Has anyone had scoliosis surgery?

I had spinal fusion T2 to Pelvic. Wads broke weeks after surgery for a paralyzed a suggestion to you don’t have the surgery because the pain is worse. It does not make any difference because your nerves severed.

Hello @jodess8 and welcome to Mayo Clinic Connect. I understand your wanting to do what is best for your son. I see that @jenniferhunter has replied to you with a video and some information on one of Mayo's spine doctors. If you are interested in requesting an appointment, you may use this link to get started: http://mayocl.in/1mtmR63

The doctor whom Jennifer mentioned practices out of the Rochester, MN campus. However, depending on where you are located, we do have campuses in Jacksonville, FL and Phoenix, AZ as well. Which would be closer to you?

Which campus does Dr Fogelson practice?

Thanks.

@wascaly Dr. Jeremy Fogelson practices in the Mayo campus in Rochester, MN and does surgery at St. Mary's Hospital. Here is his profile.
https://www.mayoclinic.org/biographies/fogelson-jeremy-l-m-d/bio-20055624
I see from another of your posts that you are wishing for a consult about scoliosis and have contacted Mayo. Dr. Jeremy Fogelson is a spine deformity expert and does scoliosis surgery. He's also a kind down to earth surgeon and an expert in what he does. You can request that he review your records when you send all of that in to Mayo.

Here is a video of him talking about scoliosis in adults and a few links about Dr. Fogelson and scoliosis treatments.

Jennifer

Hi, Jennifer:

Thank you so much for all the links, as well as your personal experience with Dr. Fogelson.
I looked at all these interesting links with amazement at what these doctors did for these patients. I do feel so much more energized about coming to Mayo to see if Dr. Fogelson can help me with the pain I’ve had since my very first surgery (2008). The down side is, according to the Patient Coordinator I spoke with last week, I probably won’t be seen until December. That was very disappointing, however, no surprise.
I’m not sure just how many of my posts you read, but the Pain Management doc I last saw who did my latest injection, refused to give me any more of the Percocet I’d been taking for 15 years. Needless to say, my pain is no better and I act feel it’s somewhat worse. I cannot stand more than 5-10 minutes, and I’m not able to walk without the use of a walker. As an aside, that particular inability may be due to the fact I had hip surgery last Feb after a very nasty fall in the shower. The doctor who did that surgery later told me he SHOULD’ve done a hip replacement instead of the open reduction fixation. Gee, doc…NOW you tell me?
So, in essence, I’m just a physical train wreck. Although I don’t have any pain from my hip surgery, I still have this never-ending pain from all my scoliosis surgeries. When I was taking Percocet for this pain, I was at least able to function. I had definite limitations, but was able to be physically active (weights, recumbent bike) 3-4x a week. Now I cannot do anything but sit on the couch all day. My quality of life is pretty much at zero.
I wish I could remember all my levels fused, but I can say it starts at the bottom of my neck and goes all the way down to the top of my pelvis. That’s the best I can do. I hope you can maybe get an idea, Dr. Fogelson will be able to see very clearly the extent of my fusion when he sees my imaging,
Again, I thank you so much for taking the time to be so helpful to a total stranger. I’m so glad you were able to get the help you so badly needed.
BTW, your painting of Dr. Fogelson looks fantastic! I’m sure just be looking at your incredible likeness of him, never forget how he helped you.
Take care. I’ll certainly keep you informed of my progress. Thanks to your email, I feel very encouraged that I’ll be able to be pain-free one day!

With Gratitude,
Karen

@wascaly Hi Karen,
Thank you for your message. You're not a stranger here because Connect is meant to be the place to find compassion and support. December will be here sooner than you think! When I applied to Mayo to see Dr. Fogelson, I was told it was likely a 3 month wait, and I said OK. I had just wasted 5 months seeing a local spine surgeon doing everything he asked only to be told he would not help me. Then, because of a cancellation, I was offered an appointment 6 weeks later for Dr. Fogelson. Just in case that happens for you, think about your travel plans and what you would need to do. I was also dealing with a lot of fear because this was the first major surgery for me which is why I asked Dr. Fogelson if I could make sketches of him. I told him I had to like him in order to do this surgery and that was a way I could accomplish that. He'll never forget me with that portrait hanging in his home. He absolutely loved getting that and was like a kid at Christmas. This post has pictures from the first day he saw the portrait at my 1 year follow up. https://connect.mayoclinic.org/comment/221703/ There are also other posts I made on this first page of the Art for Healing Discussion. I painted it as a challenge to myself because I had to prove to myself that I could paint again and it meant a lot to me to be able to paint him as the first painting I did after my surgery after he made it possible. It was very healing for me emotionally to be able to do that. I made a print of it for myself and a couple of them that I framed for him. The funny thing is when I delivered the portrait, he had grown a beard and was able to walk right up to me and I didn't recognize him until he started talking. It was kind of funny. I just thought it was another doctor walking past me. Then we went out to an area with the nice stained glass to take the pictures for the article. He knows I'm on here talking about him and my experience at Mayo and is very appreciative of that, and he also helped me when I broke my ankle by giving me a good orthopedic surgeon at Mayo. It turns out they are fishing buddies as well as colleagues.

I do hope he can help you although that likely would mean another surgery. That is a question they will ask when you talk to a nurse is if you want surgery. I know scoliosis can really throw off your balance and you're locked into a position. That must be hard to live with. I imagine you may have had several revisions since your first surgery. How long has it been since your last spine surgery? Do you think there could be a hardware issue causing pain? I'm glad it helps to talk. That's why I'm here.

