Results 1 to 15 of 15

Thread: Thinking my time might have just run out/ SI Joint Dysfunction

  1. #1
    Join Date
    Feb 2016
    Posts
    15

    Thinking my time might have just run out/ SI Joint Dysfunction

    I would appreciate any insight you can give me. More than 40 years ago, I had a fusion [T5 to L3] with Harrington rod instrumentation. Since 2013, I’ve had pain in my lumbar back and pain down my right leg. After having read numerous posts about the realities of extending a fusion to the pelvis, I decided that I would do everything I could to avoid further surgery. To that end, I’ve researched pain management and have used a combination of Gabapentin, Diclofenac, a topical cream and cannabis based medications. I have also tried to exercise and stretching and have managed to do this more or less consistently this last year. Up until recently, I thought I could manage with these strategies.

    In the last 5 or 6 weeks, I’ve developed significant pain in my left sacroiliac joint [SIJ]. Recently, the pain is so bad that at times, I can’t even walk or sit. Diclofenac [a strong NSAID] has helped me with this pain but this relief is not enough. It has occurred to me that given my current limited mobility that perhaps extending my fusion to sacrum/pelvis couldn’t be too much worse. I have an appointment with one of my HMO’s Physical Medicine specialists. If I am lucky, they will assess this problem correctly and perhaps offer me suitable imaging and then an injection into the SIJ. However, what probably will happen is that they will elect to adopt a “wait and see” approach because that is the most "cost effective" approach. I don’t know if I can handle the “wait and see” approach.

    Research has shown that the SIJ is negatively impacted by spinal fusion [another form of Adjacent Segment Degeneration / ASD]. I found it interesting that harvesting bone from the Iliac crest has been shown to weaken the SIJ. Although bone was taken from my left ilium, it was probably too long ago to have an impact today. It also probably doesn’t help that my right, lumbar curve goes into the sacrum/pelvis in a very asymmetrical manner.

    So here are my questions I am hoping I can get answers for:
    (1) If you were me, what would you do? Would you consider extending the existing fusion?
    (2) If you have had pain in the SIJ, could you adequately manage it? Were you able to stay physically active? Is there any reasonable possibility that this will not become a chronic problem?
    (3) If I did elect to have a fusion that extended into my pelvis/sacrum, is it likely that this procedure would help with the pain in my SIJ?

    I would be most appreciative of any answer to any question. Thank you, Terry
    1973 Diagnosed with scoliosis [left thoracic curve 75* and right lumbar curve of 72*]
    Spinal fusion surgery with Harrington Rod instrumentation
    Left thoracic curve corrected to 55* and right lumbar curve corrected to 45*
    2013 Significant pain down right, upper leg
    2015 MRI of lumbar spine detects "multilevel degenerative disc disease with disc bulges and facet hypertrophy" AND
    the presence of a "possible nerve sheath tumor" at L2-L3

  2. #2
    Join Date
    May 2008
    Location
    reno,nevada
    Posts
    3,555
    Terry, you have done battle for a long time....and I know that the NSAID’s handle around 80-85% of the pain, but not all of it. You also cannot overtake these meds....that’s a no-no.

    If you post that you cant “wait and see” by waiting for shot results, you must be in major agony, I’m so sorry. This is how dates get set, by major pain. Find a deep hot tub someplace and boil that pain away. I would not have made it without my hot soaks. Hot tub rooms are great because you can set the temp. I found that it had to be 106 degrees F scalding hot to numb that nerve pain. The tub needs to be deep enough to float.

    I don’t believe that any of us can truly pinpoint pain generators much of the time, if your lumbar levels are shot, you really cant pinpoint your SI joints. The shots can help in finding these pain generators, but if it takes multiple try’s to find the source, it can really be a long time when you have multiple lumbar problems. This is why I refused my shots. It just didn’t make any sense to me. I felt like I needed a shot ON EVERY LEVEL up to my neck. I had way too many spine problems....mainly lumbar

    When the pain is extreme and you can’t function and life becomes a major struggle, we have no choice. Damn the torpedoes. There are no guarantees with surgery, so you are cutting losses.

    If you do surgery, you will need a good revision surgeon....

    I would do it in a scoliosis center like UCSF.

    Damn....there have been some tough posts here lately.

