Considering a long spinal fusion for scoliosis at 69 years.

[Ginny Annie]

Hello all! I am new in this forum and I'm just learning how to post! I have developed a 58 degree thoracic curve right and a 44 degree lumbar curve. I'm having trouble standing for extended periods of time and walking is uncomfortable for any extended period of time. I've had SI injections which have helped some but not totally.
It is my understanding that any partial surgery would only end up in another surgery in a while. My doctor is suggesting a fusion from SI to the thoractic area, not sure which level. It would be a huge lack of flexibility.
I also have other health issues-osteopenia, Sjogren's syndrome, interstitial cystitis and fibromyalgia. I'm to start Evenity for bone building soon. I naturally have many concerns about doing the surgery, but also I have many concerns about not doing the surgery. I really would like to maintain my ability to stand and take walks. And I am aware my curvatures are progressing.
I understand along with a lack of flexibilty there can be issues of personal hygiene.

Just wondering if anyone can relate to my situation? What questions should I be asking my doctor? I'm doctoring at Mayo Clinic in Rochester, MN.

[jackieg412]

Hi Ginny, it is a big decision for sure. I am not familiar with everything you mentioned in your post but I think Mayo is a good place for health care.
My pain management doctor was telling me yesterday about a bunch of new treatments for spinal problems for people who didn't want surgery or were not good candidates for surgery.
You maybe able to explore some of those treatments to keep your abilities in place.
It is a tough choice.
Hope we can provide help in making your choice.

[LindaRacine]

Hello all! I am new in this forum and I'm just learning how to post! I have developed a 58 degree thoracic curve right and a 44 degree lumbar curve. I'm having trouble standing for extended periods of time and walking is uncomfortable for any extended period of time. I've had SI injections which have helped some but not totally.
It is my understanding that any partial surgery would only end up in another surgery in a while. My doctor is suggesting a fusion from SI to the thoractic area, not sure which level. It would be a huge lack of flexibility.
I also have other health issues-osteopenia, Sjogren's syndrome, interstitial cystitis and fibromyalgia. I'm to start Evenity for bone building soon. I naturally have many concerns about doing the surgery, but also I have many concerns about not doing the surgery. I really would like to maintain my ability to stand and take walks. And I am aware my curvatures are progressing.
I understand along with a lack of flexibilty there can be issues of personal hygiene.

Just wondering if anyone can relate to my situation? What questions should I be asking my doctor? I'm doctoring at Mayo Clinic in Rochester, MN.

Hi Ginny....

Like many here who have come before you, you're really between a rock and a hard place. Losing the functionality of standing and walking is really tough. But, it's important to understand that scoliosis surgery, especially with a lot of co-morbidities, is risky. It is not uncommon for long, complex surgeries, to set off issues with other illnesses. I think it's fairly likely that you'll have one or more complications from having such a big surgery. A lot of the time, those complications can be minor, and you may find the tradeoff to be a good one. You have to be prepared, however, that you'll have a complication that affects your long-term health. You mentioned that injections helped with your pain, but you didn't get complete relief. You might want to ask yourself how you'll feel if you get only partial relief from surgery.

I truly do not want to scare you, or anyone, away from surgery. It's the right choice for a lot of people, and only you can judge if it's the right choice for you. I just think it's best to go into surgery knowing that you've really got all the information you need to make a completely informed decision.

My advice would be to try to avoid surgery, if you can. I would try to find a DPT who has a lot of experience with spine issues, to see if you can improve your standing/walking tolerance. If you feel you've already exhausted everything to avoid surgery, then I hope you have a good outcome.

Regards,
Linda

[titaniumed]

Hi Ginny, It's important to address your osteoporosis with or without surgery....and I see Evenity is a 12 month program so it looks like you have some time to think about scoliosis surgery....I would not run into surgery until this has improved. Physical therapy is also part of this.

Many times you will hear about someone falling and breaking their hip. Or was it the other way around? She broke her hip and then fell.....

You can have problems with bone fractures and screw pulls which you do not want happening after scoliosis surgery. Granted they have made improvements with osteoporotic related scoliosis hardware over the last 10-15 years, pedicle screws, cortical screws, cannulated screws (hollow) etc where they inject cements to help anchor screws, but you do not want low T scores which measure your bone density.

When did you find out you had scoliosis?

Welcome to the forum...

Ed

[jackieg412]

Hi again, Ed is a good source of information. He is so correct about the osteoporosis and possibly of fracture. The question on the hip is so true. My PT says in a lot of cases the hip breaks and then the fall.
Take your time we check out some of the newer options for pain relief and then greater function.
With some of the other health issues that put a greater risk of problems.
In a lot of cases it isn't once and done.

[Ginny Annie]

I appreciate your comments. It is a tough choice! Thank you!

Hi Ginny, it is a big decision for sure. I am not familiar with everything you mentioned in your post but I think Mayo is a good place for health care.
My pain management doctor was telling me yesterday about a bunch of new treatments for spinal problems for people who didn't want surgery or were not good candidates for surgery.
You maybe able to explore some of those treatments to keep your abilities in place.
It is a tough choice.
Hope we can provide help in making your choice.

