Oh here goes- a personal vent of sorts, and a wishful "surgery date"

[scooter950]

Hello my scoli friends, I've set a date: Oct 13. Now I must get my surgeon to agree. I wish this was behind me - but as much as I tell myself to plan, to prepare - the days creep past and I am no closer to being organized or "ready" for surgery. So I may as well schedule it.

here's my problem- pain. I know I must get "in shape" for surgery, I know I should exercise - but I can barely get enough energy to cook dinner after work, then i collapse with the laptop. I don't even walk my dogs anymore. organize the house? i can barely sweep th floor. no excuses, just facts. I've been a member of this forum for years, now- in retrospect- I wish I had the surgery years ago, before my L3-L4 gave out. but I want my life to be better, not worse, not a slow deterioration and depression; I am struggling with severe depression, too, I'm taking meds and it helps a little; I do manage to work but that's about the extent of any productivity.

so I was looking at the calendar and I selected Oct 13 as my surgery date. I am going to see my surgeon next week. hopefully, he will agree.
but I fear I will be fat and out of shape and have to struggle with rehab. but if that's the best I can hope for -- i pray it will stabilize the curves and maybe lessen the pain.

thanks for reading, I will let you know if the surgeon agrees with my "plan". blessings to all- Jamie in TX

[susancook]

Who is your surgeon? Just want to wish you the best! Many of us have some extra pounds and not in such great shape. I suggest that you start small and increase a little bit every day. I suggest strengthening quads and an easy exercise to do is to hold on to the kitchen sink and bend your knees to 90 degrees, if you can and come up again. Do maybe 10 every day for a week, then try 12....whatever you want to do, but do it every day! Increase to twice a day. Get on some workout clothes and funky music.

Pain is a bummer, been there and not going back. Depression is also a bummer and being in pain is depressing.

Sending good vibes your way.....Susan

[LindaRacine]

I wish I had the surgery years ago, before my L3-L4 gave out. but I want my life to be better, not worse, not a slow deterioration and depression; I am struggling with severe depression, too, I'm taking meds and it helps a little; I do manage to work but that's about the extent of any productivity.

Hi...

There's no way to know, but had you been fused years ago to L3, you would have a high likelihood of needing fusion to L4, L5, or the sacrum anyway. At UCSF, patients are really encouraged to do whatever core strengthening exercises they can, as it's the one proactive thing we can do to minimize the potential of needing surgery to the lower lumbar region.

I'd also encourage you to get the depression under control. Depression is a very strong predictor of poor outcome in spine surgery, and the surgery itself is highly likely to actually make the depression worse.

Best of luck, whatever your future holds.

Regards,
Linda

[rohrer01]

Scooter,
I agree with everyone about doing exercise. If you can't do anything else, walking is great. Get in a habit of it if you can.
I'm thinking being on the plump side is better than being too skinny. At least you have weight to lose.
I doubt that any surgeon would touch me right now. I'm too thin and don't have any room to spare. If I lost the usual 15 pounds, I'd end up under 100 pounds on a tall frame. Ask your doctor. If he's concerned that your weight is an issue, then he'll tell you. I think the most important thing you can do is get as physical as your pain will allow you. It will not only make you physically more prepared, but exercise releases endorphins which combat depression.

I wish you all the best!

[scooter950]

hi again, thank you Susan, Linda and Rorher for listening to my vent. the depression is here to stay, I've been on & off different antidepressants for about 11 yrs now, my Primary care doc said that with my history of relapses- he wants me to stay on the meds. The pain is fairly constant, it waxes & wanes throughout the day but I tried to walk on the bech last weekend, couldn't go very far. I had my niece go ahead without me, I turned back and sat in the car. and I love the shore. this work week, I ended up taking Lortab at bedtime just so I could sleep- the pain wakens me during the night, I get cramps and paresthesias and incredible hip pain ( another thread! I know...) with taking th narcotic at bedtime I feel like i get better quality of rest.

