Nervous, need advice

[stacey]

Good Morning - I am new to the forum and thrilled with all the information everyone has posted out here. I'm 30, as of two years ago 53 degree lumber curve. Not sure of the thoracic degrees..

I have a million questions and a lot have been answered searching posts but was hoping to get a few more. I don't know the specific start and end the fusion would be but I was told it would be pretty much from the bottom of my neck down my entire back. My dr and I will be deciding in a few weeks once I go to see him.

1. For those who have had the surgery - was it worth it? Would you do it again if you had the choice? I'm not in a lot of pain, more discomfort.

2. Is it reasonable to think I could go back to work after 4 or 5 weeks? Be able to head out of the house?

3. How is your back after - bandages and stiches? Is it okay to lay on it?

4. Are you able to walk around right away afterwards (I'm terrified of not being able to)?

5. As for going to the gym - I understand short term I'd be limited to machines/exercises - but long term are things such as back exercises and situps going to be doable? Swinging a golf club?

6. Will I be able to blow dry my hair in a short period of time after?

7. Um, well, what about intimate encounters? :-)

I know, a lot of questions, I'm just so confused on what to do and worried about making the wrong decision. Thank you to anyone who has a minute to answer any of my questions.

[johnsonbunch]

I'm 43 and scheduled for surgery in 23 days. I was 52 degrees lumbar at your age. I'm glad I didn't do it then or in my teens for a few reasons. I was still very flexible, active, skiing, sailing, sports, going to gym. I still looked pretty good even in a bikini. I had only discomfort and no pain. I was single and liked being -um- flexible. I didn't get married and have my first kid til 30.

In the last 13 years, my curve has progressed to 68. Only in the past few years am I really feeling it in regards to range of motion and pain, which is still not unbearable. I do have a lot of arthritis which causes constant burning in my sacrum. I cannot stand or walk for long periods. My kids are 14 and almost 12. They are helpful now. I have a job where I have the opportunity to take a couple months off if I need to. I have better insurance than I ever had. Could I delay it another 5 years? Yes. Will I ever have this opportunity again? Who knows.

I'm still nervous myself and I worry that with a major fusion I won't be able to do the type of things I take for granted. Do you do specific exercises to keep flexible and work opposite your curve? Ask the doctor if you have any degeneration, especially in your discs. That's where my real problems started. Find out how much the curve has progressed over the years and get an idea what to expect should you delay it another 5 or 10 years. You have a lot to consider, especially if you have small children or want to have any anytime soon.

[stacey]

Thank you for your reply - it sounds like you made the ideal decision for yourself - my thoughts are with you for your upcoming surgery.

What you said makes a lot of sense, which is part of the reason of my debate. I don't want to lose the ability to do the things I take for granted now. I've also heard though it's easier when you are younger to heal and I am scared to get to the point of constant pain. My situation currently with work, insurance and my husband's work is actually ideal to have the surgery done, but I can't say it wouldn't be the same in the future.

If I knew I could do it now, get it over with so I wouldn't have to worry about it anymore and still be able to do the things I'm used I would probably do it.

[johnsonbunch]

Scoliosis by itself does not have to cause pain or limit your activities or lifestyle. I think surgery is absolutely necessary only if it's causing pain or has progressed to the point where it's inhibiting lung or heart function. Also, many younger people have surgery for cosmetic reasons, to stand up straight and reduce humps. The surgeon may suggest surgery to limit the curve from progressing. Many people with fusions still see their curves progress after surgery, albiet not as quickly, so there's no guarantee. Do your research. Read the forums. Don't make a decision in haste. There's no Edit>Undo.

[stacey]

When did you start having noticable pain or decline in your lifestyle? Did it seem to progress gradually or come on a little more sudden?

In the past couple years I've noticed phases where my back will really hurt for a few months where aleve won't help but then seem to be okay for a while. I can't really drive long distances without pain, but my husband does most of the driving so thats not much of an issue. I had a lot more pain walking around a mall, for example, until I put a shoe insert in my right shoe which seemed to allow me more distance without as much discomfort. I wouldn't say any of this limits my activities, but I have noticed a decline a little more and more as time goes by.