[Ginny Annie]

I'm not sure I'm answering in the proper places, but I have had scoliosis since I became a teenager. It was a minor annoyance for years, but in my 60's it has become more than an annoyance! Yes, I have some time to think about it.

Hi Ginny, It's important to address your osteoporosis with or without surgery....and I see Evenity is a 12 month program so it looks like you have some time to think about scoliosis surgery....I would not run into surgery until this has improved. Physical therapy is also part of this.

Many times you will hear about someone falling and breaking their hip. Or was it the other way around? She broke her hip and then fell.....

You can have problems with bone fractures and screw pulls which you do not want happening after scoliosis surgery. Granted they have made improvements with osteoporotic related scoliosis hardware over the last 10-15 years, pedicle screws, cortical screws, cannulated screws (hollow) etc where they inject cements to help anchor screws, but you do not want low T scores which measure your bone density.

When did you find out you had scoliosis?

Welcome to the forum...

Ed

[Ginny Annie]

I understand what you are saying. Just struggling to figure out what remains unknown. I'm concerned about my back getting worse with more time. I appreciate your compassionate answer

Hi Ginny....

Like many here who have come before you, you're really between a rock and a hard place. Losing the functionality of standing and walking is really tough. But, it's important to understand that scoliosis surgery, especially with a lot of co-morbidities, is risky. It is not uncommon for long, complex surgeries, to set off issues with other illnesses. I think it's fairly likely that you'll have one or more complications from having such a big surgery. A lot of the time, those complications can be minor, and you may find the tradeoff to be a good one. You have to be prepared, however, that you'll have a complication that affects your long-term health. You mentioned that injections helped with your pain, but you didn't get complete relief. You might want to ask yourself how you'll feel if you get only partial relief from surgery.


I truly do not want to scare you, or anyone, away from surgery. It's the right choice for a lot of people, and only you can judge if it's the right choice for you. I just think it's best to go into surgery knowing that you've really got all the information you need to make a completely informed decision.

My advice would be to try to avoid surgery, if you can. I would try to find a DPT who has a lot of experience with spine issues, to see if you can improve your standing/walking tolerance. If you feel you've already exhausted everything to avoid surgery, then I hope you have a good outcome.

Regards,
Linda

[titaniumed]

I'm not sure I'm answering in the proper places, but I have had scoliosis since I became a teenager. It was a minor annoyance for years, but in my 60's it has become more than an annoyance! Yes, I have some time to think about it.

Ginny, Your doing just fine.....Posting is easy and discussing scoliosis topics is what we do around here.

You sure did hang in there a LONG time.....I couldn't make it since the pain was out of control. Neuropathic nerve related pains with multiple lumbar disc herniations, nerve root impingement or stenosis, and resulting sciatica. (hip and leg pain)

Surgeons will not offer scoliosis surgery if they don't think there will be an improvement....However, they have to discuss complications with you. The discussions I had were not the easiest hearing about all the things that could go wrong....in Orthopedics, it's an endless list.... They can't cover everything so we have to be prepared. I was guaranteed 100% that something would go wrong, but at the end when my surgeon told me "it will help" that's when I committed to my surgeries and set a date. I told him I can hang tough. It's important to have powerful positive recuperative attitude.

Some of us are done from the front and the side. (In addition to the posterior) I would ask about this.

I had an open ALIF (Anterior Lumbar Interbody Fusion) L1-Pelvis. Over the years, they have improved the XLIF or LLIF process of addressing and fusing the front of the spine through the side. They do this through portals and it's an easier recovery since it's not so invasive. I had BMP used inserted in spacers or cages, which is a protein made in our bodies, and it acts as a catalyst in growing bone. My lumbar was fused from the front and the back which balances out the fusion and also helps with the fusion process.
https://en.wikipedia.org/wiki/Bone_m...enetic_protein

I also had no bone used. They used all synthetics. The synthetics also have anti-microbal properties that help prevent hardware infections.

The discussion about circumferential fusion (front and back), having high success rates in the fusion process, and addressing infections through the use of synthetics would be something I would ask your surgeon about because pseudarthrosis (non-union) and infection are the 2 main things we have to worry about. Both of these problems do require more surgery.

If you have any questions, do ask..... Print this post out and take it with you when you go back in.

My recovery took 2 years. 90% of the healing happened in the 1st year, the final 10% took another year. In adults over age 50, this seems to be the norm.

I had no choice in my decision, and my surgeries came out better than I expected. (especially my lumbar) I have no pain whatsoever in my lumbar. None.

Ed

[susancook]

Hi there Ginny Annie! I had adult degenerative scoliosis and kyphosis. I have a huge forum posting thread in which I detailed the last 8 years. Bottom line: I was an a lot of pain when I decided to have surgery. I also have osteoporosis. Post op problems: partial paraplegia with T4,5 spinal cord injury, ventral hernia, pulmonary emboli, now fused T1 to sacrum, and use a Ti Lite wheelchair and forearm crutches.

Am I happy that I had the first surgery and all of the subsequent revisions? Yes. I asked a surgeon what my future would be like if I did not have spine surgery and he said that I would probably be permanently in a wheelchair within 5 years.

My suggestion: don't have surgery until you really need it. Also, expect something will go wrong....might be little, might be big.

I wish you the best.

Susan