My back cramps up at the lumbar area- like a charly horse in my back that I cannot get rid of.

i'm going to Austin to see my surgeon; we were supposed to schedule the scoli surgery in 2011 but I asked him to please check my neck because the neck and shoulder pain was worsse than the back pain- so he did the C spine fusion. Now, I'm going back for T2- ?? I feel as Linda stated: if I only fuse to L4 I am probably facing a second surgery to fuse to sacrum. BUt the surgeon wanted to limit me to L4 if possible.

I will stay positive and yes, i will try to walk. thanks for "listening" to my concerns ~~ Jamie in TX

[scooter950]

ps

the surgeon said my L3- L4 was "bone on bone", back in 2011. I swear, sometime I think I can feel it moving/ grinding especially when I have poor posture....

[titaniumed]

I'd also encourage you to get the depression under control. Depression is a very strong predictor of poor outcome in spine surgery, and the surgery itself is highly likely to actually make the depression worse.

Jamie, this can be a battle for sure......I don’t think that its worth it. (Depression, stress, worry, and anxiety....) These are deadly words for us. Every single time I let these take a hold, it just caused me problems. Every single time....

I really had to do an about face in my mind, and did whatever it took to keep from being depressed about all of this. My surgeon and I bumped heads on this matter, and I was the one that was wrong and I was rejected because of this. He wasn’t going to continue with my surgeries if I couldn’t get a grip on things....he was right and I was wrong. I had a lot of things that were boiling in the pot....and all sorts of changes were about to happen. If we are uncertain in our minds, its hard, but all we can do is walk that path and trust that things will be ok.

Accept the change that’s about to happen no matter what happens. Setting your date is the beginning of the process. Congratulations.....

Linda is right about this.....its probably the most important thing we need to do. Its all about attitude. This is at the very top of the list of things to bring to the hospital.

Rejecting negatives...and I know you can do this. It’s a mission with rewards. Pain takes a back seat, and your mental set becomes your primary goal.

Eyes on the prize....look forward, never back. Don’t ever think “I set my date, I’m going to stress over this” because that’s looking back.

Don’t ask, “Can I do this?” Think “I CAN do this”. Ask the right questions.....think the right answers.

I found that short daily outdoor walks alone, are optimal thinking times....you don’t have to walk much....

Ed

[Pooka1]

Great advice, Ti Ed.

There is no way my daughters or my husband or I could have gone through this episode if we didn't view it as cutting losses. Normal is off the table. Say good bye. All that was left was to throw ourselves completely into the fight to stem further loss and hope to get back to a life. My daughters would not have any life absent their surgery. In that sense it is a huge win for them that they are carrying on in a normal life.

Another thing that helped me was just to acknowledge early and often that life is unfair and things could be a lot worse. What can you do other than to cut your losses?

Good luck.

[titaniumed]

Sharon

I don’t know if I would call it cutting losses.....maybe so, but it seems that change is inevitable in our lives. I never thought of it as a loss, but that’s my forced positive mental programming. Its different as a single patient vs being a parent.

If one moves because of war in a country, would that be considered cutting losses? It’s a careful balance....a change for the good? Why, of course! Communists forced my relatives to move, I have first hand experience in this....Its not negative, its positive. Leaving your home suddenly becomes a positive thing. You laugh when your home catches on fire and you move on. This loss becomes a positive thing.
Scoliosis surgery is similar.....its just a change. How you handle it is important.

Back to the stress subject, I wanted to add that when my mom passed away last year, 2 days later my cervical herniation’s suddenly took a dump. Yes, they were documented in my massive hospital reports in 2008, and you just don’t fuse everything, ha ha (my little scoliosis surgeon joke) and no they don’t laugh at that one, but this stress solidified my beliefs in the destructive nature of stress. It’s a killer. Why this happens, I wonder......scoliosis isn’t that black and white, its complicated and we have a long long way to go figuring all this out.

There is a lot of value in breathing deep and slowing down.....

I had an event at work the other day where I had a 10 level hip stabbing that hurt like heck. Everyone gets all concerned because I yell out in agony....

No biggie, and no I’m not running to a doctor....I laugh at them and ask “Are you crazy, why would I do that?”

I have too much fun all the time. The stares are just golden.....

