Severe scoliosis

Posted by tmtm4 @tmtm4, Jul 1, 2022

I am 64 and have scoliosis. I have had it since I was ten but thought it just involved two discs. I have had pretty bad arthritis throughout my spine for years, now severe, with foraminal stenosis on multiple levels.
In 2019, I slipped on water at school. While I fell all the time, this time changed everything. I had all the shots, epidurals, etc. Awful!

Finally, my doc sent me to one of the best, a well-respected neurosurgeon. The report said the right's upper lumbar scoliosis convex is compensatory lower thoracic convex to the left—lumbar scoliosis convex the right maximal at L1-L2 measures 40 degrees. I had three smashed discs; two inside the curve and one outside. He would not touch the ones inside the curve and said if he fused the one out of the curve, my back would collapse "in the near future." He said I needed a rod. The second opinion: said he can fuse the one outside the curve. I thought that they were two extreme opinions, so I went back to the first doc and asked him to send me to someone who would not be scared to disagree with him. The third surgeon, of course, said they were both right. He could fuse the one outside the curve, but he also believes I will need the rod "in the near future." The surgery to fuse L5, I think, and a laminectomy stopped the burning going down my leg. Small victory!

I consistently take pain meds and fear when/if my back will collapse. I sometimes have lousy neuropathy down my bottom and upper thighs and feet. I am unsure if my feet are from a failed bunionectomy that broke/dislocated six joints in the rest of my toes. I worked with them for two years before I retired. Now my big toe is fused, and a fantastic surgeon did her best to fix my foot. It still hurts, but nothing like it did.

I have had six shoulder surgeries ending with a Reverse on both shoulders. I won't even go through what the last one feels like now.

The arch and jaw have collapsed, among many other "unique" issues in my mouth. Every dentist and surgeon has a different solution, not to mention charging a fortune.

My head is swirling. I realize Orencia infusions are not good, so I am considering stopping them. The thought of my hands getting worse, though, makes me nauseous. Anxiety and depression make everything worse.

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jacqueline1961 | @jacqueline1961 | Dec 26, 2023

I am very sorry to read you have and are going through this, but I thank you for posting. It clarifies a lot for me. I too have severe scoliosis, roto scoliosis, stenosis, spondylosis and every other dang thing with an S,, About 4 or 5 years ago I started seeing and consulting with different orthopedics,, all wanted to do the extensive surgery with rods, poles, a cage, nuts and bolts, none guaranteed relief of the lower back pain I had and at that time I was not as savvy about dissecting my MRI's as I have been the last many years. I opted to not have the surgery , it was good I didn't like either of the ortho's.. and the thought of a 12 hour surgery , 6 months to recover, when I own and operate a Store full time and am alone... At some point last year the pain in my lower back was so severe as well as the sciatica o=down my right butt and thigh I couldnlt take it, I went to see the same Neurosurgeon who had done my neck in 2020 . New MRI and herniated bulging disks and a lot of arthritis L1 to S1.. I told this Dr, to do the least invasive surgery to get me out of pain, He even said it was not the scoliosis causing me the pain YET... I did it.. 2.5 hour surgery , ended up staying in hospital 3 days longer than expected,, he did a laminectomy of 3,4,5 and removed a baseball size chunk of arthritis off of my spine which he said would give me great relief. Which all of it did.. I felt good for quite a few months,, I bought a rowing machine with his approval 6 months after ( I think that was my demise). 5 days after the surgery was walking on my treadmill and going to the store ( my brother driving). Here it is a year later and my pain is back,. some days so severe with the sciatica I had no relief,, I quit the rowing machine . and started getting medical massages by a lic, medical therapist,,, I have been better,, but I did get a new MRI during the throes of my worst pain,. of course the scoliosis was worse , rotating more.. and so were my disks,, his answer on the phone was I had a lot more arthritis and "looks like we will have to keep going up".. I see him after the first to discuss surgery again... After my babbling here, I look back on my back journey and how quickly all these Ortho Drs were to want to do surgery asap for my scoliosis which is NOT the cause of my pain,,. With scoliosis if it keeps moving and rotating to the point it affects the organs that is when you must address it,, I am not there yet and I don't think your family member was either , not at that age,,, I am at the point though where as ny spine moves it moves the organs as well, so my organs are not where they are supposed to be. My thoughts are that no one wants to touh someone elses mess,.. y mother had that problem and no Dr where we live woukd do another surgery on her,, she ignored them and went to some Shlock in El Paso whio halfway through comes out and tells my dad , he ran out of time.. would have to finish another time????? they go back , he says nothing more I can do for you. My mother is lazy and never does any of her PT..... so now she is pretty much in a wheel chair and a huge Burden to me as I get it all dumped on me so My Dad doesn't have to deal with all the BS.. I am 62, a stage 4 terminal cancer survivor not living my best life,,,, I do not ever do the pity party but I keep saving every one but me,,,I tried to get into Mayo as well, and I used my useless brothers address in Scottsdale as a resident, I was told a year wait,,, now If Idropped on their door step like my younger brother did they would have to take me,..... tis a thought,,,,, and he is on Medicaide!!!but he had a months stay there , they took care of everything and it was free,,,, I have good insurance,,, Mayo Clinic had a founding policy they turned no one away,,,, I nay go up to Albuquerque which is 3 hours north of where i am closer to the border, and yes they get free medical when they get here...meaning illegals that come over unprocessed or processed i don't know.... The medical here is sub standard at best and the mere fact I am still alive is because I saved myself as well as both parents.... who Drs dismiss and I literally must tell them what they need... I donet know where to go where yu would find Drs who give a hoot,..., I had my first Oncologist I was clearly dying in front of him....begiing him o=for chemo as I thought surely that would save me,,,,,, he did nothing.., Took me awhile but I was on a mission,,,, I got his his licence permanently taken away,,,, I ruined his life as he did mine,,,, I didnt want his money although I could have used it,, Mr Hot SHot Attorney approached me because I had a slam dunk case, even the Medical head of the board said I had the worst case of malpractice,, Anyhoo,,, Please find a good Neurosurgeon and a recent MRI and dissect the entire thing,,, ask the questions I try to give you Please keep in touch , I truly am interested and feel there is hope... Merry Christmas from my heatting pad to yours, Jacquie

