Getting your first appointment

Posted by amkaloha @amkaloha, Dec 29, 2016

I have so many questions about this. Do I have to have a PCP referral to make an appointment? How about health records? I have many problems, the most prevalent right now is swollen legs and feet and have been seeing a few doctors in my area but no one seems to be able to help. I have had sonogram tests (blood movement is fine with no clots), an echocardiogram (heart is working well), but my legs stay swollen and stiff. I also have terrible pain in my knees due to osteoarthritis and neuropathy in both legs (I have to use a walker). Must I diagnose myself? - how do i know which department at Mayo to start with? This is in addition to if they will take my Medicare and BCBS. Mayo has such a great reputation that I just feel they could help me get my life back. Thanks to anyone with any answers or ideas.

Interested in more discussions like this? Go to the Visiting Mayo Clinic Support Group.

@stevesweeney

Tended I am tired alll the time and cannot keep my balance.My mind is sharp.

I have much to do with my six grandchildren but time is running low on on me. Arespectfully ted Steve Sweeney

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I can be on the next train from Boston if you will see me.

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Please help me I have good health insurance.Respectfully.

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@stevesweeney

Tended I am tired alll the time and cannot keep my balance.My mind is sharp.

I have much to do with my six grandchildren but time is running low on on me. Arespectfully ted Steve Sweeney

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Hi Steve, if you would like to get a second opinion from Mayo Clinic experts, click this link to the Appointment Request office http://mayocl.in/1mtmR63
You can self refer or get your doctor to submit a referral.

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@bjgwellness

Hello. This is my first time with Mayo Clinic Connect. My 31 year old son has had multiple lower back microdicectomies (sp?) as well as hip surgery over the past 3 years. All not at Mayo. The last surgery was in February, 2020. Since then, he has developed foot drop and sciatic nerve pain in his left leg. A recent MRI indicates the same lower back disc is bulging and causing the sciatic nerve pain and numbness. He is seriously considering getting appointments at Mayo to solve his lower back/sciatica/foot drop issues. He does not want to have fusion surgery. It is his understanding lower back fusion would limit his back mobility and longer term need for further fusion surgery. Instead, thinks he wants disc replacement surgery and any other surgery to solve his foot drop issues. Has anyone on this Mayo Connect had disc replacement and/or foot drop surgery? And, if so, how did it go?

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@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?

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@bjgwellness

Hello. This is my first time with Mayo Clinic Connect. My 31 year old son has had multiple lower back microdicectomies (sp?) as well as hip surgery over the past 3 years. All not at Mayo. The last surgery was in February, 2020. Since then, he has developed foot drop and sciatic nerve pain in his left leg. A recent MRI indicates the same lower back disc is bulging and causing the sciatic nerve pain and numbness. He is seriously considering getting appointments at Mayo to solve his lower back/sciatica/foot drop issues. He does not want to have fusion surgery. It is his understanding lower back fusion would limit his back mobility and longer term need for further fusion surgery. Instead, thinks he wants disc replacement surgery and any other surgery to solve his foot drop issues. Has anyone on this Mayo Connect had disc replacement and/or foot drop surgery? And, if so, how did it go?

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@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..

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Hello. I just joined Mayo Connect to try to help my 35 yo son with spina bifida occulta. He has 3 boys under 5 and is in intense pain. He also has severe knee pain bc of a wreck in his teens that severed his quad tendon. A radiologist friend here (Tulsa) told him to only go to Mayo for spine surgery, so I’m trying to gather info for him. Where do I start? Is there a certain location that specializes in spine/neuro concerns? Thank you!

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@pjmax11

Hello. I just joined Mayo Connect to try to help my 35 yo son with spina bifida occulta. He has 3 boys under 5 and is in intense pain. He also has severe knee pain bc of a wreck in his teens that severed his quad tendon. A radiologist friend here (Tulsa) told him to only go to Mayo for spine surgery, so I’m trying to gather info for him. Where do I start? Is there a certain location that specializes in spine/neuro concerns? Thank you!

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Hello @pjmax11, Welcome to Connect, an online community where patients and caregivers share their experiences, find support and exchange information with others. I know it must be difficult for you as well as your son trying to make sure you find the best help possible when you are considering spine surgery. Here is some information you might find helpful while we wait for other members to respond.

-- @jenniferhunter shared this post in the Severe spinal stenosis discussion on the best Mayo location for spine surgery that you might find helpful - https://connect.mayoclinic.org/comment/290266/
-- Spinal Cord Injury Program: https://connect.mayoclinic.org/blog/spinal-cord-injury-program/
-- Spine Care - expertise and rankings: https://www.mayoclinic.org/departments-centers/spine-care/sections/expertise-ranking/orc-20426372

Do you have any other questions about travel or lodging that you are trying to get answered for the surgery?

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@pjmax11

Hello. I just joined Mayo Connect to try to help my 35 yo son with spina bifida occulta. He has 3 boys under 5 and is in intense pain. He also has severe knee pain bc of a wreck in his teens that severed his quad tendon. A radiologist friend here (Tulsa) told him to only go to Mayo for spine surgery, so I’m trying to gather info for him. Where do I start? Is there a certain location that specializes in spine/neuro concerns? Thank you!

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@pjmax11 Hello and welcome to Connect. I wanted to share with John in welcoming you and I will do my best to answer your questions. All Mayo campuses have neurosurgeons, but the Rochester campus might be the largest group of neurosurgeons with subspecialties. I had spine surgery at Mayo Rochester with Dr. Jeremy Fogelson who is a spine deformity expert and who does a lot of scoliosis cases. My case was for cervical spinal cord compression. My experience as a spine surgery patient was excellent. I was highly impressed with everyone at Mayo. You might enjoy my patient story.
https://sharing.mayoclinic.org/2019/01/09/using-the-art-of-medicine-to-overcome-fear-of-surgery/
Here is a list of Mayo neuro-surgeons (all 3 campuses) and each profile tells what there special interests are.
https://www.mayoclinic.org/departments-centers/neurosurgery/sections/doctors/drc-20117103
May I ask what your son is looking for in treatment of the spine? Does he have a diagnosis of a structural problem that can be addressed by surgery?

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@jenniferhunter

@pjmax11 Hello and welcome to Connect. I wanted to share with John in welcoming you and I will do my best to answer your questions. All Mayo campuses have neurosurgeons, but the Rochester campus might be the largest group of neurosurgeons with subspecialties. I had spine surgery at Mayo Rochester with Dr. Jeremy Fogelson who is a spine deformity expert and who does a lot of scoliosis cases. My case was for cervical spinal cord compression. My experience as a spine surgery patient was excellent. I was highly impressed with everyone at Mayo. You might enjoy my patient story.
https://sharing.mayoclinic.org/2019/01/09/using-the-art-of-medicine-to-overcome-fear-of-surgery/
Here is a list of Mayo neuro-surgeons (all 3 campuses) and each profile tells what there special interests are.
https://www.mayoclinic.org/departments-centers/neurosurgery/sections/doctors/drc-20117103
May I ask what your son is looking for in treatment of the spine? Does he have a diagnosis of a structural problem that can be addressed by surgery?

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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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@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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@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?

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