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View Full Version : age 66, first surgery, Scared !!!



dawn
01-04-2005, 02:41 PM
Hi Everyone and Happy, Healthy New Year !
I am 66 yrs, in good health, perfect weight, and contemplating surgery. I have an S curve with 38 thoracic, 68 lumbar. A little superficial numbness in upper part of my foot, one vertebra looks quite unstable, like a tower of single blocks with one vertebra that is 1/2 way off surrounding blocks. I have visited Dr. Boachie Adjei in NYC who suggested front and back in 2 separate surgeries. (1 year ago) I then visited Dr. Lawrence Lenke at Barnes Jewish in St. Louis MO, (just last month), he said one surgery front and back in a 9 hour surgery. I am pretty much pain free, have serious stenosis and do exercises that help immensely, I do not stand in one spot for more than 5 min. (that causes pain) I can walk for about 1 mile in the am and usually can do the same at noc.
My questions: Anyone had a similar surgery including L5-s1 fusion, also including fusion of all lumbar vertebrae, Lenke will not do the top curve. (Boachie also did not want to do top thoracic curve)
Anyone had Dr. Lenke as a surgeon, (he is listed as one of the top doctors in the USA.)
Please comment on what you think I should do? It is a tough decision, as the reason for doing this is the progression has been constant, and the longer I wait, the more risk of fusion not taking and of course all the other risks go up with age. I have no detectable osteoporosis at this time. Sorry this is so long
Thanks Dawn deblythe2002@yahoo.com if you wish to email directly to me.

SkiAnn
01-04-2005, 08:42 PM
Hi Dawn,

Of course, it's no secret that we can't make the decision for you; however, we can certainly share our personal experiences.

I am 57, had surgery last November on the 4th. Posterior fusion from T-10 to S-1, my surgery took 15 hours. It was no walk in the park and of course my recovery will be much longer than the younger folks. As far as my general physical condition ~ I am doing very well, the rest of my recovery process is just patiently waiting for the fusion to be complete which simply takes time. Patience is not one of my stronger virtues, but I am learning it is a valuable asset during recovery. I think it is normal to be frightened by the prospect of scoliosis surgery, it is a MAJOR surgery and a big deal!!!! I was confronted with some of the same problems you are dealing with, I wasn't getting any younger and the condition was progressing with no possibility of it reversing or stopping (severe scoliosis, severe disc degeneration and a previous back surgery{laminectomy in '99}had severly weakened the spine even further). My family and I came to the final decision; although, it was an elective surgery, I was still dealing with a 'known' (my condition would only continue to deteriorate) and an 'unknown' (the surgery offered me a chance to get better). I am not sorry I had the surgery, for me it was the right thing to do.

You have came to the right place, this forum was invaluable to me, the folks who participate have the experience, understanding and compassion that I needed. Most of the information I had before coming to the forum was strictly from the surgeon and hospital staff's position. I have previous posts if you are interested and if you want to email me, feel free. I am online everyday and will offer any support or share my experience with you anytime.

Fond Regards,

~ Gayle

dawn
01-04-2005, 09:41 PM
Thanks so much for your response. I am glad you are doing well, I live in Tucson, are you close by? Anyway, are you in a brace? I live alone, do you need to wear the brace at night if there is no one to help you get it on to go the bathroom?
Do you have any hints about preparing for home? I will go to rehab, then I will fly home, I wonder if that is a problem. so many questions! My biggest fears are infection or nerve damage, but I suppose that is par for the course. Have you heard of Dr. L Lenke in St. Louis?
Thanks again! Dawn

SkiAnn
01-05-2005, 03:26 PM
Hello again Dawn,

I would recommend a book "Scoliosis Surgery, The difinitive Patient's Reference" by David K. Wolpert, it is an excellent reference. Also Linda Racine has a site that has some excellent information. The book by D. Wopert, pretty well covers the subject from choosing a surgeon to preparing your home after surgery. Great stuff, I still refer to it occasionally. You are in Tucson, I AM fairly close, in Sierra Vista about 70 miles S.E. Have you sceduled your surgery yet?
Regards,
Gayle

dawn
01-05-2005, 06:37 PM
Thanks for the information. I have booked my surgery for Oct 8th, when the weather is better, I can't imagine doing this in Tucson in the summer, and I want to take a last big trip in the spring before I go for the surgery. I will work all summer to make up for the gap in income. Also, I think he has about a 6 mos waiting list. Still hoping to hear from someone who has had Dr. Lenke as their surgeon. Thanks Dawn

LindaRacine
01-06-2005, 01:00 AM
Hi Dawn...

Off the top of my head, I don't think I can give you the name of anyone who had Dr. Lenke as their surgeon. I know that he has a great reputation, at least as a researcher.

I live near San Francisco. A lot of people travel here to have their scoliosis surgeries at UCSF. While I don't think it's problem free, I've known many people who have flown home within a week of their surgeries. (They ask that you stay in a local hotel for three days after release if possible.) In fact, I drove someone to the airport from UCSF on December 23rd. (I think it would be better to travel on a day when there are fewer travelers.) I would absolutely recommend that you not even consider traveling by yourself.

I don't know how Dr. Lenke has his braces made, but even if the opening is in the back, you should be able to get in and out of the brace by yourself by the time you leave the hospital. Make sure that the physical/occupational therapist knows that you'll be going home alone and need to know how to turn over in bed by yourself, get in and out of bed by yourself, and get in and out of your brace by yourself.

Good luck!

Regards,
Linda

codom
01-07-2005, 01:41 PM
Dawn, I am also contemplating anterior/posterior surgery for 70 deg. thoracic and 80 deg. lumbar curves. One of my disks also appears as if it is falling off the tower. I am 47 and have lost 4" in height since high school. The difference with me from what I've read of other's experience is that I don't have much in the way of pain now, but I know I will, maybe forever, once I have the surgery. Yet, if I do nothing, my curves will continue to progress and cause problems down the road. When is the right time to do it?
I have consulted with three surgeons and all three said they would fuse L4-T4 in two seperate front/back surgeries. I wouldn't expect a doctor to do a good job after standing and concentrating over 7 or 8 hours, but I'm really scared about going into surgery twice in one week.
My husband thinks I should do it in October, when his business slows down and he can take some time off. Easy for him to say, huh; he's not the one that's going to experience the pain and recuperation.
So, in the meantime, I am trying to get references on the doctor that participates with BCBS and reading about other people's experiences.

SkiAnn
01-07-2005, 06:45 PM
Hello again Dawn,
Attempted to send you an email, but encountered some interference. I had my surgery in Tucson, at UMC, Dr. Robert Dzioba was my surgeon and I am so satisfied with my choice and decision. In my oppion he is a remarkable surgeon, I didn't have any complications and am recovering very well and in very good time from what I have seen and read. If its possible, perhaps you could just have a consult with him to see how you feel and of course another opinion certainly couldn't hurt. There may be a treasure in your own back yard. Please accept this as just a suggestion......:>)
Regards,
Gayle

Denise Preuss
01-12-2005, 12:03 PM
Hi Dawn,

I had surgery on 7/30 at Barnes-Jewish with Dr. Lenke.

We interviewed 2 other surgeons, both closer to home (within driving distance) but it was no contest. We live in SW Virginia so it was worth it to us to fly to St. Louis for the best surgeon.

I wish that I had known back then just how much it was going to hurt to sit upright on an airplane 2 weeks after surgery. If you can swing it (or your insurance) I strongly suggest scheduling a LifFlight to bring you home. My flight home was nightmarish!

My contact with him was limited. He is not very personable, really. Most of my contact was with Kathy, his nurse liason.

My surgery took 13 hours, I was fused from T4 to the sacrum with both an anterior and posterior approach.

I don't remember the first week post-op. Lenke was very generous with pain med...he put me on a Morphine Pump.

What I'm trying to say is don't expect to feel "warm and fuzzy" with him but I think you can expect a top-notch surgical job.

Denise

codom
01-12-2005, 02:10 PM
Denise,
I see that you had posterior/anterior surgery done in one surgery. The surgeon in Michigan I'm looking at hiring prefers to do it in two surgeries, one week apart. (I will be fused T4-L4) Another surgeon I talked to said it is possible to do it in one surgery, but you want your surgeon (and team) to be fresh and 12-15 hours is too long and hard. He also preferred to do it in two surgeries 4 days apart.
I figure he better have me sign the release for both surgeries beforehand, because I probably won't want to go through it twice!
How are you doing now, 5 months later? Are you back to work? How old are you? How limited is your flexibility now? Can you look over your shoulder when driving? Can you reach the lower kitchen cabinets? How much pain do you still have? How many inches did you gain back in height? What degree were your curves before and after? You can e-mail me direct if you want at cathycdbg@yahoo.com

LindaRacine
01-12-2005, 03:18 PM
Hi Cathy...

I have a similar story. I had my fusion (T4-L3) almost 13 years ago. My surgeon gave me the choice of doing it in one day or staged a week apart. Like you, I was afraid they'd never get me into the second surgery, so I opted to have it all on one day.

While I had a good outcome, I would choose the staged procedure if I were to have to make the decision again today. Because my surgery was long and difficult, I was not breathing on my own when they removed the respirator. It had to be reinserted, and didn't get removed again until 4-1/2 days later. The surgeon has since stopped performing two long same day procedures, stating that it was just too difficult for him.

I run a support group for people with scoliosis and have visited many of them in the hospital between their two surgeries. It seems to me that it's easier on both the patient and the doctor if the procedures are staged.

Good luck!

Regards,
Linda

codom
01-12-2005, 03:27 PM
WOW! I can't believe the wealth of information available on this site. Thank you! I wish I lived in Northern Cal, so you could come visit me, too!

LindaRacine
01-12-2005, 03:49 PM
Me too. :-)

nora
01-16-2005, 03:31 PM
Hi Dawn,
I noticed in your post that you had "serious" stenosis. What are the syptoms of this? Nora

dawn
01-17-2005, 08:24 PM
Hi,
If you go to your search engine and type in stenosis symptoms many good sites will come up explaining in much detail.
dawn