New here. Terrified about surgery!

[pilar]

Hello everyone!,
This is an incredible forum I'm sooo glad I found it!:)
This is my story: Diagnosed with scoliosis at the age 12. Wore a milwaukee for about a year.
Now I'm 30 years old and my scoliosis progressed to 95* thoracic and 70* thora-lumbar.
I have pains now and then, but I can continue my life if I take an Ibuprofen.
I thought It was about a time to check how my back was doing, and I went to see DR. Pashman here in Los angeles. He told me that my curvatures are huge and I need surgery. Open anterior and posterior. Every single person tells me DON'T DO IT. So I have no idea what to do. I need help. I know my spine is very deformed, but the pains are not super great. So If I do this is, It is to correct and to prevent pains in my future. I'm scared because I heard that people have pain after the surgery. So If I don't have great pain right now, and I have pains after I know I'm going to regret it.
My surgery is schedule for sept. 3rd. and I'm thinking of getting a second opinion, but with an almost 100* curve I know what they going to say.
I'm soooo scared.

[LindaRacine]

Hi Pilar...

You're in a tough spot. Assuming that the curves are progressing (most large curves are progressive, but not all), a 95 degree thoracic curve has to be stopped, or it will most likely start causing life threatening problems eventually. Unfortunately, I can guarantee that the surgery is going to cause pain, in the short term. In general, most people curse their decision to have surgery for a few months following surgery. Unfortunately, I can't really find a study that shows outcomes for people such as yourself. You should ask Dr. Pashman to talk about outcome statistics for younger adults with large thoracic curves. My sense, in general, is that far more people don't have long term surgical pain.

Regards,
Linda

[pilar]

Thanks so much for getting back to me, Linda!
I know I'm in a tough spot... That's why I am so hesitant about all these.
If I have pains right after the surgery, that would be fine. But what I am afraid of is to have chronic pains for life due to the surgery. My family and friends say that I don't need it if I don't have problems from it, and obviously deformity is not enough reason for it. I asked Dr. Pashman how is my future and quality of life going to be if I don't get this surgery? And he said "that sooner or later I will need it. That I might as well do it now that I still have my youth going for it..." So I don't know...
People said that I should be skeptical of doctors ( surgerons)because they just want to operate and make $$$$.
I am in a pickle here.
thanks for your reply.
pilar

[Qikdraw]

Pilar,

Welcome to the forum!

Its ok to be scared, I think all of us were scared before surgery, and there is pain, no surgery is without pain. However you have to look at long term as well. Does your dr think this is just going to keep on getting worse? If so the sooner you do the surgery the better.

One thing you might want to do is exercise before surgery. It seems that the better shape you are in before the surgery the easier the recovery. Thats no guarentee, but it seems to help. Exercise after the surgery, is important as well. Most likely you'll go through some physical therapy afterwards to show you what to do, and just keep up with that.

Do you know from where to where along your spine the dr is going to fuse? Thats a determination on long term issues as well. Twenty five years ago I was fused from T1-L4, and I have no neck issues at all, but I do have issues below my rods. I only have a few vertebrae that did all my movement for 25 years and I now have pain issues. I was also never given any exercises to keep up with either, which would have helped, plus my choices of work didn't help. (Standing all day in some jobs with little movement, plus construction. :D ) I don't regret my surgery one bit though.

Do the people who say don't do it actually know anything about the issues though? Its one thing to be well meaning, but if they are uninformed that can be very dangerous. So I'm glad you came here for more answers. This is a great site filled with lots of great info and great people.

Keep asking questions and we'll do our best to answer them. :)

Brad

[LindaRacine]

Hi Pilar...

Most large curves progress at approximately 1-1/2 degrees per year. That's 15 degrees in 10 years, so by the time you're 50, your thoracic curve could realistically be 125 degrees. At that size, your quality of life will probably be pretty grim.

It's not surprising that your thoracic curve doesn't cause pain, but it is a little surprising that your lower curve doesn't. It wouldn't surprise me at all, to find that your lower curve starts causing pain in the next 5-10 years.

