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amber3212
@amber3212

Posts: 7
Joined: Mar 05, 2018

HELP PLEASE..losing movement from the neck down.

Posted by @amber3212, Fri, Oct 12 8:45am

I am here for help for Momma.
We are at a complete loss of where to take her. I dont even know if I'm in the right category…
Mayo clinic will not accept her…we've tried 3 times…with referrals and without and every time she has been denied 🙁
I will try my best to explain and make this as short as possible. We have been looking for answers for going on 2 Years…and I am exhausted. Started off in 2016 with her having a 4 day long migraine and neck pain for 4 days straight. And on the 5th day we were driving home from a family Christmas and she lost movement from her neck down. Headache and severe neck pain. Still had feeling/ reflexes and such just unable to move anything from. The base of her neck..down.
After 8 days in the hospital she finally stayed to regain her arms/hands and had to learn how to feed herself and walk again. So she went to the nursing home for rehab. The hospital sent her home with a diagnosis of Conversion disorder 😠 since the MRIs, CT scans and everything else came out clear.
She has had this happen 100s of times in the last 2 years and noone will help.
She has had her neck fused from c3-c7 and has DDD, RA, Fibro and has been recently diagnosed with Small Fiber Polyneuropathy.
We have seen specialist after specialist:
Went to TX To see Dr. Trevedi in thinking maybe it was HypoKPP.. she said it wasn't. It was Secondary Periodic paralysis with an underlying medical cause.
Went to Endocrinologist thinking maybe conn syndrome, pheochromocytoma because during some episodes her BP spikes really high with the highest being 259/137. Conns and Pheo was ruled out. She has also had significant weight gain and severe fatigue.. cant figure that out either.
Went to Caring medical and she was diagnosed with C1/c2/c3 cervical instability but not bad enough to do surgery on.
Went to Cleveland clinic and they agreed it wasn't bad enough for surgery and nothing in her neck would cause this.
Fast forward to today.
THERE IS SOMETHING WRONG WITH HER NECK.
Yesterday riding in the car after shopping she turned her head and her neck popped super loud, like I had just popped my knuckles. She got an instant headache, severe neck pain and severely tired where she couldn't even open her eyes and lost movement from her neck down. This is pretty much what happens everytime. Her BP spikes too and she gets hot.
But all the docs say there is nothing wrong. The pain managament doctor said she has a whole lot of scar tissue that's wrapped around her nerves and bones and the fusion spots that could be causing all this neck pain.
The only thing I can think of is maybe this is the way her body reacts to pain? Shuts everything down except the vital things (heart, lungs, respiratory system ect) in response to internal pain? Her GI tract "paralyzes" also and shes been diagnosed with slow colon.. All I know is… we've got to find answers!!! PLEASE HELP!!!! 🙁

REPLY

Not fibro. Take her to see a spine surgeon, maybe she has a pinched nerve. I was told because of my back issues to see a spine Dr asap. In 1984 went to bed with both feet tingling, some at 4 am 95 % paralyzed, voice in a well, totally blood shot eyes. it was gone the next day. Emergency room doctor sent me to neurology, then 16 years and no diagnosis for that episode, knew I had ms, in 2001 finally a diagnosis of ms. You need to find new doctors now! And keep going to new doctors until you get helped, New clinics too. I have had fibro since 1984, so know that well. Also ask about ehlers-danlos syndrome because of her issue with neck in car, maybe dislocated it, Also need a full workup on all bones in back. They may be out of allignment, Don't see a chiropractor, but do see an osteopath, has DO instead of MD, same thing. Ask about gentle manipulations, they are able to move your arms & legs with no pain, released tight muscles, saved my back. I know your pain, I have everything.

