1st Scoliosis Surgery at age 63

[Scared]

This is the 1st time I have ever made a post of any kind. I have been living with chronic back pain for 30 years. I 1st was diagnosed with Degenerative Disc Disease aka Arthritis of Lumbar spine. But as my pain (& spine got progressively worse found myself in a pain Mgt center aka prison for people with chronic pain. About 7 years ago I kept complaining that I had problems with my posture & then I felt increased pain + a hardness in my thoracic spine. I was told “it’s those tight muscles” 🤨. Since they apparently were going to let me rot there , I did extensive research & found 1 of the best Scoliosis doctors in USA- Dr Gupta & got an appt w/ him 12/17. I use to be 5’9 but when they measured me I was 5’4 1/2 in tall! At that time I was told I was on too much methadone to control post operative pain & was not physically fit but would eventually require surgery. Now off opioid & going thru grueling PT to prepare for my upcoming appt w/ Dr Gupta in 1/20. I have been reading the threads posted & it has increased my FEARS. At age 63 & live alone w/ no family, I am sooo scared not only re: surgery but the recovery. My pain threshold is low & my on-going pain level is 8/10 spiking regularly to 9/10. I don’t have my paperwork in front of me from my 1st appt w/ Dr G but I believe my curvature was at a 30 degree angle I 2017. I had a MRI done on full spine in 3/19 & my spine is a mess w/ bulging discs in thoracic, Scoliosis now curving in opposite direction in Lumbar, fused vertebrae, etc. I feel like I have no choice but to have the surgery but now am having 2nd thoughts. But can’t keep my house clean, do ADLs, not able to walk my dog (just potty trips in yard), etc. I have a Masters degree in social work but now only source of income is disability + am a recluse as I’ not able to do much. I would greatly appreciate any thoughts or words of wisdom to help me.

[titaniumed]

For adults over 50, our decisions are mostly about pain....if we didn't have MAJOR pain, we wouldn't need surgery. My pre-surgical pains were completely out of control, and if it wasn't for the pain, I wouldn't have committed to my scoliosis surgeries. For those elders that are thinking about surgery and have not done it, their pain levels are not high enough. Its the neuropathic (nerve and cord) elevated pain levels that usually force us into surgery. Adults suffer mostly from degenerative related soft tissue conditions. Herniation and spinal stenosis are things we all have in common.

There isn't one single person here that hasn't been scared before their initial scoliosis surgeries. Its a really tough decision and surgeons will cover some, not all, of the complications that can happen, you will sign waivers acknowledging this after they review things with you. I was guaranteed 100% complications. Something was going to go wrong and probably beyond my surgeons control. The best surgeons have their share of complications and these can be painful. It was when my surgeon told me after that it would be an improvement and that "it would help" that I made my decision. Taking a chance at improvement through surgery is the chance we take. Commitment becomes reality, its 100% commitment, there is no turning back. With this in mind, your attitude needs to be positive and ready for anything should something happen, not worrying, but knowing. If there are a 1000 things that can go wrong, its makes no sense to focus on one thing. Many will think "I'm going to be paralyzed" which is not the case. That's one out of a billion or more on extreme cases. Infection and pseudarthrosis (non-union) are complications that happen the most. If you don't fuse, your rods will break at some point. Usually this requires a revision surgery. Revision surgery is a surgery that repairs an initial surgery.

I did my surgeries alone and basically did no planning. How do you plan if you don't know what to expect? I knew it was going to be painful, but I was already in major pain so nothing changes there. I did know it was going to take a really long time (1-2 years) and was prepared mentally for that. What else is new, and nothing good ever comes easy, there was going to be some work, but I was going to get through it. The highs and lows of life seem to cycle, and we get through these things. Your mind is your most powerful tool in surgical recovery. Everything else is secondary.

Since I elected to skip rehab, I went home. I guess I was tired of playing doctor. Too many hoses! Ha ha At home, I was alone so my mindset was completely on healing. I did not have the option for a shot (I was a shot begger) so, yes, it hurt. It was a struggle to get comfortable, sitting was 2 minutes max, sleeping was extremely difficult, but it got better in time. For my recovery it basically ran 10% improvement per month. That's the easiest way to think about it. At 4 months, I was sitting here and realized I was completely out of pain. I forgot what that felt like and it took some getting used to....but its a see-saw type of recovery with pain days and pain free days....its all part of the long healing process. The nurses and PT people came to my home every day for around 6 weeks and I just left my door unlocked. My neighbor came over with some spicy chicken soup. She didn't know, and I will eat anything. There is always a learning curve. (smiley face) After the learning curve, things are much easier.