Ed

[scooter950]

thank you, Sharon & TiEd, there are other reasons for the depression, it's been a battle, scoli isn't the only scourge I carry. be that as it may: I try to move forward, that's why I "set the date" - I realize that the years are going to pass and I continue to be paralyzed - mentally paralyzed- by fear, by apathy, or depression- but I NEED this surgery. The rational mind recognizes it- the depression just forces me into a bare minimum survival mode. I am thankful for my job; I fully intend to continue working post-op. I need to work to fight the depression.

I trust this surgeon, he is a scoli expert, Dr Geck in Austin; I am 55 almost 56, I have to accept the fact that I have limitations. My house ? I need a maid, I can afford to pay one but I feel guilty if I sit while she cleans, yet there's only so much I can do. Correction: I say- I can do ANYTHING, but only for 5 mins then i must lie down. but I cannot keep waiting for the house to be perfect, I am not quite a hoarder BUT I have clutter! I am a clutter-er ! almost as bad...

but I am trying to be positive: and I read everyone's post-op posts and I wish this was behind me already. well, today I am taking my puppies to the beach and I will walk. and then I will lay on the warm sand and my dogs will lie beside me/ or on top of me ( the small one) and I will enjoy this glorious day, thank y for sharing your experiences... I look forward to this "short" work week, and then Friday we shall see if the surgeon agrees to my surgery date!! yaaa! blessings and Happy Easter - xxx Jamie in TX

[scooter950]

PS - Sharon, i think i understand what you mean by cutting losses: it will be a new "normal" for me, I will deal with the post-op limited mobilty, I am trying to do that now- avoid bending, etc. but tiEd, i am also seeing this as a positive: I want to be better, I want to WALK! I want to travel- my husband wants to take me to europe, to disneyworld, he wants to go to the resort in the Bahamas - but I keep saying no, not now- I recognize my limitations, and I don't want a vacation where I must take narcotics in order to do anything. I feel my husband got a bum deal when he married me, the back pain has worsened with age. he deserves better. so I will get stronger, I will try to walk - yes, I am fghting depression but I will stay on the meds, I try to laugh ( reruns of Everyone Loves Raymonds always make me laugh!!) and I try to get out of the house, when possible. so depression may affect recovery- but I was depressed with my C spine surgery too- and I wasn't on antidepressents then yet I healed-- I am fused! the pain was tolerable, and now- I will work to prepare for the big surgery.

bottome line: I just recognized th years are flying past, and I am no closer to getting this done. and I need to stabilize my scoli- so - <deep breath> let's do it! I hope & pray the depression will not be a factor; I'm taking meds and I'm trying to fight it. thanks for listening,

[PeggyS]

Hi Scooter,
I can identify with the dilemma of 'getting ready' for the BIG surgery! I'm looking at October 2014 for my surgery, too. I've put it off multiple times - mostly by choice, but the last 2 date changes were due to needing to heal from an accident and last time was that my husband needed neck & lumbar surgery first.
If I stop doing whatever is causing the pain, it does go away quickly. I think I could live the rest of my life with my current condition because the pain is controllable. The problem is, my curve has progressed another 10*, up to 75*, in the last 2 years and now I'm 60.
We hired house cleaners because I was responsible for everything during my husband's recoveries. It's SO worth it! Now I can spend my energy on other things - like de-cluttering & organizing my house - just like you're trying to do! You might want to reconsider! Also, I need to lose at least 15 pounds & strengthen my core.
Looks like we could be October buddies!
I pray your pain lessens so you can do the things you need to do in preparation. Let us know what your dr says about your date!

[Pooka1]

It really comes across in threads like this about how hard a decision this is in adults. It seems like it is rarely clear cut until it gets so bad. That is a such a hard position to occupy.

For me as a parent, it was so important to focus on the choice between surgery and no surgery as opposed to surgery versus normal. There was no point in spending any time comparing surgery to normal because that was off the table. The only thing on the table was surgery versus no surgery. And then it became obvious my husband and I had no choice.

I think some parents inadvertently slip into the comparison of surgery versus normal which can only cloud good judgement as that isn't really the choice they are faced with.

I wish all the adults here good luck and positive, productive thoughts. I do think attitude is important. My second kid had an easier time than the first because she saw the first one go through recovery and knew what to expect. It really seemed to matter.

[titaniumed]

It really comes across in threads like this about how hard a decision this is in adults. It seems like it is rarely clear cut until it gets so bad. That is a such a hard position to occupy.

For me, it was so important to focus on the choice between surgery and no surgery as opposed to surgery versus normal. There was no point in spending any time comparing surgery to normal because that was off the table. The only thing on the table was surgery versus no surgery. And then it because obvious my husband and I had no choice.

I think some parents inadvertently slip into the comparison of surgery versus normal which can only cloud good judgement as that isn't really the choice they are faced with.

I wish all the adults here good luck and positive, productive thoughts. I do think attitude is important. My second kid had an easier time than the first because she saw the first one go through recovery and knew what to expect. It really seemed to matter.

Adults with adult degenerative scoliosis that really need surgery wait and hope they can maintain their pain somehow, and all along the clock is ticking and time passes quickly.....Pain makes our decision, for some of us, this pain can be hard to fathom. When all my methods of pain control failed to work, I knew it was time. It was a non-linear pain curve in which failure accelerated rapidly. You know when you are out of time. Its failure mode analysis done the hard way.

Setting the date is the start. When your surgeon asks “How about next week, I have an open slot” that’s a bit much because we need some time to absorb the impact of actually making the decision. I was thinking “Doc, I’m 99% on this.....I need another 3 months for the final 1%. That’s when we become zombies, thinking and making sure, we are sure, we are ready.

By the time the date rolls around, you need to be 100% ready.....and as hard as commitment can be with anything, the option of backing out isn’t there. Its sink or swim, and swimming can be a little hard for fused scolis, but like Susan mentioned, simply use the mask. A great example of adaptability.....its all about our mental prep and positive attitude.

Recovery takes a lot out of us. I know I couldn’t handle any other distractions or worries, the trivial things like cleaning up something just has to wait. The little things all have to be deferred, its not something that recovering scoli patients need to have on their minds. Recovery and recovery thoughts should be just that. I couldn’t imagine having to have to worry about going back to work in a few weeks, this stress is not worth it. Loved ones and the inner circle need to know this. Please don’t expect anything from us right now, that’s not fair.

Having a choice is something we have, and that makes it hard. If I have a heart attack and need heart surgery, there is no choice. It actually makes it easy. All that decision making stress isn’t there.....

Parents have it hard because they reinforce their kids and have to answer if something goes wrong. Kids rely on parents and surgeons 100% but if something hasn’t been covered, which is impossible, then answers have to be understood which can be difficult sometimes. I think it was best that I made my decisions all on my own and rejected surgery back in the 70’s. With limited medical knowledge, my question was “Scoliosis surgery” Yes or no. I knew it was like launching a rocket and landing it back down on the pad.

But we do that now.....(watch till the end, it’s the best part)
http://www.youtube.com/watch?v=2t15vP1PyoA

Huge smiley face, and yes things in the medical arena are better which makes the decision easier.....
Ed

[susancook]

Adults with adult degenerative scoliosis that really need surgery wait and hope they can maintain their pain somehow, and all along the clock is ticking and time passes quickly.....Pain makes our decision, for some of us, this pain can be hard to fathom. When all my methods of pain control failed to work, I knew it was time. It was a non-linear pain curve in which failure accelerated rapidly. You know when you are out of time. Its failure mode analysis done the hard way.

Setting the date is the start. When your surgeon asks “How about next week, I have an open slot” that’s a bit much because we need some time to absorb the impact of actually making the decision. I was thinking “Doc, I’m 99% on this.....I need another 3 months for the final 1%. That’s when we become zombies, thinking and making sure, we are sure, we are ready.

By the time the date rolls around, you need to be 100% ready.....and as hard as commitment can be with anything, the option of backing out isn’t there. Its sink or swim, and swimming can be a little hard for fused scolis, but like Susan mentioned, simply use the mask. A great example of adaptability.....its all about our mental prep and positive attitude.

