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View Full Version : Pls respond: over 60, adult onset degenerative scoliosis, no prev back surgery



susancook
12-25-2012, 06:36 PM
I am looking to talk with people over 60, adult onset degenerative scoliosis, no prev back surgery [like when you were younger], that are looking at possible surgical correction, or who have had surgical correction. The reason that I started this thread is that I am having difficulty figuring out how the older person [me, at 66] does after surgery for degenerting discs and stenotic discs, with a smallish curve who have never had back surgery. I read the stories of so many people that are younger with non-degenerting scoliosis and I try to figure out how their recovery will relate to mine, and I don't think that I know.

I was diagnosed at 65 [what a surprise!] with an xray after 9 months of physical therapy that didn't help much. The radiologist was a friend of mine and I cannot say what I said on this blog when he showed me the xray, but it was a 4 letter word. I thought that he was joking and had put up an xray of some teenager with an "S" curve. Nope it was me!

Since then I have been seen at a spine center, had 2 denervation procedures [thoracic T9, T10, T11] and lumbar [L4, L5, S1]...I think that's right. I had a corticosteroid inj x 2 in my femoral cutaneous nerve for Meralgia Paresthetica, and had 3 corticosteroid inj at R L4 for stenosis [pain that radiated to R Butt and R anterior thigh]. Right now, I feel pretty good physically, but eventualy all of these bandaid therapies are going to wear off. ;=[

I have been a very active person: backpacking, hiking, scuba, snorkeling, doing health work in third world countries which involves a lot of hiking over rough terrain and carrying equipment. I am retired, but am on 2 Board of Directors and volunteer with a number non-profit agencies.

Here is my recent MRI:

L1-2: Loss of disk space height. Bilateral facet hypertrophy.
Moderate left foraminal stenosis.
L2-3: Disk desiccation. Bilateral facet hypertrophy. mild left
foraminal stenosis.
L3-4: Bilateral facet hypertrophy. Moderate left lateral recess
stenosis. Mild right foraminal stenosis. Mild right lateral recess
stenosis.
L4-5: And disk desiccation. Complete loss of disk space height.
Bilateral facet and ligamentum flavum hypertrophy. Severe right
foraminal stenosis. Moderate right lateral recess stenosis.
L5-S1: Disk desiccation. Bilateral facet hypertrophy. mild
bilateral foraminal stenosis.
Sacrum/Ilia: Normal

Additional Comments: None

IMPRESSION:
Degenerative changes of the thoracic and lumbar spine as described
above secondary to the scoliosis. No significant change in the
lumbar spine from prior exam. Severe right foraminal stenosis at
L4-L5..

My xray showed an increase in coronal balance from 4.1 cm last year to 11.something this year. I do lean to the Right [physically, not politically]."S' scoliosis curve of 25* thoracic, 36* lumbar was unchanged.

Before the last steriod inj, my Oswestry score was 78....which is quite disabled. Now, after the last procedure, I'm sure that it is much lower as I can move more and don't need to stop and sit down or lie down every 4-5 minutes. I can get out of the house now and go shopping.

So, now I am considering surgery. My first spine surgeon said "T3 to Sacrum" fusion. I have a second opinon set up in a little over a week.

I have read the literature that says that older persons have more risk with surgery. I don't smoke, rarely drink, no diabetes, no osteoporosis, hypertension under contol with meds. My BMI is about 30. I do not believe that I will die in surgery, but will probably have a minor problem that I trust my surgeon will fix. I am working on having a positive attitude towards all of this, but generally, I am an optimist.

So, for anyone that fits this demographic: over 60 with degenertive adult onset scoliosis, no prev back surgery and has had or is considering surgery as an older person....I would love to hear from you and maybe we could become a supportive group.

Sorry that this was so long, but thought that I should give all my info when looking for like twisted and degenerating folks! Looking forward to your input! Susan

leahdragonfly
12-25-2012, 08:33 PM
Hi Susan,

My MRI read very similar to yours...even though I had adolescent scoliosis that was severely degenerated.