Jennifer

Right at this moment I’m in a rehab for two weeks and very scared about what my life is going to be like . I also like sketching and painting and was wondering if I would ever be able to do it again. I like the idea about doing a painting of my surgeon . I would like to know more about your recovery experience also .

Hi, again, Jennifer,
My 1st surgery was in CA in 2008, when he put in the rod. That surgery was actually a 2-day surgery. They kept me kind of semi-comatose between surgeries, until time for the 2nd round the next day. What real trip that was!
Anyway, I’ve had a total of seven, altogether. My last
Was in 2021, when my neurosurgeon fused my L5, thinking that may’ve been the source of my pain, but turned out it wasn’t. I still had the same old pain which I have today. I’ve also had many injections over the years, none of which have done anything. I also have a spinal cord stimulator. I was very excited to get this contraption, as I’d heard it was just fantastic. Well, again, nothing. I was diligent about keeping it charged, but, frankly, the whole ordeal was all for nothing. Very depressing, indeed, so I just gave up.
You’re probably right about needing another surgery. Maybe I should just try to get used to that possibility, instead of being in denial. I just am hopeful I won’t need it. As far as the hardware maybe being the cause of my pain, we’ll, your guess is as good as mine. Who knows the answer, except the Lord above.
I’m so glad I stumbled upon this site, where I can express my feelings, as well as learn from others. Very satisfying, indeed, to know I’m not the only one who’s been thru hell and back!
That’s funny about you not recognizing Dr. Fogelson because he’d grown a beard. Same thing happened to me when I (finally) saw my Rheumatologist. He’d grown a beard, and when I saw him, I was thinking, “Wow - who’s this guy? My appointment was with Dr Meyerholtz”. During the appointment, I finally figured out this guy WAS Dr Meyerholtz! Too funny. He said he’d had the beard five years, but I knew it hadn’t been THAT long since I’d seen him, so one of us was wrong, and I don’t think it was me! Lol.
It’s just wonderful you can still paint - truly a blessing! You’re very talented, and that too, is a blessing. My only talent is lifting weights- LOL. Not sure if that’d be considered a “talent,” but I’ll claim it as one anyway!
BTW, another woman here said Mayo had told her the same thing about not being seen until December, but then they called her to say they’d had a cancellation. If. I remember correctly, it was for spinal problems, so, who knows? Maybe the same opportunity will present itself to me too!
Take care and keep painting!

Karen

@wascaly
Karen, I have no idea on if you would be offered surgery. They may not want to put you through another big surgery if there isn't something to change that could improve the situation. That is for the surgeon to think about. I think it is a standard question they ask and I knew there was no way out of my predicament without it, and that was the first time I was asked that ahead of a spine consult. Was your last surgery fusing L5 to S1? I can only imagine you've been through many revisions since 2008 and that was a lot of time recovering. Was that because things were changing or were there hardware problems? I know if pedicle screws are not placed at the correct angles, they can pull out and loosen the rods and there is a lot of pressure at the base of the spine on the hardware. Are you unhappy with the surgeon from your last procedure or does he not have a solution for the problems? Is your spine currently in an unusual curvature and were you looking for a better correction? Is your bone density good? I know you have a lot of pain and said you can only sit on the couch when previously you were able to use an exercise bike. Do you think it could be your hip causing this? I know alignment between the pelvis and spine and hips is really important and can be a source of pain if something is off. Sometimes they fuse SI joints if there is laxity. I do know someone who had that done after lumbar spine surgery and it didn't really help. She is in pain and rests a lot. I have some laxity in my SI joint that tends to move my left "hip bone" the illium forward and that does create some back pain when it happens, but when I work on the tight hip flexor muscles that are causing it and get it back where it belongs, it stops the pain, but I also have not had lumbar spine surgrey. Do you think a physical therapist could help improve things? What are you hoping for in seeking care at Mayo? (they will ask that too I'm sure.)

You're right, I do need to keep painting and I haven't been doing enough of that lately.

Jennifer

@me75 I'm not sure who your question is for. My surgery was a simple fusion of C5/C6 done without hardware. That was not too bad for a recovery and it was a lot easier than the ankle fracture I had a few years ago which was far more painful and for a longer period of time. I had 3 months in a neck brace, and after that my neck muscles were weak and I needed rehab and therapy.

You had a pretty big surgery and with the instrumentation, your life will change, but I don't have experience in that. Karen, who goes by @wascaly on this discussion has a lot of experience with extensive surgeries. I know your surgery was very recent, and now is probably the hardest part of the recovery from the trauma of surgery. It does take at least 6 weeks for the incision to heal as I was told when I had my procedure. I'm sure tasks of daily living are difficult right now and you must be very tired and in pain.

When you do feel better, you might want to try some sketches if you are able and if it isn't too tiring. Take small steps and don't try to create masterpieces. Just have fun with it. You can always redraw images until you get one you like. Don't put any pressure on yourself, but if you do get a good one and want to show your surgeon, that can be fun to do at an appointment. I think doing this can help with healing because there is the emotional part of it too, and here you can express your feelings with no judgement. Doodling helps or anything creative that can keeps your hands busy until you're ready for a nap. Before my spine surgery, I really was afraid, and doing sketches of my surgeon was a way for me to trick my brain into being comfortable with everything and to bond with him and like him because I only draw or paint things I like. Being able to like him helped me overcome my fear. Creativity is very healing. We do also have a discussion for that which I just mentioned in a previous post. This is the link.

Just Want to Talk - "Art for Healing"
https://connect.mayoclinic.org/discussion/art-for-healing/
Jennifer