How was your early recover period...honestly

[CHRIS WBS]

I'm sorry, but the more I read these posts, the angrier I become. Last night I listened to Jane Fonda discuss her recent hip replacement surgery on the Larry King Show and comment on how wonderful it is that we are living at a time when we can have worn-out body parts easily replaced and within no time resume our lives pain free. Let's face it, ladies and gentlemen...when it comes to treating scoliosis, we are living in the Dark Ages. This is barbaric treatment!!! If more people were afflicted with this awful spine disease, I'm sure there would be treatment modes available today that are far less invasive, painful and life-altering. No wonder when I asked a surgeon what he would do if he had my spine, he commented that he would wait until he could no longer function and then have an operation. I guess by then you're just so beaten up from pain that you become desperate and will try anything. I recall reading one woman's story of her surgery and how she was actually disappointed when she realized she was in the recovery room and had survived the surgery. How sad. I could even go along with the pain and long recovery, if I knew that at last I was treated and all is well. But that's not the case. You don't know if down the road you're going to have to deal with more pain, side-effects, more surgeries, etc., etc.

Lord, give us strength.

Chris

[lelc2002@yahoo]

Chris WBS,
I think if Linda Racine gets on here, she will tell you scoliosis surg. is way, way better than yrs ago. My husband's good friend's wife has the harrington rods & all has been ok for her with it. She would tell you how much harder a recovery she had to deal with! She was in a body cast & all. She can't believe how advanced they are now that you are up & walking soon after the operation..... If you research it further it is amazing what can be done...Just on researching Dr. Boachie, I could not believe the stuff he's done & invented..... I thank god every day now that he can help me! I have to agree a bit with Jane Fonda--(sorry chris) I mean they are working on the Spine here!!!Amazing to me that they can move it over??!! the pain factor sucks but does'nt last....I hope

[Jacque's Mom]

Body Cast/Harrington Rod

Lynne, I was also one of those with the body cast/harrington rod. I will say, if they didn't advance to what they have today and that was the only surgery available and I had to do it over, I would as it gave me my life back! Living in that horrendous pain is no way to live. As I searched for years for someone to help me, I swore I would do ANYTHING if it helped me with my pain. It's wonderful how they have advanced and with Dr. Boachie doing your surgery, it's a win/win situation. GOOD LUCK TO YOU and to everyone else facing this trying time. All the best, Lynn

[Gail]

My recovery was worse than I expected only because of something my husband told me. He worked in a hospital back in the 70's and the spinal fusions were not as advanced as they are today...approx. 6 weeks in the hospital, striker frames and body cast for 9-12 months. So, when we went to see my spine surgeon and he told me 3-5 days in the hospital, removable corsett instead of body cast, etc. my husband was pumped! I can still remember coming home from the doctors office and hearing my husband say over and over, "Oh honey, this is going to be a walk in the park". He must have told me that 1,000 times!

Well, I had the surgery and it was NOT a walk in the park! So, I told my husband over and over, "Honey, this is NOT a walk in the park!". I must have told him that 1,000 times!

So, the journal I always talk about...here is what the front page says:

My Scoliosis Surgery Journal 2003 - "A Walk in the Park"

Kindest Regards,
Gail

[judyk]

I guess I am a little wimpy in that my husband slept in another room for 2 1/2 months after my surgery. I couldn't take all his moving around and I was unable to turn from side to side with him in the bed--I literally needed the whole bed to turn. He took off 5 weeks from work but after about 2 weeks he was playing golf and gone some, and he also did some house painting and other things around the house so that he was there for me but not really intensely caring for me as he was the first couple of weeks. Six months out I still can't reach way back in low cabinets and I use my grabber to get clothes out of the washer and dryer, pick up the newspaper, etc. We have a big dog and I don't pick up the water bowl, but it is not so much my back that is the problem but my knees seem to not be as strong as they once were.