    Let us know what you decide....Only you can decide.

    Ed
    49 yr old male, now 58, the new 53...
    Pre surgery curves C12,T70,L70
    ALIF/PLIF T2-Pelvis 01/29/08, 01/31/08 7" pelvic anchors BMP
    Dr Brett Menmuir St Marys Hospital Reno,Nevada

    Bending and twisting pics after full fusion
    http://www.scoliosis.org/forum/showt...on.&highlight=

    My x-rays
    http://www.scoliosis.org/forum/attac...2&d=1228779214

    http://www.scoliosis.org/forum/attac...3&d=1228779258

  3. #3
    Join Date
    Jan 2016
    Location
    Sioux City, Iowa
    Posts
    89
    I've often wondered how a person knows that pain is from the SI Joint, versus something like a problem at L3/L4, L4/L5, L5/Sacrum. How do you tell the difference?

    Kathy
    Decompression surgery L4/L5
    April 3, 2015
    Twin Cities Spine Center - Dr. Joseph Perra
    Fused from T11 - Sacrum anterior/posterior
    June 24, 2016 - 55 years old at surgery
    Twin Cities Spine Center - Dr. Joseph Perra
    Before Surgery: 42 degrees lumbar, 28 degrees thoracic
    After Surgery: 10 degrees lumbar, ?? Thoracic
    2 inches taller

  4. #4
    Join Date
    Feb 2016
    Posts
    15
    Hi Ed,

    First, I just think you are an angel on this forum. I know that “angel” seems a little over the top but I’m not changing that word. You always seem to be able to supply useful and supportive information. It was very helpful to me when you pointed out the dangers of taking too many NSAIDs because there is a temptation to do just that. I know that you are spot on with this advice. I also appreciate your advice about choosing the right surgeon and hospital staff. I have seen and talked with Linda Racine and Dr. Berven at UCSF. If I am going to have surgery, this is my first choice.

    I also appreciated your earlier post likening the situation we “scolis” find ourselves as a trip down the rapids. And the questions I am sure we all ask ourselves: can we transverse the next section of the river successfully? Well, I guess I just hit the next section of rocks.

    It is VERY important to me to be physically active and independent. That is probably true for most people. If I decide [with the advice of my doctors] that I need to have my fusion extended to my pelvis/sacrum, this will be my greatest worry. I know that you [and others on this forum] have done very well when you were fused to the pelvis/sacrum but I don’t know that you represent the “average” outcome for this surgery.

    Time will tell if the pain I currently have recedes into tolerable levels. Even if it does, it is likely to come back. An injury was not the cause of this current pain episode. It was probably caused when I did too much gardening. Great, gardening is going to cause me weeks of pain. Thanks for being there, Ed.
    1973 Diagnosed with scoliosis [left thoracic curve 75* and right lumbar curve of 72*]
    Spinal fusion surgery with Harrington Rod instrumentation
    Left thoracic curve corrected to 55* and right lumbar curve corrected to 45*
    2013 Significant pain down right, upper leg
    2015 MRI of lumbar spine detects "multilevel degenerative disc disease with disc bulges and facet hypertrophy" AND
    the presence of a "possible nerve sheath tumor" at L2-L3

  5. #5
    Join Date
    Feb 2016
    Posts
    15
    Quote Originally Posted by KathyInIowa View Post
    I've often wondered how a person knows that pain is from the SI Joint, versus something like a problem at L3/L4, L4/L5, L5/Sacrum. How do you tell the difference?

    Kathy
    Hi Kathy,

    I think this is a legitimate question. Clearly there is overlap in the symptoms from degeneration in the lumbar spine and the sacrum/SI joint. I have just seen my primary care physician and she probably doesn't have the expertise to make this distinction. I don't think the imaging of my lumbar spine shows severe degeneration but it does show some DDD. I think the location of the pain I have [off to the left of my spine] and at the very base of my spine made it seem like the SIJ. Perhaps the physical medicine doctor I will be seeing can make a more definitive diagnosis. Terry
    1973 Diagnosed with scoliosis [left thoracic curve 75* and right lumbar curve of 72*]
    Spinal fusion surgery with Harrington Rod instrumentation
    Left thoracic curve corrected to 55* and right lumbar curve corrected to 45*
    2013 Significant pain down right, upper leg
    2015 MRI of lumbar spine detects "multilevel degenerative disc disease with disc bulges and facet hypertrophy" AND
    the presence of a "possible nerve sheath tumor" at L2-L3

