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Getting your first appointment

Visiting Mayo Clinic | Last Active: Mar 21, 2023 | Replies (110)

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@pjmax11

Thank you @jenniferhunter and @johnbishop

I greatly appreciate your fast response. My son (35) was told by a spine doctor that he has spina bifida occulta, which is a spine deformity. His nerve is compressed and causing intense pain in his back & legs. Supposedly, surgery is a poor option bc they need to open the foramen, which will result in the vertebrae being susceptible to fracture. They told him he could lose bowel function at any time, but all they can say is “don’t bend over & don’t pick up anything greater than 5 lbs”. There have to be other options & opinions. I’m wondering about the spinal pain implant.

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Replies to "Thank you @jenniferhunter and @johnbishop I greatly appreciate your fast response. My son (35) was told..."

@pjmax11 When I was looking at the list of surgeons at Mayo who treat spina bifida, they seem to be pediatric surgeons. I looked up spina bifida oculta and found it was a diagnosis in adults that is sometimes missed. What I might suggest if you are looking for a surgical consult at Mayo is to contact a spine deformity expert. I would contact Mayo first to make sure that you have in network insurance coverage as spine care is very expensive. You can ask to have your records sent in to a particular surgeon if their clinical interests match what you need. I did that in my case. That being said, I would recommend that you contact the neurosurgeon who did my surgery, Jeremy Fogelson, because he is a deformity expert and is teaching in the neurosurgery program at Mayo. First you would be speaking with the neurosurgery department and can ask about which surgeons treat spina bifida in adults. If Dr. Fogelson felt another surgeon was a better choice for your son's case, he may call in another surgeon to assist or to take the case. As patients, John and I don't have any say in scheduling at Mayo or diagnosing issues, but we can relay our experiences and what we know about Mayo.

It is important to get second opinions about any proposed serious spine surgery. There might be another opinion with a different approach that is better or safer. You need a real expert at the top of their game who can give that opinion.

Here is Dr. Fogelson's profile (and there is a wait list to see him at this time)
https://www.mayoclinic.org/biographies/fogelson-jeremy-l-m-d/bio-20055624
If you would like to seek help from Mayo Clinic, contact one of the appointment offices. The contact information for Minnesota, Arizona and Florida can be found here http://mayocl.in/1mtmR63.

Was a spinal implant suggested to him by another surgeon?