I think many of us have had the issue of family and friends telling us to avoid surgeons. I avoided seeking help for a long time because of it. The best way to shut them up might be to get a second opinion. You'll find a list of scoliosis specialists here:

http://srs.execinc.com/edibo/PublicDirectory

Regards,
Linda

[pilar]

Oh my god guys! you have no idea how much I appreciate your replies!
I actually do have pains once in a while and it is all my lower back. My major curve doesn't hurt at all. My doctor actually said that all my movements right now are all lumbar. He also said that it will be the same after the surgery. I don't know yet how many vertebrate are going to be fused. I have my last appointment before surgery with him next week. We are going to go through all that in that appointment. In regards to a second opinion, Yes I will seek a second opinion mostly to ease my family's doubts. I know I have to do it for myself, but I also know that any doctor will tell me to go ahead with the surgery. I notice that people get surgeries when they have a 45* curves, so mine it is obviously a candidate. I do think about the long term effects that's why I consider this surgery. It doesn't hurt now, but I'm afraid of the future. It is hard to make a decision based on what will it happen?
I'm afraid of something going wrong during surgery (you know, all the risks) associated with it. I don't know if it is worth it, especially because I don't have major problems right now.
Thanks.
P.

[JenniferG]

Hi Pilar and welcome to the forum. Most of us felt the same way as you, pre-surgery, scared and confused. This forum will be a great help as there are many here with lots of knowledge and experience to offer.

Brad has a good point. "Do the people who say don't do it actually know anything about the issues though?" I had the same thing. People who knew nothing about scoliosis told me to avoid the knife at all cost. Surgeons just want to make big $$$. The pain is not worth it (from a nurse who had orthopedic experience in the 80s) and it won't prevent problems in the future.

I'm glad that in the end, I listened to my surgeon! My curve barely changed from age 13 - 50 but then it took off. I had a 66 degree curve in June last year and by surgery time, March this year, it had increased to 68. So I could see where it was headed.

The pain is usually temporary. The younger you are when you have the surgery, the easier the recovery, or so I am told. My surgeon also told me that those who have little or no pain, tend to have a better outcome. Like you, I did not have a lot of pain prior to surgery and since I came home from hospital, I've had almost no pain and am doing fine. (Just try to avoid withdrawals from meds, if at all possible!)

Good luck!

[debbei]

Pilar,

I had surgery at 46 yrs old, when both my curves were 66 degrees. I only started having bad lower back pain in the last year prior to my surgery. Before that, I felt like you--I could manage taking motrin once in a while. I totally understand your fears, I had them too. No one can promise you what results surgery will bring, but in my case, the short term pain wasn't as bad as I thought. I imagined much much worse for a longer period of time. In my case I was off pain meds a little after 2.5 months.

The people who say DON'T DO IT usually are just horrified at the thought of this surgery, and don't know anything about your condition. They don't know that if you do nothing and progress as Linda described you could be in bad shape in your early 40's. I promise that eventually, SOME, if not all, of your friends and family will come around as you get yourself educated, and then educate them. I was so upset when I finally made the decision to have surgery, started telling friends and I got that reaction. It really did hit me like a ton of bricks. Now, the same people are amazed at how well I function not even 8 months after surgery.

Good luck in your decision making process. I know it's tough. Ask all the questions you think of here--it really helps.

[pilar]

Thanks so much for your words!:)
It is so comforting to know that someone out there understand my feelings.
My family and friends can see that I need surgery, but they are terrified of the thought of me going through some king of risk.
The decision is mine and only mine. I'm not afraid of the post-op at all, I know that they will be working on my muscles and spine, therefore, it will be some pain. I'm fine with that and I will deal with it. I'm just very very scared of paralysis or any other complications. I try not to think about the negative aspects, but it makes me so nervous.
It is hard to imagine myself without this deformity because I have been living with this since I was little girl.
I would like to know if anyone out there had a major curve like me (95* T and 70* TC)? and what was the outcome of the surgery?
Thanks thanks thanks
P.:o

[Qikdraw]

Thanks so much for your words!:)
It is so comforting to know that someone out there understand my feelings.

No matter how sympathetic friends and family are they never really know how it is. I know I am sooo glad I found this forum, even thou surgery was so long ago for me. Its nice to be able to share issues and feelings and laugh at some of the silly stuff.


It is hard to imagine myself without this deformity because I have been living with this since I was little girl.

You'll get over it. :D (and it will be a good thing) One thing you might want to do is before surgery have a picture taken of your bare back, and then one after surgery. Its a good reference point to see how much you have been straightened out. I've seen many pictures like that here and I wish I had one from when I was younger.


I would like to know if anyone out there had a major curve like me (95* T and 70* TC)? and what was the outcome of the surgery?
Thanks thanks thanks
P.:o

Well if you click on my link at the bottom of my post you'll find my pre and post op xrays. My preop xray is in brace, so not as curved over as I would be naturally. I don't know what my individual curves were exactly, but 110 and 115 degrees were talked about. As I've said previously I have no problems with having had my surgery. :D I needed it in a large way.

[LindaRacine]

Hi Pilar....

I think if you break the decision down to the elements, it's not quite as daunting. Here's a start for you:

Progression: If your curve has progressed at least 10 degrees in the last 5-7 years, it will almost certainly continue. If your curves have progressed, you will eventually be faced with the decision of surgery vs. total disability or even death. And, at some point, even if you don't have pain, you will probably start losing function. Also, progression can cause problems that might make you a poor surgical candidate.

Pain: While you don't have pain now, there's a high likelihood that you will have pain in the next 5-10 years. While you might be able to find an alternative that allows you to control the pain, it's not likely you'll stop the progression.

Timing: While there's no emergency, surgery at 30 is expected to be much easier than surgery at 40 or 50. And, if your curves are progressing, you can expect that you will get less correction if you wait 10 years to undergo surgery. There are other things to think about in terms of timing. For example, do you want to have children in the future? Do you have small children at home? Do you have someone who can help you for a few weeks when you come home from the hospital? Do you have good insurance today? Is there a chance that your insurance plan could be worse in the future?

Negatives: There's a long risk of potential complications. Complications can range from simple things like a loose screw, to severe complications including death. There's a possibility that the surgery will create pain that could be permanent. Anecdotally, adults who don't have pain going into surgery are generally less happy with their outcomes than those with a lot of pain.

Hope this helps.

Regards,
Linda

[RitaR]

Hello fellow Milwaukee brace wearer. Wasn't that fun? NOT! Although, I have to admit it was just something I did - I never thought of it as an optional thing I guess. Fortunately I grew up in a small town,althogh I was always self-conscious and still am to this day with my curve and how it makes us look.
I understand your worrisome state. You are one of the few people I have run across that actually has a higher numbered curve than me. All my doctor would tell me is that it's 80+ and I need surgery and if it hurts as bad as I say I need to be seeing a surgeon soon.
Hang in there - we brace wearers have to stick together.
I'm awaiting my first appt with Dr. Lenke in St. Louis in August. OMG that is a long time away!
And, if the outcome from surgery is better for those of us who are in pain - I'm got that covered!!! ;)

[Doodles]

I have to agree with all of the posters above. I had to wait 6 months for my surgery and it gave me lots of time to prepare but also time to drive myself crazy with worry. I think that is very natural. I had sworn for 40 years I would never have surgery. I just kept progressing and by the last year and a half it was moving really rapidly. I was becoming totally scrunched down. By the time I had surgery I was at 91 and 62. So pretty close to yours.
As bad as mine was I had managed through how I dressed, exercise and chiro, etc. etc. to keep mine looking not too bad. Many thought I was crazy too since they said I can't see any problem. Without a top they would see it big time. Yes, the pain kept increasing and due to the degree of progression my long-term prognosis looked pretty bleak.
Also I agree with Brad on the exercise. I had always done lots of it anyway, but I ramped it way up to 1-1 and a half hours a day. I think that does help the healing process.
It's a tough surgery, no doubt about it. However, I decided the year plus of recovery was worth having lots more years where I could actually be out of pain and not be a crumpled old lady. I'm 10 weeks out from surgery and I'm almost 2 inches taller and look much straighter. I have sort of a leaning issue to the left which I hope will adjust eventually but my overall look is so much better. Good luck with all of this!! Janet

[CHRIS WBS]

I would like to know if anyone out there had a major curve like me (95* T and 70* TC)? and what was the outcome of the surgery?

Pilar,

Have you checked out Dr. Pashman’s website that shows some patient outcomes? http://espine.com/adult-scoliosis-cases.htm Also, if you type his name in the search engine here, you will find some members who had surgery by him and were quite pleased with their outcomes.

[pilar]

Thanks everyone for your input!
I have my last appointment with Dr. Pashman this coming tuesday and I have lots of questions for him already. I hope I don't forget anything.:confused:
P

[Qikdraw]

Thanks everyone for your input!
I have my last appointment with Dr. Pashman this coming tuesday and I have lots of questions for him already. I hope I don't forget anything.:confused:
P

Write them down on a sheet of paper and bring it with you. You're going through enough stress so you don't need to pile more on yourself thinking you're going to forget something. :)

I hope your appointment goes well.

Brad

[pilar]

I have to agree with all of the posters above. I had to wait 6 months for my surgery and it gave me lots of time to prepare but also time to drive myself crazy with worry. I think that is very natural. I had sworn for 40 years I would never have surgery. I just kept progressing and by the last year and a half it was moving really rapidly. I was becoming totally scrunched down. By the time I had surgery I was at 91 and 62. So pretty close to yours.
As bad as mine was I had managed through how I dressed, exercise and chiro, etc. etc. to keep mine looking not too bad. Many thought I was crazy too since they said I can't see any problem. Without a top they would see it big time. Yes, the pain kept increasing and due to the degree of progression my long-term prognosis looked pretty bleak.
Also I agree with Brad on the exercise. I had always done lots of it anyway, but I ramped it way up to 1-1 and a half hours a day. I think that does help the healing process.
It's a tough surgery, no doubt about it. However, I decided the year plus of recovery was worth having lots more years where I could actually be out of pain and not be a crumpled old lady. I'm 10 weeks out from surgery and I'm almost 2 inches taller and look much straighter. I have sort of a leaning issue to the left which I hope will adjust eventually but my overall look is so much better. Good luck with all of this!! Janet

Hi Janet!
10 weeks out of surgery! wow good for you! how are you feeling? Is your post-op painful? Do you notice a lot of difference in your body? And if you don't mind asking... what was your degree of correction?
Thanks.
Pilar:p

[Jimbo]

Oh wow, with curves like that I would get surgery as soon as possible!!

[Doodles]

Pilar--
Post-op pain does gradually get better. After the 2 weeks in hospital/rehab I came home and thought I was doing quite well. I guess at night I did lots of moaning and groaning for awhile--probably the oxycontin. That and percocet I was off about 4 weeks ago I think. That wasn't a problem. Since then tried around Memorial Day to go off Hydrocodone 7.5--2 every 4 hours-- a little but it was too soon and really seemed to set me back. Just started yesterday to try to cut back gradually. Just eliminated a half tab during the night. Sounds silly but I'm worried now to try more than that after reading some of the problems here. So we will do that for a few days and then try more. I also take 3 baclofen a day--muscle relaxers.
The "pain" now is a lot more extreme fatigue of my back after sitting too long and aches and soreness that demand getting flat on the bed. If I do very much I pay for it! I occasionally get rather quick spurts of pain in certain areas but it definitely is not continuous.
My overall stance is so much better as my husband says. I'm almost 2 inches taller so I've been stretched out from my old scrunched self. I had a lot of rotation in ribs etc. and that is definitely better than it was. Left shoulder blade is now more prominent than the right but still is much better than before. I have a lean to the left now that I will ask about at my June 24th appt. I'm hoping that will right itself. I don't know my degree of correction although Dr. Lenke said after surgery that he thought he got a very good correction. I'll probably find that out at the appt. Hope this helps. Janet

[loves to skate]

Thanks everyone for your input!
I have my last appointment with Dr. Pashman this coming tuesday and I have lots of questions for him already. I hope I don't forget anything.:confused:
P
Write your questions down or you will forget. Good luck, Sally

Oops, I guess I missed a page. You already have been given this advice. Sorry

[pilar]

Thanks to all for your advice!
My appointment is on tuesday, so I'm preparing myself for it. Lots of questions. My back actually hurts today, so I can not wait to see him!
I have a lots of concerns about this and I hope he will ease my mind. I also quit smoking about a month ago and I smoked for a lot of years... ( my bad I know :mad:). I'm wondering how is that going to affect me if I have this surgery in three months? any adults there that went through the same thing? My Dr. didn't seem to care that much the first time he asked me.

[jrnyc]

dear pilar
i too am awaiting surgery, planning for november, but keep changing my mind...i have an upper 40 degree curve, which we will ignore, as pain is relieved with botox shots.. and a lower 60 degree, which we will address...doctor says i must have front and back incisions, and a "cage" to anchor rods to my hips...it's that last part that terrifies me...but i know it is needed to "stabilize" the rods....
i wish you luck and will say a prayer for your healing once the surgery is done...and for strength and courage to go thru with it...

best always
jrnyc(jess)

[pilar]

Hi jess,
I just came back from my appointment with my Doc and I found that that I'll be fused from T2 to my pelvis as well. I'm soo scared. I feel like I will not going to be able to move ever again. It sucks! good thing is that I really like my doctor and I trust his judgment. I have major curves, so it does make sense the fusion. my curves are 70* 90* 50*
My boyfriend doesn't want me to do it since I don't have major pains right now. He thinks that I will hurt myself with this surgery. I just very afraid that he is right.:(
P.

[JenniferG]

Nor did I have major pain from my scoliosis. My surgeon told me that those with little or no pain tend to have better outcomes, so I hope this helps with your nerves. (I'm very happy with my outcome.)

[asccbodypro]

Pilar,

Sorry to hear your curves are so bad. As you probably already know, they will only get worse and at some point it will compromise your health and you don't want to wait until that point. I wore a brace as a kid and was fine until 5 years ago and spent the past 5 years in major pain and my quality of life revolved around my back. I finally had my surgery about 8 weeks ago. It's hard to go through. I think everyone here will tell you that but before you know it your able to do a little bit more each day. Even though I have pain from surgery and healing, I do not have the same pain that I had prior to surgery. Just make sure you ask as many questions as you can and find a surgeon that you TRUST and takes the time with you that you need. Good luck, I wish you all the best in making your decision. It took me a long time to make mine but my curves were no where near as bad as yours! Take care!!!!

[curvycakes]

Hi Pilar. I was diagnosed about the same time you were with a 45 degree thoracic curve and I was told that surgery was my only option. I didn't have any pain at the time and it wasn't a big deal to me so I looked at other options (bracing, chiropractic) for treatment. I am 19 now and while those options may have helped a little, they did not do much. Now I am almost 73 degrees thoracic and I have realized that surgery really is the only thing that can fix this curve! I'm glad I'm getting the procedure done (this Thursday!) but I sort of wish I had really evaluated my options when I was younger...I might have been able to get better correction and I would have gotten it out of the way rather than having to change my college summer plans to fit the surgery in. Also, try not to pay TOO much attention to people who tell you that surgery is not an option. Everyone may be telling you not to have surgery, but do they have to live with your curve? No. Basically, you need to make the final decision, take some time and think for yourself. If something in your gut feels right, you should trust it.
So anyway, just realize that this surgery will really have an effect on your future. In my case, I may have realized this later than I would have liked. Best of luck deciding--I'm here if you'd like to talk!

[pilar]

Thanks curvycakes!
you are still very young and flexible (19). I'm on the other hand, 30 years old. And I wish I would have made this decision at your age. I probably would have has around the same curvature that you have right now. You will have a very good correction right now. My curves are kind of stiff, so I don't know how much correction I will get. I just hope that for my 90* I will get a good 40's correction. One can only hope. I also will get thorascopy on my rib hump, so at least I am going to look decent. My only worry right now is my insurance. Who knows if they going to approve it. I have insurance from my school so it is not the best. I guess I have to just wait now and see what happens. All this waiting and deciding is killing me though...

[LindaRacine]

dear pilar
i too am awaiting surgery, planning for november, but keep changing my mind...i have an upper 40 degree curve, which we will ignore, as pain is relieved with botox shots.. and a lower 60 degree, which we will address...doctor says i must have front and back incisions, and a "cage" to anchor rods to my hips...it's that last part that terrifies me...but i know it is needed to "stabilize" the rods....
i wish you luck and will say a prayer for your healing once the surgery is done...and for strength and courage to go thru with it...

best always
jrnyc(jess)
Hi Jess...

I think you may be confused about what will be done in surgery. The hips aren't involved in scoliosis surgery. I suspect that the rods will go down to the pelvis, with a cage or cages in the front of some part of the lumbar spine to replace a disc or discs.

Here's an xray that shows both iliac bolts and cages:

http://groups.yahoo.com/group/Flatback_Revised/photos/album/1583237744/pic/957308770/view?picmode=&mode=tn&order=ordinal&start=1&count=20&dir=asc

This is a person who had multiple surgeries, so there's more implants than you'll have, but I wanted you to see the cages (the 2 mesh things in the middle at the bottom, and the iliac bolts, which are the 2 long bolts at the very bottom.

Hope that helps.

Regards,
Linda

[jrnyc]

dear linda
thank you so much for the clarification, and for your help...i have a better idea of where the metal will go...still pretty scary, tho...

thanks again
jess(jrnyc):eek: