Guest guest Posted May 15, 2011 Report Share Posted May 15, 2011 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 >> >> >> > > > Quote Link to comment Share on other sites More sharing options...
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