Scoliosis - Introduce yourself and meet others

Posted by Justin McClanahan @JustinMcClanahan, Apr 25, 2017

Let’s talk about living with scoliosis.
As a community moderator of the Bones, Joints & Muscles group, I’ve noticed several members talking about scoliosis, but those discussions were scattered throughout the community. I thought I would start this discussion to bring us all together in one place.

Get comfortable in your favorite spot, grab a beverage of your choice, and let’s chat. Why not start by introducing yourself?

@bernese53 Who cares for you is always your choice. You are in control of your body. Ask for Dr. Nassr to write an internal referral to whoever better fits your needs or Contact neurosurgery office and tell them you want to be transferred. Or have your general doctor request whatever specific doctor you want. However, I will say Mayo processes requests made by other Mayo doctors faster . 507.284.2511. It is important you feel comfortable with and trust your doctor. Talk to Nurse Jane or the Medical secretary for Dr. Fogelson.

REPLY
@vickiekay

I had surgery in 2005 with Dr. Dudley at Mayo and he has since retired. I now see Dr. Yazemski and he has amazing credentials and a caring personality. My situation needs a full fusion and the chance of increased mobility and decreased pain is low, so I am trying Rolfing, Structural Body Integration, Acupuncture, Physical Therapy, etc to reduce my pain levels. I use a small electric scooter, a Luggie, as walking any distance is almost impossible due to pain.

Jump to this post

@vickiekay

Hi Vickiekay, I'm a Volunteer Mentor with Mayo Connect. As such, I'm not a medical professional so I can offer you my experience, but not medical advice or diagnoses. You seem to have back problems similar to mine. In December 2016, I had a laminectomy on my L5-S1 to relieve the acute pain from my disk impinging on my nerve. It was very successful and I have no more pain on my left side of my hip, leg, and foot.

However, I have an L4 herniated disk that will require major surgery with rods and pins. I have had tremendous pain on my right side, similar to what I'd previously had on the left. My surgeon recommended that I seek alternative treatments for my L4 pain before going to surgery and fusion. I was taking 3 pain medications at the time, Tramadol, Baclofen, and Gabapentin. I read on Mayo Connect about a technique called Active Release Technique (ART), and decided to try it since acupuncture, PT, and massage weren't helping. I researched about ART on Google and decided to find a practitioner to do treatments. I live in Southern California and just about every kind of therapy is here, so I quickly found a chiropractor who does the technique.

Dr. Todd Andrews did 6 sessions with me at first, over a 3 week time. I was amazed that after the initial sessions I could walk and climb stairs with very little pain. It has been nearly a year now and I continue to go to him for a monthly "tweek". I am pain free right now, and can do pretty much whatever I want physically. I am so happy I found out about ART and l highly recommend it. Basically, it works by releasing nerves and muscles that have gotten bound together as a result of some kind of trauma. The doctor gives me very deep muscle massage at a pain area, at the same time he and I are moving the limb involved. It has worked for me and I have no more pain medications, other than occasional Tylenol or CBD oil or THC/CBD oil. I am so happy to be off the medications. Best of luck with finding relief for your back pain. I also have scoliosis, DDD, cervical radiculopathy, and a C7 compression fracture. All pain is pretty much gone from these problems.

Gailb
Volunteer Mentor

REPLY
@vickiekay

I had surgery in 2005 with Dr. Dudley at Mayo and he has since retired. I now see Dr. Yazemski and he has amazing credentials and a caring personality. My situation needs a full fusion and the chance of increased mobility and decreased pain is low, so I am trying Rolfing, Structural Body Integration, Acupuncture, Physical Therapy, etc to reduce my pain levels. I use a small electric scooter, a Luggie, as walking any distance is almost impossible due to pain.

