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  1. #1

    Default To release or not to release...

    So I saw my neurosurgeon today. My Mri shows a pretty big difference since my last one back in 2009 (it's taken me that long to find a neuro who is familiar with adults and sb). Basically my cord is re-tethered and the scar tissue/fluid/whatever he has increased quite a bit. He explained that he almost never recommends tethered cord release surgeries for adults because they "never improve function and carry such high risks". But in my case he said surgery might be beneficial. He also said there is a minimally invasive procedure (they don't use it on pediatrics yet, not sure why) where only a very small incision is made. This helps to reduce the chances of spinal cord fluid leakage and the procedure requires maybe a one night hospital stay at most. Outside of that it's sounded basically the same as a regular release.

    Prior to this appointment I had no intention of having surgery. I have discovered that using a wheelchair helps relieve the pain/pressure in my back. I had planned on finalizing my wheelchair order and using the chair and some lifestyle changes to manage my progressing symptoms. Is this a ridiculous idea?

    I have a multitude of health problems and having surgery of any kind is very hard on my body. I'm just now finally recovering from shoulder surgery and because of that surgery I lost my job. I'm only working part time and the job I have is very physical, often outdoors or in a house where the doors are opened constantly leading to warm temperatures. I can not afford to be out of work for the 6 or whatever weeks of recovery. But because of the shoulder surgery I have met both my deductible and my out of pocket maximum so the surgery would potentially be free if I have it before the end of the year.

    Is it stupid to invest in equipment instead of surgery? I am so anxious to get my life back. I feel so trapped right now since I either have to limit my activities or suffer in pain for days or weeks but I don't want to rush into this.
    lipomyelomeningocele, tethered cord, nerve damage began as a young adult, still have lots to learn about living with SB!

  2. #2

    Default

    Ok, so I'm revisiting this issue because in the last couple of weeks my pain levels have increased a lot. I am miserable. I feel so my pressure in my low back. But I really don't want to go through another release surgery. Have any of you, especially those with recurring tethered cord, had a release surgery as an adult? Was is successful? My last surgery was 10 years ago, I was in my early 20's and still felt indestructible. I know better now and am wondering if the risk and recovery period is worth it and whether the surgery will actually be helpful or not. I'd really appreciate hearing from other adults who have had a release.
    lipomyelomeningocele, tethered cord, nerve damage began as a young adult, still have lots to learn about living with SB!

  3. #3
    Join Date
    Oct 2016
    Location
    Californian living in New Mexico
    Posts
    6

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    I hope you take your time on the decision if you are able too. It fucks being in pain. I was in a wheelchair before my l5 s1 fusion. The pain was unbearable and that'seven so decided on surgury. I still have pain but I can walk. I still have pain almost all the time, just on a different scale, but pain wears on you especially when you trying to survive. I just went back to work part time after 10 plus years. My and it's going to be a challenge. Best to you and I'm here if you need someone to talk too.

  4. #4
    Join Date
    Oct 2016
    Location
    Californian living in New Mexico
    Posts
    6

    Default

    And, I said sucks and auto spell changed the word, because when I usually type fuck it changes it to duck. And, I see auto spell must have just given up on me because I see no corrections are being made. (Its the little things in life that can make a person Mad.

  5. #5
    Join Date
    Feb 2013
    Location
    Africa
    Posts
    45

    Default

    The neurosurgeon is quite right, de-tethering in adult isn't always a win win situation. If it's your first or second de-tethering as an adult then it might be worth the shot especially if the surgeon is really familiar and well experienced with SB and tethered cord issues. Otherwise you might just want to consider alternative options in pain management. Problem with de-tethering is that of the risk of nerve damage either with the surgery itself or from scar tissue that usually develop from the healing post surgery. So each case is always different but from experience you might actually have relief from pain with surgery, could be for months or years ( who knows?) Depends on scar tissue again, which means if tethered again you might just be back to similar situation. But the big QUESTION is about other issues related to SB( like mobility, bladder etc), or are you just having a hard time with pain now? Cos if it's just the pain you might try to explore options in pain management ( try to get a referral to pain management specialist)

  6. #6

    Default

    I have had 2 previous release surgeries in 2001 and 2006 as a young adult. Had some rough moments with those and didn't really see much improvement but it did stop the progression for a while. I had nerve pain for the first time just after my first surgery and it lasted a couple years and seemed to slowly fade away. After my second surgery I had little to no pain. My nerve pain was intermittent and not really an issue. It started to come back around 2010 I think and an mri showed I was re-tethered. Again the pain was intermittent and not a big issue. In 2012 I started running and loved it.

    Fast forward to now, for the past year or 2 I have seen a marked decline in mobility, I can get around the house, manage the grocery store (mostly) and can usually deal with work but that's it. I can't go for a walk, I certainly can't run (but that's more because of the rheumatoid arthritis I was recently diagnosed with) and I can't go to the zoo, amusement parks, big expo's etc.

    My job is part time and finally in the last 2 weeks work has picked up. I've been working 5-6 days a week (not in a row, and usually only 4-7 hour shifts) and I am in horrible pain. I am still waiting for my insurance to approve or deny my wheelchair. I know from wheelchair soccer that using a chair provides me with pain relief, but last night at practice nothing helped. Neither my gabapentin or the chair gave me any relief. I really don't want to have another release surgery. I feel like it provides only short term relief and just slows down the inevitable. I have been slowly loosing mobility, sensation and muscle mass since 2000ish. My bladder/bowel is a non-issue, I lost those completely around 2005. My surgery in 2006 did not help with those issues.

    I'm worried that at 34 and especially with type 1 diabetes and all my other health conditions, surgery has more cons than pros. But I am sick of this pain and I miss being an active outdoorsy person. I miss hiking and running and just being able to go for a walk. I am fine with using a wheelchair part time but I don't want to be in pain the rest of the time. I can learn to deal with the mobility issues if I could just get the pain under control.
    Last edited by Mimo; 10-25-2016 at 02:30 PM.
    lipomyelomeningocele, tethered cord, nerve damage began as a young adult, still have lots to learn about living with SB!

  7. #7
    Join Date
    Jan 2008
    Location
    South Africa
    Posts
    6,121

    Default

    Have you considered a neurostimulator for pain control?
    Roger
    Sumus semper in excretum sed alta variat!

  8. #8
    Join Date
    Feb 2013
    Location
    Africa
    Posts
    45

    Default

    Yeah neurostimulator could be an option, but get to see a pain management specialist to explore all options available. I presently have one, and I can tell you it's could be a rigorous process, so take your time

  9. #9

    Default

    I will definitely look into a neurostimulator. Sounds better than surgery. I finally have some time off next week so I will call my dr then. Thanks!
    lipomyelomeningocele, tethered cord, nerve damage began as a young adult, still have lots to learn about living with SB!


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