[Shari]

To Chris,

This is only the 2nd time that I have so strongly disagreed with something someone said that I felt the need to respond. I don't know how old you are or how long you have had scoliosis? I was diagnosed in 1972. At the age of 12 I wanted to know everything I possibly could about it. I read everything that was avaliable to me at the time. I even did my 7th grade Science Project on it and won Honorable Mention at the State Science Fair. That may not seem like much now, but back then people knew very little about it.

You claim we are in the "Dark Ages" now. I am curious about your opinion of the treatments back then. I personally am grateful that some Doctor's have devoted their knowledge and skills to help those of us that have dealt with this illness for years. Especially when it is a condition that is not totally understood. We only had the oportunity to be treated as a child. I still vividly remember my Dr. telling me that once I reached adulthood, there was nothing that could be done. I believed what he said, but in the back of my mind I had hoped that Medical Science, eventually, would find a way to fix me.

I believe that the spine is as intricate as the brain, but I also think the spine is much more complicated.

You mention one person that wished they would not have survived the surgery. What about the thousands of us that feel blessed that technology has enable us to have a more rewarding life. You mentioned the Dr. that said they would not have the surgery until they couldn't function! Well hell, I would of said the same thing if I didn't know what it was like to live with it.

If you had cancer, would you not endure the sometimes long and agonizing treatments if there was a chance that it would help you live a more rewarding life? Knowing there are no guarantees that it would be successful.

I feel confident that advances in this technique will continue over time. Just as they already have. To call this treatment barbaric, seems a bit over the edge to me. I consider it an extremely complicated surgery, and my hat is off to those that have had it done and the Dr.'s that perform it well. No matter what choice you make in life, there is always a risk. I am not trying to be confrontational, I just feel you are being slightly one-sided.

Lord give us the strength to accept the things we can not change, the courage to change the things we can, and the wisdom to know the difference. (Just thought I would finish your closing statement.)

Shari

[Curvy Corky]

Hello everyone.

I thought I'd put my 2 cents in. Shari I completely agree with you about your comments to Chris. I think it's a bit over the top calling it barbaric. I just had my surgery in January and it amazes me what they can do with your spine. I mean to see the correction I got post surgery was great! I can't say my recovery was easy because it's been the hardest thing I've gone through in my life. But my pre-op pain is totally gone. Yes I do have pain now but it's from the fusion and I know eventually it will pass. But I am very happy I had it done. The way I was living my life before in constant pain was horrible, there were times I was even thinking about suicide as an end to my pain, because nothing seemed to work before. I am so glad I found my surgeon and he was able to help me. It's been very hard for me but I don't regret it. Yes this is a long recovery and realistically I probably won't be normal again for a year. But I was in chronic pain for over 3 years which felt like forever. Believe me I can push through one year of pain and discomfort for a lifetime of feeling good.

