Getting your first appointment

@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?

@bjgwellness I wanted to check in with you regarding your son's spinal issues. I'm sorry I missed this post previously. I am a Mayo spine surgery patient for cervical spinal cord compression, and I did have foot drop and an uneven gait like a limp as one of my symptoms which was caused by the spine condition. My spine issues began after a whiplash when another driver rear ended my vehicle. About a month after that collision, I developed foot drop where my foot slapped onto the floor when I stepped onto that foot which my doctor back then didn't recognize as a spine symptom. Gradually that eased away. About 20 years later, I developed a herniated disc and bone spurs that compressed into my spinal cord in my neck and the foot drop symptom came back. It was intermittent for awhile because I was working with a physical therapist who was realigning my spine. When a muscle spasm occurred, it shifted my vertebrae and there was a slight bit of them slipping past each other, so effectively, that made the spinal canal get smaller and brought on the symptoms because the bone spurs on the end of the vertebra and ruptured disc put more pressure on the spinal cord. Then my therapist would get the muscle spasms calmed down again and my gait returned to normal. I have not had any issues with foot drop since my cervical surgery which was a fusion at C5/C6 and I had a great recovery. My neck motion is normal because C5/C6 is low enough that it doesn't do very much for turning the head. The only difference was I cannot touch my chin to my chest, but I get pretty close.

It is very important to get several opinions before undergoing spine surgery and lumbar surgery is a much tougher recovery because he body is bearing most if its weight through the lumbar spine. Did your son find a surgeon who could do lumbar disc replacement?

Thank you so much @jenniferhunter No one has sugg the implant. I read an article about it and thought it might be an option.

@bjgwellness I had Lower back fusion .. L4, L5, S1 vertebrae 26 years ago.. when I was 55.. That fusion did not limit my movements... that I could tell.. the plates and screws are still there .. the bone packed around them is solid.. but I function so much better than cohorts.. of the same age, sex and activity level.. The trick is to get a really good surgeon.. I had mine done in OKC.. but that Spine Surgeon is now retired..

@jenniferhunter, thank you for your information. I appreciate it. My son did find a lumbar disc replacement (L5/ S1) neurosurgeon at a hospital in Salt Lake City, where he lives. Since my son has lived in SLC for just a few years, he asked his physical therapist for a list of doctors. Also, I obtained patient reviews for neurosurgeons in the area. We chose the neurosurgeon with the highest, numerous reviews. The surgery occurred on May 18, 2021. So far, my son is glad he had the surgery performed. However, he continues to have sciatic pain every day. Some days are worse than others. My son made a follow-up visit with the neurosurgeon for today (Aug 9, 2021) to discuss whether this lingering pain is normal. I am waiting to hear what the surgeon has to say.

@ken82 Thank you for your information. I appreciate it. After you had surgery, do you remember if you had sciatic nerve pain? My son had an artificial disc placed L5, S1 on May 18, 2021. He's glad he had the surgery. But, he continues to have sciatic nerve pain every day. Some days worse than others.

@bigwellness No sciatic pain after a month after the surgery.. now 25 years after surgery my back rebels and hurts some after I stand and chop vegetables for 20 minutes or so..I can lie down for 5 minutes and get full relief..

@bjgwellness It's great to hear from you and I'm glad your son is doing well. I would like to pass on some other information that may be of interest. Surgery does create scar tissue, and scar tissue in the fascia which can be treated with myofascial release therapy. That is a specialized way to gently stretch fascia until it releases and remodels itself. I have done a lot of MFR work because of my spine surgery, and for another condition that I have that causes my chest to be too tight. There is a provider search on the myofascialrelease.com website.

The other link is about other issues with the pelvis alignment that can mimic spine problems. I remember my 3 month follow up from cervical spine surgery. I was still weak at that time. I hope his surgeon has some good advice for him. It may be too early to consider physical therapy, but I wanted to pass on the information in case it helps.

Here is our MFR discussion. https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/\

Lumbar plexus compression syndrome https://mskneurology.com/identify-treat-lumbar-plexus-compression-syndrome-lpcs/

@jenniferhunter Thank you. I've discussed some of your information with my son. He (and I) want to ask: How long after your surgery did you start MFR? And, how long have you been doing MFR? As well as has it eliminated your pain? (He's experienced sciatic pain since his last two microdiscectomies (two years ago) as well as his artificial disc replacement (on May 18, 2021).

@bjgwellness I started MFR for thoracic outlet syndrome several years ago. It has helped a lot. My hands used to turn blue and get cold and that doesn't happen anymore. My scapulae (shoulder blades) are back into a more normal position on my back rather than in a forward position. During those years, I developed my spine disc problem and went through cervical spine surgery having a fusion. It took 2 years to find a surgeon who would help me and I was doing MFR that whole time which bought me some time before surgery and made the surgery go easier, but my progress with TOS had plateaued because the spine issue was causing neck spasms. After surgery, I had to wait until my spine began the fusion process before I could start up with MFR again which was at 3 months post op and I was working on the surgical scar tissue and tightness in my neck as well as strengthening because my neck was weak being in a neck brace for 3 months. My thoracic outlet syndrome had gotten worse because of the break after spine surgery. I have been doing MFR since surgery 5 years ago, but with a break from when the pandemic caused shutdowns in 2020. That is also when I broke my ankle, and had to do rehab for that instead after I started walking again so didn't do MFR on my neck for about a year. I restarted MFR at the beginning of this year to work on my neck and thoracic outlet syndrome. I'm going once a week now so the benefits will stretch through the calendar year. I also do self treating of stretches that I can do at home. MFR has helped me maintain better posture and body alignment. I also ride a horse which helps with core strength and that supports my spine so that complements what I do in physical therapy. I used to have a lot of arm pain which doesn't happen now unless there is something stressful or physical overexertion that can kick up symptoms by tightening everything. When you live with long term pain and muscle tightness, it changes and the therapist will work on different areas where ever it needs adjusting. Since your son is about 3 months post op now, he may want to ask his surgeon if he can do physical therapy. The surgical scar tissue can be treated with MFR and with having had 3 surgeries, it is probably something that needs work.