  6. #6
    Join Date
    May 2008
    Location
    reno,nevada
    Posts
    3,555
    Terry, Awww shucks.....Most of my willingness to help has to do with the fact that there was limited help in the old days,(the dark ages) and the trials were all basically experimental. I think that my extreme skiing and jumping contributed to the destruction of my spine, and also kept me off the table during the old days. Funny how it all worked out. When in doubt, do nothing...... My course my scoliosis lead its own path, and its only right to share some of hands on experience that I found that worked or didn’t work.

    I cant speak highly enough of Linda and everyone down at UCSF. For scoliosis related stuff, it’s a great place...The professionalism along with the heartfelt compassion and dedication is just something that brings tears to my eyes.....The surgeons and doctors that work on spinal deformity have an extremely challenging field, to be able to actually do the things they do today is something I am very thankful for. To be able to post here about this is also a blessing because I had a second chance. My surgeons mentor is Dr Bradford, who lead the team down there years ago, who came out of Twin Cities. Its funny how it all branches down from the initiation of the SRS by Dr Moe in 1966. The overall intent is a powerful thing, and it needs to be what it is in order to progress into the future. Some of the things that might have happened in the past were what we had, there is no changing that now, for those like yourself that were actually part of that history, its nice to see that willingness and dedication in getting you fixed up, rather than ignoring the situation. Like I said, the intent speaks for itself. There are times when a surgical solution really is the only way.

    For pelvis patients, there are a bunch of us here that are doing well. There seems to have been a lot of adults like me with good curves that came out of the woodwork that needed full fusions. T2-T4 Pelvis. Please understand that these are initial surgeries with modern hardware. Did Dr Berven mention in your meeting anything about procedure on your revision? Usually, they do like going in from the front doing a staged ALIF probably due to the L5-S1 level. Was a complete removal of your Harrington hardware discussed?

    Its funny how many of us with full fusions are into pulling weeds. A century of spinal surgical effort for weeds.....(smiley face)

    One of the things about bending forward is that the anterior body of the spine compresses the disc into a slight wedge and forces disc material to the rear directly on the spinal cord. Herniated discs create huge amounts of pain when this happens. When you get in this situation, the whole area gets inflamed, and its difficult to get it to settle down. NSAID’s and rest, along with water therapy are helpful. I had good luck swimming in the ocean years ago, exercising by swimming and de-weighting is very helpful. Bending forward is no good. I have cervical herniation’s and when I have trouble, I simply look up and hold that position. I can sit in my office chair, tilt my head back looking up and take a quick 10 minute rest in this position and its quite helpful. If you are going to garden, get some knee pads and garden gloves and go down on all fours.

    I don’t know what the stats are on SI joint fusion......I don’t think there is one member here that has had this done. One thing that is well documented is the degeneration of the lower spine under existing fusions after decades of use....I would bet this is what you have going on. DDD, possible herniation or herniation’s, (I had 4 lumbar herniation’s verified by CT) and radiculopathy or nerve root compression or impingement. I had an ALIF with oversized 13MM PEEK spacers installed from the front which lifted up and separated creating room for nerves. I knew right away that my lumbar problems were over in the hospital when I first stood up. The sciatica was gone. Sometimes, patients will testify that they have sciatica after their surgeries and it makes me wonder.....

    I just now looked at your signature....what is going on with this nerve sheath tumor? I didn’t see this.

    Ed
    49 yr old male, now 58, the new 53...
    Pre surgery curves C12,T70,L70
    ALIF/PLIF T2-Pelvis 01/29/08, 01/31/08 7" pelvic anchors BMP
    Dr Brett Menmuir St Marys Hospital Reno,Nevada

    Bending and twisting pics after full fusion
    http://www.scoliosis.org/forum/showt...on.&highlight=

    My x-rays
    http://www.scoliosis.org/forum/attac...2&d=1228779214

    http://www.scoliosis.org/forum/attac...3&d=1228779258

  7. #7
    Join Date
    Sep 2003
    Location
    Northern California
    Posts
    6,801
    Hi Terry...