Now....to those of you facing this surgery. Please keep in mind this was my experience and not everyone has the same. Every person heals differently do don't get down just because some of us had a very hard time. There are just as many people out there who had very easy recoveries. Yes the recovery was harder than I expected. I thought I'd be back at work after about a month maybe 2 months at the most. Haaaaa!!! That didn't happen.
I'll be honest, the first month was hell for me! I had to be jacked up on pain killers 24/7 and if I let one hour pass on my dosage, oh lord the pain was horrible. So keeping up with my pain meds was my top priority. I think alot of my hard time was also because I got a really bad stomach virus a week after I got home. I had a little scare and had to go to the ER one night and I caught the virus there. So my situation was a little different. I spent the next 5 days constantly vomiting, not able to keep any food down at all, and barely any liquid. But I did loose almost 20lbs and it stayed off. I'm quite thrilled about that now. But back to recovery, as you'll see I ramble a lot! My mom stayed with me and my husband the first week, this was a good thing. As much as I prepared my husband and made him read material about the recovery and what he'd need to do, etc.... He had no freaking idea what he was in for. For the ladies facing surgery you'll see this soon.... Men just are not natural caregivers, so don't expect too much. If you have a mom or sister, etc, get her help. I hope that doesn't sound sexist, but it's just true. My husband did try but he got so freaking frustrated with me when I would ask for things like putting on/taking off my socks in the middle of the night. I was so hot/cold all the time after surgery one minute freezing the next sweating. So we fought alot about the socks! Like I said first month was very painful, I'd wake up in the middle of the night in tears because I passed the time for my pill by maybe 30 minutes and it was horrid! Sleeping was hard becasue I couldn't get comfortable. Mainly because of where they removed my rib, a portion of it stuck out a bit hurt when laying down. So I had a ton of pillows proping me in bed. My husband slept with me but if we had a king bed instead of a queen it would have been much better. Poor guy had like and inch of space for himself. My work friends brought over a ton of prepared pop in the oven frozen meals which helped out a ton. Because my husband was working the whole time and he'd just come home at night and pop one in the oven. The first week of course mom maid meals all the time. Going to the bathroom was very hard, I didn't have the seat thing. #1 not so bad, #2 almost nearly impossible to wipe. Sorry but you'll want to know this. I had to figure out how to do it but it was very hard. Constipation was a major problem for me mainly because my surger was anterior and they move all your insides around and it freaks them out. I had bladder issues the first few weeks. I would have the urge to pee and then go to the restroom and sit there for 30 minutes and nothing. Finally it would happen. That was very frustrating, because getting out of bed for nothing, NOT FUN!!!

We also have 2 cats and they are fed in the morning and night. Husband would do the morning shift but he was rarely home in time to feed my little garbage disposal siamese. If you don't feed her on time, she will get in your face and meow till you can't take it anymore. So since I couldn't bend over to put their paper plates of wet food down, I'd sort of squat a bit and toss it and hope it landed face up. Never missed!

I pretty much stayed in bed the entire first month, my energy was so low and I was in so much pain, I really couldn't do anything. I did sleep alot, which I hear is good cause you do the most healing when sleeping. Taking a shower was very hard, I really needed my husbands help the first month. so I'd have to wait for him to get home. Some day's I go 2-3 days without a shower, I know it sounds gross, but when you feel that bad you really don't care.

By the second month I was getting up more during the day, walking around the house, checking email/internet once in a while. Finally starting to take a shower every day on my own, you have to learn how to do it all in a new way that's the hardest part. But I learned the hot water felt so good. Some times I'd take a few showers a day for the hot water. I was still taking alot of pain pills the 2nd months, slowly cutting back. Started walking outside a few times a week. This was hard but nice to get out of the house. I hardly ever got in the car before now since I was scared of having a wreck and it was just too hard to get me together to go anywhere.

Sitting has been hard for me since day one. I'm now 3 1/2 months post op and sitting is still very hard. I can sit about 30 minutes and then the pain comes. I'm not taking pain pills that much anymore, but I do need them once in a while, maybe 2 times a week average. I started work this week and it has been hard. Just doing 4 hours a day. The sitting part is the worst for me, I just get to a point where I can't take it anymore and I have to come home and lay down. I've been doing physical therapy for a while now, and it's hard sometimes but has helped me become more flexible and do more on my own. Like put on socks, you never think that's hard till you can't. I can't bend over yet but I can squat pretty low to feed my cats now. I can even get some things off the floor from squatting.

I could ramble all day long about my experience, but I won't, cause I'm getting tired and I'm sure you are too from reading it. But if you have questions send me a message. I'll end with this, it's been a very long hard recovery for me, but even so, I really do think it was worth it.

I wish you all the best and will pray for you all. This really is the best place to get info on your upcoming surgery. These people have been through it all.

Take care!

[Shari]

Hi Shelly,

I could relate to alot of what you said. If you're already off your meds and back to work, even if it's only part time, I think you're doing great.

I got a smile on my face when you mentioned trouble wiping after #2. I was in a brace and there was no way in hell that I could reach that area. That was probably the most humbling experience at the age of 45.