me75 | @me75 | Dec 29, 2023

My heart goes out to you because I know some of the feelings you are going through. I had full scoliosis surgery three months ago. My spine is fused from T2 to my tailbone and in my pelvis so I'm doing good, still have some pain and go to therapy twice a week for twelve weeks. I had part of my jawbone on the inside of mouth removed but it doesn't show on the outside it was caused by taking Prolia injections, before my surgery I had injections in my back too they didn't work I had a pain stimulator put in my back that didn't help much either, so T got a hump in my back and stooped over to one side none of my clothes fit right. I watched my mother go through this, she wanted to have something done but it was too late for her, she waited too long, and I did not want to follow her, bless her heart. The problem with her, my sister, and I is we have degenerative disc disease .

gramham | @gramham | Jan 2 8:44pm

In reply to @celia16 "I’m trying to gain more insight into this condition. I have a family member who has..." + (show)

I am 87 years old and have had problems with my back since I was 18 years old. I have had 2 fusion surgeries and have had 2 kyphoplasty surgeries, I have had so many steroid injections that I have lost count. I am going to start the Diagnostic Bilateral MBB for the 2nd time. I also have numerous compression fractures that can't be fixed. There is exaggerated thoracic Kayphosis and chronic compression fracture deformity with severe height loss with damage to T2, T9, T10, T11, T12 and of course degenerative disc disease. This just the Thoracic spine. I have just as much wrong in the lumbar area if not more. I know there will be no more surgeries at my age. Just would like to get relief from the pain.

jenatsky | @jenatsky | Jan 11 8:41pm

@gramham are you seeing a pain doctor for adequate pain control? She are you located?

gramham | @gramham | Jan 11 9:35pm

In reply to @jenatsky "@gramham are you seeing a pain doctor for adequate pain control? She are you located?" + (show)

I am from Indiana. I am seeing a pain doctor. Right now she is trying to get the insurance to ok the first step of the burning of the nerve. They have denied me once. I don't know about the insurance companies. They think they know more than the doctors. They don't seem to care if their client is in pain. I don't want t take pain pills. I still have so much I want to do, I don't want to sit around in daze all day! But pain all the time wears a person down.

jenatsky | @jenatsky | Jan 12 12:06pm

What you might consider doing is looking up in your insurance companies online access what their criteria are for the procedure you’re having done. This way you and your doctor can fight the battle with better knowledge in hand. I used to perform insurance defense audits against insurance carriers for a health system in Pennsylvania. I’m certain it’s available from your Part B carrier as I presume you’re Medicare aged. Is this the procedure you’re seeking pre-authorization for?
https://www.mayoclinichealthsystem.org/hometown-health/speaking-of-health/radiofrequency-ablation-pain-relief

neesie33177 | @neesie33177 | Jan 13 8:11am

In reply to @geekygirl9 "Hi there, Denise! My heart goes out to you. I’m a teen who had scoliosis surgery..." + (show)

I have no idea why I'm just seeing this, months later. But I wanted to thank you for your kind words and support. I hope that you are feeling a lot better now and I have decided to forgo the surgery for the time being. I lost a lot of weight, on purpose lol. It's helped a lot with the pain and the doctor told me just to keep exercising and keep my body strong and healthy and we're looking into possible injections for the pain. He told me that there's a possibility that I could do without the surgery so that's the route I'm going for right now with physical therapy, aquatic therapy, and exercise. I have to say I have a lot more energy and I'm feeling a lot more optimistic. But I just wanted to reach out because your message was very touching and sweet and I really appreciated it. God bless you!!

gramham | @gramham | Jan 13 8:44am

In reply to @jenatsky "What you might consider doing is looking up in your insurance companies online access what their..." + (show)

Thank you for the link. I read it and it explains what will be done. I do have arthritis in my back and hands. Now I think in my right knee. I pray the insurance will approve the procedure. I haven't yet checked the insurance. I will see what it says. Thank you for your suggestions!

geekygirl9 | @geekygirl9 | Jan 16 11:39pm

In reply to @neesie33177 "I have no idea why I'm just seeing this, months later. But I wanted to thank..." + (show)

That's awesome! So happy to hear you're doing better!

mlopez01 | @mlopez01 | Feb 1 11:39am

I hope they were able to help! The Cleveland Clinic is a great place too, I hear. I'd keep searching. It was a long road to find my final surgeon. I'll keep you in my prayers!