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

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  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, Iíve 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, Iíve 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, Iíve developed significant pain in my left sacroiliac joint [SIJ]. Recently, the pain is so bad that at times, I canít 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 couldnít be too much worse. I have an appointment with one of my HMOís 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 ďwait and seeĒ approach because that is the most "cost effective" approach. I donít know if I can handle the ďwait and seeĒ 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 doesnít 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
    3,552
    Terry, you have done battle for a long time....and I know that the NSAIDís handle around 80-85% of the pain, but not all of it. You also cannot overtake these meds....thatís a no-no.

    If you post that you cant ďwait and seeĒ by waiting for shot results, you must be in major agony, Iím 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 donít 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 tryís 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 didnít 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 canít 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
    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

  5. #5
    Join Date
    May 2008
    Location
    reno,nevada
    Posts
    3,552
    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 didnít work.

    I cant speak highly enough of Linda and everyone down at UCSF. For scoliosis related stuff, itís 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. NSAIDís 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 herniationís 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 donít know what the stats are on SI joint fusion......I donít 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 herniationís, (I had 4 lumbar herniationís 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 didnít 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

  6. #6
    Join Date
    Sep 2003
    Location
    Northern California
    Posts
    6,798
    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.

  7. #7
    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 didnít 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

  8. #8
    Join Date
    Feb 2016
    Posts
    15
    Hi Ed,

    First, I just think you are an angel on this forum. I know that ďangelĒ seems a little over the top but Iím 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 ďscolisĒ 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 donít know that you represent the ďaverageĒ 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

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