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View Full Version : First time to this forum - reassurance??



BrianB
09-26-2006, 07:46 PM
Hello everyone - this is my first time here as I was recently diagnosed with a 50 degree upper and 47 or so degree lower S curve. I am going for some bending tests to see if my spine is flexible enough to just fuse the top curve. I've read all kinds of stuff on the internet, and it just seems really scary. The most major surgery I've ever had was my wisdom teeth. And I don't know why, but the catheter thing really freaks me out too. I guess I just need some support and stories about what others have gone through post op. My doctor says it's about a 6 hour surgery, in the hospital for 4-5 days, and you're walking within a few days or so. 6 months to a complete recovery with sports and everything. Has this been the case with you all?

Thanks!

Shari
09-27-2006, 01:11 AM
Hi Brian,

Hello and welcome to this forum!!! You have come to the right place, if you are contemplating this surgery. We have all had different experiences!!! None of us can sum it up with one simple answer to any of your questions.

We don't know what you have read, so it's hard to respond. I personally loved the catheter, didn't have to get out of bed to relieve myself. :) Everyone here is willing to give you all the support you need.

Shari

Suzy
09-27-2006, 06:05 PM
Welcome Brian,

Yes, at first it is very scary then slowly you read all the positive experiences we post-op people have had and then you become more informed. Day by day your knowledge will increase and with knowledge comes understanding and a peace within. This surgery is a miracle as far as I am concerned. You have so much info at your finger tips on this site, read back as many posts as you can. You will begin to see a lot of common experiences and a few that are very different then the rest. You have found a place where you will be supported, can ask about ANYTHING and you will not be judged or laughed at. We have all been where you are now. What scares you the most? Maybe we can ease those fears right away for you, let us know. Best wishes.

dawney
09-27-2006, 07:12 PM
Welcome Brian
I am 3 weeks post op and going home from rehab on Fri. Before during and after surgery you run through so many emotions. I am glad I had the surgery but it is a tough recovery but so far I have no regrets
Dawn

BrianB
09-27-2006, 08:51 PM
Hi everyone,

Thanks for the positive thoughts. It does make me feel better. I go through my moments of thinking it wouldn't be that bad to moments of completely freaking out. I'm not sure what my biggest fear is right now. I think I'm just terrified of waking up from it and being in a tremendous amount of pain with huge incisions in my back that have been stitched up, etc. Just being helpless in general. I've done a lot of reading though and it doesn't seem like everyone goes through this. I feel like my curves are not that bad compared to most - 50 top (I guess, thoracic) and 43 bottom. The doctor is thinking that I may be flexible enough to fuse only the top and the bottom could very well correct itself. I go in for my bending x-rays in about 2 weeks and will know more. How does this compare with some of your procedures and measurements? Did any of you have minimally invasive surgery with the little video cameras through the front or side? I'm working on a list of questions to ask him - so many... Any advice on this one? I have a long list already, but help is always appreciated. Sorry so many questions. I've been reading everything I can - and I've followed a lot of your threads and am thrilled to hear that you all are feeling positive about your experiences.

Brian

lbloodojunkieg
09-28-2006, 02:55 AM
Brian,
Can I ask how old you are? I am a 19 year old male who is 2 months removed from surgery. I had a 54 degree thoracic curve. I know exactly how you feel, I felt EXACTLY the same way. I thought I was going to be in sooo much pain, as I had heard someone say they have never experienced something so painfull. Well when I woke up I was surprised to feel that I have felt worse pain in my life, it wasn't as bad as I thought. It still hurts, but not as bad as some people make it out to be. Also, I wasn't stitched up. My incision was taped shut. I have the thinnest scar, it's so cool. I also hated the idea about a catheter. Having a tube in my penis wasn't a pleasent thought. But you will wake up and you won't feel it. I didn't realize it was in there. Although I had problems peeing, so they had to put the catheter back in there twice, while I was awake!! As you can imagine, it was uncomftorable, but it's not like its unbearable. I also thought that would hurt much worse than it did. If you have any more questions, please please don't hesitate to ask. Believe me when I say you will get through this. Just keep your head up.

