My Journey, Starting Today

[Mojo's Mom]

Again, sorry if I scared you.
Rohrer01

No one should ever apologize for anything on this forum unless they are being mean. You all did do me a favor, and I may be making the wrong call. I have huge curves...but darn it, I'm not going to get fused until I feel like I really have to.

My time will come, I have no real doubt.

[Mojo's Mom]

Stress Test?

So I just read up on the Lexiscan cardiac stress test my surgeon has ordered as part of my pre-surgical workup...have you all been through this? It is much more involved and much more scary than I'd had any idea of.

I'd just like to hear some feedback from those of you who have done it.

I was terrified of the CT myelogram, too, and it was no big deal other than the tedious 24 hours flat on my back afterward.

[jrnyc]

hey Steph
you're good...
i spent about 4 hours on my back at the place that did the myleogram, and went
home by cab and spent another 12 hours or so on my back, out of fear....
got no headache...
did you read your myleogram results yet....?
i read mine...really scary to me, just because it shows a whole lot!

jess

[rohrer01]

I don't know what kind of stress test this is. I've had the kind where they monitor your heart rate, pulse, AND do an echo cardiogram all at the same time as I am laying on my back pedaling this bicycle type thing. That was pretty hard to do, but helped tremendously in my diagnosis of IST.

The only CT/myelogram I ever had was a nightmare. I had to spend two days in the hospital and they wanted to keep me longer. They wouldn't let me up to pee and I was 16 years old and not about to go in a bedpan. I laid there on the bedpan for a very long time (seemed like hours) crying and not being able to go. They finally let me up to the bathroom. I did get the headache, too. It was aweful. That's why I'm scared to have another one. :-(

[Mojo's Mom]

Hi, everybody, I have been off the forum for quite a while. I just flew home from Texas after a three level laminectomy surgery with Dr. O'Brien at Baylor's Southwest Scoliosis Center.

I am about ten days post-op now, and I just want to say that I am incredibly impressed with what all of you have been through who have had instrumented fusions! My much smaller surgery has been no cake walk and the pain on day two particularly was amazing to me. That and just how difficult it was so simply sit up on the bed, or stand up. I underestimated how hard the surgery would be and how slow recovery is even from relatively minor back surgery. I guess I wasn't thinking about the fact that muscles get cut, even with this.

I just finished a mile walk, my longest yet, and although there is back pain, the crippling left hip and leg pain/tingling/burning no longer occurs. That was the goal of surgery. I have most of the movement and activity limitations you all have, just for a much shorter period of time.

It remains to be seen whether or not the choice I made works out well. At the end of May I will be back in Texas for follow-up and we will see if the lumbar curve is remaining stable. But the morning of surgery, when Dr. O'Brien came in to see me, I asked him, "You really think this is going to work out?"...not a serious question at that point, you understand...He said if he had the curves I had, if he had the symptoms I described, our surgical plan was what he would do if it were him.

Many of us have agonized over difficult decisions. Surgery or not? If surgery, what surgery? If fusion, how far down? Will we feel better afterward, or worse? Have we chosen the right surgeon?

In my case, I chose to go with a minimal surgery to relieve crippling radiculopathy, and leave the scoliosis alone for now. It was a hard choice, but I put my trust in my surgeon, and in my long standing policy of conservative treatment of my condition. I realize a long instrumented fusion is likely in my future and I would guess best case scenario might be five years out and worst case could be as early as months. I knew that going in and I am ok with it.

Thanks to all of you forntheninformation and personal stories you share here, both encouraging and worrying. No one else knows what it is like to live with moderate to severe scoliosis as an adult with many responsibilities and a complicated life with many demands. This forum has helped me so much, and I know it will continue to help as my journey progresses.

[golfnut]

Stephanie,
It is good to hear from you. Walking a mile is fantastic! Like you said, we all agonize over making the right decision. Hopefully, you have bought yourself some time and won't need a long fusion for years. I was 60 when I had surgery, so you still have time. Best of luck with your recovery.

[mabeckoff]

Glad to hear that you are doing so well

[Mojo's Mom]

Stephanie,
It is good to hear from you. Walking a mile is fantastic!

Well, the mile is different for me, I only had a small procedure, not a corrected spine with instrumented fusion. I almost don't feel worthy of posting here about my recovery...and I was in excellent physical condition going into my surgery.

L

Like you said, we all agonize over making the right decision. Hopefully, you have bought yourself some time and won't need a long fusion for years. I was 60 when I had surgery, so you still have time. Best of luck with your recovery.

A large part of my decision was based on my confidence that, especially with the leg pain resolved, I will be able to maintain a high level of fitness in the coming years (yes, I know, no crystal ball). In fact, if the leg pain is truly resolved AND my lumbar curve does not destabilize, I expect to achieve an even higher level if fitness once I have healed from this surgery.

Of course, I still look like Hell, but you can't sweat the small stuff!

[Confusedmom]

Congratulations on making it through your surgery with flying colors! I can tell you that if I hadn't had progression, I wouldn't have had the long fusion. You had a great surgeon and good advice, so I bet you'll do very well. You are walking a mile at a time at 10 days out, while I'm walking a mile in a day at one month out (and at age 40). That's the difference (among others) with the long fusion. I wish you a smooth and swift recovery, and it sounds like you are well on your way!!

Best,
Evelyn