Surgery in 40s vs 60s

[Irina]

[QUOTE=JenniferG;140861]Hi Irina,

I am not sure of your age, but my curve didn't progress much either, until my 50s. I went from ignoring it to noticing it, to knowing I had to do something to stop it, over 7 years. The reason I'm wondering about your age is, for me, the further into my 50s I got, the faster my curve progressed. You may find the same thing as you get older. I'm assuming you're in your 40s.

QUOTE]

Jennifer,

I am 44. My curve was stable during my 20-30s (or it seemed to me that way), but it started getting significantly worse since I hit 40s. It's a slow and steady progression that I am noticing more and more. I don't know what my curve was when I was 30, but visually I was not nearly as deformed back then as I am now. I am probably a classic example of a 1-2 degree a year progression...

I am leaning towards having this surgery rather sooner than later because I don't think I will be able to avoid this. I hope I’d have a clearer picture after I get several other medical opinions.

[Confusedmom]

Irina,
My situation was very similar to yours, except that I had the xrays to document progression. Do you know your Cobb angle from any other time period? You need at least about a 6 degree change to show progression because of the wide margin of error. Even that may not be accurate if you were measured by two different people. If you are not in pain and not progressing, I would avoid the surgery. You are young enough you can wait 10-15 years and still have the surgery if needed. However, if you have certain progression (I did), then I would look into surgery. But do NOT go to your local surgeon unless he/she happens to be one of the very best. If you need names of the best, PM Linda Racine. I did have surgery and got about 80 percent correction. But I think that is higher than most. I am less than four months post op, but I am still in pain (on some daily pain meds) and I'm worried about pain in my leg. It is nerve pain that was not there pre-op. I am worried that it will not go away even though I had surgery with one of the best surgeons. I hope that's not the case, but there are no guarantees. I am walking a lot and hoping to start PT soon to address it, but I'm just not sure at this point. The surgeons will tell you it's possible to end up in more pain after the surgery. So I would not do this unless you are SURE you need to. If you are sure you need surgery, then it's worth the risks.

Best wishes,
Evelyn

[Irina]

Hi Evelyn,

I don’t have any other x-rays. The only ones I have are from 2010 and yesterday, and all I know that in 2010 I had 67TL – 34L and in 2012 it is 70TL – 40L (measured by a local surgeon. Btw, here are 6 degrees in lumbar progression if it is measured correctly). Wish I had something from ten years ago, but I know for sure that I was not as crooked at 34 as I am at 44 and didn’t have rib cage sitting on my pelvis bone even a year ago.

I scheduled two other appointments – one with Dr. Hu in UCSF and another with Dr. Pashman in LA. What made me think yesterday is the confidence of my local surgeon that my curve will NOT stop progressing because I lost those 3 inches in height. But who knows? Can one be absolutely sure that large curves will always progress???

Would that be Ok to send you a private message sometimes? I read a lot of your posts because, like you said, our cases seem to be very similar. I hope that your leg pain is temporary and will go away soon. Four months is still early in recovery, but what do I know. Thank you so much for your thoughtful response!

Irina.

[titaniumed]

Irina

I think that you will like Dr Hu....

I have been to 2 of the Scoliosis conferences at UCSF, and all of the people there are great. Dr Hu wrote a chapter in Dr Moes’s book decades ago, so she has been on the scene a LONG time. She worked and probably still works with Dr Bradford who is an ICON of scoliosis. The procedure he invented (partial corpectomy) was used by my surgeon in my anterior surgery....All came through (TCSC) Twin Cities Scoliosis Center through the years....including my surgeon. That’s where (SRS) The Scoliosis Research Society was founded. Many surgeons go through UCSF for training, Dr Pashman being one of them.

Be sure to find Linda Racine when you go, she works there with all these great people.

Dr Burch works with a computerized system that examines and details the actual formation or malformation of each vertebrae. It decides which areas to remove and fuse.....a valuable tool for maximum deformity, for the worst of the worst.

These are very special people....brings tears to my eyes. UCSF is one of the best hospitals in the world, if not the best.

Just remember that its ok to say that you want to think about things....you don’t have to commit. They all understand this and want YOU to to make an educated decision, the most important decision of your life. This standard of excellence should be adopted everywhere.

Be sure to let us know how it goes. Bring all your x-rays and data with you.

Ed

[Doodles]

Ed--
Question for you: What is the partial corpectomy? I don't think I've heard that term before. Thanks. Janet

[titaniumed]

Janet
There are 2 procedures, its not common and I think started as a cervical specialty. Dr Men-Muir is a cervical specialist also.

Corpectomy is when they remove the whole vertebrae. This usually is the result of an extreme trauma. They will install a device to replace the removed vertebrae.

Partial corpectomy is when they remove your endplates due to disease....Not only did I have severe DDD, but my lumbar vertebrae were diseased also. I have read that this happens when you wait too long for surgery........it starts with DDD.

Bone needs to bleed so fusion can occur and the diseased endplates will not bleed. After removing that diseased bone, the height is thinned and oversize spacers are inserted.....I have 5, 13mm spacers or 2 1/2 inches of PEEK in my lower back. PEEK is now the new wonder spacer material these days.......used in anterior surgeries.

