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Spinal Stenosis+Spondylolisthesis+Scoliosis- suddenly are problems
Suddenly these have all stopped my manageable, fulfilling life. All became a problem when I moved from East Coast to Mid-West 2 years ago. Strange timing. Have been athletic all my life, very healthy, a few surgeries (TKRs etc.) - but always good recovery and positive attitude. Now I am at the abyss.
I am (please don't let this prejudice you) 84. But I do not feel like it or look it or act like it. I decided TOPS Spinal would be a good fit for me. After wasting 8 months, 2 MRIs, Xrays, long-distance trips to NY City counting on TOPS, I have been rejected. Due to Bone Strength and AGE. I have a lot of comments on how this was handled, but am trying to redirect myself and just try to address one issue at a time. TOPS is designed for Stenosis and Spondylolisthesis so sounded good for me. But I also have Scoliosis. (This became a sudden problem.) This has all come to the fore front in the past 2 years. My usual life is gone. But I have been doing gym exercises 3 or 4 days a week and about to start P.T. I think I am seeing a little light because the stronger back and leg muscles are helping (slowly) to help support my walking. I still lean to the right and my back tires rapidly FROM HEAVY DOWNWARD PRESSURE when walking. As long as I can sit at frequent intervals, I can manage. I finally broke down and purchased a Walker. I am embarrassed, but I believe this will be a BIG HELP to get through certain parts of the day. The Dr. who rejected me barely offered any ideas or discussion which direction I can go in now. I needed his guidance, but received almost none. He ordered 2 MRIs and Xrays. But he kept me waiting for 7 months. I do understand TOPS is new spinal surgery, but I believe he could have figured out my rejection sooner. Now I am restarting. Is it possible to address Scoliosis first? Then address Stenosis and Spondy? Scoliosis gives me the most misery and it should be addressed. I believe I should seek out a large medical organization which has many resources - so I do not want to stay local. have been to Lenox Hill Hospital in NY, Cleveland Clinic, and a local Dr. in PA where I now live. Of course, first choice was always Mayo Clinic, but the distance was a problem.
I ask myself, what would I do if I had a problem over time? I could not easily run to Mayo. Cleveland is more accessible and so is New York. Question: I have read Mayo has a limited presence in Pittsburgh, where I now live - but it seems to be all Pediatric. Could I possibly go there as an adult? I HAVE TO GET THIS SHOW ON THE ROAD - I HAVE LOST 2 YEARS ALREADY AND STILL HAVE NO DEFINITE DIRECTION. I am losing confidence in many ways.
Would anyone like to see my 2 MRIs and Xrays and medical reports?
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It seems like a doctor needs to pinpoint where the exact cause of the pain is coming from. PT can help with that also. Have they ever done any injections to see what works or which area is the most painful. I too had lumbar spinal stenosis and spondylolisthesis above and below L4/L5. I went to Mayo as another institution “did not know why I had so much pain”. On my initial interview, they looked at MRI and had the exact place they thought was causing my problem. An injection that day, gave me unbelievable relief for 5 months, and confirmed their suspicions. The other institution’s pain management had wanted me to undergo a different type of injection that would not have worked. I stayed active for 2 yrs using injections and then developed neurogenic claudication and it would take 4 hrs to be able to stand after being in bed. I had to have a friend drive me the 8 hrs there and 8 hrs back as I could only tolerate lying. I then opted for just the laminectomy without spinal fusion knowing that I may need the fusion later. It was the best decision to go to Mayo and quit the lack of care/guessing/wasting time/excess testing w/no decision/plan. I am still doing well 3 yrs after laminectomy.
I wish you all the best and hope you get a plan that lets you get back to living as you want!
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4 ReactionsConsider what your activities of daily living were before you moved to the mid-west and compare them. What are you doing differently? Also, with your age (sorry) our spines continue to breakdown and we suffer as life continues. I’m 74 and had fusion is 1990 L4-S1 with stainless steel plates and screws. Since then I’ve been diagnosed with scoliosis, osteoporosis, osteoarthritis, multiple lumber vertebrae with bulging discs and foramen neuropathy, bilateral peripheral neuropathy arms and legs. I to am very active walking 2 miles daily, GYM 2x a week, home exercises 2x day. The more I move the better I feel. I’m now feeling my thoracic scoliosis is worsening since I’m having more back spasms in that area on the weaker side. I’ve accepted my fate and my back will eventually give way and win.
I can understand how you must feel but you cannot change the directory of life’s deck of cards. You eventually run out of cards.
@libertyusa @jenatsky (I thought you may be interested too.)
May I make a suggestion regarding scoliosis? Myofascial release has helped some patients reduce the curvature of scoliosis. It may help some when scoliosis is not hugely distorting the spine. I have heard of a patient able to correct 11 degrees of scoliosis with myofascial release. If there are bone quality issues, that certainly will influence if a person can have spine surgery because hardware needs good bone quality to stay secure. Surgeons are known to ask patients to improve bone quality first by working with an endocrinologist before spine surgery would be offered.
Here is our discussion on Myofascial release where you can learn more about it. There is a provider search at http://mfrtherapists.com/
Myofascial Release Therapy (MFR) for treating compression and pain
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/
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