Jump to this post

Hi, Gailb! Thank you so much for your encouragement and for sharing your experience with me. I have looked into ART before and it seems to be very similar to Rolfing, also called Structural Body Integration – both of which have been extremely helpful for me. The sessions are often very painful and the next day, I have wondered why I was doing that to my body! However, a second day after, I could really feel a positive difference. It was very worth it and I continue to do those stretching exercises at home too. Thanks again fr sharing your story! Best wishes! Vickie

REPLY
@parus

I am too old to get help for the scoliosis which developed late in life. Lost 4" off of my height and traveling any more than 20 miles is no longer possible. Even if I could I would not be able to do anything once I arrived at a destination. I so miss nature, bird watching, hiking, running. Is what it is. Will only get worse. so much to look forward to…excuse, lost in the pit of self pity at the moment. Could be worse.

Jump to this post

This is great news to hear! So often, I think that the people who have had successful surgeries move on and enjoy life…and only those still in pain remain on the social media pages telling about their unsuccessful surgeries. You have given many of us encouragement today, John Broward! Best wishes!

REPLY

I have developed scoliosis in the past through years and am wondering what possibilities are out there to help or stop the progression…..I am 65

REPLY

Hello! I am 37 years old and have severe scoliosis. I haven't been seeing a doctor at all about it. Although I'm quite deformed, I don't have much pain, other than muscle aches, however, I know eventually I will have problems and hope to pursue some lifestyle changes that can minimize them (without surgery if possible).

We live in upstate NY, but I recently traveled to Mayo in Minnesota for a health issue my daughter is having. We will be going back next year, and I am considering visiting some specialists myself for my scoliosis while we are there. Can anyone recommend a doctor they have seen? THANKS!

REPLY

Welcome to Connect. I have scoliosis, two herniated disks, cervical disk issues, and spinal stenosis. I have seen Dr. Nassr at Mayo Clinic. He is very knowledgeable and spends a lot of time during office visits answering questions, and discussing treatment plans. He is not the world's friendliest person but he is personable. Good luck.

REPLY
@sarany

Hello! I am 37 years old and have severe scoliosis. I haven't been seeing a doctor at all about it. Although I'm quite deformed, I don't have much pain, other than muscle aches, however, I know eventually I will have problems and hope to pursue some lifestyle changes that can minimize them (without surgery if possible).

We live in upstate NY, but I recently traveled to Mayo in Minnesota for a health issue my daughter is having. We will be going back next year, and I am considering visiting some specialists myself for my scoliosis while we are there. Can anyone recommend a doctor they have seen? THANKS!

Jump to this post

In my experience, other doctors would not see me because the Mayo is so well known and my back surgery was preformed at the Mayo Clinic. After I was moved from Pediatrics to adult, I chose to see Dr. Fogelson, a neurosurgeon at Mayo Clinic. My surgery was preformed when I was still in Pediatrics — Not by Dr. Fogelson. I love Dr. Fogelson. Dr. Fogelson is kind, caring, and honest. Keep in mind an Orthopedist focuses on bones. A neurosurgeon focuses on the spinal cord, spinal canal, and nerves. I would avoid surgery if I could. After my spinal surgery, I am in constant pain. I have coccyx pain, a purple and cold left foot, costochondritis, nerve like pain in my ischial tuberosities, ridicculopathy at L3 and constant back pain. Dr. Nassr comes highly recommended by other staff and doctors at Mayo. Dr. Fogelson comes highly recommended by patients. I would ask you to think about everything a surgery can effect. What are the pros and cons? A surgery is permanent. A spine is very delicate and is connected to many things. Each part of your body is connected and wired to other parts of your body. I will also say that the Mayo has often figured out things that Nowhere else can. @sarany,

REPLY
@sarany

Hello! I am 37 years old and have severe scoliosis. I haven't been seeing a doctor at all about it. Although I'm quite deformed, I don't have much pain, other than muscle aches, however, I know eventually I will have problems and hope to pursue some lifestyle changes that can minimize them (without surgery if possible).

We live in upstate NY, but I recently traveled to Mayo in Minnesota for a health issue my daughter is having. We will be going back next year, and I am considering visiting some specialists myself for my scoliosis while we are there. Can anyone recommend a doctor they have seen? THANKS!

Jump to this post

Thank you for this! I have experience with the Mayo Clinic figuring out things – my daughter has a rare benign intraneural tumor that has been diagnosed in less than 100 patients.

