Hey everyone, it's been a while since I've written anything on here, but I have to say I check in at least once a month to get some support from you all.
I am posting today because I am coming up to my yearly evaluation with my Scoli dr. in a few weeks, and I've had the idea of surgery on my mind a lot. I've already had 3 spinal surgeries, all just for one herniated disc at the L2-3. So the prospect of facing another surgery makes me fill kinda ill, especially since I'm at the lowest level of pain I've had since the disc herniated 3 years ago.
BUT....my curves seem to be slowly getting worse every year. I'm at a little over 50 degrees both C&L . When I was diagnosed at 13, I was at around 42 and wore a back brace religiously at night until I stopped growing. The curves stayed at 42 the whole time I wore the brace...stopped wearing it when I stopped growing and went on with my life for about 5 years w/o going to see a scoli dr. Aside from discomfort/mild pain I didn't notice it at all. I'm not sure how long it was before I was remeasured and found out I was at over 50...
It's not a super fast progression, but I can REALLY see a change in my shoulders over the last few years, and I feel very uncomfortable when I'm trying to go to sleep at night. No matter what position I'm laying in, I feel like I'm "caving in"...I don't know if that makes any sense, but I don't know how to explain it. I've also developed quite a strong pain along/underneath my left shoulder blade, which I've never had before. All my pain has been concentrated in my lower back until recently. If I sleep even a little funny I will wake up with very bad pain that lasts all day, to the point where it hurts if I look down or turn my head too quickly.
Anyway, I LOVE my dr, but last time I was there (I think in April) he said he was really glad we didn't do the whole surgery, since I was having such good results from a one level fusion. BUT then he said, "But if you need the surgery in 10 years, we'll do it then..." His basic feeling is that you shouldn't have the surgery until you NEED it. But that's easy for him to say! I don't know that in 10 years I'll feel like dropping everything in my life to recover from a difficult surgery.
blech. I just feel like it's hanging over me. My husband and I really want kids, but I'm scared of getting pregnant and having my curves get a lot worse and then having to have the surgery PLUS take care of a small child.
Right now I'm not able to work because of my pain, and since I don't have children yet, my feeling is I'd rather just go ahead and get it over with. He said usually once the curves progress to 50+ they get worse one degree or more a year...so at that rate I'll be having the surgery when I'm 38. And that's if it doesn't get worse faster...
For those of you who have had it, what is your take? Did you wish you had it when you were younger, or did you feel you should've waited?
I know its a super tough recovery and I've done TONS of research on it. I just feel like there is no WIN. You wait and have it when you're older, so recovery is more difficult, and you probably have a family to take care of. Or you have it when your younger, but all the hardware causes problems...
Do any of you get discouraged like that? Mine aren't even that bad, but I feel like it just never ends. I had no idea my scoliosis would affect so much of my life. When I was a kid, they told me it was no big deal, and it would never get worse after I stopped growing.
I'm curious to see if the curves have progressed since my last measurements a year ago.
Anyway, sorry this is so long. I just know you guys can relate, and it's nice to share my problems with people who REALLY know what it's like!
Please share your advice, stories, etc. I'm ALL ears! Thanks!
I am posting today because I am coming up to my yearly evaluation with my Scoli dr. in a few weeks, and I've had the idea of surgery on my mind a lot. I've already had 3 spinal surgeries, all just for one herniated disc at the L2-3. So the prospect of facing another surgery makes me fill kinda ill, especially since I'm at the lowest level of pain I've had since the disc herniated 3 years ago.
BUT....my curves seem to be slowly getting worse every year. I'm at a little over 50 degrees both C&L . When I was diagnosed at 13, I was at around 42 and wore a back brace religiously at night until I stopped growing. The curves stayed at 42 the whole time I wore the brace...stopped wearing it when I stopped growing and went on with my life for about 5 years w/o going to see a scoli dr. Aside from discomfort/mild pain I didn't notice it at all. I'm not sure how long it was before I was remeasured and found out I was at over 50...
It's not a super fast progression, but I can REALLY see a change in my shoulders over the last few years, and I feel very uncomfortable when I'm trying to go to sleep at night. No matter what position I'm laying in, I feel like I'm "caving in"...I don't know if that makes any sense, but I don't know how to explain it. I've also developed quite a strong pain along/underneath my left shoulder blade, which I've never had before. All my pain has been concentrated in my lower back until recently. If I sleep even a little funny I will wake up with very bad pain that lasts all day, to the point where it hurts if I look down or turn my head too quickly.
Anyway, I LOVE my dr, but last time I was there (I think in April) he said he was really glad we didn't do the whole surgery, since I was having such good results from a one level fusion. BUT then he said, "But if you need the surgery in 10 years, we'll do it then..." His basic feeling is that you shouldn't have the surgery until you NEED it. But that's easy for him to say! I don't know that in 10 years I'll feel like dropping everything in my life to recover from a difficult surgery.
blech. I just feel like it's hanging over me. My husband and I really want kids, but I'm scared of getting pregnant and having my curves get a lot worse and then having to have the surgery PLUS take care of a small child.
Right now I'm not able to work because of my pain, and since I don't have children yet, my feeling is I'd rather just go ahead and get it over with. He said usually once the curves progress to 50+ they get worse one degree or more a year...so at that rate I'll be having the surgery when I'm 38. And that's if it doesn't get worse faster...
For those of you who have had it, what is your take? Did you wish you had it when you were younger, or did you feel you should've waited?
I know its a super tough recovery and I've done TONS of research on it. I just feel like there is no WIN. You wait and have it when you're older, so recovery is more difficult, and you probably have a family to take care of. Or you have it when your younger, but all the hardware causes problems...
Do any of you get discouraged like that? Mine aren't even that bad, but I feel like it just never ends. I had no idea my scoliosis would affect so much of my life. When I was a kid, they told me it was no big deal, and it would never get worse after I stopped growing.
I'm curious to see if the curves have progressed since my last measurements a year ago.
Anyway, sorry this is so long. I just know you guys can relate, and it's nice to share my problems with people who REALLY know what it's like!
Please share your advice, stories, etc. I'm ALL ears! Thanks!
Comment