Diagnosed with spinal cord tethering

Hi,

After suffering from back pains when slouching from sitting and laying on my back in bed, I had an MRI on my spine which revealed some degree of cord tethering. Unfortunately, due to a mix up, the surgeon I saw had no pictures to look at to see in detail the degree of the tethering. He was given results in text form on paper, which was quite thorough. I believe it had L something when describing the state of the tethering, but I don't recall.

I was born with Spina Bifida and am a wheelchair user. I am 29, 30 in June.

I asked the surgeon whether cord tethering is safe to go untreated, and he said it won't present any symptoms apart from pain. Well, I got a shock when I read on the internet that it can affect motor skills, bladder, among other things. I already have an incontinence problem and have done since I were little. I always did put that down to the spina bifida, not cord tethering. I also have chiari malformation, although I don't recall what type.

I do not get pain every day, and it only depends whether I am in particular situations ie the slouching when sitting and lying on my back. I prefer to sleep on my front, anyway.

What is the likelihood of symptoms becoming worse and the chances of me undergoing surgery?

The surgeon that I saw admitted that he was very biased toward sugery, since that is his profession, and said that he would not hesitate to operate immediately, however, he said I should see a pain specialist first and just keep an eye on it for a while. I also need another MRI so they get some pictures next time.

Apart from pain every now and again, I am fine.  

I don't like surgery, as I hate "going under", but the prognosis's that I have been reading online have actually made me consider it.

What are people's thoughts?

Thank you!

[selmaS]

Hi...having chiari as well as TC u should sleep on ur side...no ur tummy....it is not good for ur neck.....

As for the bladder issues it can be a result of the TC, chiari and ur SB....all of them can cause bladder and bowel issues.
U may want to fine a true chiari dr, they treat all of these issues and can offer guidance as to what may be causing ur symptoms and the best options to treat.

I invite u to join the chiari forum here on MedHelp-http://www.medhelp.org/forums/Chiari-Malformation/show/257?camp=msc

  "selma"

[Speedy2056]

Thank you for the tip about sleeping on your side, Selma, I did not know that!

I forgot to mention that I have been intermittently catheterizing since I was a child. Mostly, I remain free of leaking, although this can still sometimes happen. It all depends on the volume of fluid. Very rarely I get bad urges to urinate and may leak some.

I will check out the chiari forum. Thanks for the link!

[selmaS]

  U r welcome : )

I hope we see u in the chiari forum, we have many members all willing to share experiences and info.

  "selma"