Thank you for your feedback. It is my hope that I will avoid surgery if possible. Great recommendation to see a neurosurgeon. I honestly never thought of that!

I wish I was more disciplined. I know that if I could make myself stronger, particularly my core and back muscles, it would make a big difference in my well-being.

THANK YOU, @annieecruz !

Liked by cocoa

REPLY

thank you!!

REPLY
@sarany

Hello! I am 37 years old and have severe scoliosis. I haven't been seeing a doctor at all about it. Although I'm quite deformed, I don't have much pain, other than muscle aches, however, I know eventually I will have problems and hope to pursue some lifestyle changes that can minimize them (without surgery if possible).

We live in upstate NY, but I recently traveled to Mayo in Minnesota for a health issue my daughter is having. We will be going back next year, and I am considering visiting some specialists myself for my scoliosis while we are there. Can anyone recommend a doctor they have seen? THANKS!

Jump to this post

https://www.mayoclinic.org/biographies/fogelson-jeremy-l-m-d/bio-20055624
Neurosurgery Department Phone: 507.266.2522
I would suggest Not seeing his PA Laura, but waiting for an appointment with Dr. Fogelson.
Physician Assistants are not required to have as much education as a doctor. Furthermore, I would request a CT Scan. A CT scan will show soft tissue and bones. A x-ray only shows bones. @sarany

REPLY
@sarany

Hello! I am 37 years old and have severe scoliosis. I haven't been seeing a doctor at all about it. Although I'm quite deformed, I don't have much pain, other than muscle aches, however, I know eventually I will have problems and hope to pursue some lifestyle changes that can minimize them (without surgery if possible).

We live in upstate NY, but I recently traveled to Mayo in Minnesota for a health issue my daughter is having. We will be going back next year, and I am considering visiting some specialists myself for my scoliosis while we are there. Can anyone recommend a doctor they have seen? THANKS!

Jump to this post

Thank you for this, @annieecruz ! We are coming back to Minnesota next winter. I will make an appointment and do my research until then!

Liked by cocoa

REPLY
@sarany

Hello! I am 37 years old and have severe scoliosis. I haven't been seeing a doctor at all about it. Although I'm quite deformed, I don't have much pain, other than muscle aches, however, I know eventually I will have problems and hope to pursue some lifestyle changes that can minimize them (without surgery if possible).

We live in upstate NY, but I recently traveled to Mayo in Minnesota for a health issue my daughter is having. We will be going back next year, and I am considering visiting some specialists myself for my scoliosis while we are there. Can anyone recommend a doctor they have seen? THANKS!

Jump to this post

I would just like to add that since Mayo Clinic is an educational institution, NPs and PAs are an integral part of treatment at Mayo Clinic. In addition, treatment and care at Mayo Clinic are viewed as a collaborative effort. I can understand why you may be hesitant, but it is important to remember that a physician, such as Dr. Fogelson, would be reviewing charts and recommended treatments and would be part of your appointment and care, even if your appointment was with a colleague of Dr. Fogelson. I do not intend for this post to sway your recommendation or discredit it in any way, but as appointments can sometimes be hard to get, I wanted to provide some additional information in the event that you are able to get an appointment sooner with a colleague.

REPLY
@sarany

Hello! I am 37 years old and have severe scoliosis. I haven't been seeing a doctor at all about it. Although I'm quite deformed, I don't have much pain, other than muscle aches, however, I know eventually I will have problems and hope to pursue some lifestyle changes that can minimize them (without surgery if possible).

We live in upstate NY, but I recently traveled to Mayo in Minnesota for a health issue my daughter is having. We will be going back next year, and I am considering visiting some specialists myself for my scoliosis while we are there. Can anyone recommend a doctor they have seen? THANKS!

Jump to this post

Also keep in mind that if you are a self-referral, it may take longer to get an appointment. Start sooner rather than later.

REPLY

Scoliois diagnosed at 32….now 75 and helped so much by my chiropractor….Not interested in surgery but my gait is limpy. So glad to have a support group.

Liked by nettamae

REPLY
Please login or register to post a reply.