Mayo Clinic Connect
I went to the doctor and she said that she doesn’t think I have sfn instead she says that I have something I think it starts with scoliosis and myelopathy. Is there anyone else who is dealing with something like this and how they?
Liked by Leonard
Myelopathy is just a general term that there is a problem with the Spinal Cord.
For example, my Dad broke his neck and had a fracture of the 5th Cervical vertebrae with dislocation, so technically it’s Myelopathy, Traumatic Myelopathy, but the specific diagnosis would be C-5 complete Quadriplegia.
If nerves are involved for whatever reason say some peripheral nerves you may have Neuropathy, I have Peripheral Polyneuropathy (Poly=many) caused from Seizure medication. My Dad had Autonomic Neuropathy which affected his ability to regulate his body temperature.
More than you wanted to know probably and we haven’t scratched the surface.
Liked by John, Volunteer Mentor, amomynous, nanashelly, rwinney
@nanashelly Are you seeing a neurologist or rheumatologist those Dr,s can help If your seeing your primary I,d suggest you follow up with either if the ones I mentioned
Liked by John, Volunteer Mentor, nanashelly
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Thank you, I'm going to call my PCP and suggest that she would send a referral to a neurologist. Thank you!
Wow, where would I be able to find out a lot more of info on this topic? Thank you for all your help
Liked by John, Volunteer Mentor, lioness, amomynous
@nanashelly Glad to hear that I'm sure you,ll get help there good luck
Liked by John, Volunteer Mentor
@nanashelly Myelopathy would be diagnosed by a neurologist or spine surgeon as some damage to the spinal cord. I had mild myelopathy because of spinal cord compression from bone spurs with cervical spinal stenosis in the central canal and had corrective surgery at Mayo. It did not show up on MRI. With more advanced myelopathy, it does show up on MRI as a whitish area in the spinal cord and can be permanent damage. If you have myelopathy and scoliosis, you may want to see a spine surgeon who's area of interest is in spine deformity. Here is a short video from my spine surgeon at Mayo about scoliosis.
Liked by John, Volunteer Mentor, amomynous
Thank you so much for your information, I had severe scoliosis they found it when I was 12 and wore braces until I was 16 and nothing happened so I ended up having surgery and this was in the 1970's. They fused almost the entire spine and put a rod in and they left 4 or so that were not fused. Now I have had 3 others one of them 5 yrs ago tried to fix my flat back and messed it up so 2 yrs ago I found a Dr who deals with spinal deformations and he did surgery and he was able to fix my flat back and after surgery is when I started to feel the numbness, tingling, pain and electrical shocks and it has moved all the way up my legs.
Liked by John, Volunteer Mentor, Jennifer Hunter, amomynous
@nanashelly You have certainly been through a lot and when pain becomes electric shocks that can get bad. With all your surgeries there will be fascial scar tissue that might be a contributing factor. Myofascial release with a physical therapist can help if it is an adhesion from scar tissue. There are also some nerve entrapments that can happen in the pelvis due to alignment that would cause sciatica pain type symptoms. The time that I had electric shock type pain, it was from the pressure of fluid from an epidural injection that had no place to go that put pressure on a nerve root in my neck. Have you contacted your surgeon about the pain? I do know there can be hardware failures and screws can pull out. The lower end of the spine is bearing all the body weight that adds more forces onto the hardware. I think you should get some imaging to see if anything has changed since your last surgery. My spine surgery was in my neck, so I don't have the same area affected, but I have watched a lot of online presentations at spine surgery conferences that talked about pedicle screw placement with hardware and what they call global spinal balance which has to to with the angles of the pelvis in relation to the spine and where your center of gravity is. With a flat back syndrome, the center of gravity is not in the right place. The angles, depth, and placement of crews is critical in how well they secure the hardware, and can cause failure if not done correctly. Because of deformity, sometimes surgeons are removing part of the bone to correct the angles in relationship to the other vertebrae before they fuse the spine in that position. You may also want another opinion from a spine deformity specialist. My surgeon (in the video about scoliosis) would be a specialist with expertise in this area. I would ask for an explanation with imaging as to what might be the source of your pains and if that pain is spine related or not. Here are some links with information.
