Cramp Fasciculation Syndrome

@soccer1477 I am sorry this post was missed. I usually hang out in the Spine group and we have communicated a lot there before. You have been dealing with pain and all these spine symptoms for a long time and it doesn't seem that your doctors are helping much. There is a lot going on in your neck, thoracic and lumbar and your case is complex because of this. It is possible that the surgeons are not sure how to proceed or know what would give you the most relief. They may be afraid to touch it for fear of a poor result. You need a surgeon who is not afraid of a complex case. I saw your most recent post in the Spine group about recent nerve test and EMG results.

When they start throwing possible alternate diagnoses at you and begin their detective work, it gets very confusing for awhile. With multiple problems that can cause similar symptoms, it makes this more difficult.

If you want to go to Mayo Clinic, I think you should go. It is a world of difference to be seen there as a patient and when you are seen, it is very efficient in getting testing appointments there because they have a lot of capacity within the facility and for me they got everything done within 3 days for all consultations and an offer for surgery that was scheduled 5 weeks later. I was seen in Rochester which is the largest and original location, and Jacksonville is a smaller facility. I know you said that you are unable to drive, and that's OK . You can fly to Mayo. I saw another post of yours saying you live in Florida about 4 hours from Mayo Jacksonville. Can you get a buddy to drive you there? Jacksonville and Mayo Rochester have airports and you can get connecting flights. Hotels have shuttles to clinic locations.

The first step in an inquiry might be a call to the billing department at Mayo to ask if your health insurance is accepted there. It is not the same for all Mayo campuses. Then you apply to Mayo, and they will ask for medical records and copies of imaging on disc to be sent it. From there, a doctor will review it and if they can help you, you may be offered an appointment. I do think that the difficulty you are having right now in getting help locally would help you get into Mayo. They are known for taking more difficult cases. My neurosurgeon at Mayo Rochester likes challenging cases and that was at the core of why he decided on a spine neurosurgery career. He would be a good fit for your spine issues.

You will need to decide what you want to do and advocate for yourself. Don't let the indecisiveness of your doctors determine your future. You can solve the travel issues and don't need to be the driver. Take control of the situation and ask for what you want. The decision to go forward with spine surgery belongs to the patient, but that will only be offered by a surgeon who wants the case. If your surgeon doesn't want the case, you'll need to find another. Sometimes, you find someone even better. That was my experience; after 5 surgeons who didn't want my case refused me, I asked a brilliant one at Mayo and he took my case and changed my life. My surgeon, Jeremy Fogelson, is a respected spine deformity expert who operates on the entire spine and he teaches and mentors other surgeons in the Mayo Neurosurgery program as well as presents his cases and research by teaching at spine conferences. https://www.mayoclinic.org/biographies/fogelson-jeremy-l-m-d/bio-20055624

Mayo Insurance & Billing
https://www.mayoclinic.org/patient-visitor-guide/billing-insurance
Link to seek care at an Mayo Campus
http://mayocl.in/1mtmR63
Story about my neurosurgeon, Jeremy Fogelson (you can request that he review your records when applying)
https://newsnetwork.mayoclinic.org/discussion/sharing-mayo-clinic-spinal-surgery-saves-teen-swimmers-mobility/
Lots to think about here. Let me know if I can be of further help.

Jennifer

@jenniferhunter Thank you very much for your reply, i actually wish i could make it to Mayo but with the pain and the long drive 4+ hours, i don't think it would be possible. Thank you again, and hope you have some awesome holidays.

@soccer1477 Thank you for your greetings. Do you have a good medical facility near you with good spine specialists? I do look at resources like Becker's Spine, and US News and World Report to find information about medical centers and surgeons. There are also helicopters which I am sure are really expensive, but I know that Mayo has their own helicopter that picks up patients and takes them to Mayo for treatment. Do you need to be laying down for travel? There is also medical transport which is an ambulance. That can be a really rough ride though. My experience of being transported by ambulance after I broke my ankle was that I felt every bump in the road as I was strapped to a hard board secured to the truck bed. It was an hour ride to the hospital emergency room.

Is there a plan in place for help with your current doctors? Have your doctors discussed your current condition and how it may progress toward greater disability and how fast that may happen? I know from talking to spine patients that it is hard to live like that and there is a window of opportunity to fix this before it gets permanently worse. There was one woman in England on facebook who was too afraid to have spine surgery that she has become wheelchair bound and is a financial burden to her family and her life is begging for money online. They can't just be a family anymore because mom cannot leave the wheelchair. My elderly parents are wheel chair bound, and I have had to take care of them, and it is very hard and exhausting. You can't keep hired help for this because no one wants the job and burnout rates are very high. My dad has passed now.

I wish you awesome holidays too. If I could send you some holiday magic somehow, it would be for you to find your way to the care that you need. I do have to tell you about another member here on Connect, and for me, this was the most awesome thing that could have happened and I am grateful to have helped him find his way. I have never had an interaction and influence like this before in helping someone else and it gives me goosebumps.

He lives in the South and because of severe central spinal canal stenosis, he could no longer walk and was wheelchair bound. He had lots of problems with his digestive system, so much, that because of severe intestinal blockage, his doctors wanted to remove his colon and he didn't realize that his GI symptoms may have been related to the spinal cord compression. He wanted to come to Mayo, but having just come through the Pandemic and lost his job, was forced to take early retirement, they had a lot of financial hardship. Travel to Mayo for treatment was more than they could afford even though Medicare would have covered the surgery. About the same time, I was talking to another member who was disappointed about being denied an appointment at Mayo Jacksonville. He was new to a spine condition, and asked me how I knew which surgical opinion to choose and how I knew which opinion was the right one. I described in detail how I knew how to relate my symptoms to my imaging reports, and he shared with me that he had heard good things about a spine surgeon in New Orleans. Then he told me he was a retried radiologist and that was why he wanted to know how to connect the symptoms. He went for a consultation, and shared what he thought about the doctor which was positive. Of course, I looked up the surgeon and watched a video interview with him. He seemed to be a surgeon I would trust, and this retired doctor liked him and after seeing 6 spine surgeons, I had a sense of if they understood the issues. So I shared this surgeon's name with the member who was wheel chair bound. He went to see this surgeon, and had surgery with him, and after 4 months of rehab and physical therapy, this man can now walk again! He had also shared a video of his progress right after the surgery to let me and his family/friends know how he was doing. That was also rewarding for me. Going from a wheelchair to walking was possible because he believed he could do it, had a good surgeon who he found because of our shared conversations.

There is a reason why I help on Connect, and that is because my journey to spine surgery and recovery was very difficult. I learned how surgeons confuse symptoms and head down a wrong path instead of digging for the truth. Some surgeons will not take any case that is difficult enough that they could fail. They don't want that on their record, and when you are the patient with the complex spine condition and cannot find help, it is very discouraging as it gets worse. I learned to advocate for myself even though I was facing a bunch of surgeons who didn't understand the problem and I was facing my own extreme fears of the surgery itself. I had to find my way through all of that, and it changed me. I learned how much power patients have in their own healing and recovery. You have to believe you can do it, and you can, but you will have to advocate for yourself until you find the resolution.

What surgeons and medical centers would be within your reach for treatment? If your current providers are not offering help, where else will you seek help?

Jennifer

@jenniferhunter I live in Clearwater Fl, so there is a lot of spine surgeons in this area and currently working with two of them in order to get the first and second opinion and go over my results.

Thanks for all the information you have provided, I really appreciate the help.

@soccer1477 I’m glad you are consulting specialists. If there is anything you wish to share or discuss as you go through this journey, please do. Good luck.

Jennifer