I think you are obsessing about the pathology or etiology and overestimating how it specifically relates to the recovery. Your recovery may be expected to most approximate that of others your age who had a similar number of levels fused.

Have you asked Robin for the names and numbers of other women in your age group who have undergone similar surgeries? I was given the names of three women who had similar surgeries, and it was very helpful to hear their experiences.

I hope you find some peace soon.

leahdragonfly
12-25-2012, 08:39 PM
Hi again Susan,

there was a lady here in a very similar situation as you. She started posting at age 63 I believe. Her name is Glenda, and her screen name in gmw. Here is a link to all her started threads.

She kept an extensive off-site blog which I can not locate at the moment, but you will be able to find a link to it in her posts.

http://www.scoliosis.org/forum/search.php?searchid=702911

I have not seen her post here in several years. Last I heard, she was doing great.

backissues
12-25-2012, 09:01 PM
I would be glad to speak with you. I had surgery at age 65 with no previous back surgery. You might want to read my recent posting about my two-year post-op anniversary.

I tried to send you a private message but I got an error message that your inbox was full. Please send me a PM with your contact info and I'll call you, if you wish.

Irene

susancook
12-25-2012, 10:41 PM
Hi Susan,

My MRI read very similar to yours...even though I had adolescent scoliosis that was severely degenerated.

I think you are obsessing about the pathology or etiology and overestimating how it specifically relates to the recovery. Your recovery may be expected to most approximate that of others your age who had a similar number of levels fused.

Have you asked Robin for the names and numbers of other women in your age group who have undergone similar surgeries? I was given the names of three women who had similar surgeries, and it was very helpful to hear their experiences.

I hope you find some peace soon.

What I THINK my mission was in posting....was to find out how us older people with the limitations of age and range of motion, and the known increased risk that comes with aging etc, how does this group do w/ spine surgeries that have degenerated discs and arthritis. I'm just trying to come to peace with this whole thing....I really think that I am close. Somehow, I think that if I undrstood other people's experiences that were similar to mine, that i could better understand what I might expect. I understand that everyone is different...but maybe it would help.

I don't know Robin other than your mentioning her to me. Dr. Hart never gave me her name as a contact. I have asked Dr. Hart, but he introduced me to someone 20 years yonger than I am. I asked him again, and he has not given me any names. So, I depend on this forum to help me so far.

Gayle, I honestly don't know what that missing piece is that will give me peace. I really want to know what that is. I have decided that I will not die in the surgery and am at peace that I will probably have some minor bad outcome that can be fixed [by my surgeon in whom I have great trust, whoever that is].

I see my counselor tomorrow....maybe some insight?

So-o-o-o-o-o-o-o-o-o-o-o-o, I would still like to try to undertand the experience of people over 60 in dealing in the denerative spine surgery and all that it entails. Susan

susancook
12-25-2012, 10:43 PM
Hi again Susan,

there was a lady here in a very similar situation as you. She started posting at age 63 I believe. Her name is Glenda, and her screen name in gmw. Here is a link to all her started threads.

She kept an extensive off-site blog which I can not locate at the moment, but you will be able to find a link to it in her posts.

http://www.scoliosis.org/forum/search.php?searchid=702911

I have not seen her post here in several years. Last I heard, she was doing great.

Thanks for the contact! I'll try. Well, I hit the address above and got an error message. Then I did a survery of entries by gmw and again received an error message. I would love to read her surgery blog! I will try to send her a PM. Later: I did send an PM email to gmw...hope that she responds! Susan

susancook
12-25-2012, 10:44 PM
I would be glad to speak with you. I had surgery at age 65 with no previous back surgery. You might want to read my recent posting about my two-year post-op anniversary.

I tried to send you a private message but I got an error message that your inbox was full. Please send me a PM with your contact info and I'll call you, if you wish.

Irene

Thanks! I will send you my email and we can talk. I did read your recent entry. Susan

leahdragonfly
12-26-2012, 08:33 AM
Hi Susan,

Robin is Dr Hart's assistant. If you call and ask to speak to her and explain that you'd like to speak to other patients in your age group who have had similar surgeries she can give you some names and numbers.

If you search for all posts by Glenda (gmw) you can read through them and find a link to her off-site blog. I think you will find her experiences valuable.

Also, I understand you are searching for others just like you who have gone through surgery. What I wanted you to understand is that many of us, even though younger than you, had very similar degenerative problems and severe arthritis along with our scoliosis. How we came to be at the surgical point is not as important as what condition our backs were in at time of surgery.

Best of luck in SF! I truly hope you find the answers you seek.

gardenia
12-26-2012, 11:38 AM
Hopefully, I might qualify to your request. Never ever considered surgery because I was terrified that the spine housed the nerve center and if touched I would be paralized. Starting at 13 I wore a brace for 2-3 years. Then I was quite normal up to last year. Went to see a chiro every other week and it was like taking aspirin... it helped and slowly 2-3 weeks later it was pain again depending on my work schedule. For my mid 40's I travelled to Latin America almost every month with a carryon because of the frequency of lost bags and I could not afford that on a short business trip. I took my carry-on with smart change of clothes mosly black, computer and gifts to friends. The hardest part was coming back to MIAMI as the planes were parked like 5 miles from immigration. The tunnel walk pulling a suitcase was harder each time.

I can't tell you exactly what the teminology of what all I got. I know that my curves were approaching 90 and 100's. The worst one was the lower tha not only bend but twisted. There are scientific words for that. I new from 30 years ago (ortho xrays) that my lower spine the tip was pretty arthritic and most of the end was 'calcified? - fused?'.

I never thought I would die in the surgery but yes to ending in a wheel chair if a knife went the wrong way. So, I was not searching in this area until this year early 2012. And, learned so much about technology.

My first consult in San Diego went well. Loved the doctor. His comment was that older people with more pain has better surgical results ( uhm??) He advised me to come back in a year unless I wanted to consider surgery now. Adorable doctor who the main famous doctor in the top 10 of the Nations had left him his practice for adults scoliosis while the great doctor dedicated himself to only adolescent scolio. This adorable handsome great bedside manners doctor did his fellowship with this famous doctor. And, he was 34.

I left and said to my husband: next....

We flew to St louis as many know because my youngest is doing her PhD at Washington Univ. and this would be a great place to be with her and her sister who was in Columbia, Mo two hours away.

I saw Dr Bridwell. Not the charming, not the one talking to you in layman terms, not even friendly but had a tail of fellows with him. He talked to the xrays and by the time I saw him, I had to go for xrays (many many of them). when I was in the room with Dr.Bridwell, 3 of the walls were filled with my xrays already marked and measured. He came in shook my hand asked a few question and went to work. I was pissed for 2 minutes then realized what could I tell him that was important? My pain? how I looked? He went directly to the xrays. 1/3 he let it go without some drastic comments but the others: re-measure this but you have to get the right angle, this one is shitty (maybe not those words) but he wanted xrays taken again on that one but with several angles or something in his lingo. After a few test of the legs up and resists stuff. He said: OK we will get more xrays and talk.

Went back to xrays and the techs were so scared of him that I swear extras were taken just to avoid comments and rejections and the head of the unit came to do it himself. I suffered in that hard table for about an hour and it created long term pain in my back, also.

All this narrative is done with the hope that you can understand why I decided to go ahead with the surgery. I was convinced (as a professional and consumer you can tell the charlatans versus the read products). Once you trust the brand, you buy it.

This doctor has been doing this over 30 years. He is still at one of the 3rd rated private university in the nations. I am mainly from northern Ca and UC San Francisco (public) was tied as 3rd in the nation on medical research.

