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    untethering surgery - do it?

    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?
    Alan

    Proofread carefully to see if you any words out.

    #2
    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.

    Comment


      #3
      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.
      Aerodynamically, the bumble bee shouldn't be able to fly, but the bumble bee doesn't know that, so it goes on flying anyways--Mary Kay Ash

      Comment


        #4
        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
        The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

        Comment


          #5
          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.
          Last edited by BeenThereDoneThat; 29 Mar 2011, 6:54 PM.

          Comment


            #6
            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.
            Alan

            Proofread carefully to see if you any words out.

            Comment


              #7
              Originally posted by alan View Post
              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

              Comment


                #8
                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.

                Comment


                  #9
                  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.
                  Alan

                  Proofread carefully to see if you any words out.

                  Comment


                    #10
                    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?
                    C3/4 Incomplete. Ependymoma tumor, syrinx from C to T.

                    Comment


                      #11
                      May I also echo the praises of Dr. Falci at Craig. I am familiar with Dr. Kahn as well, but when it comes to this procedure, I don't think there is anybody better. While never having gone through a loss of sensation or muscular problems I was presented with the same option back in 2003 and decided against it because the basis for recommending was basically an increase in A.D.

                      This past September I had another MRI done and Dr. Falci compared the two and saw no difference, but if you are losing sensation and mobility, there really aren't a lot of explanations outside of tethering or a buildup of fluid and scar tissue around your injury site.

                      I talked to a couple of people who had the surgery done (and not to scare you away) but it is major surgery with a lot of pain, more so than compared with fusion surgery because they have to do it posterior instead of anterior. There are a lot more cervical vertebrae that they must saw through and really 99% of the only complaints I have ever heard are the pain and the two-week recovery time, which is why they make the wonderful drug morphine. :-)

                      I know that he will look at the MRIs and give you his best professional opinion, but if it was me I would not wait or hesitate. You don't want to lose what you have worked so hard to maintain. Best of luck!

                      Comment


                        #12
                        Originally posted by alan View Post
                        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?
                        Alan,

                        Having now seen several operations with chronically injured spinal cords exposed for transplantation of cells and untethered if adhesions were present, I can share the following observations:

                        1. tethering of the spinal cord is not always apparent on MRI scans. Patients can have a lot of scarring and adhesions but it may not be apparent on MRI scans.

                        2. untethering does not always eliminate pain. Some patients had neuropathic pain before and untethering did not change the neuropathic pain.

                        3. some of the patients had transient increase in pain after surgery but it is not clear whether this was due to the surgery or transplanted cells.

                        4. some patients had significant reduction of neuropathic pain after surgery but it is not clear whether this was from the surgery or the transplanted cells.

                        Most neurosurgeons are unwilling to do the untethering operations if the patient has stable neurological symptoms. However, because your condition is longstanding and progressive, some neurosurgeons are willing to consider doing the untethering. I don't know Dr. Agha Kahn personally but he has an interesting resume. He is not only a neurosurgeon but a physiatrist. He appears to be experienced (27 years), is a board-certified neurosurgeon, and is practicing in a good hospital.

                        Wise.

                        Comment


                          #13
                          Thank you, Dr. Young. There wouldn't be any cells transplanted with this surgery. It sounds like there is little chance that untethering surgery alone (if tethering was found, which sounds like it would require surgery to discover, as no scans are showing it), would improve any of my problems (pains, deterioration above injury level.) Plus, nothing would stop the area from re-tethering at a later date. Plus, my neck and head are my only pain-free areas (time will tell if the sensation loss and pain progress up past my shoulders) - another neck surgery will cause at least temporary neck pain. It would require cutting through scar tissue from my 1981 fusion and 1987 C-5 laminectomy (which found no syrinx.)

                          I know even successful untethering would have no effect on my worsening spinal curves and horrible posture and sitting balance - that problem was not a factor in my considering surgery.

                          Two years ago, Dr. Khan had thought the surgery might have a 40% chance of improving matters. I actually had scheduled surgery for 12/10/09, but cancelled (my mother was ill, and I was as afraid of hospital stays and my anxiety as I am now. Also, I've never been an optimist, and wasn't then., though I actually did have hope before the 1987 surgery.) After two more years of deterioration, his odds will be lower. He certainly is not a cut-happy surgeon with me - he didn't try to talk me into it.

                          What has made me think things have changed, besides sensation and movement loss over time, is reading MRI reports. 1995 mentioned problems from C-4 to C-6. Reports from the 2000s mention problems like myelomalacia from C-3 to C-7, plus the greater damage between C-4 and C-6. That's why I sent scans from 1995, 2002, and 2010 to Dr.Jallo, who saw no change between them.

                          If the deterioration is due to aging with SCI, as Dr. Jallo suggested, I'll just have to live with it. I already have an advanced directive if things go so far that I can't breathe on my own.
                          Alan

                          Proofread carefully to see if you any words out.

                          Comment


                            #14
                            Is it even worth keeping this appointment?
                            Alan

                            Proofread carefully to see if you any words out.

                            Comment


                              #15
                              If you're absolutely convinced that even in a best case scenario that surgery is too much risk for too little benefit, then don't bother keeping the appointment. If there's even a tiny bit of wiggle room in your decision, go to the appointment and talk with the surgeon about the issues raised here.

                              If I may ask, do you have a pain management doctor? They won't be able to restore function or sensation losses, but a good one should be willing to help you find some combination of treatment that will bring your pain down a bit.

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