Scared to death

[Houston Curves]

First of all, let me say how truly saddened I am by the loss of Trudy. I was shocked and did not sleep at all last night after I read the post. My thoughts and prayers are with her family. I sincerely pray that God will give them the strength and courage they will need to make it through this terrible time.

With that said, Trudy's passing has also sent me into a mini-painic attack. So, I apologize in advance for the length of this post.

I'm 40, almost 41, and I'm considering surgery for the first time - and Dr. Shelokov is my long standing doctor (he really is a wonderful and caring doctor). I saw Dr. S from 2000-2002. That's the longest I've ever committed to seeing any doctor about my back - that says a lot for him. He told me that I would need surgery, either then or later, as my scoliosis was causing me so much pain and would very likely continue to progress.

However, I moved to Houston in 2003, and have been trying to start a family. We were finally successful and I gave birth to twins 3 months early on 11/23/05 and, as a result and due to complications after her birth, one of my daughters spent her first 8 months in the hospital on a ventilator. But, thank God, not she is home. She is, however, severly handicapped.

Believe it or not, there was a point to telling you all of that. For the past 5 years, I've been concentrating on taking no medications at all, and then on my family emergencies. So, I haven't been taking care of myself or seeing any doctors, and I've been in a LOT of pain since my pregnancy. So, I finally made time to see a spine doctor in late January of 2007. I saw Dr. Darrell Hanson at Baylor Spine Center, and he agreed with Dr. Shelokov (from back in 2002) that I need surgery due to my pain. I have an appointment with Dr. Rex Marco in Houston for a 3rd opinion, and then I have an appointment with Dr. Shelokov's PA on 3/13/07. I know I'm going to need the fusion surgery I've been putting off all my life if I want any kind of "quality of life." Also, I am so cranky, cratchety, mean, yucky, etc., when I'm in pain and I do NOT want my kids to remember that when they think of me. God only knows how much time I am going to have with them, and I want them to have only the best memories of me. But I'm now terrified!!!!!!

Can anyone offer any advise, encouragement, sage advise? I mean, I knew that death was a risk of surgery, but it's so abstract until you read someone's post's pre-surgery and then read that she has passed away.

Thank you all for your words on this website. I am so glad I joined the forum.

HC

[dorigirl]

I think it is important to keep all things in perspective. Obviously, there is a risk with this surgery, it is an enormous decision and should only be made with much information, education and soul searching. There is a risk with any surgery, I don't care if it's to have wisdom teeth removed. Any time you are under anestesia the risk is always there.

That being said, you are still faced with weighing the positive outcome from this surgery to the risks. If your curves are severe enough, your pain is great and you have been advised that progression is likely, you may find yourself leaning in favor of surgery like it or not. Much like someone that needs a tumor removed or have heart surgery, it is done to improve your health and quality of life.

Unfortunately, there are those of us who must face this decision. As for myself, I knew that surgery was the best choice for me and that without it my future looked grim. Now, four months later I thank God for a successful outcome and I am feeling better everyday. I am sure that if the tragic death of Trudy would have happened before my surgery I would have probably freaked out and second guessed my decision. But, I believe I would have ultimately decided to go through with it because sometimes life demands that you take a risk.

I wish you the best of luck in your decision and I hope you contine to come to this forum for help.

Dori
Surgery on October 9, 2006
60* curve corrected to less than 10*!!

[abhbarry]

understandable

I completely understand your feelings of panic. I am scheduled to make my final surgery decision with Dr. Tribus March 1st and have had similar feelings. I am truly heart broken over Trudy's passing and simply don't understand why it happened. I've been thinking about her family a lot the past two days and contemplating life in general.

With that said, I also know that there are risks with surgery, but there have been many many wonderful outcomes from scoliosis surgery, as shown on this forum. Personally, I'm not going to rush through the fear and the grieving right now, but let all the emotions run its course until my heart catches up with my logical side of my brain that says "surgery will be the best thing for you." Everyone tells me that it is totally normal to feel more anxious now, especially because we're all also feeling so incredibly sad.

I don't know if that was helpful or not, but you're not alone, and I thank God for this forum and the support and love that everyone has shown, especially the last couple of days for Trudy.

Best,
Anya

[Houston Curves]

Thank you...

Thank you so much for your replies. That's something I love about this forum - there are so many others out there who have been through the pain of scoliosis and understand. I had a "heart to heart" with a friend yesterday and she told me something that helped. You are going to die when you are going to die, and there isn't anything you can do about that. The operative experiences of others, even though it's helpful information, is not going to be exactly like yours. What you can do is to make the best decisions for yourself and your family.

I need to think of my husband and my girls in deciding what to do. I know in my head that I do need the fusion. However, I have those moments, sometimes days or a week, without too much pain and I start second guessing. Asking myself "is this really so bad?" or "can't I live with this?". Unfortunately, I have selective amnesia when it comes to my own pain. So, I have taken the advise of another forum member and I started a scoliosis diary (from her blog site). I am writing doen a pain scale for the morning, afternoon and evening, and any significant changes during the day. I think that looking back at my own words might help me solidify my decision.

Thank you everyone. I am very fortunate to have found this forum.

HC (Ann)

[abhbarry]

Hi Ann,

The pain journal is a really good idea - I did it for a while. I also think it is very common for scoliosis patients to have "selective amnesia" when dealing with pain since we don't really know what a "pain free" day is. In addition, I know that I have had many many moments of asking: can't I just deal with this pain? It seems so normal, but when I come home from grocery shopping and I have to lay down before cooking dinner because of the pain, for example, my husband reminds me that that is not normal.

Just a few thoughts,
Anya

[Karen Ocker]

Risk of surgery

In my case I believed the benefits far out weighed the risks. The scoliosis was going to slowly kill me because it was progressing, impairing my breathing, and NOTHING ElSE would stop /correct my curves.
I am in the medical profession and know just about every complication there is. I also knew, more than most, the insidiousness of this disease. Was I afraid? Of course! I was 60 when I had the revision surgery.

There are many horrible car accidents, falls etc. We still drive cars and get out of bed in the morning. The diet guru, Dr. Atkins, slipped on an ice patch in New York City and died from that fall. No diet would save him from that.

What happened to Trudy was tragic and extremely rare. We must keep everything in perspective. It would be terrible to avoid really helpful/necessary surgery because of fear of "what can happen".

[brynnski]

Thank you, Ann (aka "Houston Curves"), for sharing with us the fact that your fears about surgery have been compounded by Trudy's death. The same thing has happened to me. I am scheduled for both anterior and posterior fusions in May. I'm 59 years old. When I found out a few months ago that I'd have to have surgery because my curves have progressed I experienced a lot of fear. I did my best to deal with it, and I was getting a lot better. I had been reading and posting on this forum but had taken some "time off" for awhile, after getting a lot from the experience and basically having no more questions at that time. I just wanted to focus on other things for awhile. And the back pain I'd been dealing with since October had subsided, as it does periodically (yes, I'm another person with "selective amnesia."). A couple of days ago I decided to check in, since it had been a long time. And I read about Trudy. Now I'm scared all over again, although I realize that her death was very unusual. When I drive down the freeway I remind myself that this is potentially more dangerous than a spinal fusion operation. So far that hasn't helped much. The first night I had to take a sleeping pill to get to sleep. I guess I just have to be as patient with myself as possible, as I grieve for Trudy, and have faith that my fears will subside over time.

Karen: I'm grateful to you, as always, for reminding us how much good came out of your surgery. You are a role model for me. Thanks!

All of this did result in me calling my doctor and telling him about "episodes" of shortness of breath I sometimes get. He is now going to send me to a cardiologist for an eval before my surgery. So something good has come out of all this.

I pray for Trudy's family, and my thoughts are with them much of the time now. And with all of you. It's good to know that we are not alone!

Brynn

[Gator]

Also very apprehensive

I also have a date,or rather dates: April 17 and 18. I've also been away...a much needed visit to a healing place..the Sea Ranch on the northern CA coast. Just checked in and found the sad news about Trudy. You are all to be commended for your support of this member, and now for her friends and family.
Karen, as usual your wisdom shines through. And those of us facing this surgery really need this right now. Thank you so much!

I am still in some doubt about how far to go with the fusion. Both surgeons are now reccommending sacrum up to T2, although my thoracic curve is 30 degrees. The lumbar is 50 degrees.Both are rapidly progressing. Their thought is that stopping at T 12 or so may lead to progression above in the future. My physician husband and I (RN) have learned a great adage in the past from an orthopedic surgeon: Sometimes the enemy of good...is" better." That is, sometimes you need to stop when you are ahead.

My other problem right now is that my surgeon has explained the post- op course to me. ICU, arterial line,ventilator, multiple IV lines etc. That describes the world that I inhabited most of my adult life. On the other side, where I worked as a nurse and educator. I can't imagine being a patient in an ICU. I truly know all of the things that can go wrong, and that is a real source of worry for me.

Sorry for the long post. I just needed to vent....to a great group that understands

Julie
(now 65...sigh...surgeon says I don't look it or act it
DDD 2 laminectomies at L4-5 in early 80's
Lumbar 50 Thoracic 30 with significant rotation
Getting my courage up!

[brynnski]

Dear Gator,

Sounds like we are much the same. My lumbar curve is now around 55 degrees and my thoracic is around 30. My doctor hasn't decided how far up to fuse. He was considering a fusion of just up to T9 or T10. But the area of my compensatory curve (several levels above) is where I have the most pain. No one knows why for sure, the suspicion is that it is simply trying to balance out my great lumbar imbalance. I'm concerned that if the fusion doesn't include my thoracic curve it will "freak out" and cause more pain than ever. It tends to do this when something is done to my lower curve (eg: rhizotomy). What are your feelings on this?

Also, does anyone who has had surgery have any insight on this issue?

Thanks, Brynn