← Return to In recovery. Too many symptoms. Autoimmune disorder? HELP!

Comment receiving replies

Wowzers Jennifer!! You've blown me away with your superior articulated wealth of information and knowledge here!!!

First let me say that I feel very badly about what you two have been through and are going through. My heart goes out to you both.

@caseygirlx0xmv I will be praying for the perfect doctor for you and the best treatment medicine and skill has to offer you.

I have had 3 major falls and a few not as bad. I was pushed down a full flight of hard stairs, fell down a full flight of wooden stairs, fell off a horse at a full gallup, was pushed down about 6 steps onto a frozen ice-covered ground, tripped and flew/skidded distance onto a concrete driveway, had a big rock thrown at the back of my head while trying to run away and flew to the ground. I also fell recently on my carpeted floor when my foot got caught in my bedskirt.

I 've had 3 lumbar surgeries, the 3rd was a fusion. A recent MRI shows pathology in my C and T spine. I have neck pain and jaw pain on one side. I was surprised to see that you have the same Jennifer!

I recently had a lumbar injection and on 11/11 am scheduled for a C-spine and occipital injection. I so hope they help my neck and right scalp (sounds a lot like peri-auricular neuralgia) for years which keeps me from getting the sleep I need!

I see my neurosurgeon on the 29th again for my "severe" spinal stenosis (lumbar area). I've got all the symptoms of equine cauda syndrome but thankfully there is a tiny bit of fluid around my spinal nerves so am not an emergent surgery right now.

I will be praying for you both for relief and healing.
Many blessings, Sunnyflower 🙏🌹🤗🙏🌹

Jump to this post

Replies to "Wowzers Jennifer!! You've blown me away with your superior articulated wealth of information and knowledge here!!!..."

@sunnyflower Thank you. I don't really dwell on the problems, just the best choices I can make to fix the problems. I have learned a lot from my own experiences, my expert physical therapists, as an advocate for my elderly parents, and the biology degree I got years ago. I read a lot of medical literature to learn about my own physical issues, and being a creative person, I recognize and remember patterns which in this case are collections of symptoms. I learned a lot of human anatomy in biology and art school, so I think in 3 dimensions which helps me understand the physical problems.

I had only one cervical spine injection and will not do them anymore. I had a bad reaction with a paraesthesia that caused burning stabbing pains in my hand for a couple months because the injected fluid had nowhere to go, and cold sensitivity for a year and a half. The doctor was an anesthesiologist and he told me that spine injections should not be done above the C6 level because they were too dangerous. Ask many questions before you let someone do that and this is an off label use of steroids because they were not FDA approved for spine injections. You can look up a lot about that. The nerves that service your lungs emerge from the spine at about the C3 level which is why injections there are risky. The occipital muscles on the back of the skull can be very painful if alignment is askew in the neck, and that can be treated by a physical therapist. The joints of the skull can be out of alignment, a PT who does cranial work can help. The occipital muscles have some attachments that pull on the dura (covering of brain and spinal cord) which causes headaches. My PT explained that to me. I know it sounds funny to say this, but literally there have been times when my skull was not sitting straight on top of my spine, but slightly misaligned due to muscle spasms, so I didn't have my head on straight.

I guess we have a bit in common. My ankle fracture last May was caused by falling off a horse at a full gallop that had spooked because of a loose dog…. not my horse, but a borrowed horse because my old bomb proof horse was not sound enough to go on the trail riding trip. No more green horses for me! I have been in physical therapy for the last 2 months learning to walk again and trying to do it right and challenging the muscles to return. After 3 months of no weight bearing, my entire leg is smaller and weaker, but I am making steady but slow progress. My cervical spine issues were from a whiplash years earlier, and as a kid, I also fell on my face and broke my front teeth which caused many dental problems over the years. I'm still dealing with that too. Injuries cause many problems that can go on for years. I am doing well. We do have an amazing power to heal if we do the right things. Physical therapy and myofascial release has done a lot for me. Your severe spinal stenosis doesn't sound so good. I hope you get that resolved and recover. I'll be rooting for you! I hope you share your experiences here.

These articles can explain a lot. There are ones about axis/atlas instability C1 & C2, TMJ, Thoracic outlet syndrome, spine, etc. The are technical and long and written for physical therapists. https://mskneurology.com/category/articles/

  Request Appointment