And I am definitely doing plenty of research and trying to gather as much info as I can before my dr's appt on Aug 25th to check the curves and make a decision as to the next step. I appreciate your advice - I have seen a few threads you have been on and it sounds like you have looked into and asked many of the things going through my head.

[johnsonbunch]

About 8 years ago I fell flat on my sacrum when my hammock collapsed. I couldn't brace the fall, was holding my baby. I was badly bruised and probably fractured something, as that was when I think the arthritic spurs started growing, since there was nothing in earlier xrays. I've worked out at the gym most of my life, and my solution was more ab and back exercises. I had lots of low back pain and burning, and 5 years ago, when the spurs showed up in an xray, I stopped the exercises since the friction was aggravating it. The pain is since less frequent, but lots of walking or standing really hurts, and I get sciatic pain down one leg.

I guess the "discomfort" has increased gradually over 20+ years, but I have noticed a marked change just in the last 5 years, both in pain and range of motion. Part of it may be my more sedentary lifestyle, or the extra 10 lbs, or the fact I'm over 40, but I know it's mostly the degeneration and arthritis.

[JenniferG]

Welcome, Sandy!

I will try to give my perspective in answering your questions.

1. For those who have had the surgery - was it worth it? Would you do it again if you had the choice? I'm not in a lot of pain, more discomfort.

Absolutely! I also wasn't in a lot of pain, compared to many here, but I couldn't be happier with the result.

2. Is it reasonable to think I could go back to work after 4 or 5 weeks? Be able to head out of the house?

I certainly could not have, but then you're much younger than me. Someone your age can better answer your question than me. I know some teens are back at school in 6 weeks.

3. How is your back after - bandages and stiches? Is it okay to lay on it?

I had two epidurals so felt nothing for the first three days, but woke up on my back. I continued sleeping on my back for maybe four weeks because sleeping on my side was too uncomfortable. But everyone's different and if you find it comfortable, there's no reason why you shouldn't sleep on your side. i did not have stitches, I had glue and my back was uncovered on Day 4 and was left uncovered from then on, with no problems.


4. Are you able to walk around right away afterwards (I'm terrified of not being able to)?

I was sat up on Day 2 but my low blood pressure prevented me from standing. But I took a few steps on Day 3. After that, I walked the hallways every day and once home, began short walks outside the house.

5. As for going to the gym - I understand short term I'd be limited to machines/exercises - but long term are things such as back exercises and situps going to be doable? Swinging a golf club?

I wasn't given any instructions other than to walk every day. At my three month appt. my surgeon told me to walk twice a day. I did, but now I do a long, fast walk most days. I am asking about kayaking at my 5.5 month appt in August.

6. Will I be able to blow dry my hair in a short period of time after?

Some people have problems raising their arms for a while. I did not, despite having quite a high, long fusion. I shampood my hair by myself the first day I had a shower - day 4 or 5.

7. Um, well, what about intimate encounters? :-)

Again, I was given no instructions, but I think it's the same as anything else, take it easy and be careful. If it hurts, don't do it!

As for the timing, I think the fact that younger people fare better, is a strong indication that now is better than later.

Any other questions that come to mind, fire away!

Jen

[lapieper]

1. For those who have had the surgery - was it worth it? Would you do it again if you had the choice? I'm not in a lot of pain, more discomfort. Absolutely I would have the surgery again, and again, and again. I was originally fused T2 through S2 in Mar 08. The clamp holding the Harrington rods was irritating me, so was removed outpatient surgery in Nov 08. I continued having problems in that same general area (T4 thru 6, not sure), and ended up having a fracture at T3. Apparently it never fused and eventually fractured. They removed about 4" of rods, hooks and screws and replaced the too big screw at T3, Mar 09. So far, so good!