Selecting a doctor and a practice is also an important thing. Now, I know that medical school facility does many of these surgeries and always attempting to make something better. Less drugs, faster healing etc. their purpose in life is to publish their advances in science. I also felt good to know about the team at the OR. They are with him in every operation. He as a team and machines monitoring the spinal cord out of the anesthesia group. He saw that I has some spurs (who knows what that really is but he did) around some vertebrea that needed to be scrape (?) in order to get to where he needed. But, he anticipated problems in and around the dural casing(?) which in fact did get ripped but the neurosurgeons were standing by and quickly mended that portion.

Tomorrow will be a month! I am OK but with a lot of pain not in the incision but elsewhere and I am frustrated, bored, and bunch of other stuff.

I know that I will find many other stuff as a result of this surgery but the will be minor hopefully temporary and needed physical therapy. I know this was the right choice.

Going with a practice that is orthopedid but is not dedicated to scoliosis is taking a major chance.

insurance is paying all for far...And, having to live in St Louis for 2 months (tranporting my cat with us) feeding my 2 students daughter and christmas gifts has not been cheap. But, at 62 we had lived and saved for the rainy days - you got to spend it if you have it. It is a peace of mind to let the technical details to the experts and the pain & suffering of recovery to only yourself.

Hope this long narration is helpful to you. Almost no one dies on th table unless the surgeons carry guns...

I am going thru a rough months and I have some good friends out there - like ED that has been encouraging me and aswering questions.

Hope all is well and a quick peaceful decision come your way soon.

gardenia

rohrer01
12-26-2012, 04:23 PM
Here is my recent MRI:

L1-2: Loss of disk space height. Bilateral facet hypertrophy.
Moderate left foraminal stenosis.
L2-3: Disk desiccation. Bilateral facet hypertrophy. mild left
foraminal stenosis.
L3-4: Bilateral facet hypertrophy. Moderate left lateral recess
stenosis. Mild right foraminal stenosis. Mild right lateral recess
stenosis.
L4-5: And disk desiccation. Complete loss of disk space height.
Bilateral facet and ligamentum flavum hypertrophy. Severe right
foraminal stenosis. Moderate right lateral recess stenosis.
L5-S1: Disk desiccation. Bilateral facet hypertrophy. mild
bilateral foraminal stenosis.
Sacrum/Ilia: Normal

Additional Comments: None

IMPRESSION:
Degenerative changes of the thoracic and lumbar spine as described
above secondary to the scoliosis. No significant change in the
lumbar spine from prior exam. Severe right foraminal stenosis at
L4-L5..

My xray showed an increase in coronal balance from 4.1 cm last year to 11.something this year. I do lean to the Right [physically, not politically]."S' scoliosis curve of 25* thoracic, 36* lumbar was unchanged.



Susan,
I know I don't meet your "criteria" for the older age group. However, I do have significant amounts of pain that shouldn't correlate to my relatively "smallish" curves. Surgery is a very real option for me because of pain.

I have some concerns relating to your recent MRI results. I find it puzzling that they said, "Degenerative changes of the thoracic and lumbar spine as described above secondary to the scoliosis." (bold italics mine) This seems to imply that the scoliosis came first. Is it possible that you had an undiagnosed AIS that was mild to moderate in nature prior to the onset of all of your pain?

Another concern is that it appears that you have bone on bone degeneration at three levels. That sounds VERY painful! Facet joint disease is also painful along with spinal stenosis. Having a spinal canal too small to accomodate your spinal cord is a real issue, not just for pain but also for numbness and paralysis as it gets worse.

My take on the whole thing is that surgery for you would most likely include laminectomies at a few levels to relieve the pressure from your spinal cord. The spine has to be made stable for these procedures and as far as I have read, scoliosis is a contraindication for laminectomies UNLESS the scoliosis is stablized. Since you have a plethora of things going on, having your spine straightened would be just a side benefit to the whole thing. One of my doctors told me that the hospital where I live is now doing disc replacement surgeries for degenerated discs. I don't know if that would be an option for you in this whole process or if they would place cages where your discs are bad or gone.

