Living with Neuropathy - Welcome to the group

Hi, I am Mary. I suffered spinal cord injuries to all four areas of my spine 5 years ago due to MVA. I have neuropathy ranging from sitting on a hot burner to having someone taking a blow tour h to me. E erything else I can kind of deal with, but this is driving me stark raving mad. Clothes hurt. Sheets hurt. I have taken to using my fur coat as a bedcover. That helps. I ice my tush and legs. I think I am going to get some help as I recently changed insurance from a for profit HMO to single insurance and have a hot date with the head of neurology at the University of Washington.in 11 days.
I hate to define myself by what is wrong with me but I am just a hot, and I do mean hot mess now.

Hi John, Yes, I have questions. I have also been sending info on the UW My Chart system. The doc wasn’t available for over a month. I have reams of questions and observations for him. I have all these telltale signs that point to Cauda Equina Syndrome. I’ll see.

Chocolate? Now you are talking!

Chocolate! Now you are talking my kind of treatment:

@msmunro I wanted to say hello. I'm keeping my fingers crossed that you will find some relief from your spine symptoms. A lot can change in 5 years since an accident. You could have developed bone spurs and nerve or spinal cord compression. Are you able to get any care giving help? I am saddened that your husband is not supportive and you deserve better. You should be able to enjoy your home and be uplifted by getting out of your room. Do you have a mobility chair? Honestly, I don't know if that would help or if it would cause more pain to be moving you around. Sometimes patients with compression issues like bed sores are helped by being on air mattresses on top of the bed as a way to reduce pressure on the body. Perhaps something like that could make you more comfortable? Perhaps you could find something that could also cool the mattress.

What medical treatment did you have right after the injury? Have you had medical help in the last 5 years for this injury? I at one time had an HMO insurance and they try not to have to pay for anything to help you. A PPO plan is much better and lets you make your own choices. I did have a whiplash the year I had an HMO, and all the doctor did was write down my symptoms and had me come back. He never sent me to physical therapy that could have helped. It took about 20 years, but I had a ruptured disc and bone spurs that compressed my spinal cord as a result of this accident, and I became a surgical patient at Mayo. With a spine injury and being a potential spine surgery candidate, choices are very important because not all surgeons are gifted. Sometimes surgery makes a problem worse, and if you have a complex spine injury and or deformity, you need a surgeon with proper experience like a head of a department and who is in demand for teaching his/her skills at spine surgery conferences. Many surgeons don't want to operate on the thoracic spine because of risks involving the lungs and access to the spine. Sometimes patients live with pain because of the surgery. Surgeons look to improve function and prevent further damage by decompressing something, and they can't always promise to reduce pain. In my case, my surgery was early enough before much permanent damage happened, so I had good results. I also had only a single level of damage in my neck that was operated on, and I have had a bulging lumbar disc for years, but so far that has been OK.

Pain is also increased by stress and fear. That can add more into the pain that you already have from the injury itself.

If you are able, you may want to get several opinions from spine specialists who are a the top of their game and who willingly take on the more complicated cases. Many surgeons pick and choose the easy ones so they will not have a possible poor outcome from a surgery that could lower their statistics of being successful, and thus affect the earning potential in their careers. Their procedures are rated, and they should be able to tell you the percentage of their personal success rates for any given procedure, and how that can be affected by other health issues a patient may have.

If you have questions about understanding what you imaging reports say, I can help with that. I studied a lot about spine surgery leading up to my surgery, and it took me a while to find a surgeon who wanted my case which is why I came to Mayo.

Will you keep me posted on what you will learn in 11 days at your spine consult? There may be some added days for testing or imaging and sometimes there is a wait for more appointments. I'm glad John shared the information from another post about current research for serious spine injuries. From your description, it sounds like your mobility is very difficult at this time. It looks like the University of Washington is highly rated. I happened to take a peek at the neurosurgeons, and I saw neurotrauma and neurological critical care listed as a medical specialty in one of the spine surgeons. It sounds like that is what you need.

Thank you for this great info. My son with the poly neuropathy is a chef so not eating regularly and balanced for ten years probably hasn’t helped. Just diagnosed in January when he fell down 12 steps and crushed his clavicle. Has only had an EMG test, which I’m thinking he should have more? He had had cold feet and hands for two years prior. Any suggestions on testing? Perhaps small snacks of good things throughout the day?

Concerns are depression meds with neuropathy meds. Sleep issues. Balancing work with all of this.

There is another discussion you might want to read what others have shared on Cauda Equina Syndrome: Pain, symptoms, management & prognosis: https://connect.mayoclinic.org/discussion/cauda-equina/

Thank you so much for your concern. Sorry that it took so long to reply. I fell asleep. I get some sleep about every third day.
I have to tell you that finding this link to other people with similar problems is a godsend. I have tried a few things to help with my pain issues that don’t involve meetings in dark alleys and consequential addiction that I can pass on. The UW does this thing called abulation of the nerves. Has anyone else heard of this? They also use Botox on the big nerves.
Listen, I just woke up and am still kind of groggy. I will talk again later.

Hi everyone, thank you all for your stories and suggestions/questions, it helps me to know there are other sufferers of SFN out there. Thank you John for your help to us all. I have burning pain on the soles of both feet, about 2/10 in the morning when I wake and up to 5 or 7/10 at night (depending on my activity levels during the day). I can say with confidence that Lyrica (Pregabalin) 150mg morning and night, prescribed by my Neurologist will reduce the pain level by about 2/10. This helps me live a normal active life from 6am till about 1pm. Then I must get off my feet to keep the pain level that night to 4-5/10. My neurologist says my condition is permanent (diagnosed 5 years ago). So 5 years experience on Pregabalin, and the above is what I can add to the discussion. I hope this helps somebody! My blessings to you all.