    As promised, I looked at our SIJ fusion outcomes today. Unfortunately, almost all of our surgeries were done on patients with deformities and/or prior extensive fusions. It's impossible to differentiate between SIJ pain and the back and leg pain when looking at outcomes questionnaires. I did find some published studies. THIS one seems pretty solid. While most patients had a significant improvement, I'm personally not certain that the amount of improvement would offset the risk if I were the one who needed the surgery. But, as I frequently say, only the person in pain knows whether they can continue to live as they are.

    --Linda
    Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Dilbert
    I'm sarcastic... what's your super power? --Unknown
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    Surgery 2/10/93 A/P fusion T4-L3
    Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    If you've signed up and are having trouble posting, please check your spam folder. An email was sent to the email address which you subscribed. You have to follow the instructions in that email. Done that and still having trouble posting? Contact Joe O'Brien at jpobrien@scoliosis.org.

  8. #8
    Join Date
    Feb 2016
    Posts
    15

    Nerve Sheath Tumors (NST) and Scoliosis/ Left Primary Curves

    Quote Originally Posted by titaniumed View Post

    I just now looked at your signature....what is going on with this nerve sheath tumor? I didn’t see this.

    Ed
    Hi Ed,

    As you probably know, the vast majority of "primary" [usually thoracic] curves bend to the right. If a primary curve bends to the left [which my curve does], doctors will screen for a spinal tumor and often find one. Tumors of the spine and brain are classified according to where they are found. Nerve sheath tumors [NST] grow from the nerve roots that come off the spine. These tumors are very rare [like 1/1,000,000]. I think I remember reading that left curves occur more often in males than females. Since I am female, this makes my curve even more "special". How lucky can you get?

    When I asked Linda Racine about this topic, this is what she said:

    1) Left thoracic curves are always suspicious of non-idiopathic scoliosis. 2) I'm fairly certain that that syrinx's and NSTs can cause scoliosis. I can't tell you that they always cause scoliosis. 3) Also, it's always possible that you have idiopathic scoliosis in addition to scoliosis caused by the NST."

    NST can put pressure on nerve roots and cause significant pain. My NST was treated with a "CyberKnife" procedure which is a very precisely controlled form of radiation. This procedure actually caused my pain to get worse. It has settled down some since that procedure was done.

    Thanks again, for your helpful advice! Terry
    1973 Diagnosed with scoliosis [left thoracic curve 75* and right lumbar curve of 72*]
    Spinal fusion surgery with Harrington Rod instrumentation
    Left thoracic curve corrected to 55* and right lumbar curve corrected to 45*
    2013 Significant pain down right, upper leg
    2015 MRI of lumbar spine detects "multilevel degenerative disc disease with disc bulges and facet hypertrophy" AND
    the presence of a "possible nerve sheath tumor" at L2-L3

  9. #9
    Join Date
    Feb 2016
    Posts
    15

    SI Joint Fusion

    Quote Originally Posted by LindaRacine View Post
    Hi Terry...

    As promised, I looked at our SIJ fusion outcomes today. Unfortunately, almost all of our surgeries were done on patients with deformities and/or prior extensive fusions. It's impossible to differentiate between SIJ pain and the back and leg pain when looking at outcomes questionnaires. I did find some published studies. THIS one seems pretty solid. While most patients had a significant improvement, I'm personally not certain that the amount of improvement would offset the risk if I were the one who needed the surgery. But, as I frequently say, only the person in pain knows whether they can continue to live as they are.

    --Linda
    Hi Linda,

    Thank you for taking the time to look into the sacroiliac joint fusion procedure. If my pain remains at this level for a significant period of time, I would at least talk to my doctor about this possibility. It seems less drastic than an extension to the sacrum/pelvis. However, it still is a fusion and as we all know, this has consequences. I am thinking that the next logical step would be to get a steroid injection in the left SI joint to see if that will help my pain. I have tried other injections [into my lumbar spine] and they were not successful but this pain seems totally different from that pain [which I am pretty sure is nerve pain] I have on the right side of my spine. Time will tell. I have always appreciated your cautious, conservative approach. Terry
    1973 Diagnosed with scoliosis [left thoracic curve 75* and right lumbar curve of 72*]
    Spinal fusion surgery with Harrington Rod instrumentation
    Left thoracic curve corrected to 55* and right lumbar curve corrected to 45*
    2013 Significant pain down right, upper leg
    2015 MRI of lumbar spine detects "multilevel degenerative disc disease with disc bulges and facet hypertrophy" AND
    the presence of a "possible nerve sheath tumor" at L2-L3

