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I'm sorry to see you go. I hope you eventually find a way to tolerate living in the body that you've been given. I hope you've already figured out that you'll never been pain free, and that's a pretty crappy pill to swallow. I can't even imagine what it's like. Even when I've had a lot of back pain, there's always been either a way to get out of pain (e.g., lay down), or hope that the pain would go away with time.
I've actually been thinking of you a lot over the last week. I'm working on a short survey to which I'll be posting a link very soon. I'm trying to find out how people feel about having complex spine surgery, once they know their long term outcome. While your example is certainly extreme, there does seem to be an awful lot of us who have had to have multiple surgeries. More and more, I'm hearing about people who start with relatively small surgeries (e.g., T10-L3), then have to have additional up and/or down (e.g., T10-S1) fusions. And, as we've all seen far too commonly, it's not just a single additional surgery... many of those people go on to have 4 or more surgeries.
Now that I'm well past my own surgeries, I've been looking back. While I'm delighted to be out of pain now (since my latest surgery), I have lost some function, and can't do some of the things that I had hoped I could. When I made the decision to have my first surgery, one of the motivators was that I wanted to get back to being able to hike. While I was able to hike for a short time after my recovery, I lost the ability again, and have not regained it.
I've always found it easy to convince myself that I really had to have my first surgeries. The truth is that while I was in a lot of pain (that thankfully could be relieved by sitting or lying), I wonder what would have happened if I had waited another 5 years to have surgery. I wonder if I could have learned to live with what I had. Maybe I could have been able to reduce my pain level and improve my level of function by finding a good physical therapist. I wish I had known enough to try that. (I had gone through PT 2-3 times, as well as several non-traditional therapies. But I didn't know that there is a huge difference between ordinary therapists and great ones.) If I had chosen not to have surgery and eventually ended up needing to use a walker or even a wheelchair, that wouldn't be the worst thing that could have happened. I think that at the time of my first surgery, I expected perfect. I know now that that's not a very realistic expectation.
Until the science improves, I'm hoping to find a way to let patients better know what their decisions mean in the long term. We know from published research what to expect in 2 years, but what about 5 to 20 years? If you knew there was a 30% chance of eventually needing additional spine surgery, would you make the same decision? What if it was 50% or 70%? What if you knew there was a 30% chance that you'll need multiple additional surgeries? Unfortunately, even if I can get some answers, I'm guessing that I'll have little to no impact on people's decisions, but maybe I can make them happier with their decisions by being more informed.
Anyway, I wish you the best.
Regards,
Linda
Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Twain
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Surgery 2/10/93 A/P fusion T4-L3
Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation
Dear Melissa-- How very nice of you to let us all know that you are "moving on" and not just disappear without a word. Yes, you have had a very difficult time in so many ways. I will miss your posts on the forum, but I am glad we are "friends" on facebook. I enjoy seeing pictures of you and your family. Little Yaffa is adorable. (BIG smile!)
This has been your thread for such a LONG time... it will seem strange to have it end with good-byes to you. I'll be praying for you and that you will find joy even through your difficulties. You are a strong person. Keep your determination and know we care. Hugs, Susie
71 and plugging along... but having some problems 2007 52° w/ severe lumbar stenosis & L2L3 lateral listhesis (side shift) 5/4/07 posterior fusion T2-L4 w/ laminectomies and osteotomies @L2L3, L3L4
Dr. Kim Hammerberg, Rush Univ. Medical Center in Chicago
Corrected to 15°
CMT (type 2) DX in 2014, progressing
10/2018 x-rays - spondylolisthesis at L4/L5 - Dr. DeWald is monitoring
I understand your motivation to accept your situation and leave the group. I hope that if you ever want to, or need advice, that you'll pop back occasionally and not feel your goodbyes have to be permanent. But if they are, then I wish you all the very best. I am so very sorry that your surgery was not successful from day 1. Equally, I'm sorry about all the other difficulties you've had to face. Your life has been very, very hard since your first surgery but you've faced everything and done what you could to deal with it and make the best of it. I think you've been incredibly brave but I'm sorry that you've had to be. Take care Melissa. I'll continue to hope things improve for you.
Surgery March 3, 2009 at almost 58, now 63.
Dr. Askin, Brisbane, Australia
T4-Pelvis, Posterior only
Osteotomies and Laminectomies
Was 68 degrees, now 22 and pain free
I can understand the situation that you are in and feel so bad since you and Dr Bederman sure have put quite the effort in with all your surgeries through the years. If anyone has been strong around here, its you.
I think that all of us that sit around the table have learned so much about scoliosis from you.....You have been exceptionally brave.
I am sorry you want to leave, but it would be nice if you chimed in every once in a while.....I almost stopped posting due to my own personal family situation but was convinced to keep posting for my own sanity. Thanks Linda....
I hope the best for you.....
Ed
49 yr old male, now 63, the new 64...
Pre surgery curves T70,L70
ALIF/PSA T2-Pelvis 01/29/08, 01/31/08 7" pelvic anchors BMP
Dr Brett Menmuir St Marys Hospital Reno,Nevada
Melissa--
I happened to check the forum just to see how you were doing. So sorry to see that things are not going well. I too hope you might give updates on occasion. As others have said, I know of no one on here who has endured so much and been so brave. I've said it before--wish I could somehow relieve even a part of your suffering and difficult situations. I will continue to keep you in my thoughts and prayers. Janet
Janet
61 years old--57 for surgery
Diagnosed in 1965 at age of 13--no brace
Thoracic Curve: 96 degrees to 35 degrees
Lumbar Curve: 63 degrees to 5 degrees
Surgery with Dr. Lenke in St. Louis--March 30, 2009
T-2 to Pelvis, and hopefully all posterior procedure.
All was posterior along with 2 cages and 6 osteotomies.
I am not doing well at this point. I am in much pain and trying not to go back to narcotics. I am trying injections and PT. The surgeon , who was going to do my knee replacement , left UCI. The new surgeon doesn't begin until July so it is going to be a wait to get the knee replaced.
Peg
61 yrs old
75 degree lumbar curve with thoracic kyphosis
T3 - S1 surgery with Dr. Buchowski in St. Louis, on 10/27/14
Working on healing in Columbus, Ohio!
Again, I'm so sorry to read about your continuing hardships and I continue to hope for improvements and less pain (all kinds) for you. I had been thinking of you. Thanks for letting us know. Those of us who've been following your battle appreciate it, even if it's not the good news we're hoping for. As always, best of luck, Melissa.
Surgery March 3, 2009 at almost 58, now 63.
Dr. Askin, Brisbane, Australia
T4-Pelvis, Posterior only
Osteotomies and Laminectomies
Was 68 degrees, now 22 and pain free
Melissa, take care and keep us posted. Praying things get easier for you.
T10-pelvis fusion 12/08
C5,6,7 fusion 9/10
T2--T10 fusion 2/11
C 4-5 fusion 11/14
Right scapulectomy 6/15
Right pectoralis major muscle transfer to scapula
To replace the action of Serratus Anterior muscle 3/16
Broken neck 9/28/2018
Emergency surgery posterior fusion C4- T3
Repeated 11/2018 because rods pulled apart added T2 fusion
Removal of partial right thoracic hardware 1/2020
Removal and replacement of C4-T10 hardware with C7 and T 1
Osteotomy
Surgery March 3, 2009 at almost 58, now 63.
Dr. Askin, Brisbane, Australia
T4-Pelvis, Posterior only
Osteotomies and Laminectomies
Was 68 degrees, now 22 and pain free
Well, I had more trigger point injections this week and they really seem to help with my tightness.
So for that I am happy.
Dr Bederman called me today to tell me that he is leaving UCI. I am so glad that all of my spine surgery is done, unless I fall and break a rod or do something really stupid. He is going to Texas outside of Dallas to The Texas Back Institute. I started going to UCI when he joined them and he finished my last surgery in December.
So glad to hear the trigger point injections have helped Melissa. To have some of your pain relieved must be such a big boost to you.
You will be sad to see Dr. Bederman go, just the same. It sounds like he was your greatest support and he appeared on the scene just at the right time. Hopefully, you'll never need another spinal surgery.
Surgery March 3, 2009 at almost 58, now 63.
Dr. Askin, Brisbane, Australia
T4-Pelvis, Posterior only
Osteotomies and Laminectomies
Was 68 degrees, now 22 and pain free
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