Without my partial corpectomy, I would not have fused or chances would have been lower. It guaranteed my fusions. I didn’t dictate procedure, I wanted to be done without any revisions.....I didn’t want to come back since I felt that I couldn’t handle it again at an older age. The pain was mind blowing, I guess I’m pretty tough. (smiley face)

I’m an example of waiting too long for surgery. People can have HUGE 100 degree plus x-rays, but others like me can have smaller curves and have other problems also......These things are difficult for “specialists” to catch, that’s why everyone needs to visit a qualified “scoliosis surgeon” before making ANY decisions. Just because a person makes that visit does not mean that they will have surgery, it helps in ruling out the surprises that the others WILL miss.....I almost had the door completely slam shut, I slipped my foot in just in time.

Scoliosis should never be ignored....Get those checkups from a scoliosis specialist!

Ed

[LindaRacine]

Ed...

I remember Dr. Bradford showing me probably 15+ years ago, an xray of someone on whom he'd just done a 3-level corpectomy. At that time, I could never have imagined such a thing was possible. Now, it's relatively common to see corpectomies, vertebral column resections, and pedicle subtraction osteotomies.

--Linda

[Confusedmom]

Irina,
It sounds like you are on the right track--seeing some top-notch surgeons and really thinking things through. The loss of height and increased rotation surely suggest progression. I remember my local surgeon saying to me that his measurements of me had hit 68 degrees, up from 62 a few years before and so that made him sure I was progressing (outside the margin of error). I was like, well duh?! Have you looked at my back? It did not look like this when I was in college or when I got married! So, I know what you mean about being pretty certain you've had progression, even without the xrays.

Thanks for the well-wishes on the leg, and of course feel free to PM any time! (You're so polite--I don't ask people first!)

Best,
Evelyn

[Irina]

Irina

They all understand this and want YOU to to make an educated decision, the most important decision of your life.

Ed

Hi Ed,

For me, the most important decision in my life was moving to the United States fourteen years ago. It took me a looong to decide to leave everything behind and move to the other side of the world, but I am so glad I did! Like a scoli surgery, a first year was rough, but life is good now. So, the surgery (if I decide to do it after thinking about it for a looong time) would be a second most important decision in my life :-) Hopefully it goes like my immigration – rough first year and then happily thereafter.

Btw, guys, bear with my creative spelling as English is my second language. Happy Friday!

[Doodles]

Ed--
Thanks for your detailed understandable post. I was totally unfamiliar with this. Thought it tied into thorcoplasty/rib hump surgery. Yes, "pretty tough"; that's an understatement!

Irina--
Your posts are absolutely fine, and this is from a former English teacher. Where did you come from? I may have missed this on earlier posts. We're glad you are here!

Janet

[Irina]

Ed--
Thanks for your detailed understandable post. I was totally unfamiliar with this. Thought it tied into thorcoplasty/rib hump surgery. Yes, "pretty tough"; that's an understatement!

Irina--
Your posts are absolutely fine, and this is from a former English teacher. Where did you come from? I may have missed this on earlier posts. We're glad you are here!

Janet

Janet,

I am originally from Ukraine.

[Doodles]

Irina--
Your name was of interest because we went to a Russian restaurant 2 nights ago in Des Moines, Iowa; it's called Irina's and it's fantastic. Baltica beer was great too. You will have to come visit your namesake restaurant! Janet

[Doodles]

Decided it was time to fix signature. Yikes I just advanced 2 years. I was really clinging to that 59, I guess.

[titaniumed]

[QUOTE=Irina;140913]
For me, the most important decision in my life was moving to the United States fourteen years ago. QUOTE]

I agree, it probably was a good move, especially in having scoliosis. Moving near the best surgical centers is something we have to think about even living here in the United States. Years ago, there were only a few places to have surgery. It seems that in the last 15 years or so, there has been more awareness of scoliosis and how devastating it can be. Now, there are scoliosis surgeons popping up everywhere. I myself was ready to move back to California since there were no scoliosis surgeons up here in Reno years ago.

And a belated welcome to California! I remember when I first heard the term “bitchin” years ago....which is California slang. We all have our language barriers, English can be a tough language. (smiley face) Its in the dictionary now. LOL
http://dictionary.reference.com/browse/bitchin?s=t

Your doing just fine with your English.

Even though you could possibly be operated on by a great team, it is wise to be aware of complications because they happen. I know it’s a scary subject, but this is why it suddenly becomes the most important decision of your life.

Infection, non-union, stubborn bleeding, pain, blood clots, etc are things that we need to be aware of. Surgeons will explain these things to you, usually they are discussed after you have made your decision.......I’m sorry I have to bring this up, its important. Many of us come through our surgeries just fine like myself, but like Linda has said, complications only matter when they happen to you.

Ed

[bluestone]

I had my surgery when I was 44-almost 45. I was diagnosed when I was 24 and muddled through my 20s/30s in a fair amount of pain which became unbearable when I hit 40.
Unfortunately I only ever saw Orthopedic drs who didn't specialise in scoliosis and until I joined a support forum I didn't realise that if I didn't get to see a scoliosis specialist I could be in trouble regarding how quickly it was progressing.

I asked my family dr and he did the referral. I was shocked when he told me my curve was 72 degrees and that I need to have surgery or it will progress. Within a year of seeing him it was done.

There are times when I wonder if it was the right thing but what was the alternative? Some days I can't decide whether my pain is worse than before surgery, it depends in what I've been doing. I'm disappointed that I'm still restricted because of pain and sometimes it feels as if my body doesnt want this metal in it-I have 28 screws and sometimes when I lie down I can feel a lot of them.

I wouldn't have wanted the surgery when I was younger because it was much more traumatic then and having it at 44 was right for me, my kids were 18 and 14 so weren't reliant on me but I wouldn't have wanted it any older either because for me it was tough on my body and I've found it hard to get back to some sort of fitness.