Scoliosis - Introduce yourself and meet others

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.

Hey there! My name is Denise, I am 46 years old, and I was recently diagnosed with severe scoliosis. They want to do several surgeries on my back to basically reconstruct my spine. When I was younger I was diagnosed with slight scoliosis by my nurse in elementary school. So my parents never followed through with it and I had no idea that the back pain I have suffered through was even related to that. However, after having a severe bowel obstruction which left me in the hospital for 3 weeks they had to do a CAT scan to make sure everything was okay. Well because of this that's how they discovered it because they could see through to my back and my spine. I have to be honest, the reason I'm writing any of this is because I am absolutely terrified!! I mean I have to get rods in my back and they have to take out several of my discs which are severely degenerative and to top that off if I don't get the surgery, there is a chance that I could become paralyzed. The last disc is basically becoming unattached to my spine. I can't even talk about this without becoming extremely emotional. Has anyone going through anything like this to get over me any advice? I'd really appreciate it, thank you!

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.

Hi Denise,

I recently had spine fusion for my scoliosis. My surgery was done over two days as my curves were larger than most and I also needed a vertebrae removed. Make sure you find a doctor you feel comfortable with. If you go to Mayo, they do a really good job matching your case with the best doctor. I'm currently in week 6 post-op. The first month is not fun, but as my doctor told me if I didn't get surgery It would definitely shorten my life span. This was because it affects the location and function of the other organs. Start with finding a good surgeon and discuss the pros and cons. It can be scary. You'd be crazy if you weren't a bit scared. If you do get surgery, make sure you can be in a place where you can have help with your daily needs. Definitely want to make sure this is fully arranged before hand. If you have any questions feel free to ask. Hope for the best on your journey! You're not alone!

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.

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.

I’m trying to gain more insight into this condition. I have a family member who has very severe scoliosis. She had rods inserted years ago when she was in her 30’s. She’s now in late 50’s. I’m not sure what happened, but she is now in very bad shape. Her curve is more severe than anything I’ve ever seen, even on line photos. She is now at least a foot shorter in height. It appears she has a book bag underneath her shirt. She is in terrible pain. It breaks my heart and I just don’t know how to help. She has consulted with some of the top neurosurgeons in our state. They all recommended surgery, but I’m not sure if that is an option any longer. i’m trying to convince her to try Mayo Clinic. She’s afraid of another surgery, which I understand. What are we to expect?

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.

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