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3 days ago · Post-op care locally after surgery at Mayo? in Visiting Mayo Clinic

@amywood20 Mayo is a drive for me too.. 5 hours, but I compare that to driving to Chicago which is about 2 hours with crazy dangerous traffic, then the drive to Mayo through the pretty countyside seems so much better. I also know when I get there I am in a healing environment. it's a bit like a mini vacation and I avoid the over crowded big city. I'll be going back to Mayo in a couple weeks and looking forward to it. I am making slow progress with my ankle and sometimes I can forget what happened and it's not hurting. I'm sorry it happened too, but it was a freak accident that happened so fast when I fell from a horse while on a trip. This is the first time I have ever broken bones, and it has been very painful, even more painful than spine surgery. Moving around the house is a chore, so I plan so I don't have to make extra trips. I am counting the days until the cast comes off. When my ankle hurts, and I can't escape, it seems kind of claustrophobic, but when I keep the leg elevated, I do well because it keeps the swelling down. If you have any questions, I'd be glad to help. Each time I had surgery, we stayed an extra day at the hotel just in case there were issues.

3 days ago · Undiagnosed after 1.5yrs after many tests and specialists in Digestive Health

@jc123 After reading your post about multiple surgeries and chest pains, my suggestion is to have an evaluation with a physcical therapist who is an expert in myofascial release. This is therapy that helps me a lot. I have thoracic outlet syndrome and I am a cervical spine surgery patient. All surgery creates scar tissue in the fascia which will make things get tight. When my neck and chest get tight, it does make my heart race, and it does cause anxiety. The nerves controlling heart and lung functions are exiting the spine in the neck/shoulder area, and tight tissue restrictions could affect nerves in close proximity. I have had chest pains with a fast heart rate, and used my hands to stretch and relieve the spasms, which lowers my heart rate. I'm not suggesting anyone diagnose themselves this way, and I had been to an emergency room with symptoms like this and breathing problems, and a heart rate over 100 beats per minute, and was found to have a chest infection with excess phlegm, and heart issues were ruled out. This was several years ago before COVID. In speaking with my physical therapist, she said that if I was having a heart related chest pain, I would not have been able to relieve it within minutes with self massage and she knew of my emergency room visits. I now use this stretching to prevent problems and to maintain normal lung functions and chest breathing movement. Other possible issues can also be something like thyroid disease. I have that too and take desiccated pig thyroid medications, and when that dose is too high, it causes anxiety, fast heart rate, loose stools, weight loss, etc. If that has not been checked, it is worth checking. My dose has changed over time, and been adjusted.

Here is our discussion about MFR. You can find a provider search on the MFR website. https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

3 days ago · Post-op care locally after surgery at Mayo? in Visiting Mayo Clinic

@amywood20 Only your surgeon can answer if you need to do surgical followups at Mayo, so you may want to ask that when you speak with someone about scheduling. I have had 2 surgeries at Mayo Rochester, cervical spine surgery 4 years ago and orthopedic surgery for a broken ankle just a few weeks ago. With my spine surgery, it was not necessary to come back to Mayo for every followup, until the one year followup, but I liked coming back there. There was a 6 week, and a 3 month followup. The 3 month was done remotely by mailing in X rays. My physical therapist was sending updates. With my orthopedic ankle surgery, I need to return for each follow up. That involves removing the splint/cast at 2 weeks and removing stitches, and in my next follow up, removing the fiberglass cast. My spine surgeon used dissolving stitches, making return to Mayo optional. The orthopedic surgeon used nylon stitches, and return is essential to remove those and place new support dressings for the ankle. I would expect a shoulder surgery might be similar and need a return. Shoulders need to be assessed for proper movement and a surgeon would want to know how that is progressing. One thing I would also ask is if they can evaluate you for thoracic outlet syndrome which is more common among spine injury patients. That is a neck/shoulder problem and I had that along with my spine problem with a collapsed disc. It creates overlap in pain symptoms, and you can have both as sources of symptoms. That is misunderstood by a lot of doctors, but Mayo is a good place to have that evaluated and that was part of my original evaluation to figure out where most of my symptoms were coming from. If you had spine surgery, and TOS was missed, you would likely still have the arm pain. I had carpal tunnel surgery and TOS was missed for a long time. My experience with recovery from spine surgery also caused my neck and shoulders to tighten up making pain a bit worse until physical therapy could be done, and my therapist did a lot of myofascial release to break up the fascial surgical scar tissue. Here is some info on MFR. It may be able to help you.

https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

I could have found a local surgeon to operate on my ankle, but I didn't want to go to an urban medical center in a COVID hotspot, and I had concerns about infection rates at some of the smaller local hospitals and I didn't have enough information to know which surgeons were better than others. I knew if I came back to Mayo, I would have a really good surgeon and I would be in good hands, and I felt a lot safer at Mayo with the COVID precautions. It cost just a little more, because of lodging, but I think that's worth it for a better qaulity of care and healing. I contacted my spine neurosurgeon and asked is recommendation, and I'm grateful that I can ask that because of the good relationship I have with him and with everyone at Mayo. It matters to me to know that I could trust my care to world class surgeons, and I stop stressing about finding a good one on my own.

