Stuck in the same place

[emily4416]

I got diagnosed two years ago. although my curve is nothing like some of yours, I do suffer from constant, excruciating pain. I've tried medications and therapies. My doctors don't really listen so I'm going somewhere else. I want to have surgery, but I'm not sure if that's best. Without someone having gone through the pain I have, that person can't tell me what best for me. So I was wondering what any of your reasons are for going through with surgery, or not going through with it. I've done my research but nothing compares to first-hand experience.

Top curve: 52
Bottom curve: 48

[debbei]

Hi Emily,

I remember how you feel. When I first found out how far my curves had progressed since the time I got out of my Milwalkee Brace, I just wanted to head for the hills. No way no how was anyone going to perform that 'barberic' surgery on me, as I thought. In the last year or so prior to surgery, my back pain was getting worse and worse, I started having nerve pain down one leg, and basically, my back was getting in the way of me trying to live my life like I wanted to. I was so upset when a 1.5 months prior to surgery, we went away for the weekend, did lots of hiking and shopping. After that first day my lower back was so bad I could hardly lift my leg into the car without tugging on it with my arms. I think that was a sign that I was doing the right thing. All of that presurgical pain is gone now. I'm convinced I did the right thing, even though I still get muscle spasms now and then. From what I understand, that gets better and better over time.

Good luck with your decision. It's a personal decision that no one--not a spouse, siblings, parents or children can make for you. Once I made the decision, I was lucky to have support of my family around me. That's another thing though--sometimes family or friends try to talk you OUT Of it once you have made a decision to go ahead with surgery. They're only wanting the best for you, but bottom line is that they are just not as educated as you will be if/when you make the decision.

Again, good luck to you and ask anything you want.

[Geish]

Well put, excellent advice Deb. You hit the nail right on the head. It is a decision only you can make. And do know that others probably will try to talk you out of surgery if that is the decision you make. Good luck Emily with what ever decision you make.
I made the decision for surgery because my progression was speeding up and I knew I would be losing my excellent insurance coverage after I divorced. I could have waited maybe 3 more years for the surgery, but then I wouldn't have been able to afford the surgery and my correction probably wouldn't have been as good, nor my recovery as easy as it was.
Again, I wish you well on your journey.
Geish

[momw/scoli]

Hi Emily! My daughters name is Emily too! She has almost the exact same curves as you only her bottom was 43 and top 50. We went ahead with the surgery because we were afraid her lumbar would catch up with the top and she would need a longer fusion. She was also in a lot of pain. They only fused her top curve (T1 to T11) and in one month her lumbar curve went down to 25. Would we do it again? Yes! The first two weeks were horrible but now she feels great! I have to keep reminding her to not do things! Her shoulders are a little crooked now because she also had a top c curve of 30. I think she looks straighter everyday. I wish you the best! How old are you? My Emily is 14.

Becky Boston braced 1 year. Curves T27 and L32. Still holding!
mom to Brandon(17) totally straight
Emily (14) T50 and L 43 (had surgery 5-28-09)
Callie (11) T16 and L13 (Getting a providence brace 7-24 because of family history. Here we go again! Risser 0)

[LindaRacine]

I got diagnosed two years ago. although my curve is nothing like some of yours, I do suffer from constant, excruciating pain. I've tried medications and therapies. My doctors don't really listen so I'm going somewhere else. I want to have surgery, but I'm not sure if that's best. Without someone having gone through the pain I have, that person can't tell me what best for me. So I was wondering what any of your reasons are for going through with surgery, or not going through with it. I've done my research but nothing compares to first-hand experience.

Top curve: 52
Bottom curve: 48
Hi Emily...

It sounds like you might be going to the wrong doctors. Or, the doctors might be picking up on something that makes them think that surgery won't help. I think that a conservative specialist is a good specialist. If a surgeon thinks that surgery won't help, it's at least something to consider.

I'd like to encourage you to start thinking about the specifics of your pain (where?, when?, can you do things to create or alleviate the pain?, etc). When we're able to be specific about describing pain, it can tell a good scoliosis specialist why we're having pain (and whether surgery might help). Also, you need to find a good specialist. You'll find a list here:

http://www.srs.org/find/

Good luck.

Regards,
Linda

[Qikdraw]

Welcome to the boards Emily!

You mentioned treatments you have had, what kind of treatments have you tried so far? There is a fair amount of things to look at, we just need to help you figure out what is right for you. :)

As for reasons why I had the surgery, well I was 12 when I had mine, so the decision was not really mine to make, but it was the right one. For me my curve was so severe it had to be done, it was literally life threatening. So thats my reason. :D

Brad

[Singer]

Hi Emily,

I agree that you need to see someone who specializes in adult scoliosis before you can make an informed decision about your back. In my case, I was initially told to give physical therapy a try, which I did, and it was somewhat helpful -- but all indications were that my severe curve would continue to progress. I was told (by two different specialists) that eventually I would have to do something surgically about my curve if I did not want to deal with debilitating problems as I aged.

Each case is very individual, and no one can generalize for you what you should or should not do. This surgery is huge and it really needs to be thought through. Good luck!

[JenniferG]

My reason for surgery was that I was losing height so my GP sent me for bone density scans and xrays and when she saw them, she said, "My goodness Jennifer. You have the most interesting spine I've ever seen". She then wrote me a referral to Dr. Askin. Because of my age he suggested it should be done within 12 months. It was then a matter of getting over the shock of discovering I needed this surgery, when I had no idea things were so bad, and waiting for my surgery date. My first one I chickened out, but I was more than ready for my second date and have absolutely no regrets.

I had a couple of people try to talk me out of it, one of whom had orthopedic surgical experience many years ago and hadn't realised how far the surgery had come since those days. Now, everyone's seen the difference it made and thinks it's amazing.

[emily4416]

I'm not very computer savvy. And I haven't really figured my way around the site yet, so I'm just replying to all of you here, hope that's okay.

Debbe- Thank you so much for all your feedback. It's SUCH a relief to finally have people who get it.

Momw/scoli- I'm 18 :) It's cool your daughter has the same name!

Linda- I think what bothers me most about the two specialists I've had is that they don't give me the time of day. I try to tell them, and they don't listen. My office visits are legit less than five minutes long. I'm going to the Mayo Clinic in Minnesota to see a scoliosis specialist there, and I'm really looking forward to just moving forward. Thanks so much for the list too, so considerate!

Brad- Treatments I've had included physical therapy, oral medications (muscle relaxors and anti-inflammatories), an inversion table, and spinal injections. I've tried stretches for pain relief, ice/heat...it's just all to nothing. The pain is honestly excruciating...and I don't know what else to do. I know there are a lot of other things to try before surgery, but my scoliosis is effecting me in about every area of my life; from how long I can sit (meaning avoiding movie theaters and road trips), to how long I can stand (avoiding concerts). Sitting doesn't help, laying down doesn't help. It's just frustrating...no matter what I do.

I know there are a lot of you that have had it worse, and I don't want to sound like I'm making something out of something little. I'm just starting to notice things about myself. My shoulder is higher on one side, my back sticks out on the left, my waist coming in at different angles, I'm pigeon-toed in my left foot...the list goes on. It just makes it impossible for me to look in the mirror and feel good, ya know? I just want some relief. Anything.

[Qikdraw]

Emily,

I know one doctor in Minneapolis at the Twin Cities Spine Center, Dr. Ensor Transfeld. He was training under Dr. Bradford at the time. I liked him. So if your time at the Mayo Clinic isn't to your liking, you might try him out.

Don't worry about comparing curves and what bothers you, each of us is different, and we each have our own issues that are completely valid. I never had pain before surgery and if you look at my preop xray its pretty extreme, my problem was breathing, I just very quickly ran out of breath. So you're not making something out of something little. You have valid issues and never feel that they are less important than someone else's, they are your issues after all.

A couple of suggestions for laying down, if I may... Have you tried sleeping on a couch? With your spine up against the back of the couch (laying on your side) with a pillow between your knees (and under your head of course)? Or in bed using pillows between your knees and behind your back while laying on your side? Do you have a memory foam mattress topper? A lot of us use that, and until I got one I was never, ever, able to actually lay on my back for any length of time. Memory foam mattress topper is heavenly, and they are pretty cheap too. I have a 3" topper.

As for spinal injections, yeah they didn't work for me either. My wife gives me a massage about 2 times a week which does help as I get lots of knots in my back. I guide her to where the knots are and she takes care of them. :) Do you have anyone that can try that out with you? For some it helps, for some it doesn't.

Keep up with asking questions, thats what we are here for, to help each other out with what ever knowledge we have and to offer support. :)

Brad

[emily4416]

Thanks Brad, I appreciate that. I never thought about a mattress pad! That's something I'm going to try. I've slept with a pillow between my knees before, but I never thought about the couch either. That could help. My boyfriend tries to help with knots I get and such, and it helped temporarily, so I'm thankful for that. Thanks a lot for the suggestions, I'm really going to try them out. I'll let you know how it goes :)

[Qikdraw]

Thanks Brad, I appreciate that. I never thought about a mattress pad! That's something I'm going to try. I've slept with a pillow between my knees before, but I never thought about the couch either. That could help. My boyfriend tries to help with knots I get and such, and it helped temporarily, so I'm thankful for that. Thanks a lot for the suggestions, I'm really going to try them out. I'll let you know how it goes :)

Until I got a memory foam mattress pad my best sleeps were on the couch. Just being able to rest up against the back can be so nice. :) You may have to figure out which side is better, or even which couch is better. Sometimes I take a small towel and press into the small of my back up against the couch as well. It just depends on how my back is feeling that day.

Well a massage is only temporary, which is why my wife usually does it twice a week. I get knots fast! :D So you might want to set regular days to have your boyfriend massage you, and see how that goes. Men usually like an excuse to touch their girlfriends, so I don't think he'll object too much. :D

You're welcome for the suggestions, I hope they work for you. Remember keep asking questions and keep pouring through the forums, there is a ton of info here! :)

Brad

[MichelleK]

"Men usually like an excuse to touch their girlfriends, so I don't think he'll object too much. "

Ha! Ha! Just had to laugh because that must be true! My husband will massage my back every night!! It really helps, he says I have him trained well!

[Qikdraw]

"Men usually like an excuse to touch their girlfriends, so I don't think he'll object too much. "

Ha! Ha! Just had to laugh because that must be true! My husband will massage my back every night!! It really helps, he says I have him trained well!

LOL

Well I guess I must have my wife trained well then too! Actually she's really a gem, she's read books on massage techniques and even got a few dvds. They have helped her improve quite a bit. She's not up to a properly trained masseuse yet, but she wants to take courses as well. The other benefit to have a spouse massage you is what that can segueway into. :D

[Lorraine 1966]

Quikdraw you and I are or appear to be very similar with our problems, our operations were different but I can understand the pain you are having and love the idea of a memory foam mattress topper, and also I hadn't figured out the pillow thing until you wrote about it, so simple yet so effective.

Thank you so much for your input, you never know who you are helping on this forum eh!

Emily, please come to this forum with any questions you are having, I am so very glad you have found it. No question on your part dear will ever be unimportant to any of us here. I am so sorry you are in so much pain, you are in my thoughts.

Lorraine.

[emily4416]

WOAH Brad. Woah. Haha interesting. True, boys always like excuses for that. Haha that was funny. That's really sweet of your wife to do all of that, with dvds and such. Good for you two :)

[MichelleK]

LOL

Well I guess I must have my wife trained well then too! Actually she's really a gem, she's read books on massage techniques and even got a few dvds. They have helped her improve quite a bit. She's not up to a properly trained masseuse yet, but she wants to take courses as well. The other benefit to have a spouse massage you is what that can segueway into. :D

OMG! You men are ALL ALIKE! Hehe

[Qikdraw]

Quikdraw you and I are or appear to be very similar with our problems, our operations were different but I can understand the pain you are having and love the idea of a memory foam mattress topper, and also I hadn't figured out the pillow thing until you wrote about it, so simple yet so effective.

Thank you so much for your input, you never know who you are helping on this forum eh!


Lorraine,

You're welcome. Glad I could help, but actually I'm just passing on info I got here about a memory foam topper. :D If you do a search you'll find a few topics about them and which ones are better, some are cooler than others, etc...

WOAH Brad. Woah. Haha interesting. True, boys always like excuses for that. Haha that was funny. That's really sweet of your wife to do all of that, with dvds and such. Good for you two :)

Emily,

Glad I can make ya laugh. :D Yes my wife is a special woman. If it weren't for her I'd be in a lot more pain. Its been a bad back week for me this week too, so she's actually massaged me 3 nights in a row, and I still have knots. :eek:

OMG! You men are ALL ALIKE! Hehe

Michelle,

Well it takes two to tango. :eek: :D (so no playing the innocent female :p)

Brad

[MichelleK]

Lorraine,

You're welcome. Glad I could help, but actually I'm just passing on info I got here about a memory foam topper. :D If you do a search you'll find a few topics about them and which ones are better, some are cooler than others, etc...



Emily,

Glad I can make ya laugh. :D Yes my wife is a special woman. If it weren't for her I'd be in a lot more pain. Its been a bad back week for me this week too, so she's actually massaged me 3 nights in a row, and I still have knots. :eek:



Michelle,

Well it takes two to tango. :eek: :D (so no playing the innocent female :p)

Brad

ok, ok, you got me : )

[Writer]

Emily, what area of the country are you located in?

[emily4416]

writer- united states

brad-yeah..it's been a really bad back week for me too. yesterday was a really rough day. i spend the whole day in tears basically. i'm on my dad's insurance and i don't get to choose my treatment basically. so i feel like a sitting duck. and in the meantime, my hips are in different places...and i'm scared about the future repercussions of waiting, and of it getting worse.

[mamamax]

Hi Emily - sorry you're having a rough go of it right now. Been there also. There are some things that may help. Are you familiar with Schroth? If not, you may want to check out the links Writer provided FoundHere. Some folks (like myself) are using Spinecor with much success too. Maybe some Physical Therapy would also prove helpful. Hoping you feel better soon!

[RitaR]

I can feel for you with your pain - I have excruciating pain most days. By evening time I just want to go to bed. I have an 80+ degree curve and my appt isn't until Aug 19th. That seems like a long time, but I've been waiting three months now, so almost there. Along with the bad back pain, I hae this numbness and tingling that goes around from the back to the front, sorta like a muscle spasm I guess. It's really intermittent, mostlly when the pain is real bad. But, when the spasm hits I can just barely walk or move until it passes. I didn't know if anyone else had experienced syuch a thing. When I went to my orthopedic guy he told me "you're not experiencing the numbness, tingling, etc. around the side to the front, are you? Well, then, we need to get you to see Dr. Lenke, especially with a curve like that and that much pain." Gees, nothing like worrying a girl...

[emily4416]

yeah i totally get that. i just want to have control over my own back. today i tried to go shopping with some out of town friends. and i couldn't. after an hour i had to leave because the pain got so bad. and then tonight i tried to see and movie that was an hour and a half long. i couldn't do that either. yet my parents want to "hold off". they're just content to move slow. and when i try making plans myself they get ruined because my dad switches insurances. and now i can't. ahhhh