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?

@JustinMcClanahan

Hello @leslie324, @vickiekay, @gailb, @cathyh, @edieguinn, @jeriliz, @christinek, @sutherlin, @kdubois, @123zale, @vbrunette, @atrex, @bernese53, @trish602, @barbara94, @johnjames, @lynettegable@annieecruz, @detzler@sauwoon8@mieke@ruben130476@safetyshield, @mieke, @rareeby, @kpete65,  and @disgusted. I would like to invite you to the new discussion about all things scoliosis to make it easier for you to meet other Connect members discussing and living with scoliosis.

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Well it was gradual but almost 6 months now since surgery and the big improvement is I am off all pain killers, still have some but it's tolerable. I see dr fogelson next Friday to see if I get released for activity or not. He said I should be able to play golf again and I'm ready I hope, we'll see . I have been walking a mile a day on treadmill for exercise

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@sharon2000

@mertie I agree on the inflammation. I tend to say aggravate but it’s definitely inflammation that becomes a brick on my back. And it feels like my left hip gets everything started if I stand more than 5 minutes. If I do anything I walk like a granny until it calms down. Of course not walking correctly or favoring one side causes other issues but how can you help it? It’s a constant pain but gets worse if I walk or stand. I take a lot of ibuprofen & use my tens unit. I also have a prescription cream for my back but it really doesn’t help me. The nerve meds didn’t help either. It’s just frustrating I can find the spot on my hip that’s hurting but I can’t push down far enough to reach it.

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I had mine done at Walter Reed Army medical center in 1974.  At that time is was primitive compared to today.  The couldn't do anything for you after 18 years old because the spine was considered not flexible.   As an adult I am forever grateful someone
could correct my back  but as a 14 year old child I was scared, humilated, and ridiculed at school. Things today are some much easier.  When I had it done there was only 3 hospitals that treated scoliosis.   I wish you all the luck in the world.  You will
be glad when it is all done  

Liked by Parus

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@sharon2000

@mertie I agree on the inflammation. I tend to say aggravate but it’s definitely inflammation that becomes a brick on my back. And it feels like my left hip gets everything started if I stand more than 5 minutes. If I do anything I walk like a granny until it calms down. Of course not walking correctly or favoring one side causes other issues but how can you help it? It’s a constant pain but gets worse if I walk or stand. I take a lot of ibuprofen & use my tens unit. I also have a prescription cream for my back but it really doesn’t help me. The nerve meds didn’t help either. It’s just frustrating I can find the spot on my hip that’s hurting but I can’t push down far enough to reach it.

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I'm sorry your ordeal has not been successful for you.  I had mine done when I 14 in 1974.  I have perfect posture and forget it is even I  there. Yes, there are things I cannot do but as everyone with challenges you learn to know the  extent of what you
can do and how to make it work for you. My rod is the total length of my spine and I can bend over and touch my toes which is amazing.  I am truly sorry for your pain and it is a shame it didn't help you. 

Liked by cocoa

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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.

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You can have surgery as an adult for Scoliosis. Never too late. Call Dr. Nassr or Dr. Jeremy Fogelson at Mayo Clinic. It can impact your internal organs.

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@sharon2000

@mertie I agree on the inflammation. I tend to say aggravate but it’s definitely inflammation that becomes a brick on my back. And it feels like my left hip gets everything started if I stand more than 5 minutes. If I do anything I walk like a granny until it calms down. Of course not walking correctly or favoring one side causes other issues but how can you help it? It’s a constant pain but gets worse if I walk or stand. I take a lot of ibuprofen & use my tens unit. I also have a prescription cream for my back but it really doesn’t help me. The nerve meds didn’t help either. It’s just frustrating I can find the spot on my hip that’s hurting but I can’t push down far enough to reach it.

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My back surgery was done by William J. Shaughnessy at The Mayo Clinic. T10 to L5 was fused. @bernese53

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@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.

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I was 14 when I had my surgery.  My rib cage had fallen down onto my hip bone and if I wasn't in my brace it was painful.  That was when they told my parents I needed surgery right away.  They told us it would take 20 yrs off my life if untreated.  I'm
not saying I never have pain because at 56 the pain was horrible.   You see my rod was fused into my spine and over the years and has made it a solid bone.  I was told i was in pain because the rest of my body was over compensating for what my back couldn't
do.  I was put on Wellbutrin and it has completely taken the pain away. In a good note, she said I will never have osteoporosis because my spine cannot compress.   I guess that is a good thing. 
 I could talk all day about this.  I find it very interesting that the human body  can do so many things.  I wish you the best of luck.  I know pain can make for a miserable day.

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Do you have any experience with Dr. Nassr? He is the orthopedist I saw at Mayo. I have scoliosis, spinal stenosis, two badly herniated lumbar discs with nerve enfringement, and issues with some cervical discs. He has recommended surgery but I am pretty scared. My pain right now is manageable but I am a diabetic and he has recommended surgery sooner rather than later….I am 64. Any thoughts would be appreciated. I have wondered about getting a second opinion but he IS a Mayo Clinic surgeon.

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@bernese53

Do you have any experience with Dr. Nassr? He is the orthopedist I saw at Mayo. I have scoliosis, spinal stenosis, two badly herniated lumbar discs with nerve enfringement, and issues with some cervical discs. He has recommended surgery but I am pretty scared. My pain right now is manageable but I am a diabetic and he has recommended surgery sooner rather than later….I am 64. Any thoughts would be appreciated. I have wondered about getting a second opinion but he IS a Mayo Clinic surgeon.

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I met with Dr. Nassr a couple of times for all of the same problems that you are having. He is not warm and friendly though – common for surgeons – and I ended up switching to another Mayo doctor. I have not had surgery yet but we are watching my situation carefully, I am 58 and realize that surgery at a "younger age" is often safer than waiting…..best wishes.

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I would definitely seek a second opinion that is not at the Mayo Clinic before I decided to do surgery. In my opinion, once you do surgery at the Mayo Clinic, it is hard to get other doctors to even consider you as a patient. 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. Have you tried less invasive methods like Physical Therapy or Massage? I will also say that the Mayo has often figured out things that Nowhere else can. @bernese53

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Thank you both for your responses. I have tried physical therapy but there is only so much that PT can do….it will not correct the scoliosis or the degenerative changes in my spine. I agree that Dr. Nassr is not particularly warm and friendly but I had the impression that it is difficult to change from one doctor to the other at Mayo. If you don't mind, Vickie, who did your surgery?

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@annieecruz

I would definitely seek a second opinion that is not at the Mayo Clinic before I decided to do surgery. In my opinion, once you do surgery at the Mayo Clinic, it is hard to get other doctors to even consider you as a patient. 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. Have you tried less invasive methods like Physical Therapy or Massage? I will also say that the Mayo has often figured out things that Nowhere else can. @bernese53

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Thanks – I needed to read this. I appreciate your insight. Best wishes…

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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.

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@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.

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Don't know your age but I'm 70and had 7 fusions from L-1 to t-11 and am six months past surgery and was on fentynol and hydrocodone to exist and now am painkiller free

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@bernese53

Do you have any experience with Dr. Nassr? He is the orthopedist I saw at Mayo. I have scoliosis, spinal stenosis, two badly herniated lumbar discs with nerve enfringement, and issues with some cervical discs. He has recommended surgery but I am pretty scared. My pain right now is manageable but I am a diabetic and he has recommended surgery sooner rather than later….I am 64. Any thoughts would be appreciated. I have wondered about getting a second opinion but he IS a Mayo Clinic surgeon.

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Hi I saw dr Jeremy fogelson at Mayo Rochester and he did my surgery and after 6 months I see him again to hopefullly get released to activitys again(golf) any way I had all the things you listed and had 7 fusions and after about 5 yrs of ppiates and fentynol patches I'm painkiller free hope you have as much success

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