  10. #10
    Join Date
    Sep 2016
    Posts
    83
    Hi Terry,

    I am so sorry to hear about your SI pain. I like you, have that atypical curve and am female. How did they find your tumor? I have only had a Lumbar MRI done and I am not even sure you could pick that up on one. I am planning to have an entire MRI and CAT Scan done on my spine in June. I wonder if I have one. Where is yours located and what test was done to find it?

    What does your pain feel like? I am wondering if my pain is my SI joint? How would one ever know? Dr. Lenke could not even tell me what was causing it. He said maybe a facet joint. Id hate to have any surgery if the pain doesn't stop. I cannot sit for longer than a few minutes and then it burns and stings into my butt and my outer thigh. That's been going on for about 4 months now. I have not had any injections. I don't feel pain in my leg or numbness just stinging and burning.

    I hope you can continue without more surgery. If it can relieve your pain though, that would be a good thing.
    Melisse
    Age: 42: with 42* Lumbar, 32* Thoracic.
    Diagnosed with Adolescent Scoliosis @ 12 y.o. Thoracolumbar curve was around 28*
    Wore Boston Brace 2 -3 yrs

  11. #11
    Join Date
    Feb 2016
    Posts
    15

    The Million Dollar Question: What Causes Pain

    Quote Originally Posted by Kay1974 View Post
    Hi Terry,

    I am so sorry to hear about your SI pain. I like you, have that atypical curve and am female. How did they find your tumor? I have only had a Lumbar MRI done and I am not even sure you could pick that up on one. I am planning to have an entire MRI and CAT Scan done on my spine in June. I wonder if I have one. Where is yours located and what test was done to find it?

    What does your pain feel like? I am wondering if my pain is my SI joint? How would one ever know? Dr. Lenke could not even tell me what was causing it. He said maybe a facet joint. Id hate to have any surgery if the pain doesn't stop. I cannot sit for longer than a few minutes and then it burns and stings into my butt and my outer thigh. That's been going on for about 4 months now. I have not had any injections. I don't feel pain in my leg or numbness just stinging and burning.

    I hope you can continue without more surgery. If it can relieve your pain though, that would be a good thing.
    Hi Melisse,

    Your question: "What exactly is causing your pain" IS the million dollar question. I think when Dr. Lenke wasn't able to answer your question, it lets you know how difficult this question is to answer. One interesting thing about pain from a NST is that you often feel it in the middle of the night. The thing I noticed with the pain on my right side is that it did NOT appear to be related to any activity I was doing and it was very sharp. I feel this pain in my upper, right thigh. Although I feel the pain in my leg, it is likely to be from the one of the nerves exiting my lumbar spine. This pain responds to the Gabapentin I take.

    The pain I am now writing about does correlate with use: I notice it when I shift weight from the right to the left side of my body, I notice it when I am sitting for any length of time, I notice it when I stand up. It's hard to pick things up from the floor without substantial pain. This pain is much worse at the end of the day and makes it hard to go to sleep. It seems to respond to NSAIDS. Could the pain be from the L5/S1 vertebrae and not the SI joint: It's certainly possible since the pain is localized in that area. You get the idea, there are lots of way that the spine can cause you pain and they are hard to differentiate. Imaging the spine is only one part of the answer to this giant puzzle.

    My doctors found the tumor on my spine [between the 2nd and 3rd lumbar vertebrae] when they performed an MRI of my lower spine. The pain on my right side was not specific enough that anyone thought that this might have been due to a tumor. I think the assumption was that my pain was a result of DDD and/or stenosis. When they found this tumor, they had to image my whole spine/brain because it is not uncommon to have more than one tumor. They did not find any more tumors on my spine but the Harrington rod does make it difficult to look at these images ["There is significant susceptiblity artifact related to prior spine surgery"]. I don't think that x-rays can easily detect this kind of a tumor unless they infiltrate the bone and cause it to look abnormal on an x-ray. If you don't have any metal in your spine, the MRI should reveal the presence of any tumors if they are present.

