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  1. #1
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    Aug 2019
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    Kentucky
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    1st Scoliosis Surgery at age 63

    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 ďitís those tight musclesĒ 🤨. 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 5í9 but when they measured me I was 5í4 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 donít 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 canít 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 Ií not able to do much. I would greatly appreciate any thoughts or words of wisdom to help me.

  2. #2
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    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
    49 yr old male, now 60, the new 55...
    Pre surgery curves C12,T70,L70
    ALIF/PLIF T2-Pelvis 01/29/08, 01/31/08 7" pelvic anchors BMP
    Dr Brett Menmuir St Marys Hospital Reno,Nevada

    Bending and twisting pics after full fusion
    http://www.scoliosis.org/forum/showt...on.&highlight=

    My x-rays
    http://www.scoliosis.org/forum/attac...2&d=1228779214

    http://www.scoliosis.org/forum/attac...3&d=1228779258

  3. #3
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    Aug 2019
    Location
    Kentucky
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    Grateful for your Response

    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 ďitís all about your thinking ď. I tend to learn on the anxious side (a worrier). I did get Dr Gís 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. Donít know what heí 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 + itís not current. Would appreciate any more words of wisdom you can share.

  4. #4
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    May 2008
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    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
    49 yr old male, now 60, the new 55...
    Pre surgery curves C12,T70,L70
    ALIF/PLIF T2-Pelvis 01/29/08, 01/31/08 7" pelvic anchors BMP
    Dr Brett Menmuir St Marys Hospital Reno,Nevada

    Bending and twisting pics after full fusion
    http://www.scoliosis.org/forum/showt...on.&highlight=

    My x-rays
    http://www.scoliosis.org/forum/attac...2&d=1228779214

    http://www.scoliosis.org/forum/attac...3&d=1228779258

  5. #5
    Join Date
    Dec 2018
    Location
    Eureka California
    Posts
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    Hi scared. Iím 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.
    Kara
    Age 27
    Boston Brace Apr 15 2005 to May 25 2006
    Posterior Spinal Fusion March 10 2010
    T4-L2
    Before T50 and L35
    After T20 and L17
    Possible Neruomuscular scoliosis
    Possible Charcot-Marie-tooth Disease type 1A

  6. #6
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    Aug 2019
    Location
    Kentucky
    Posts
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    Good to hear from you

    Hey Ed! Yes I have a name-Nancyó I had forgotten that I had Scoliosis. Both my mother & sister has it but mom didnít 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 fiancťe 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

  7. #7
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    Aug 2019
    Location
    Kentucky
    Posts
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    Trying to remember when I discovered Scoliosis

    Hi Edó 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 wasnít until around 2016 that I began to notice posture issues which progressively got worse (I was ďstuck) in 1 of those pain mgt centers & they kept telling me ďitís those tight muscles)!!! Itís going to take me a long time to forgive them. Havenít had time to get the Radioligistís 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 agoóI 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

  8. #8
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    Quote Originally Posted by Karagirly View Post
    Hi scared. Iím 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 youíre 27 ó I was born w/ it but it didnít rear ití 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 donít know what happened???

  9. #9
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    Sep 2019
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    Quote Originally Posted by titaniumed View Post
    For adults over 50, our decisions are mostly about pain....if we didn't have MAJOR pain, we wouldn't need surgery.

    Ed
    Titaniumed, Your point about pain is well taken. It sounds like Scared is feeling major pain. Pain reaching level 9/10 is a good reason to get surgery.

    It isn't always about pain. My pain wasn't that great. For me it was about:

    1) Dysfunction. Scoliosis was affecting my ability to get around. It was stretching muscles on one side in the hip area so that walking 1/4 mile felt like walking 10 miles on that one side.

    2) Deformity. My curve was large and increasing. No one could know when that would end. I saw an older person with a horribly deformed spine, she could not be upright and look people in the eye. That made up my mind for me. I feared becoming that person.

  10. #10
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    May 2008
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    reno,nevada
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    Tina

    I see you are a solo. There are not too many of us around here... It takes a lot of strength to do what you are doing.

    What levels did you have fused? Was this from the back only, or did they go in from the front or side?

    Welcome to the forum!

    Ed
    49 yr old male, now 60, the new 55...
    Pre surgery curves C12,T70,L70
    ALIF/PLIF T2-Pelvis 01/29/08, 01/31/08 7" pelvic anchors BMP
    Dr Brett Menmuir St Marys Hospital Reno,Nevada

    Bending and twisting pics after full fusion
    http://www.scoliosis.org/forum/showt...on.&highlight=

    My x-rays
    http://www.scoliosis.org/forum/attac...2&d=1228779214

    http://www.scoliosis.org/forum/attac...3&d=1228779258

  11. #11
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    Sep 2019
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    Quote Originally Posted by titaniumed View Post
    Tina

    I see you are a solo. There are not too many of us around here... It takes a lot of strength to do what you are doing.

    What levels did you have fused? Was this from the back only, or did they go in from the front or side?

    Welcome to the forum!

    Ed
    Hi, Ed. Thanks you for the welcome. I don't know what you mean by a "solo".

    I had Th9 through L5 done. They went in from my back. I wasn't aware there would ever be a need to do anything else. Why do they need to go in from the front or side sometimes? Everybody's case is so different, isn't it?

    I have to have most of my thorax done soon since I'm "adding on".

    The anesthesiologist said I was brave and it was good to take a risk and get to a better place. I didn't see it that I was brave, I was just more afraid of not doing it and having consequences in the coming years when I would be too old to do much about it. I should have had surgery sooner when the curve was smaller, it reached 60 degrees. But my medical people, even at the so-called "spine center", take an "avoid surgery" stance. That is not always the correct thing to do. I'm kind of ticked off at them to not at least mention surgery as an option. They should have been monitoring the size of my curve over time. I went outside them to find a surgeon.
    Last edited by Tina_R; 10-20-2019 at 11:24 AM.