So looking at this from a surgical point of view, I would be thinking of getting the correction for the degenerative processes rather than from a strictly scoliosis point of view (I know you do this already). There is another woman on here, Melissa Beckoff, who's surgeon, I believe, told her that she was a back surgery patient that "happened to have scoliosis". I think this is the same scenario for you. You might want to talk to her, too.

The thing that makes me relate to you is the fact that there are other causes for my pain other than scoliosis. However, did the scoliosis cause these other conditions? This is where I come back to that statement in your report about all of this being secondary to your scoliosis. Perhaps those of us with scoliosis do wear out a whole lot faster than those of us who do not have scoliosis. I look at my mom. She's strong and fit with almost NO back pain at age 70! She does very physically demanding work that if I do would lay me up for at least a week if not more.

The point of my inner ramblings are to help you to consider why you should have the surgery on your back. I normally stay out of it and don't give my opinions as to whether a person should or should not have surgery. A bone on bone scenario will eventually fuse. (I have a friend that happened to) Why not have it fused in a manner that will bring you less pain? As far as the steroid shots, I'm there. Over time, however, these shots can cause further damage and you aren't getting any younger. I don't personally view 66 as being that old. It seems that you are, for the most part, fit for your age since you are able to go on these gruelling trips. That's in your favor towards your recovery.

Well, I've put in my layman's two cents worth. I wish you the best in your decision, which ever way you decide. If you feel that you can live with the pain relief you get from your shots for the next 20 or 30 years of life you have, then maybe no surgery would be okay for you. But with the amount of pain you describe, if I were you with that much degeneration, I would have the surgery.

For me personally, I'm stuck trying to manage pain without surgery since my surgeon thinks surgery will worsen matters for me. Finding the source of my pain, other than the scoli, has proven difficult. I do have DDD at L5/S1 with facet joint disease at that level. My upper back and neck are a mess because of the muscle spasms. My shoulders hurt and at least the right one is prone to rotator cuff injury because of the scoliosis. It's not healing and causes me a lot of grief. When the muscles in my upper back and neck get really painful, it's hard to breathe. That's where all of my injections come into play. So, even though I'm not 66, I can relate to some extent.

Take Care

susancook
12-27-2012, 12:41 AM
I would be glad to speak with you. I had surgery at age 65 with no previous back surgery. You might want to read my recent posting about my two-year post-op anniversary.

I tried to send you a private message but I got an error message that your inbox was full. Please send me a PM with your contact info and I'll call you, if you wish.

Irene

Sorry about the full inbox...I dumped some Susan

susancook
12-27-2012, 12:54 AM
Susan,
I know I don't meet your "criteria" for the older age group. However, I do have significant amounts of pain that shouldn't correlate to my relatively "smallish" curves. Surgery is a very real option for me because of pain.

I have some concerns relating to your recent MRI results. I find it puzzling that they said, "Degenerative changes of the thoracic and lumbar spine as described above secondary to the scoliosis." (bold italics mine) This seems to imply that the scoliosis came first. Is it possible that you had an undiagnosed AIS that was mild to moderate in nature prior to the onset of all of your pain?

Another concern is that it appears that you have bone on bone degeneration at three levels. That sounds VERY painful! Facet joint disease is also painful along with spinal stenosis. Having a spinal canal too small to accomodate your spinal cord is a real issue, not just for pain but also for numbness and paralysis as it gets worse.

My take on the whole thing is that surgery for you would most likely include laminectomies at a few levels to relieve the pressure from your spinal cord. The spine has to be made stable for these procedures and as far as I have read, scoliosis is a contraindication for laminectomies UNLESS the scoliosis is stablized. Since you have a plethora of things going on, having your spine straightened would be just a side benefit to the whole thing. One of my doctors told me that the hospital where I live is now doing disc replacement surgeries for degenerated discs. I don't know if that would be an option for you in this whole process or if they would place cages where your discs are bad or gone.