Keep up the good work,
Shari

[lelc2002@yahoo]

thks shari & shelly,
I think pre-op as women, you end up thinking how will things like laundry, groceries will get done?? Who will clean the house? who will be with the boys?? who'll do the dishes? Yeah, so you get organized as much as possible with a cleaning lady(have one avail.) & maybe she can do laundry too...Most of this will fall on my husband & my mom who wants to come up & help. God, she'll be 80 this May & I really don't want her to be doing alot.... I guess the main thing is to keep the boys busy & taken care of....
you all put it in perspective that I'll be exhausted & won't care about anythg, at least for the first month. If it was just me & my husband, I don't think I would be as worried... but having the kids. they need me...well, Alot!
It will all work out....too much waiting, too much anticipation....

[Marcia]

I can't thank you ALL enough for the honest reports of your recovery. My printer keeps getting a workout because I want to save your comments. My husband is reading them as well, so I know he will be more prepared because of you!

These are the things that a doctor never tells you because he will never experience it himself. God bless them and their skills to help us when just a few years ago no one could! But we can only get so much information from doctors.....the vast majority comes from you who have lived it and have experienced it.....both the questions/fear before surgery and the pain/recovery after surgery.


Thank you so much!

[SpineWhine]

It seems like ground is pretty well covered here, but I'll add this (since everyone is a little different):
I thought recovery was easier than I thought it would be. Not that it was easy, but I was expecting worse. Pain was managebale with drugs, and each day was remarkably better than the day before, and drugs became less of an issue.

My husband did sleep elsewhere for the first few weeks, as whenever he rolled over, the bed moved, and that was very uncomfortable for me. I did do a lot of lying around at first, propped up by pillows, and using heating pads. I also made sure to walk as much as possible thought, too, which I believed helped me recover better. Even after I started working again (at 8 weeks), I came straight home and went to bed. You have to find the balance between pushing your limits and getting enough rest. I think it is a fine line, and where everyone differs person to person.

[dmb]

Question for post-op adults(30-40-50's): Was the early recover period(first 4 mths or so) unlike what you visualized it to be? harder, easier? Were you way more tired then you thought you'd be? thks.... & also did you sleep w/ partner or alone the first weeks home??

Hello,

i too was totally unprepared for the recovery process. Do i regret it? Not at all. I am almost to my full recover period in May. i still struggle with some things but getting in and out of cars and off the toilet seats are long gone but they did happen! Just dont get frustrated, surround yourself with loving patient people who want to help you and you'll be ok. Dont try to be tough and not take the pain pills, take them and be thankful for them. Get yourself some of those bendy straws. I had a hard time putting my head back to swallow anything, get some baby wipes, there will be days you dont want to get up and they will come in handy. If i had it to do all over again, i would. The pain from surgery is a different kind of pain than the recovery pain. I must tell you tho, the scoliosis pain was gone almost immediately!!! Take care and good luck. Be choosy in choosing a surgeon, that is key!!

dmb

[sweetness514]

Some of my experiences...

My recovery was much harder than I expected, as the doc told me I'd be good as new in three months, wich is unrealistic, b/c after some months and until maybe a year the curve can be stubborn and wants to come back, as it pulled. The thing is, not only are we all different b/c of age, strenght, stamina, bone structure, nerve endings, curve, etc...There is also the fact that for some there are other health issues that don't help. Mine were extreme insomnia(that I've had since I was a child, and was tested for in sleeping clinics but no help), and I was also very anemic, and didn't find out over a year post op. So being very thin, with small bones and not athletic at all and getting sometimes 1 hour of sleep with a low iron count doesn't help this recovery, to say the least I also believe that some doctors help more than others. Mine was supposed to be a top surgeon that traveled and taught all over the world, but he had no bedside manners. So I was 26 and didn't know anything about how to recover and didn't know what could help, like sitting in a good chair for example. I did walk every day after my three surgeries, all in the Winter, in -35 tems and snow storms if I had to, and went to the pool. It took about 6 months to a year to START feeling "normal" a bit more, but the first six months I would say are the hardest. I also needed a second surgery to remove a hook since I couldn't move my arm, and that gave me pain for a year and four months post op, until they could take it out so that the fusion was more solid. It also depends on the number of vertebreas fused, and if they do anterior as well, and the hip graft(as I had done), etc.

