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Cramp Fasciculation Syndrome

Brain & Nervous System | Last Active: Dec 20, 2023 | Replies (5)

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@jenniferhunter

@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

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Replies to "@soccer1477 I am sorry this post was missed. I usually hang out in the Spine group..."

@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.