2. Is it reasonable to think I could go back to work after 4 or 5 weeks? Be able to head out of the house? Depending on your length of fusion, your personal healing abilities, and doctor's limitations, you may be able to drive at six weeks. I only worked part-time from Jul - Dec 08 (surgeries in Apr 08 and Nov 08). I don't think I could have returned full time any sooner, without sleeping the rest of my day!

3. How is your back after - bandages and stiches? Is it okay to lay on it? I mainly slept on my back, even though it felt like I was sleeping on a 2 X 4. That feeling went away fairly quickly. The biggest challenge for me was sleeping, period. I only slept 1-2 hours at a time, putting on my brace in between sleeping times and reading for 20 minutes. It was just difficult to lay in any given position for any length of time. I had staples, and my hubby changed the bandage every morning after my shower. When I went in for my two week check (I think), my staples were removed and my back was bare! Sure looked better than those staples. Hubby called me Frankenstein for those first couple of weeks!

4. Are you able to walk around right away afterwards (I'm terrified of not being able to)? I don't think I got out of bed until day 5, at which time I had my TLSO, and was in the Rehab Facility. I was too groggy and weak to get up any sooner than that.

5. As for going to the gym - I understand short term I'd be limited to machines/exercises - but long term are things such as back exercises and situps going to be doable? Swinging a golf club? I started physical therapy 4-18, and went three times a week until my last session, 6-13. I didn't do but a couple of machines, every thing else was stretching with surgical tubing, exercise ball, wobble board and Bosu ball.

6. Will I be able to blow dry my hair in a short period of time after? I think it took me a couple of weeks to dry my hair.

7. Um, well, what about intimate encounters? :-) Hubby and I waited until my doctor said OK - about six months. Let's put it this way: We've been married 31 years and it's all new for us!

I know, a lot of questions, I'm just so confused on what to do and worried about making the wrong decision. Thank you to anyone who has a minute to answer any of my questions.

Don't worry about questions. We've all been there. I didn't discover this forum until about 2 months ago. I walked into surgery basically blind, except for what my doc told me. I rather preferred it that way. You know, denial!

Keep asking questions. Someone will always answer them. We all have faced the decision process, and only you knows what will be best for you. Supportive friends and family will walk/carry you on the days you can't do it for yourself. And we only have to do all of this one day at a time.
Les

[Pooka1]

Also, many younger people have surgery for cosmetic reasons, to stand up straight and reduce humps.

I doubt there are ANY board certified surgeons who operate for this reason. It is obvious malpractice.

[LynnMarie74]

Ya know...I hate when people say that...."for cosmetic reasons" Who in their right mind would want to go thru the pain of this type of surgery just for looks? And, to your point, what good surgeon would agree to do so? Ughhh...

[Pooka1]

It's facially fallacious.

[PNUTTRO]

I don't know the specific start and end the fusion would be but I was told it would be pretty much from the bottom of my neck down my entire back. My dr and I will be deciding in a few weeks once I go to see him.

Regardless of how you feel about your surgeon, a second opinion is worthwhile.

1. For those who have had the surgery - was it worth it? Would you do it again if you had the choice? I'm not in a lot of pain, more discomfort.

I don't regret having surgery.

2. Is it reasonable to think I could go back to work after 4 or 5 weeks? Be able to head out of the house?

8-10 weeks is more reasonable to go back to work. Getting out of the house will depend on how you feel.

3. How is your back after - bandages and stiches? Is it okay to lay on it?

After surgery you should have adequate medication to control your pain.

4. Are you able to walk around right away afterwards (I'm terrified of not being able to)?

I got out of bed the next day. The sooner the better.

5. As for going to the gym - I understand short term I'd be limited to machines/exercises - but long term are things such as back exercises and situps going to be doable? Swinging a golf club?

Just keep in mind that your back won't move the way it used to--in fact, it won't really move at all. Your muscles will "feel" different. I can't really explain it better than that. You won't have exercise restrictions after you have fully recovered. You'll just have to get used to the new way that your body will move and make adjustments.

