Living with Neuropathy - Welcome to the group

I suffer from extreme neuropathy from a spinal cord injury due to MVA. I am 74 years of age. I live with my husband who has banished me to my room because he can’t stand my pain. I have a little dog, Rossi, who doesn’t understand that his 10 pounds feels like an elephant in high heels tromping across my legs or his little head resting on my thigh is akin to someone resting an anvil on it. I injured my thorasic, cervical, lumbar and saccral spine areas. It was indeed the Jackpot. I can kind of lurch around with the help of my rolly but can’t stand longer then it takes to brush my teeth. As far as activities go, I keep up on news events. I am a MSNBC girl. I also have carpal tunnel in stereo so I cannot hold on to anything. The area alongside my bed is like a swamp from all the coffee, water, juice and adult beverages I have spilled. After fighting with a HMO that would not treat my broken bits, I have changed insurance, much to my husband’s chagrin, and am seeing the head of neurology with the University of Washington in 11 days and 6 hours (tick tick). I would like to meet others who are in the same boat and maybe we can help each other to not go stark raving mad from constantly feeling like we are on fire.

Welcome @msmunro, It must be difficult for you not having support and understanding from your husband about the pain from your spinal cord injury. There is a post by @jenniferhunter in another discussion on spinal cord injuries that has several videos and links that you may find helpful -- https://connect.mayoclinic.org/comment/643800/

I'm glad to hear you have an upcoming appointment. I normally like to write down my questions that I am trying to get answered at an appointment, especially if it's an important new appointment. Do you have questions you are trying to get answered to take with you to the appointment?

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/