    So, I'm not sure I've given you any clear answers to your question but as we all know: it's complicated. Terry
    1973 Diagnosed with scoliosis [left thoracic curve 75* and right lumbar curve of 72*]
    Spinal fusion surgery with Harrington Rod instrumentation
    Left thoracic curve corrected to 55* and right lumbar curve corrected to 45*
    2013 Significant pain down right, upper leg
    2015 MRI of lumbar spine detects "multilevel degenerative disc disease with disc bulges and facet hypertrophy" AND
    the presence of a "possible nerve sheath tumor" at L2-L3

  12. #12
    Join Date
    May 2008
    Location
    reno,nevada
    Posts
    3,555
    Wow Terry, the tumor sounds seriously painful, you poor thing......There has been minimal “congenital chatter” here on NSF lately....

    Is there any way to remove this tumor and do a nerve graft? Just wondering if anyone might have brought this up out of the blue?

    I have to admit, I had a very painful February with thoracic bear traps and gripping. We have also had record amounts of precipitation almost causing the Oroville dam to create a calamity. I have noticed increased pain with winter storms, the atmospheric pressure lowering resulting in nerve expansion. The weather data for March is lightening up in this regard so it will be interesting to see if you improve here shortly. Your testimonial will support my hypothesis. I have an old bear trap thread here, but the past few winters have been mild so no-one has posted there. (smiley face)

    Ed
    49 yr old male, now 58, the new 53...
    Pre surgery curves C12,T70,L70
    ALIF/PLIF T2-Pelvis 01/29/08, 01/31/08 7" pelvic anchors BMP
    Dr Brett Menmuir St Marys Hospital Reno,Nevada

    Bending and twisting pics after full fusion
    http://www.scoliosis.org/forum/showt...on.&highlight=

    My x-rays
    http://www.scoliosis.org/forum/attac...2&d=1228779214

    http://www.scoliosis.org/forum/attac...3&d=1228779258

  13. #13
    Join Date
    Feb 2016
    Posts
    15

    No easy solution

    Quote Originally Posted by titaniumed View Post
    Wow Terry, the tumor sounds seriously painful, you poor thing......There has been minimal “congenital chatter” here on NSF lately....

    Is there any way to remove this tumor and do a nerve graft? Just wondering if anyone might have brought this up out of the blue?

    I have to admit, I had a very painful February with thoracic bear traps and gripping. We have also had record amounts of precipitation almost causing the Oroville dam to create a calamity. I have noticed increased pain with winter storms, the atmospheric pressure lowering resulting in nerve expansion. The weather data for March is lightening up in this regard so it will be interesting to see if you improve here shortly. Your testimonial will support my hypothesis. I have an old bear trap thread here, but the past few winters have been mild so no-one has posted there. (smiley face)

    Ed
    Actually, the primary way of dealing with these tumors is to remove as much of the tumor tissue as possible with surgery. There seems to be a general concern that radiation this close to the spine is risky and if the tumor is relatively large, it does not immediately take pressure off the nerve if they irradiate it. Also, the standard recommendation is to biopsy these tumors to see if they are cancerous. The neurosurgeon I talked to at my HMO didn't recommend surgery. She didn't even want to try to do a biopsy because she thought the risk outweighed the possible benefit. She said she would not be able to really de-bulk the tumor because it was wrapped around a nerve. I also think that she thought there would be a big risk to the stability of my spine. There is probably only a handful of surgeons in this country that have the kind of expertise to really do this surgery well. I didn't have the kind of health insurance that would allow me to go shopping for surgeons.

    I live in Northern California and I know what you are talking about with regard to the weather pattern here. I do think I had more pain this winter and I think it was correlated with the change in weather patterns. I had never heard a theory of why a change in barometric pressure could trigger nerve pain until I read your last post. I do remember thinking: what's up with more pain when the weather changes? I then found a presentation by a Standford pain specialist who commented that when the weather changes, his clinic gets a noticeable increase in calls for help. I will see if I can find your bear trap thread.

