Need a dr in Nj or NYC HELP

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Please help guys. I can't find any adult neuros willing todo my detethering. I'm

25 going on 26 And I do

Have a Double Tether with a lot of scar tissue and my last surgery was in 2008

and I was icu for a week then went to

Step down floor for 5 days came home leaked and went back two days later had a

leak repair and spent another week there. But they all Say it's to Complicated.

But I can't take it anymore. My pain meda don't work. I have a two year old

daughter who is 25 lb and I can carry her from my car to front door. Most days I

don't wanna get put of bed. I can never poop and I just wanna try surgery again.

Last time even though I had a few obstacles. It was amazing two years or living.

Then I had a baby and I ruined myself all over again. So please names and idea

will help. I'm on Opana and soma and diauldid and vicoden so maybe others have

better meds? My Opana doesn't seem to last the 12 hours its supposed to anyone

else on it? Thanks guys!

This message was sent from s' iPhone. Apologies if it does not format

corectly.

> Great minds think alike Jenn!

>

> Kathy

>

> Re: Can't find a neurologist

>

> >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

> >>

> >>

> >>

> >

> >

> >