My heart goes out to you and your momma. You have done everything possible to find a cause in hope of then getting a specific cure. I do not know how old your momma is but, if you think her pain is so great and her body shuts down for protection, you’re probably right. The drs. have carried out all the tests and do not recommend intervention. Perhaps it’s now time to accept that and attempt to stay calm and reassure her that you love her. Focus on the enjoyment of chats with laughter, cups of tea, and healthy meals that you prepare together. Soothing baths and gentle massage should give her some relief. This may be the time to accept her pain management as your role and attempt to reduce or eradicate it for certain time frames. I am not in the medical profession but I did care for my mother who, over time, had days when she took flights of stairs independently, and then had days when she demanded a wheelchair. It was me that had to adapt to her needs, she clearly let me know. She taught me to focus on her heart and mine and with compassion and daughterly love we enjoyed many more years together. Accepting it and relaxing into it helped her to be happy for the most part. It’s a difficult transition to take the role of mother with your mother and at the same time respect her as your mother. With a sense of heartfelt equality and an awareness that you’ve called out to all the professionals, this attitude of calmness and healing (alleviating pain periodically) may eventually give you certainty that this is your new role. Good luck to you and your momma and God bless.

@deliasanderson

My heart goes out to you and your momma. You have done everything possible to find a cause in hope of then getting a specific cure. I do not know how old your momma is but, if you think her pain is so great and her body shuts down for protection, you’re probably right. The drs. have carried out all the tests and do not recommend intervention. Perhaps it’s now time to accept that and attempt to stay calm and reassure her that you love her. Focus on the enjoyment of chats with laughter, cups of tea, and healthy meals that you prepare together. Soothing baths and gentle massage should give her some relief. This may be the time to accept her pain management as your role and attempt to reduce or eradicate it for certain time frames. I am not in the medical profession but I did care for my mother who, over time, had days when she took flights of stairs independently, and then had days when she demanded a wheelchair. It was me that had to adapt to her needs, she clearly let me know. She taught me to focus on her heart and mine and with compassion and daughterly love we enjoyed many more years together. Accepting it and relaxing into it helped her to be happy for the most part. It’s a difficult transition to take the role of mother with your mother and at the same time respect her as your mother. With a sense of heartfelt equality and an awareness that you’ve called out to all the professionals, this attitude of calmness and healing (alleviating pain periodically) may eventually give you certainty that this is your new role. Good luck to you and your momma and God bless.

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Thx Lisa

@amber3212 Amber, I think you are right that her neck is the issue. If she has cervical instability at C1 C2 & C3, the bone of the vertebral bodies could be slipping and contacting her spinal cord. If she has stenosis and bone spurs there too, it can compress the spinal cord and if it's out of alignment, the spinal canal gets smaller. I had a disc rupture with bone spurs at C5 C6, and I heard my disc pop when I turned my head when it went past just being a bulging disc. the facet joints can also snap and make noise if they are arthritic. I don't have instability, but I did have central canal stenosis and a compressed spinal cord, and muscle spasms were moving the vertebrae around and loosing the normal curve. I had pain all over my body, drop foot and spontaneous muscle spasms, and when my physical therapist realigned everything for me, it got better until the next spasms moved it again. I had a fusion at C5/6 at Mayo and it resolved the problems. Riding in a car can still trigger a muscle spasms and bad headache for me, and I have to check my alignment at C1 & C2 & C3 and work on the muscles that cause it. I do also have thoracic outlet syndrome that makes one side of my neck too tight and causing the vertebrae to twist or tilt. I sill work on those spasms and strengthening to try to prevent that. Instability at C1 & C2 can be dangerous, and a lot of surgeons don't want to touch that. What reason did Mayo give for denial and did they see the imaging of her spine? Which Mayo Clinic did you try? Is it her age, insurance or other health issues that affect this decision? You could get her a hard cervical collar to use when she needs it (and for use in car) or consider physical therapy with a neck specialist, but with instability that might not be an option. She really should see a spine specialist who specializes in upper cervical and skull base surgery. A lot of surgeons don't want to work on those levels, and they might not want to fuse everything since she's already fused from 3 to 7. I know from my own experience when my neck position caused pain and problems that came on or turned off with the position of my cervical spine. My blood pressure would go up too if I was afraid of what just happened by turning my head. There are also some circulation issues that can happen with the vertebral artery or jugular veins from misalignment of upper vertebrae and the skull. I'm not trying to worry you, but I have read about these types of problems. Can you give me more of the details?

I have stenosis too, pain Dr said I have a lot of company. So lucky I don't have to work! I see a dr of osteopathy. She fixes me for about 3 weeks. Medicare pays. She uses gentle manipulations. Amazing. I saw a pt in the 90's who did the same thing. Problem, also scoliosis.

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