BrianB
09-28-2006, 12:37 PM
Hi LB and others,

I am 31 years old, so I am hoping that I may be in a similar situation. You said you were 2 months post-op - how are you feeling? I am not really in any pain right now (just minor discomfort at times, but nothing that prevents me from doing anything athletic right now) which is making this decision very difficult. The doctor says that in 15-20 years, surgery will be inevitable since I appear to be progressing half a degree or so per year. The decision is, if I am flexible enough, do I do it now in hopes that I only have to have thoracic fusion and that the lower curve will correct itself, or wait until it gets to a point where I am 40-50 years old and have a 60+ curve and need complete spinal fusion...

For all of you - were you in a lot of pain before surgery, or have some of you opted for surgery more as a preventative measure like I may be doing?

abhbarry
09-28-2006, 01:02 PM
Hi Brian,

It is a difficult decision to have this surgery or not because in some cases it is a preventative surgery. If you look through some of the threads these questions will arise. I have a 55 degree thoracolumbar curve which is progressing about a degree per year. My surgeon says, "he doesn't like the look of curves like these." I am 27 years old and many factors are influencing my decision on surgery. I do have pain - some days are fairly good and others are downright bad. The days when I feel ok I question the need for surgery, but as you said, I don't want to wait 20 years and have a much more difficult recovery. My surgeon does say that if you are not in pain, he (personally) wouldn't want to operate. My guess is that he wants to make sure patients have tried other avenues for pain relief before undergoing this major procedure. I also have other things to think about (which would not be relavent to you - like child bearing and the effect on my back). So, I guess I'm trying to say everyone's case is different, but most people who decide on surgery do have pain that affects their lives to some degree.
Best,
Anya

lbloodojunkieg
09-28-2006, 02:14 PM
I am feeling good for the most part. Still no bending, and there is this area between my shoulder blades that starts to hurt if I've been walking for more than 15 minutes. Other than that, everything is good. I don't regret the surgery at all. Before surgery I also didn't have any pain. The only pain I felt was if I was at a concert or something, and have been standing for over an hour. My back started to hurt and get real stiff. I also played basketball everyday with my buddys with no problems. We just felt, for us, it was better to do it while I was young. Faster recovery time, I believe fewer complication risks, and I won't have to worry about it anymore.

sweetness514
09-28-2006, 02:27 PM
Hi Brian,

first off welcome to the forum.

I think it is a difficlut decision that you will have to make, and my advice to you is to get many opinions from different doctors and as much info from forums like this one on an idea of what you can expect as far as pain, recovery, and in some cases post op complications, just so you are aware and that way you will feel stronger in facing surgery. If you were a teenager, I would say wait b/c you are not in much pain and a good correction can be achived in your twenties and thirties as well, like me without having anterior. But I understand that you are seriously thinking about surgery since you are in your thirties and your curve is progressing. I don't know if you tried alternative treatments-some info can be found in the scoliosis non surgical treatment folder of this forum.

As far as post op pain. I can't speak for anybody else, and I do believe a person when she says she has pain, b/c we all have different thresholds for pain, medication works in different ways for a lot of us(some meds can help some and do nothing much for others), and we don't all have the same type of surgery. I can speak for myself, and I did have a lot of pain when I woke up, and I know what pain is and have experienced many types in my life since I was a child, but this was in a league of it's own. There were two reasons I had SO much pain though; one was that Morphine didn't do much for me and so they changed it to Codeine in the days that followed surgery, and also I didn't have an epidural cathetar like I did for this last surgery, wich made a lot of difference for me. So the good news is you know that they can take care of your pain if you have too much.

Good luck with your decision and don't mind asking questions.

BETall
09-28-2006, 02:32 PM
Hello everyone - this is my first time here as I was recently diagnosed with a 50 degree upper and 47 or so degree lower S curve. I am going for some bending tests to see if my spine is flexible enough to just fuse the top curve. I've read all kinds of stuff on the internet, and it just seems really scary. The most major surgery I've ever had was my wisdom teeth. And I don't know why, but the catheter thing really freaks me out too. I guess I just need some support and stories about what others have gone through post op. My doctor says it's about a 6 hour surgery, in the hospital for 4-5 days, and you're walking within a few days or so. 6 months to a complete recovery with sports and everything. Has this been the case with you all?

Thanks!
Hi : Please go to this information in the Internet

SOSORT.org and
info@schroth-skoliosehandlung.de
Beatall

Or call me ( 650 ) 494-2359 USAbtorres3380@sbcglobal.net

lbloodojunkieg
09-28-2006, 02:41 PM
Good post Sweetness.

BrianB
09-28-2006, 07:28 PM
This is all incredibly good to know. It's funny - in a lot of ways, I think you all are so much better than all the websites out there. Granted, they are informative, but they just don't have that personal touch that actual people have and can make you feel a little better. Right now, I am in the frame of mind that, if my bending x-rays show me to be flexible, that I may try to do it this summer. Of course, lately my back has been bothering me more (probably just noticing it more now). Nothing painful, but certainly uncomfortable at times. And the thought of knowing it could only get worse is motivating me to consider surgery pretty heavily. It almost seems like making my mind up in this way is a huge relief (at least, today I guess). I know I can beat this and you all are an important part of that. Maybe some day I can tell someone else to put a trash bag in their car to help slide in and out... So - mentally, I've taken a step forward at least. Appointment on 10/17.

lbloodojunkieg
09-28-2006, 09:10 PM
Good luck!!

Suzy
09-29-2006, 12:06 AM
Hey Brian,

I will tell you what made me want to get my surgery done ASAP. My pain was affecting my life, my curve was progressing 4* per yr, I was in excellent shape, my flexibility x-rays proved I would get a great correction and at 43 I was still considered young for this surgery. So you being 31, and it sounds like you're in good shape, and pain increasing. All good reasons to consider surgery sooner then later. Yes, this is a biggie but the way I thought of it was this way: I'm NOT getting younger, Dr's. aim for a 50% correction, (Why let that # get higher= less correction) loss of flexibility with age. PAIN. Daily. Controlling my life and it is not going to get better only worse and worse. Technology has taken a major leap in the last 4 years (per my Dr.) and nothing on the horizon to wait for. I did so much research in 3 months I was ready to schedule as soon as my Dr. had an opening. As everyone says it is a decision that is yours to make. But, having all the information helps to make the decision easier. As for the waking up post-op pain. I had none. I actually woke up and thought "Wow,it's over." and went back to sleep. The pain meds are so good there is no need to be in pain. Some need to change them around a bit to find what works for them, I did later in my hosp. stay, but you can be very comfortable. I have to admit I was worried about the catheter too, but didn't even notice it until a few days later and only when I rolled over. Also, please do not apologize for asking so many questions. We all were where you are now and your questions help us answer you more specifically. Ask away.............

BETall
09-29-2006, 01:51 AM
Hi LB and others,

I am 31 years old, so I am hoping that I may be in a similar situation. You said you were 2 months post-op - how are you feeling? I am not really in any pain right now (just minor discomfort at times, but nothing that prevents me from doing anything athletic right now) which is making this decision very difficult. The doctor says that in 15-20 years, surgery will be inevitable since I appear to be progressing half a degree or so per year. The decision is, if I am flexible enough, do I do it now in hopes that I only have to have thoracic fusion and that the lower curve will correct itself, or wait until it gets to a point where I am 40-50 years old and have a 60+ curve and need complete spinal fusion...

For all of you - were you in a lot of pain before surgery, or have some of you opted for surgery more as a preventative measure like I may be doing?
Hi :
Please go for more information to : SOSORT,org and info@schroth-skoliosebehandlung.de for more options
BETall


btorres3380@sbcglobal.net

BrianB
09-29-2006, 07:34 AM
Amazing support system here. I can't thank you all enough.

How long were you in the hospital for? I'm trying to get a frame of reference for how bad my surgery would be. Right now, my doctor is saying that I would probably be in the hospital for 4-5 days and most likely able to start driving again around 6 weeks. Similar with you all, or did your surgery require longer stays and recovery?

Cakedec
09-29-2006, 08:07 AM
Hi--glad that you found the forum. I was where you were at your age as far as curvatures. No one offered me surgery; I coped with the pain through chiropractor, massages, physical therapy, etc., but it steadily got worse as I got into my 40's. The progression continued until, at 47, my curves were both in the 70's and I could barely walk from the pain; had to stop working because of severe sciatica down my leg because the scoliosis twists and pinches the nerves in your back.

Finally found this wonderful forum a couple years ago and learned about the surgery and followed many who went through it. They were almost all pleased with their results and said they would do it again. So finally I found a surgeon who said "yes, you are a candidate for surgery, can't believe no one told you this before" and I had posterior surgery done the end of July. It went very well and I am now 9 weeks post-op.

I think that the time frame that your dr. gave you sounds pretty accurate. I am about 16 years older than you, so I was in for 8 days (the dr. said 7 days but they had to find the right oral pain meds for me first before I was up to leaving). I started driving again at 7 weeks.

If I had it to do over again, I would have had the surgery at your age. Then I wouldn't have gotten to the difficult point of having to give up a job I enjoyed because of pain and disability. Plus the correction would have been better than what I got because the progression wouldn't have been so much.

However, if you are not in pain or disabled from your normal activities, you probably could get along a few more years using physical therapy or "Schroth method" and other things that relieve the spasms and occasional pain. Just keep tabs of how your curves are progressing every year or two so you know if the progession starts speeding up (mine really did after 40.) I would recommend that you get the surgery done before you are 40 unless the curves seem totally stable and doesn't bother you. The nice thing about this being an elective surgery is that you can plan it out when you have help, remembering that your bending, twisting, lifting will be limited for 3-6 months.

Let us know how things go for you.

Deb
posterior surgery 7/24/06
for S curve T70,L76
30 degrees correction
DON'T WAIT!!

sweetness514
09-29-2006, 02:24 PM
Amazing support system here. I can't thank you all enough.

How long were you in the hospital for? I'm trying to get a frame of reference for how bad my surgery would be. Right now, my doctor is saying that I would probably be in the hospital for 4-5 days and most likely able to start driving again around 6 weeks. Similar with you all, or did your surgery require longer stays and recovery?

I was in the hospital for seven days, some are there longer but again it depends on what surgery one has, age, if they go to rehab, etc.

As for driving, usually they recommend it when you're feeling ready in every way, and off heavy narcotics. I had a very long recovery but again I didn't get any pain meds past the three week mark(difference of mentality concerning pain meds here in Canada, but it has changed lately), and all the doctors I have seen here don't recommend driving for at least 3 months, some even longer. That's just a different mentality b/c they like to be extra careful but if your doctor tells you it's all right earlier, and you feel up to it, you can. I had such a difficult recovery-I also needed another surgery to remove a hook that was really hurting and making my pain debilitating- that I didn't care about driving, but that's just me. It's like the no bending/twisting/lifting rule, some keep it for three to six months, some a year.

Good luck.

Suzy
09-30-2006, 01:44 AM
Brian, My Dr. said 5 hrs. surgery it was 8. He also said 5 day hosp. stay it was also 8. I drove at 5 weeks post-op. Checking blind spots is tough though.

Shari
09-30-2006, 02:25 AM
Hi Brian,

As usual, you have already gotten great advice from quite a few people on this forum. I wish nothing but the best for you!!!

BETall,

What is the purpose of your link??? Just curious.

Shari