untethering surgery - do it?

[alan]

I continue to lose sensation and function above my C-5 injury level, and my pains always worsen. One neurosurgeon, Aga Khan at Sinai Baltimore, in all that I have seen over the years, suggested untethering my cord. MRI reports over the years say no change. The most recent neurosurgeon to compare my MRI scans was George Jallo at Hopkins, and he saw no change between 1995, 2002, and 2010, so he had no explanation for my deterioration, and saw no surgical remedy. His thought was I'm deteriorating due to aging (29+ years SCI, age almost 51.)

I'm desperate to recover my lost sensation and function, and reduce pains intensity, which is why I'm considering letting Dr. Khan operate. I see no other option for possible improvement- does anyone? I'm terrified of the idea of surgery (and the possibility of infections, etc.), but what else is there?

[LaMemChose]

Before I would consider surgery, I'd make as certain as possible a tethered cord was responsible for my problems. Then, I'd ascertain, as I best I could with more than one medical opinion, the surgery would be of great benefit to me. There is no way I'd consider it otherwise.

I'm unfamiliar with Dr. Khan's work. Were I to need untethering, I'd look to Dr. Falci at Craig Hospital in Denver. I'd at least want him to weigh in on the pros and cons of the op as related to my problems.

Alan, I'm 49 years into cerebral palsy and late spring will mean 18 years into my SCI. I'm having declines and these are being attributed to cerebral palsy overuse syndrome as well as aging with SCI. I was misdiagnosed with myriad other neuro problems, until finally, it's coming down to premature aging in a significantly disabled body.

With the other problems you have on a near daily basis, just ensure as best you can any surgery you undergo will be of more benefit than harm.

[november]

I was going to suggest Dr. Falci too. Maybe you wouldn't even have to travel for it, but with a surgery as serious as that I would for a complete sci workup.

[SCI-Nurse]

It sounds like you have one opinion to operate and one not to. I will ask Wise to comment when he has a chance.

AAD

[BeenThereDoneThat]

I understand desperate, but with no clear evidence that there is tethering or a syrinx, there is no way I would ever consider having even the most skilled surgeon (which, IMO, is Dr. Falci) open up my dura and poke around near my cord...the chance of coming off the operating table worse off than when I got on it is too big.

I'm a C2-3 incomplete from previous cord surgery, and I've BTDT with just about everything that could go wrong, including CSF leaks that resulted in bacterial meningitis. Both a syrinx near the brain stem and numerous cervical cord tethers are visible on my MRIs, but I am refusing surgery because the surgeons I've consulted have all said that with my already thin cord, there's a significant chance of my cord becoming completely severed during that operation.

I think LaMem and your doctor are correct, and the changes you're experiencing are age related. Back when I was in my late 30's, I was still able to walk and only needed the occasional Darvocet to manage my pain. My neurosurgeon at that time told me that when aging hits people with SCI/D, it hits us HARD because the loss of the SC nerve cells that die off due to aging, which we know all to well aren't replaced with new ones, compounds the problems from the existing damage exponentially. We lose function and our pain gets worse, often after years of stability. 17 years later, I need a power chair, have spasms severe enough to warrant a high dose of intrathecal baclofen, and am taking several strong opiods (long acting and breakthrough) to keep my pain from crippling me.

If you really think there is something going on that surgery could help even though your doctor can't see any changes, go see Dr. Falci. If he sees something and would be willing to operate, and you can live with the idea that you may come out of that surgery in even worse shape than you are now, or would be ten years down the road, go for it.

[alan]

I'd certainly like to avoid surgery (I've spent too much time in the hospital since 12/08 as it is), and I definitely haven't decided to do it. The continuing deterioration scares me - I'm already too dependent and obsessed by pains as it is, so the last thing I needed was losing what little upper back sensation I had and having more pain replace it. I know stress isn't helping matters.

If I could travel to Denver, I would, but I can barely tolerate a 15 minute ride.

[Princess "Leia"]

I continue to lose sensation and function above my C-5 injury level, and my pains always worsen. One neurosurgeon, Aga Khan at Sinai Baltimore, in all that I have seen over the years, suggested untethering my cord. MRI reports over the years say no change. The most recent neurosurgeon to compare my MRI scans was George Jallo at Hopkins, and he saw no change between 1995, 2002, and 2010, so he had no explanation for my deterioration, and saw no surgical remedy. His thought was I'm deteriorating due to aging (29+ years SCI, age almost 51.)

I'm desperate to recover my lost sensation and function, and reduce pains intensity, which is why I'm considering letting Dr. Khan operate. I see no other option for possible improvement- does anyone? I'm terrified of the idea of surgery (and the possibility of infections, etc.), but what else is there?

Hi Alan,

I sure know what you are going through, my cord is also tethered too, big time. George Jallo was part of a team of surgeons (Fred Epstein operated) that removed 95% of a tumor from my c-spine in 99, thus the tethered cord. I would trust his opinion, he has opened up too many spinal cords and recieved his fellowship training in peds-neurosugery under the late Fred Epstein. I am 12 yrs post of and almost 56,( the last 5 yrs have been rough) I see a big difference in pain and slight deteriation of funtion each year as I age. It sucks big time and I am in great fear of what the years hold in store for me.

I researched and discussed untethering my cord awhile back with a few DRs. There is a reason most doctors will not untethered a cord. I found out in most cases there is no guarantee untethering will repair loss of function or sensation, in fact it may make it worse. There would be additional scarring or a retethering of the cord, dealing with old scarring is very difficult too and I did not want to chance it. I was too scared to risk it.

Alan, I sure do feel for you and I know you have been suffering over the years and are desperate for relief. Please be cautious how you proceed. I too would ask Dr Young to comment or do a search of the site, it hs been dicussed before.

Good Luck Alan,you are in my thoughts,
Pam

[mikek]

In 1998 I had untethering surgery with Barth Green of Jackson Memorial and Miami Project fame.I was 30 years post at the time and losing function rapidly.I never regained the fuction or sensory I had before surgery. I was a walking incomplete T2 since 1968 and facing getting sci twice in one lifetime was very scary. I have been using a wheelchair since. Be very careful and hope you make the right decision.

[alan]

I don't recall exactly when the sensation loss started, but I know I got an MRI after I noticed a change, and have gotten more as the deterioration continued. If this is actually a phenomena of aging with SCI, rather than caused by a growing problem in the damaged area of the cord, then surgery wouldn't be of any use. It certainly doesn't bode well for the future.

[seawalker]

Alan, I recently read in another forum about a patient of Dr. Jallo getting de-tethered 10 years following surgery for a tumor excision. During the surgery Jallo apparently found a huge amount of scar tissue build up which he was not expecting and was very surprised. Why not also try Ziya Gokaslan or someone else over at the spine center, or even an SCI neuro at KKI for a sith opinion?