Surgery saved my life. Without my fusion surgeries, I wouldn't be here. I didn't have a decision.

Welcome to the forum, ask any questions you like.

Ed

[Scared]

Thank you so much Ed for responding to my post. I had read some of the threads & you have been very supportive to many. I remember Dr Gupta telling me “it’s all about your thinking “. I tend to learn on the anxious side (a worrier). I did get Dr G’s file& found this documentedegenerative Scoliosis; coronal imbalance 8cm to right, positive Sagittarius balance of 14 cm + autofususion T2-T3. However 2 yrs later my thoracic has bulging discs, DDD all the way down spine with serious issue C3-7. Dr G documented considering anterior Lumbar + posterior spinal fusion. Don’t know what he’ say during upcoming appt. I am currently doing PT strength baring exercises & am suppose to do daily but after PT I am in so much pain that most of the time I cannot do daily (Very Frustrating). I am already planning: have to stay on-campus rehab 1-2 weeks?; will be paying for 24 hr in home health care 1st month; have a townhome with bedroom/bath upstairs (will move bed to dining room & use 1/2 bath. But worried about how to take care of my dog (Cairn Terrior -Toto wizard of oz - 16 lb) after that help has left. I also found a book written by a patient on the surgery/ recovery that has good reviews with exception of addressing pain + it’s not current. Would appreciate any more words of wisdom you can share.

[titaniumed]

Thanks Scared, You do have some spine related issues ......Would be nice to have a name, do I assume you are female?

Do you have any x-rays you could post? Front and side? Also, any scanned documentation is always helpful. Medical terminology can be daunting....If you have anything and have trouble with the software, I will guide you.

Do you have osteoporosis?

You waited a long time you know.....Don't feel bad, many of us are guilty. I know this is all in the past, and I know there are no answers, but I have to post in general since there are adult stragglers out there that would benefit from surgery at an earlier age.....Many of us became experts at ignoring scoliosis and dealing with pain, its the timing that matters most. Senior spine procedures can be successful, but it gets harder when we age.

Communicating by writing about our problems is a healthy thing....You have done this, congratulations! Here we talk about spine, and other hopefully cheerful topics, comedic topics to help with pain of it all.....It's funny how when we laugh deeply about something, really deeply, there is no pain. In my early days of posting here during my recoveries, it was comedy central around here. There are some classic posts! LOL It was my own natural pain defense reaction to my recoveries. I did my shoulder rebuild and gall bladder removal without medications....If you think about pain, it only makes it worse. Do what you can to divert your thoughts, control anxiety through your mind, utilize really DEEP breathing, in HARD, out slowly, start this now, its important. Drinking water is also important, sip on a water bottle all day long.

Ed

[Karagirly]

Hi scared. I’m was wondering which Dr Gupta are you talking about? There two doctors named Gupta. Munish with Washington university in St. Louis. His younger brother Purnendu in Chicago. I saw Munish when he worked for UC Davis Medical Center.

[Scared]

Hey Ed! Yes I have a name-Nancy— I had forgotten that I had Scoliosis. Both my mother & sister has it but mom didn’t have any problems & I have limited contact with my sister who is 8 yrs older than me but she does have back problems but is still working. As I stated in my post, 30 years ago, I started having back problems (about age 31-32). I use the analogy of a snowball rolling down a mountain to describe the decline of my spine. So in 2017 when the orthopedic doctors were not diagnosing me or providing appropriate treatment, I came to the realization that I had Scoliosis!! In response to your question about osteoporosis- no I do not have that. I do have the CD of X-Rays taken 12/17 but my fiancée at the time who is an engineer could only print out 1 view??? Since then I have new MRI 3/19 of full spine (I looked up EVERYTHING

[Scared]

Well Ed don’t know what happened but the rest of my response to your last “thread “ vanished (who comes up with these labels? like “old school” —I’ll have you know that I saw Pink Floyd (Roger Waters floor seats) a couple of years ago 😎 Anyway I forgot most of my response to you but tomorrow I will find the CD of X-Rays + have new X-Rays —would appreciate any help you can give me regarding how to download the pics. I’m not a techy person. Mucho Grasious (hope I got that spelling right) Nancy

[titaniumed]

So in 2017 when the orthopedic doctors were not diagnosing me or providing appropriate treatment, I came to the realization that I had Scoliosis!!

Nancy, I am not understanding.... How did you find out you had scoliosis?

Your leaning forward 5-1/2 inches. A blind man could diagnosis you with a cane.

I never saw Pink Floyd. Was forced to see Tom Jones, and Rod Stewart....I couldn't believe how many ambulances there were. Every time both those guys would shake their hips, 3 women would faint. I spent more time watching the medical crews than the show.

When I shake my hips not much happens....

Ed

[titaniumed]

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Ed

[Scared]

Hi Ed— just have early memories from both my mom & sister + problems doing a pi the orthopedic world in Kentucky is horrible!Like I said earlier my 1st spinal problem (as told by docs was DDD of Lumbar). It wasn’t until around 2016 that I began to notice posture issues which progressively got worse (I was “stuck) in 1 of those pain mgt centers & they kept telling me “it’s those tight muscles)!!! It’s going to take me a long time to forgive them. Haven’t had time to get the Radioligist’s report downstairs to report back to you but will. I ordered a book on Scoliosis surgery preparation/post (have info upstairs) but saw an earlier thread from you mentioning the same book. I saw Rod Steward too (many moons ago—I love music from many genres (wish I had been old enough to have gone to Woodstock &#128526- I now have a anthem song by Andra Day (Rise or Rise Up). Doing better in PT aka torture sessions ((yes I have sarcastic sense of humor). By the way, have you heard of an otc pain relief called Battle Balm? Found it on amazon. Good to hear from you Nancy

[Scared]

Hi scared. I’m was wondering which Dr Gupta are you talking about? There two doctors named Gupta. Munish with Washington university in St. Louis. His younger brother Purnendu in Chicago. I saw Munish when he worked for UC Davis Medical Center.

Hi I saw Dr Munish Gupta 12/17 Washington U -Saint Louis. Did you like him? Apparently you were pretty young for the surgery if you’re 27 — I was born w/ it but it didn’t rear it’ ugly head in my thoracic spine until around 2016. After reading the forum posts, it appears that many people have more severe Scoliosis than I do. However new MRI 3/19 identifies multiple problems including bulging discs in thoracic spine, along w/ Scoliosis turning in opposite direction in Lumbar. Any info for what to expect for surgery & life afterwards will be greatly appreciated. Nancy ps: I attempted to respond 2x to your response but don’t know what happened???

[Karagirly]

I really like him. I had the surgery done soon after turning 18.

[titaniumed]

Hi Ed— just have early memories from both my mom & sister + problems doing a pi the orthopedic world in Kentucky is horrible!Like I said earlier my 1st spinal problem (as told by docs was DDD of Lumbar). It wasn’t until around 2016 that I began to notice posture issues which progressively got worse (I was “stuck) in 1 of those pain mgt centers & they kept telling me “it’s those tight muscles)!!! It’s going to take me a long time to forgive them. Haven’t had time to get the Radioligist’s report downstairs to report back to you but will. I ordered a book on Scoliosis surgery preparation/post (have info upstairs) but saw an earlier thread from you mentioning the same book. I saw Rod Steward too (many moons ago—I love music from many genres (wish I had been old enough to have gone to Woodstock &#128526- I now have a anthem song by Andra Day (Rise or Rise Up). Doing better in PT aka torture sessions ((yes I have sarcastic sense of humor). By the way, have you heard of an otc pain relief called Battle Balm? Found it on amazon. Good to hear from you Nancy

Nancy, Your talking about Kentucky 30 years ago....that's a long time ago.... Things have changed in the scoliosis world, there are great surgeons all over. A lot has happened in 50 years.....Huge improvements! Huge. I posted the Dr Cotrel obituary thread because he was highly instrumental in the scoliosis community. The hardware and procedures we have, have a lot to do with his work.....We are thankful. Cant forget Dr Dobousset, he is also worthy of major praise. French surgeons. Also, we cant forget the old patients of many years past who paid dearly battling scoliosis.