Recovery takes a lot out of us. I know I couldn’t handle any other distractions or worries, the trivial things like cleaning up something just has to wait. The little things all have to be deferred, its not something that recovering scoli patients need to have on their minds. Recovery and recovery thoughts should be just that. I couldn’t imagine having to have to worry about going back to work in a few weeks, this stress is not worth it. Loved ones and the inner circle need to know this. Please don’t expect anything from us right now, that’s not fair.

Having a choice is something we have, and that makes it hard. If I have a heart attack and need heart surgery, there is no choice. It actually makes it easy. All that decision making stress isn’t there.....

Parents have it hard because they reinforce their kids and have to answer if something goes wrong. Kids rely on parents and surgeons 100% but if something hasn’t been covered, which is impossible, then answers have to be understood which can be difficult sometimes. I think it was best that I made my decisions all on my own and rejected surgery back in the 70’s. With limited medical knowledge, my question was “Scoliosis surgery” Yes or no. I knew it was like launching a rocket and landing it back down on the pad.

But we do that now.....(watch till the end, it’s the best part)
http://www.youtube.com/watch?v=2t15vP1PyoA

Huge smiley face, and yes things in the medical arena are better which makes the decision easier.....
Ed

Ed and all, I believe that the degenerative group are different from the folks that knew that they had scoliosis since heir teens or twenties because us older degenerative folks, like me, don't think about having scoliosis or surgery....or worry about it for as long as many of you have said who had scoliosis and knew that surgery was inevitable, but thought that you could wait it out. Many folks have gone to the surgeon over many years playing the "what's my number" game, waiting until they reach some magic number when surgery and or pain make the decision inevitable.

Many of the "degenerative folks" have spent their life periodically in pain, but have some minor treatments and go on. Then, they get tired of going to a chiropractor or PT and finally have a full back X-ray and get the surprising news of "scoliosis" at which point they are very, very surprised! Then, learn about the treatment and say things like, "why can't I just have my L4 stenosis and my thoracic kyphosis done"? And are told, "you need a big surgery Tsomething to Pelvis". Ha, not on your life....or mine! Pain becomes the factor that tips the scale as well as the pain management MD saying, "there is nothing mor that I can do for you".

For many of us degenerative folks, decisions are different as we are older, kids left home, retired or close to it and have somewhat slowed down in life. I used to backpack but now mostly hike.

When I decided that I was going to actually have surgery, the hunt for THE surgeon did not take long. The first surgeon was ready to schedule me in 6 weeks and the second in 2 months. Having the luxury of 2 great surgeons to choose from was great. The day after I saw the second surgeon and met with her RN right after I had the initial meeting, my head was on overload with way too much detail! A day later, the surgeon's scheduler called me to set a date.....no, I told her, not ready to do that. I waited 2 days more and called back and set the date. About 1 month before surgery, I suddenly had a sinking spell of doubt and wanted to cancel. That passed in a few hours and there was no turning back. About 2 weeks before surgery, a sudden calm came over me, and I did not have any doubt or fear. My whole attitude was, "Bring it on!" The morning of my surgery, I asked if I could walk into the OR. After they laughed, they decided that their insurance would not cover it, so I had to ride.

The journey for each of us is different, yet in many ways has similarities. In many ways, we face the surgery like we have faced many other challenges in life. I remember repelling off a tower in the Army. I knew that the sergeant that was controlling the lines would not let me fall, so I just lowered myself onto the wall and tried to repel down. I had no fear. For me, it is a do it or don't do it....there is no try! Like Yoda said. For my spine surgery, I had total faith that my surgeon would fix me. But as a caveat, that if I had a postop problem, we would just figure it out when it happened, and it did happen and I figured it out! For me, it was have the surgery 100% in it, or be less than that and not schedule.

Recovery was not on any schedule for me as I did not have to go back to work. That made it easier on me. Like I said on my thread, the drugs that hey used were potent on this little old lady and I do not remember much of the 18 days at UCSF. My son said that it was the Ketamine.

Enough! Susan, nicely tucked lower abdomen with healing 2nd degree burns......