I was diagnosed with Myelopathy of the lumbar area. It started out after my 3rd major back surgery. First was my right foot numb, tingling, feels like it's being shocked and painful. It then started moving up my right leg and so far it has slowed down above the knee. My left leg is also effected from the ankle all the way up to the middle of my thigh. I have tremors in my hands, my balance and coordination is completely off (I'm in therapy for it), I have incontinence problems. I don't know how much longer I can handle it the pain and not being able to get around very easy just doesn't have me very optimistic that my quality of life is going to get any better. If anyone out there is in a similar situation please let me know so I can hear other people's stories and how you are handling it. Thank you
Hi, @nanashelly – you will note I merged your post with the previous discussion you started on the topic of myelopathy. I can imagine that your pain that seems to shock in your legs, tremors, balance and incontinence would be distressing.
A few other members who may have input on your symptoms post-spine surgery include @lylafell @lourdes27 @gailb @amberheilman @wilcy @johnbishop.
Have you gone back to see the spine specialist who did your most recent surgery for a consult?
Liked by nanashelly
The last time I seen him and explained what was going on with me he just looked at my x-rays and said everything looks good and dismissed me.
@nanashelly A diagnosis of myelopathy is damage to the spinal cord. The dural covering of the spinal cord is fascia and connected to fascia. Possibly myofascial release could help if the issue is being caused by tight fascial scar tissue from the prior surgeries and if it is putting pressure on the dura. A physical therapist with spine rehab experience and expert level training in the John Barnes MFR methods would be good to consult. You can search for them on the MFR website. (See link below for information.) You may also want to consider a different surgical opinion other than the surgeon who operated on you. Sometimes when surgeons feel something wasn't successful, they wash their hands of it and dismiss you, and it would be a shame if that decided your future. I had that happen to me after a surgeon missed the thoracic outlet syndrome I had and thought his procedure for carpal tunnel syndrome should have fixed everything and he dismissed me and accused me of malingering. He wanted nothing to do with me after that and wouldn't authorize physical therapy for TOS. I had to find another doctor.
You have to advocate for yourself if you think you could potentially have a better outcome. If the symptoms you have now are from a compression of the spinal cord, it would be worth asking in there could be another solution taking into account the history of prior surgeries to the area if this is a lumbar problem. Sometimes, that is a surgical approach from a different direction. Sometimes there are also issues with nerve entrapment from tight muscles surrounding the pelvis which mimic spine problems. Physical therapy and MFR can help those as has been my own experience. I would also suggest that a spine specialist look at other areas of your spine. Hand tremors could be caused by a cervical problem, and a cervical spinal cord compression can also cause all the symptoms you mentioned… incontenence, balance issue, hand tremors as well as pain. I'll share some links in a discussion about MFR and a case study that I found about cervical spinal cord compression causing leg symptoms. I found that study right after I was dismissed by a surgeon who didn't believe that my all over body pain was caused by the compression in my neck….and it was the source of the problem. That is what brought me to Mayo for spine surgery and it fixed the problem. Here are links that may be of interest.
Liked by Lisa Lucier
i have had severe scoliosis (they also call it complicated, which should go without saying) for 73 years with little pain for the first 65. when i was at mayo for a kidney surgery a few years ago, the doctor mentioned a badly twisted sacroiliac. i thought it was just a casual comment because in my trips to mayo, now 25-30 years ago, all they ever told me was to keep on doing whatever i was doing. when i went to my doctor about the pain, he insisted i go to his chiropractor, over my objections. the chiropractor took some pictures and said the pain might be coming from the twisted sacroiliac. he uses some silly machine which one can hardly feel, but i am standing straigh
Hi, I have severe pain and cramping in my feet, legs, back, arms, hands, face, and head, and the teeth on my right lower jaw have gone numb and finally I am loosing hearing in my right ear lower tomes first., This mass of symptoms has been diagnosed as:
2. NIF-IgGs (neurofilament heavy and light chain) positive
Rhombomyeloneuropathy means a disorder that involves brainstem, spinal cord, and also nerve roots, and peripheral nerves. The second diagnosis has to do with the antibody found in my spinal fluid.
Anyone have any suggestions? This is myleoneuropathy from nerve degeneration rather than direct spine damage.
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