do just because you think you " need " to do them or want

to. It can be difficult to accept limitations, but limitations are important

for quality of life with TC.

As far as disability, all you can do is apply. Fill out the application.

Give any necessary paperwork to your MDs to fill out, etc. Your docs aren't

the ones to determine whether you are disabled or not - that is the job of

those that review your application for SSDI. They will look at all the info

provided by your MDs and make a decision based on that (in theory. Sometimes

I think they have poorly trained monkeys making the decisions, b/c I have

known people who were VERY disabled who were denied and at the same time

seen people who were not impaired get approved). After the initial

application, then its just a waiting game and sending all the little minutia

they request and get their decision. If you are denied, then you have to

decide if you want to appeal and whether to get a lawyer. But I don't

suggest hiring a lawyer for the inital app - if you get approved, then they

just take your money for something you prolly could have done one your own.

I did my application and sent them all the stuff they requested along the

way. By the time I had my third surgery and was at Shepherd doing my IP

rehab, I was basically already approved. I was approved retroactively to Dec

2002.

Jenn

On Sat, May 14, 2011 at 7:43 PM, sweettrillium

wrote:

>

>

> Hi, my name is Patsy and I'm 58 years old. I didn't even know I had

> tethered cord until intense pain hit my hip and leg when I was 50. Two years

> after my first detethering, I retethered and had a second surgery.

> Unfortunately, my surgeon could not get the last two " rootlets " free without

> leaving me paralized. (You know how they monitor the surgery as it goes

> along.) Of course, those last two control my bowels and bladder, so those

> problems have just increased. A couple years ago, my pain increased also, so

> I knew I had completely retethered. Since the last surgery wasn't complete,

> I know there is no reason to try more surgery. I have a neurostimulator for

> my hip and leg pain. In the last year, the pain has spread to my back. I

> can't afford to take anymore time off work for surgery for fear of losing my

> job. So, instead of another neurostimulator, I also have a TENS unit for my

> back.

> My problem is that I cannot find a neurologist that knows anything about

> long term care or prognosis when surgery is not an option. Last year, I

> thought I had found one, but all he did was put me through painful and

> unnecessary tests that only confirmed that I had in fact retethered. I had

> explained to him before I went to the first appointment that I didn't want

> him to " fix " me, just tell me what I have to look forward to. He finally

> admitted he didn't know.

>

> I live in southeast Michigan. I have tried Henry Ford Hospital system and

> even wrote to the head of neurology at University of Michigan. These are two

> of the best hospitals in the US, and neither one has a neurologist that can

> help me. Has anyone had any luck finding a doctor that has experience with

> TCS?

>

> I'm sorry this post is so long, but I would also like to know if anyone has

> gone on disability with this condition.

>

> Thanks for your time, Patsy

>

>

>

[Guest guest]

Hi Patsy,

I am sorry to hear of your situation. I found out about TC with similiar pains,

however I have not had surgery. Do you know what level vertebrae your cord was

tethered at? Are you able to ambulate?

>

> Hi, my name is Patsy and I'm 58 years old. I didn't even know I had tethered

cord until intense pain hit my hip and leg when I was 50. Two years after my

first detethering, I retethered and had a second surgery. Unfortunately, my

surgeon could not get the last two " rootlets " free without leaving me paralized.

(You know how they monitor the surgery as it goes along.) Of course, those last

two control my bowels and bladder, so those problems have just increased. A

couple years ago, my pain increased also, so I knew I had completely retethered.

Since the last surgery wasn't complete, I know there is no reason to try more

surgery. I have a neurostimulator for my hip and leg pain. In the last year,

the pain has spread to my back. I can't afford to take anymore time off work

for surgery for fear of losing my job. So, instead of another neurostimulator,

I also have a TENS unit for my back.

> My problem is that I cannot find a neurologist that knows anything about long

term care or prognosis when surgery is not an option. Last year, I thought I

had found one, but all he did was put me through painful and unnecessary tests

that only confirmed that I had in fact retethered. I had explained to him

before I went to the first appointment that I didn't want him to " fix " me, just

tell me what I have to look forward to. He finally admitted he didn't know.

>

> I live in southeast Michigan. I have tried Henry Ford Hospital system and

even wrote to the head of neurology at University of Michigan. These are two of

the best hospitals in the US, and neither one has a neurologist that can help

me. Has anyone had any luck finding a doctor that has experience with TCS?

>

> I'm sorry this post is so long, but I would also like to know if anyone has

gone on disability with this condition.

>

> Thanks for your time, Patsy

>