When "anyone" has a back problem, an x-ray should be shot. Its the only way to determine spine shape. (and lots of other things) You can have DDD and not have scoliosis, you could have a kyphosis, without scoliosis, leaning to the right due to a lumbar related problems. (You know, like the leaning tower of Pisa). There are all sorts of different types of spine shapes and problems....You do have senior related degeneration problems since you are autofusing. I also wonder about your neck.

We have had all different types of cases....we will hear "I have scoliosis" and it can be an 11 degree (1 degree over 10 degrees which defines scoliosis) or a shockingly sized 100 degree plus that requires immediate attention by a scoliosis surgeon. Of course one can not have scoliosis and have extremely serious spine problems, or have a huge curve with no pain. The x-rays, they do tell the story....

Doctors don't usually volunteer too much information for a couple of reasons....
1) We are not medically trained. We are Laymen.
2) We don't know medical terminology.
3) They don't want to scare us.
4) Answers are harder than questions. Some answers require a book, and some questions have no answers.
5) Time.

Unless you know what questions to ask, only then you can lead into a very interesting discussion....(smiley face)

I don't doubt that you will be doing surgery some day, (if you decide), different procedures vary in spine surgery, some procedures are more complicated than others,and some can be painful....We do have some incredible members here, tough cases, determined souls who have fought spine disease, or Central Nervous System (CNS) disease our whole lives....Many or most have done well, and there are those that are in pain. The ones that have done well might not post often, they have gone on with their lives, and the ones that are in trouble will let the forum know. Not all patients get through scott free, sometimes revision surgeries are needed.

Life after scoliosis surgery depends on age, procedure, attitude, acceptance to change, complications, and having a good sense of humor....the main thing is the pain. Being completely pain free is this thing we think about....If its less after surgery, then its an improvement.

On the topical analgesic, I would ask your doctor. I have used Infra Rub, Super Blue Stuff, Blue Emu....They are helpful tools in our arsenal for pain, osteoarthritis pain which is very common with us. I don't take medications anymore....and topical's do permeate the skin which is another type of intervention or method of drug delivery.
Do you remember Karen Quinlan? If you do, then you will understand how I feel. I am from New Jersey, during that era. I am very funky about medications regardless of pain. Especially mixing of medications, chemicals, and so forth. Getting off medications was my goal, now you know why. I have done some extremely powerful meds.
https://en.wikipedia.org/wiki/Karen_Ann_Quinlan

The David Wolpert book is a good book....Linda would give them to me, and they got passed along so I don't have a copy anymore.

Ed

[susancook]

Nancy, Just wanted to say hi. I hope that my postings are not the ones that scared you. I had my first surgery at 66 for degenerative disc disease with a 24/36 curve and osteoporosis. While I am the poster adult for all that can go wrong in surgery, I still do not regret my initial surgery. My quality of life was very low because of the pain. I will be 73 next week and have had 7 spine surgeries, one ventral hernia, 4 pulmonary emboli, one PJF, and the mother of all: a spinal cord injury with partial paraplegia. Kinda like "A Partridge in a Pear Tree".

Should you take a leap of faith and have surgery? There lies the million dollar question. For me, it was not really a choice as it seemed like I was rapidly going down the rabbit hole. I was on opioids and could only walk 1/2 block without resting.

I wish you well.

Susan

[Scared]

[QUOTE=susancook;171469]Nancy, Just wanted to say hi. I hope that my postings are not the ones that scared you. I had my first surgery at 66 for degenerative disc disease with a 24/36 curve and osteoporosis. While I am the poster adult for all that can go wrong in surgery, I still do not regret my initial surgery. My quality of life was very low because of the pain. I will be 73 next week and have had 7 spine surgeries, one ventral hernia, 4 pulmonary emboli, one PJF, and the mother of all: a spinal cord injury with partial paraplegia. Kinda like "A Partridge in a Pear Tree".

Should you take a leap of faith and have surgery? There lies the million dollar question. For me, it was not really a choice as it seemed like I was rapidly going down the rabbit hole. I was on opioids and could only walk 1/2 block without resting.

I wish you well.

Susan
Thanks Susan, After 30 yrs of chronic back pain + barely walking, I plan to move forward now as long as Dr Gupta finds me physically fit for the surgery. I am no longer on opioids (thank God) & the pain is bad. It’s been very helpful getting info/ support from this community. How are you doing now after your surgeries??