Scared and more scared

[jeneemohler]

Jess, I really feel for you, and any others out there in the same place. You have been just trying to balance the reality of your situation, with the uncertainty of an imagined outcome. You wonder if surgery will help you, or if your particular case may be one of those few that don't turn out so well. It is really tough. Sometimes is seems like the evil you know is more tolerable than the evil you DON'T know. I always felt more comfortable living with the pain that I knew and could deal with, rather than risking something worse. I agonized for years and totally understand.

I can't and won't tell you what to do, but I WILL say that when the time comes, I truly believe that you will know it in your gut. This goes for all of you in the pre-op stage. Something just pushes you over the edge. And when you know in your heart that it is finally time to do it, the agonizing just goes away and peace and acceptance follows. It was almost a sort of relief for me, no longer having to worry about whether I should do it or not... Uncertainty drives you insane....

And now look at me!!!!! No regrets at all. (Other than waiting a year too long) Life goes on, and goes on with a better quality of life than before.

The best of wishes to ALL of you during this time of wrestling with the decision.

[jrnyc]

hi jenee
thank you for such a thoughtful reply...and such kindness...
everything you said is so true, and anyone on forum who is pre surgery or
considering surgery, recognizes the feelings....

thanks for the empathy...much appreciated!

jess

[paula]

I haven't got time to read the whole thread, but one of the best things I did before surgery was finding a psychologist and discussing my fears with her. Oddly enough, she turned out to have a daughter who had just been diagnosed with scoliosis, so it was an education for her too. She helped me clarify my thoughts, and decide which alternative was best-- in the end I did go with surgery and was remarkably calm leading up to it. I also went on an anti=anxiety medication and would do so again in an instant.

[JenniferG]

I agree with Paula about the anti-anxiety meds. I am surprised more don't use it. Almost all of us are scared witless about this surgery and for me, it just calmed me down, enabled me to sleep which in turn enabled me to think rationally about the situation. I have to say that exercising had the same affect, but not everyone can exercise to that degree.

[Confusedmom]

Hi there,

I was 55 degrees at age 30 and now about 80 degrees at age 39. I was in the same boat back then--didn't want to have surgery, not in pain, hadn't had my kids yet, etc. Now I've had my kids, still don't have much pain, but my back is a heck of a lot worse! The surgery is going to be long and complicated -- I will be fused T3 or 4 to sacrum. Still, I'm glad I waited, because I will have had a decade without much pain and without complications. I pretty much have to have the surgery now, as my curve is so big and progressing rapidly, plus I did have a bout of leg pain this spring. Unfortunately, the questions about complications never go away, so I am still just as scared as I was. But it does make a difference feeling like you have to have the surgery, vs. maybe it would be a good idea.

Best of luck to you in your decision!

Evelyn

[patty22]

wow. I didn't think my ranting of how scared I was would illicit such a response! Thank you everyone for posting. Reading all of your opinions and talking about all those issues really gave me a lot to think about.

Confusedmom - your post really hit me. I am really leaning towards getting this taken care of sooner rather than later. And although we never know what will happen (my #1 fear is long term complications, more surgeries, etc.), I don't want my curves to progress to the point of no return! And I wouldn't mind the greater degree of correction (I've got to stay positive!).

I have a second opinon consult with Dr. Hey in Raleigh, NC. I've seen his name pop up several times on this forum and he's not too far away from Charleston. We'll see what he says.

Thanks everyone!

[Doreen1]

Hi Patty,

I was just reading through some older posts yesterday and several people did not have good things to say about Dr. Hey. You can do a search on his name (upper right corner of your screen) to see comments.

Warmly,
Doreen

[patty22]

Hi Doreen,

I've searched his name quite a few times and didn't see anything negative. Can you point me to the threads that you see that? You can private message me if you want.

Thanks!

[scooter950]

lots of wisdom shared here..

wow this is a great discussion, and JeneeMohler -- "Sometimes is seems like the evil you know is more tolerable than the evil you DON'T know.' your quote is so appropriate for me! at least I sort of know what to expect with my current pain level ... but post-op? WITHOUT nsaidS? UGH! don't even want to imagine!

And also- words of wisdom from Australia- two of you recommended anti-anxiety meds. right on!
I have been prescribed Valium for muscle spasms, but I don't take it; think i only took valium for the MRI's. Well since deciding / "knowing" it's time to do this-- I have been unable to sleep, I've had diarrhea ( from nerves) so I took a valium- I'm still lucid, not drugged up at all, but at least I can sleep. better living thru chemistry!

I was just saying something similar to my husband on our drive home yesterday: with all my surgeries, the anesthesiologist no longer gives you something to take the edge off your nerves. I rememebr laying on the OR table, after moving myself over, and they were talking, setting up the room, etc.. seemingly forgetting about me- I was sort of abrupt and I asked "could you PLEASE give me something here?? please?"" and then he gave me something IV ... but really, why do they wait so darn long???? hello? this is nerve wracking, I've made the decision, now please help me! at least sedate me!

OK didn't mean to rant, I've had several GYN / abdominal surgeries as well., with good & bad experiences.

anyway: good advice in this thread! Jess, i'm still questioning my decision - but as has been said on this forum before: not doing anything IS a decision. your body will fuse- in the current crooked position, or the surgeon will speed the fusion thru surgery and try to correct the position as muich as possible. But with each year, your spine IS fusing already. slowly and painfully. This is why I want to get this over with already. My neck is fusing, my spine is fusing, there are arthritic changes- enough! I am declaring mutiny on my body. we're gonna do this MY way. for better or worse. with God's help

[BendyBill]

As many people have already stated: this is a hugely helpful thread and thank you to all involved. Evelyn, your post has solidified my decision to go ahead with surgery. I'm currently at a 60* curve which has progressed 15* in the past 3 or so years but, like you, have no pain. However, I can't bear the thought of it progressing to 70, 80, 90* in the next 10 years and the complications this might cause to the surgery I will almost certainly have to have. On top of that, my feeling of wonkiness and the bouts of discomfort are more regular than before so, at this rate, I might not have 10 more years of minimal discomfort.

Jess, I hope you find the answers you need. My thoughts are with you.

Best wishes to all,

B

[jrnyc]

thanks, Billy...
congratulations on making a decision....
best of luck with the surgery...

jess

[debbei]

As many people have already stated: this is a hugely helpful thread and thank you to all involved. Evelyn, your post has solidified my decision to go ahead with surgery. I'm currently at a 60* curve which has progressed 15* in the past 3 or so years but, like you, have no pain. However, I can't bear the thought of it progressing to 70, 80, 90* in the next 10 years and the complications this might cause to the surgery I will almost certainly have to have. On top of that, my feeling of wonkiness and the bouts of discomfort are more regular than before so, at this rate, I might not have 10 more years of minimal discomfort.

Jess, I hope you find the answers you need. My thoughts are with you.

Best wishes to all,

B

Billy,

With me, I found that once I had surgery scheduled, I had more of a sense of peace with the whole idea.

Good luck,