6. Will I be able to blow dry my hair in a short period of time after?

If you can't go out, who cares? Just my opinion.

7. Um, well, what about intimate encounters?

I think there was a thread about that somewhere. . .

Hope that helps.

[Cimbom]

Ya know...I hate when people say that...."for cosmetic reasons" Who in their right mind would want to go thru the pain of this type of surgery just for looks? And, to your point, what good surgeon would agree to do so? Ughhh...

I don't think it's fair to say just for looks. As far as I'm aware, scoliosis is more common among women than men and I don't think it's unreasonable that women, especially younger women, would want to look somewhat "normal". I mean when you think of all the pressures there are for women to look a certain way, I'd think that a straight back/hips and "normal" ribs would be pretty standard things to want.

My primary motivation was cosmetic and I'm not ashamed of that. Although there were other strong motivations such as my surgeon's assessment that if I didn't have the surgery now, there was a very high likelihood I would need to in the future. The doctor also said as my spine was quite flexible now, I'd get a better correction than say if I did it in 10 or 20 years time. I didn't have a lot of pain, more just stiffness and discomfort when sitting for long periods in uni lectures, etc. Apart from that, I was pretty fine I think. I decided to have the surgery now so that I would have a better correction and less possible complications in surgery and so that I enjoy the cosmetic improvement while I'm still young.

I haven't tried on much proper clothes since the surgery, but I look forward to (hopefully :P) being able to wear the kinds of things that I haven't been able to and feel confident. I've always enjoyed dressing up and so for me, it doesn't seem petty at all. I don't think it's any different from someone having surgery so they'll be able to do other things comfortably. Although, obviously the person wanting to have surgery for physical improvement should meet other criteria for the surgery such as have a curve over a certain amount, progression, etc etc.

[naptown78]

Hi
This is a reply really from someone who did not have the great recovery everyone else seems to have had. My advice is to really really research beforehand, get a second opinion and even a third. Also, look into pain management docs. I wish I had known the value of pain management before I had surgery as maybe I could have delayed surgery. Physical therapy too is an option. I mean really good PT that addresses back pain related to scoliosis. I don't know that I would have the surgery again if I had to do it all over again. This is a very serious life changing surgery, and I would try everything you can before committing to it. As for your questions, I did not go back to work for 5 months. I thought I would at 6 weeks, and was highly disappointed that it was not going to be possible. I could drive at around 2 months after decreasing my pain meds. I was on a walker or cane for a good 4 months. And of course there is the very fashionable brace!
I could only lay on my back for the longest time. Laying on my side felt very weird. I was glued and the incision healed up great. My hubby put Mederma on it every day. Now I lay mostly on my sides and it feels completely normal. I still cannot walk very well, very slow and cannot hold myself upright very well. I try to do as much as I can but it gets very tiring so sports is not in my life at the moment. As far as swinging a golf club, I myself couldn't do it. I don't think I would have enough strength in my arms and back and twisting the bod is difficult. I showered soon after surgery, using a shower seat. I blow dried my hair at first it really wore me out, but was worth it. Just sit down really, and then do it. I had to sit down to do everything at first, putting on make up, brush my teeth, etc.
I am better now, but still need to take sit down breaks while getting ready for work in the morning! As far as "intimate encounters", I was scared for a long time. I thought I would hurt my surgery site or break something. Plus I was in alot of pain. Soooo that did not happen for awhile. But happy to report, I did not break myself and am back on track in that dept!!
Sorry for the long post, but I have wanted to let someone know how very life changing this is. I wish you well in your decision process.

[Pooka1]

I don't think anyone would argue that the prime or even only motivation for some folks is cosmesis.

The issue was the implication that they could find a surgeon who would operate solely for that reason and blithely commit malpractice.

This is misleading in the extreme at least in wording if not in intention. There is enough bad information floating around... we don't need more.