    So here's the thing with electing to try to fix something with surgery: you always run a risk that things could get worse. And then you have to ask yourself: (1) how much benefit am I likely to see and (2)what costs [and I'm not talking money here] will I incur with the decision to proceed with surgery? As Linda Racine has aptly pointed out, you need to be in a lot of pain to be comfortable making the decision to elect to have a fusion to the sacrum/pelvis. I know that there could be a point in my future that I might be in so much pain that I might be willing to risk anything to get out of it. I think that the fear of being in a lot of pain for an indeterminate amount of time got me to start this thread. I have tried to calm down so I can get a reasonable perspective.

    It's my sense that your surgery was successful. You likely had a good surgeon. You might have been lucky enough to be in good shape before the procedure and you worked hard getting back your health. In the scheme of things, you were relatively young and your bone density was likely pretty good. You had a lot of things going for you AND your drive and discipline maximized these factors. It's probably a fair statement that you had a good outcome. Given that people who are in pain are driven to Forums like this [rather than people who are feeling good], you are a good balance to the very difficult stories we read here. But here's the thing with your post: you still have pain. It is probably less than the pain you had before but you still have to deal with pain. So even when you are lucky with a surgery like this, it's not like you get the "get out of jail" card with regard to pain. It's the old: damned if you do and damned if you don't. It would be great if there was a computer algorithm that could calculate a risk to benefit ratio for us but unfortunately there's not. It's up to the frailty of human judgment: do I stay or do I go?
    1973 Diagnosed with scoliosis [left thoracic curve 75* and right lumbar curve of 72*]
    Spinal fusion surgery with Harrington Rod instrumentation
    Left thoracic curve corrected to 55* and right lumbar curve corrected to 45*
    2013 Significant pain down right, upper leg
    2015 MRI of lumbar spine detects "multilevel degenerative disc disease with disc bulges and facet hypertrophy" AND
    the presence of a "possible nerve sheath tumor" at L2-L3

  14. #14
    Join Date
    Sep 2016
    Posts
    83
    Terry,

    The tumor risks are pretty high with atypical curves and I will be relieved when I finally get the entire spine looked at via MRI. For several years I have thought I should have had one and living in Louisiana just made it even worse for any kind of care with Scoliosis. I told my local orthopedic a couple of years ago about he risk with a large atypical curve and "that I read about it on the internet" and I have pain now and would like it checked. His response was pretty much, stay off the internet, you do not have anything wrong with your brain stem or spinal chord. After visiting with a Scoliosis Specialist, that was something he said I had to have to rule out. It sounds like they have come along way with treating the tumors though. My uncle had one wrapped around his spinal chord when he was 20 years old and they treated it with Cobalt and it ended up growing and causing his spinal chord to be cut off. He has been in a wheelchair for 20 years now. The Dr's tell him that treatment was different in the early 80's and it would be a much different outcome if they would have treated it now with todays method.

    I like you, have come to realize, treatment is never a guarantee and we will always somehow live with different outcomes with scoliosis, no 2 curves are alike or the pains we feel.

    Thank you for the information on the NST.
    Melisse
    Age: 42: with 42* Lumbar, 32* Thoracic.
    Diagnosed with Adolescent Scoliosis @ 12 y.o. Thoracolumbar curve was around 28*
    Wore Boston Brace 2 -3 yrs

  15. #15
    Join Date
    Dec 2015
    Posts
    12
    I sound similar to you. Harrington Rod T4-L4 39 years ago, L2-S1 fusion with screws into pelvis across SI Joints 3/2016. I was on NSAIDS x 20 years, deep tissue massage x5 years, and many other coping mechanisms trying to put off the inevitable. I took no narcotics. Frankly, with my job, I deal with chronic pain sufferers daily and I WAS NOT going down that path, so I was extremely motivated to find other ways to cope with my pain. I also experienced SI Joint flare ups many time a year, which the massage therapy helped alot with too. Since my surgery a year ago, I have had zero SI Joint flare ups. I no longer feel like an 85 year old getting out of bed in the mornings. My pain is minimal, but when I start to experience hip pain which I attribute to hip flexor and piriformis tightness (I do a ton of driving and sitting at desk), a visit to my massage therapist puts everything right. I was going every 2-3 weeks before surgery, now I go about every 2-2.5 months before I feel the need. This has been my experience, and I wish everyone facing what we have had to face due to scoliosis has had outcomes like I have experienced.

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •