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Confusedmom
03-16-2011, 11:16 AM
Hi All,
Just wanted to let everyone know I set the date for surgery with Dr. Lenke. He has openings now starting in January, but I am waiting until March next year because it's better for my husband's work schedule. Plus I am hoping to walk outside some during recovery.

Anyway, I just wanted to thank you all for the support I've gotten from you over the past year--especially those of you I've been able to meet and PM. It really has made all the difference in making this decision and being at peace with it.

So, big day for me: I also got to meet the lovely Golfnut (Karen)! We coincidentally had back-to-back (no pun intended) appointments in St. Louis. So great to put a face with a name and see another person doing so well after surgery!!

On the negative side, my curve has gotten crazy out of control--measured 84 degrees today, up from 68 last summer!! However, Dr. Lenke put me as a 3-4 on a scale of 1 to 10 for the surgeries he does. So that's good.

Well, now it's on to working out, eating right and trying to get organized. Thanks again to everyone for helping me make ***THE*** decision. (Now, just help me stick to it!)

Thanks,
Evelyn

Elisa
03-16-2011, 11:42 AM
I think that's great that you have a whole year to get prepared for your surgery and yourself healthy and in the best shape possible.

LisaB
03-16-2011, 01:01 PM
Hi Evelyn - sounds like everything went well! Glad you set the date. We should get together again!

Lisa

hdugger
03-16-2011, 01:13 PM
Glad to hear you're on the schedule (and that you're a comparatively easy case). Did he have any ideas on why he thought you had the big progression?

Doodles
03-16-2011, 01:25 PM
Evelyn--
Glad you were able to get a date for surgery that works for you and husband. That big decision is a first step and it must feel good to have that part done. Good luck in your preparations! Janet

jrnyc
03-16-2011, 03:45 PM
good luck, Ev!

how large will your fusion be...?
sounds like your curve has increased at an amazing rate!

i think you are smart to have the surgery when the weather will be getting better!

jess

golfnut
03-16-2011, 04:58 PM
Evelyn,
I was so happy to meet you today. I wish we could have talked a little longer. I know you will be happy with your decision for surgery and your choice of surgeons. Dr. Lenke is amazing. Please email me or call if you want to talk any time! I'm going to try to post my before and after pictures.

JenniferG
03-16-2011, 04:59 PM
Congratulations Evelyn, on taking this next step. It must have been good to hear your surgery will not be one of Dr. Lenke's more difficult ones despite your large curve. You'll do great!

rohrer01
03-16-2011, 05:20 PM
Hello, Evelyn. Wow, you must be nervous and excited to get this over with. Did Dr. Lenke give you any idea why your curve started progressing so rapidly. This makes me nervous, as my curve started progressing rapidly at about your age as well, although mine is a much smaller curve. I'm due to go back for a recheck and am nervous. Are they going to monitor you between now and surgery date because of the rapid progression and will they move your date up if it does? Sorry for so many questions. I'm really hoping the best for you. Congratulations on your decision.

KathK
03-18-2011, 07:56 AM
Congratulations, Evelyn! Maybe our paths will cross someday in St. Louis, or in Indianapolis as I'm not that far away. I had a lot of time to prepare also and, for me, it was good. I used the time to educate myself and to get into shape (sound like you are planning to do the same). With such a rapid progression and a large curve, I think you are making a wise choice.

naptown78
03-18-2011, 08:25 PM
Evelyn,
I know this is a major decision for you and it must feel like a weight off for you to finally have a date set. I am sorry to hear that your curve has progressed so rapidly. Do you have more pain associated with that progression? I would love to get together again with you and Lisa...I will be thinking of you as you go through this next year ;-)

Confusedmom
03-20-2011, 04:45 PM
Hi all,

Thanks for the well-wishes! To answer a couple questions, I really am not totally believing the progression as it's described. I was measured in Indianapolis at 68 degrees last June. Then I went to St. Louis 10 days later (also last June), and they measured me at 75, standing a different way (arms crossed at shoulders vs. at my sides). Then this March, they measured me yet a third way in St. Louis, with elbows parallel to shoulders and forearms straight up. Dr. Lenke's resident read the film at 78 degrees, and then Lenke came in and crossed that out and wrote 84. So, I think the 68 degrees in Indy was low (it had been at that level a couple of years) and the 84 is high. Even so, there is obvious progression, but maybe not at the alarming rate the base numbers would suggest. Dr. Lenke did remark that the rate of progression was somewhat "alarming" for someone my age, but he was looking at the total span of time from 2005 (my first available xray at 55 degrees) to now. He did not seem to think he needed to monitor me in the next year, but suggested that I not wait 5 or 10 years for surgery. I think that even if it progresses another 10-12 degrees in the next year, that is not a big difference for him in the type of surgery he has to do. It was already going to be T4 or 5 to sacrum, so it's not going to make a huge difference in what they fuse, either, though it could go a little higher, I guess. So, long story short, I don't think the progression really matters at this point, since surgery is imminent. As for a reason for the fast progression--I have a very rare metabolic disorder that affects my elastic tissues, and he thinks that is causing the fast progression. It's not Marfans, but think something like that. Good news is that it hasn't affected me in any other way except a weird patch of skin on my neck that led to the diagnosis. Okay, hope that answers some questions. I'm sure I'll be back with my own soon!

:),
Evelyn

jrnyc
03-20-2011, 05:23 PM
hi Ev
i have never been measured for scoli any other way than with my arms down at my sides...by any surgeon!
i think surgeons...and all doctors...should agree on a method of measurement!
because...i bet standing differently can really throw the numbers off!
makes sense that you take them with a grain of salt!
still, it sounds like the progression is happening...

it is great that you have decided...and you are relatively young, so that will be a benefit for healing!

i think you should consider changing your nickname, though...you don't sound one bit confused anymore!

jess