  12. #12
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    Quote Originally Posted by Tina_R View Post
    Hi, Ed. Thanks you for the welcome. I don't know what you mean by a "solo".

    I had Th9 through L5 done. They went in from my back. I wasn't aware there would ever be a need to do anything else. Why do they need to go in from the front or side sometimes? Everybody's case is so different, isn't it?

    I have to have most of my thorax done soon since I'm "adding on".

    The anesthesiologist said I was brave and it was good to take a risk and get to a better place. I didn't see it that I was brave, I was just more afraid of not doing it and having consequences in the coming years when I would be too old to do much about it. I should have had surgery sooner when the curve was smaller, it reached 60 degrees. But my medical people, even at the so-called "spine center", take an "avoid surgery" stance. That is not always the correct thing to do. I'm kind of ticked off at them to not at least mention surgery as an option. They should have been monitoring the size of my curve over time. I went outside them to find a surgeon.
    I see....

    Solo being doing a recovery alone. I did mine alone....wasn't that fun? You brain races a mile a minute....you cant sleep or get comfortable. I paced for days, lost 40# in 40 days, and turned grey. My ex-wife flew in, I answered the door, and replied "You came back to finish me off" LMAO with a loving hug which hurt like you wouldn't believe. You don't hug full fusion spine patients, you just don't. It would be a good idea to get a large shirt that says "No hugs please". Just blow me kisses! Ha ha (scoliosis forum humor)

    Scoliosis is so complicated and we are all so different. Surgeons will choose a course of treatment and surgical attacks, entering the body from different areas which are thought about very carefully.... There are pros and cons to each method. The recent posts that Linda and Sharon have posted are spot on you might review those. I cant get into it unless I write a book.

    One of the locals out here had a PJK years ago, that's proximal junctional kyphosis where you fall forward off the top of the fusion mass. Pretty much same levels as you. She was in incredible pain, lost all hope, and had the extension done up to T2 and had that problem sorted out. My surgeon did that one. He said that one was easy.
    http://jss.amegroups.com/article/view/3809/html

    Some surgeons like to keep fusions low in the thoracic. Its less surgery, and I also think they try to avoid all the paraspinal muscle stripping that happens resulting in what I call the bear traps. Bear traps grip and hold prey, so this feeling of gripping in the thoracic is quite common with full fusion scoliosis patients.

    Read my posts.....I hope some of the jokes are entertaining. If one doesn't laugh, they don't understand what we go through and that's ok. Its important to laugh a lot. Really important....

    I heard the words "Why did you wait so long" several times from my surgeon. Its not wise to ignore scoliosis. Years ago, many of us did just that, and are showing up here.

    Do you have your next revision surgery scheduled? Have you addressed your L5-S1 at this stage with your surgeon? I would ask about this.

    Where are you doing these surgeries?

    Tina, You should start your own thread as you and Nancy have completely different cases. I would put it in the revision section.

    Ed
    49 yr old male, now 60, the new 55...
    Pre surgery curves C12,T70,L70
    ALIF/PLIF T2-Pelvis 01/29/08, 01/31/08 7" pelvic anchors BMP
    Dr Brett Menmuir St Marys Hospital Reno,Nevada

    Bending and twisting pics after full fusion
    http://www.scoliosis.org/forum/showt...on.&highlight=

    My x-rays
    http://www.scoliosis.org/forum/attac...2&d=1228779214

    http://www.scoliosis.org/forum/attac...3&d=1228779258

  13. #13
    Join Date
    Sep 2019
    Posts
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    Quote Originally Posted by Scared View Post
    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.
    Hi, Scared. I am about the same age as you and had spinal fusion surgery last spring. It is rough and I felt the hospital did not quite prepare me for what to expect. Not for the kind of pain I would feel post-surgery (and for how long), nor my physical limitations. Or maybe I just didn't listen well. The pain is unpredictable, it varies with the patient. But the physical limitations may be more similar.

    I have had to wear a brace for months. The brace is to prevent me from twisting, which is not allowed, as it works against the fusion while the spine is trying to heal and form new bone and nerves. I have a belt I have to wear 3 hours each day to help rebuild the bone. It bombards my spine with electromagnetic forces. I also take lots of vitamin D for my bones.

    Because I can't twist, I can't pick up anything off the ground, give myself a pedicure, tie my shoes. I have a hard time getting dressed, particularly getting pants on and off. There are devices to help you. A dressing stick to help with clothing. A grabber or reacher to pick up things off the ground without bending down (avoid ones with suction cups, they fall off and then the whole thing falls apart). An elevated toilet seat with arms so you don't have to make the effort to sit so low. I had rails and a seat put in my shower.

    They tell you you'll be able to drive in 6 weeks after surgery, but that didn't happen for me. After lumbar surgery my right leg was very stiff and immovable at first. I finally drove after 4 months. Because I couldn't drive I got groceries delivered. Many big supermarkets will do this, though it costs more. For other stuff, become an Amazon Prime member, get free deliveries in a day or two, and Amazon carries almost everything.

    It's hard to be alone. I recommend keeping in daily (at least) touch with friends. Maybe get a medical alert monitoring system so that you can call for help at the touch of a button if you should fall (my biggest fear). It's almost impossible to bathe yourself at first, you need help. You could hire a visiting aide for that. You will not be able to care for your home very well. Maybe hire a reliable housekeeper, get references. Eventually you work out efficient ways to do things and can be more on your own. As you improve you will be able to do more for yourself.

    I wish you well.
    Last edited by Tina_R; 10-18-2019 at 11:56 AM.

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