About sleeping without your partner, don't feel wimpy as any doc will tell you that it's much better to get rest for you and your mate, the other way around will not help your relationship Just like for snoring and insomniacs too, and when it's time to sleep and rest, it's time for just that. My fiancee(now hubby) who's so patient and amazing was laid off from work at the time, and with my mom he took care of me I am fortunate I know, but it also takes organization. Hats off to those of you who have kids, it must be stressing, depending on their age I guess.

Chris, I have to agree with some of what you said, even if there are AMAZING things that evolved since people wore casts The spine is so complex....Some people tell me thay can't believe how long the recoveries are others can't believe how fast I could walk, depends how you look at it, like with anything.

Good luck to all and do what you can do and what's best for you and your recovery.

[Suzy]

Whew everyone covered quite a bit in replys for you here Lynn! My recovery has been a bit slower only because I thought I was superwoman going into this. My Dr. was thrilled at my progerss at 7 week check up, I was not. I thought I would be heading to physical therapy. Instead I got issued another 6 weeks of 3-4 lb lifting limits! UGH! Then another check up. Baby steps for all improvements. I started a journal before surgery that I was going to keep up post-op but it got lost at the hospital. I keep notes next to my log of meds and times taken to see what I do that makes me hurt or doesn't hurt. I am also able to see how far I have come in needing less meds. I couldn't believe Chris' comments and wonder if she really feels that way or is just so scared of surgery that she doesn't know what to think. Technology in scoiloisis surgery has taken a huge leap in the last 3-4 years. I feel the pain I have post-op is a means to an end. Not the constant building up of pain month to month as my scoliosis gets worse and my quality of life goes to hell. There are alot of unknowns in LIFE as well as out comes in scoliosis surgerys. I may or may not need future surgery but I can only imagine how much more advanced surgery will be by then! I got better results then we ever dreamed of (49* to 8*) I was willing to have the surgery shooting for a 50% correction and less pain if not any. I read alot of posts as far back as they went and thought that if I ended up in the middle (recovery wise) that would be good enough for me. I did not believe how much I slept the first weeks home but I think it was due partially to the meds. That and the pain lasting a bit longer then I thought it would were a bit of a surprise. I just started to have hip pain at bone graft site 8 weeks to the day(walking with a major limp) and noticed my back pain had subsided. Hmmm........ was it due to the hip pain? My Dr. had added bone chip to my graft site to lessen the pain (new studies found this worked very well) and here I am 3 days later and it doesn't hurt any more. As for keeping your partner in your bed........I have a mattress that I can't feel him get in or out of. He does hog the covers which was more irritating then normal due to not having the strenght to reclaim my portion. I guess it depends on your mans habits. Also, your kids are old enough to understand and help which a lot of people don't have. You just need to keep reading everyones experiences, bad and good and shoot to be average. That helped me a ton. best wishes, Suzy

[katblack]

#2 almost nearly impossible to wipe. Sorry but you'll want to know this. I had to figure out how to do it but it was very hard. Constipation was a major problem for me mainly because my surger was anterior and they move all your insides around and it freaks them out. I had bladder issues the first few weeks. I would have the urge to pee and then go to the restroom and sit there for 30 minutes and nothing. Finally it would happen. That was very frustrating, because getting out of bed for nothing, NOT FUN!!!

Dear gawd yes! I had to learn how to wipe my own butt! I cried over this. I was so upset about it. I honestly didn't know what to do, it drove me crazy. And yeah, the constipation but needing to urinate, drove me up the wall too.