So looking at this from a surgical point of view, I would be thinking of getting the correction for the degenerative processes rather than from a strictly scoliosis point of view (I know you do this already). There is another woman on here, Melissa Beckoff, who's surgeon, I believe, told her that she was a back surgery patient that "happened to have scoliosis". I think this is the same scenario for you. You might want to talk to her, too.

The thing that makes me relate to you is the fact that there are other causes for my pain other than scoliosis. However, did the scoliosis cause these other conditions? This is where I come back to that statement in your report about all of this being secondary to your scoliosis. Perhaps those of us with scoliosis do wear out a whole lot faster than those of us who do not have scoliosis. I look at my mom. She's strong and fit with almost NO back pain at age 70! She does very physically demanding work that if I do would lay me up for at least a week if not more.

The point of my inner ramblings are to help you to consider why you should have the surgery on your back. I normally stay out of it and don't give my opinions as to whether a person should or should not have surgery. A bone on bone scenario will eventually fuse. (I have a friend that happened to) Why not have it fused in a manner that will bring you less pain? As far as the steroid shots, I'm there. Over time, however, these shots can cause further damage and you aren't getting any younger. I don't personally view 66 as being that old. It seems that you are, for the most part, fit for your age since you are able to go on these gruelling trips. That's in your favor towards your recovery.

Well, I've put in my layman's two cents worth. I wish you the best in your decision, which ever way you decide. If you feel that you can live with the pain relief you get from your shots for the next 20 or 30 years of life you have, then maybe no surgery would be okay for you. But with the amount of pain you describe, if I were you with that much degeneration, I would have the surgery.

For me personally, I'm stuck trying to manage pain without surgery since my surgeon thinks surgery will worsen matters for me. Finding the source of my pain, other than the scoli, has proven difficult. I do have DDD at L5/S1 with facet joint disease at that level. My upper back and neck are a mess because of the muscle spasms. My shoulders hurt and at least the right one is prone to rotator cuff injury because of the scoliosis. It's not healing and causes me a lot of grief. When the muscles in my upper back and neck get really painful, it's hard to breathe. That's where all of my injections come into play. So, even though I'm not 66, I can relate to some extent.

Take Care

"Degenerative changes of the thoracic and lumbar spine as described above secondary to the scoliosis." I do not understand that comment either. I will ask Dr. Hu.

Thank you for taking so much time to compose such a thoughtful reply! You have really touched my heart! I would love for someone to sit down with me and explain the entire MRI result to me. I look each piece/word up on the internet and take notes and still can't put this together.

I am very nervous about meeting Dr. Hu. I have so much emotion gathered for the visit. I need to get Susan together and in a more relaxed place! I am a risk taker and have accepted so many challenges in my life....but I don't feel in control about this one.

Takecare and thanks again for your thoughtfulness, Susan

rohrer01
12-27-2012, 02:10 AM
"Degenerative changes of the thoracic and lumbar spine as described above secondary to the scoliosis." I do not understand that comment either. I will ask Dr. Hu.

Thank you for taking so much time to compose such a thoughtful reply! You have really touched my heart! I would love for someone to sit down with me and explain the entire MRI result to me. I look each piece/word up on the internet and take notes and still can't put this together.

I am very nervous about meeting Dr. Hu. I have so much emotion gathered for the visit. I need to get Susan together and in a more relaxed place! I am a risk taker and have accepted so many challenges in my life....but I don't feel in control about this one.

Takecare and thanks again for your thoughtfulness, Susan

You mentioned something about a previous surgery on your neck and a nerve being accidentally cut. Could that be part of what's driving your fear? Just a thought.

loves to skate
12-27-2012, 11:42 AM
Susan,
I sent you a PM with my phone number if you wish to talk. My adult onset scoliosis is very much like your situation, being diagnosed late in life and all the details that go along with it.
Sally