6 days ago · Second Opinion: thoracic myelopathy in Spine Health

@upnort Have you consulted with the Regenerative Medicine researchers at Mayo? If I am understanding correctly, there is a white area that shows damage within your spinal cord itself on the MRI imaging of unknown cause and they have not definitively linked that to your symptoms?

https://www.mayo.edu/research/centers-programs/center-regenerative-medicine/focus-areas/neuroregeneration

https://www.mayo.edu/research/documents/neuroregenerative-medicine-booklet/doc-20092381

Thu, Jul 2 2:31pm · Second Opinion: thoracic myelopathy in Spine Health

@upnort How about the Proton Beam? That is a highly targeted radiation that has been used on the brain. Is the cyst within the spinal cord, or on the surface of it? I don't know if this is a possibility or if anything can be done safely, but it came to my mind.

https://www.mayoclinic.org/departments-centers/proton-beam-therapy-program/sections/overview/ovc-20185491

Wed, Jul 1 5:26pm · Second Opinion: thoracic myelopathy in Spine Health

@upnort Is anyone looking at the lesion on the spine and if it is causing compression of the spinal cord and the symptoms of numbness? Have you considered talking to a neurosurgeon? You could do that at Mayo. Sometimes their opinions differ from a neurologist a bit. The neurologist I saw at Mayo didn't paint a bad picture of my spine because there was no spinal cord damage evident on the MRI, and he didn't really know what the neurosurgeon would say, but the neurosurgeon said that myelopathy doesn't always show up on an MRI and he offered surgery. Is the lesion something that could be operated on?

I had another thought. Are there any vascular or circulation problems to your legs? That could produce numbness, and also something like overly tight fascia or muscle in the pelvic area. Sometimes doctors don't think of that, but it is a physical problem that can compress nerves and blood vessels. Here is a link that can explain that type of issue. https://mskneurology.com/identify-treat-lumbar-plexus-compression-syndrome-lpcs/

We also have a Myofascial release discussion with lots of information. That could be something to try, and you don't need to know an exact cause before you start. An MFR expert therapist can feel with their hands the pathways of overly tight tissue. We sit a lot, and that can cause an overly tight pelvis that can mimic a low back problem. I myself have had some sciatic pain, that disappears when I get my pelvis leveled out and maintain that by building core strength. I do also have a bulging lumbar disc that will crack on rotation, and that is stabilized by core strength. Here is our MFR discussion. There is a provider search on the MFR website. The stiffness you report in your thighs and feet might support that kind of suggestion. I remember having muscle spasms because of my spinal cord compression. Basically, when you compress a nerve, it fires, and when it fires fast enough, it goes into a sustained contraction like a muscle spasm instead of a twitch response that happens at slower impulses with one twitch for every electric nerve impulse. https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

Wed, Jul 1 1:51pm · Art for Healing in Just Want to Talk

@hopeful33250 Thank you Teresa. I enjoyed making the video, and even now, it is inspiring to me to watch it knowing that was my first painting after spine surgery, and I really love the music.

Wed, Jul 1 11:44am · Second Opinion: thoracic myelopathy in Spine Health

@upnort I understand your frustration of not finding a cause and getting a proper diagnosis. That kind of happened to me too with cervical stenosis and mild myelopathy that did not show up on the MRI and 5 surgeons turned me down. It was after I found medical literature with cases like mine, that I had an answer, and I sent that to Mayo with a request to be seen there and I did have spine surgery that resolved the problem. You can also check hospital rankings to look for other specialists. Currently In the rankings of US News and World Report, for hospitals, Mayo is #1, Massachusetts General Hospital is #2, Johns Hopkins is #3, and Cleveland Clinic is #4. There is also Becker Spine Review website that has numerous lists and news about what is current in the spine specialty, and news about specific specialists and their research and interests. Your neurologist at Mayo may be able to give you names of specialists at other institutions for a second opinion. Doctors who go to spine conferences will meet others and get to know something about them. They are there watching case presentations and learning about new techniques and research.

Something else that comes to mind that is worth asking about is if there is an infectious or inflammatory disease rather than a physical problem that could be causing the symptoms, something like Lyme disease, ALS, or MS. Those are things that spine surgeons have to rule out when they are searching for a cause of symptoms. Has your neurologist done testing for something like that or referred you to a specialist?