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amae28
02-16-2007, 05:06 PM
Ok, I'm trying again... anyone had any experience or heard anything about him? He is located at Washington University at St. Louis.

Doreen
02-18-2007, 06:22 AM
I am also trying to find out more information about Dr. Lenke. I am from Tell City Indiana (southern tip of Indiana) and have had 8 scoliosis surgeries now getting ready for number 9 but my surgeon is unable to do this one and is referring me to Dr. Lenke. I see Dr. Lenke for the first time March 14 but I am trying to find out more about him. My current spine surgeon says he is the best of the best and he is actually planning on assisting him in the surgery because he feels he can learn a lot from Dr. Lenke. I have been doing a lot of research on him on the internet and see that he has a lot of medical publications and seems that he has a lot of awards but I would like to hear more from actual patients of his to see just what they think. Hope to find out more information. Good luck to you.

amae28
02-18-2007, 08:08 PM
well it's good to see that someone else is looking at him too. I think we are going to try and make an appointment with him sometime this spring for a second opinion. I agree, I wish there were more midwesterners here... some that have gone to see Dr. Lenke! Common people! I know your out there!

Doreen
02-19-2007, 06:07 AM
Have you checked out the website about him http://www.spinal-deformity-surgeon.com/. I have checked a lot about him on the internet and I know my spine surgeon here locally considers him the best there is. I have been going my local spine surgeon for a little over 16 years and I trust his judgement but I still would feel more comfortable hearing some patients perspectives concerning Dr. Lenke. If you are wanting to get into see him this spring you might not want to wait too long to schedule an appointment. My doctors office called 2 weeks before christmas and they finally got back to me later in January and the first they could get me in was the middle of April. They since have called back and rescheduled me for March 14.

Betty
02-19-2007, 10:08 PM
Hi, I'm a new member and thought I could give you some
information about Dr. Lenke. I'm 54 and had a 115 degree
kyphosis and 95 degree thorocolumbar scoliosis. Through
the years I was told that there wasn't anything that could
be done other than exercise and monitor the condition with
x-rays. So this is what I did until I turned 50, and the curves
started to progress more rapidly. At this time I found a
surgeon here in Michigan who began to monitor this progression.
He would take my x-rays with him to various orthopaedic
conventions and get opinions from several doctors. Half said
to fuse me where I was at, and half said to do nothing. My
surgeon wasn't satisfied with these answers because of my
discomfort due to crowding of internal organs.

He then told me about Dr. Lenke and assured me that he was
"the best" with this type of surgery, especially in older patients.
I've even heard he was "the best in the world!" At that point,
I thought it was worth the trip to St. Louis for a consultation.

So in February, 2006, I saw Dr. Lenke for the first time. He
was very straight-forward and honest in answering my long
list of questions. He informed me of the seriousness of my
condition, the risks with surgery, and what could happen if I
did nothing. That day was quite an awakening for me, as I
was told for so long that nothing could be done. But Dr. Lenke
said he could help me, and I was one of his younger patients!
I wished he was around with his expertise when I was 19. I
left that appointment knowing I had to make some very
important decisions.

I went home that day feeling numb. I realized if I was going
to have the surgery, it should be as soon as possible as I
wasn't getting any younger. It took me about a month of
soul-searching, research, talking to very supportive family
and friends, and much prayer before I decided to schedule
the surgery. The most comforting part of my decision was
knowing I found the right surgeon; there was never a doubt.

In March I called and schedule the surgery for July, 2006.
It took a little longer to get in as it was to be two 8-hour
surgeries, one day apart. I went back to St. Louis for my
pre-op testing in June and then the surgery in July. I was
fused from T-3 to the sacrum. I was in the hospital about
14 days and rehab about 7 days. Then home to Michigan.

Surgery was a success! I'm 7 months post-op today and
five inches taller. My family doc says I'm much healthier
post-op as I'm no longer taking blood pressure meds, which
I took for the past five years and no longer have acid reflux.
The recovery is a slow process which they prepared me for.
(Remember, I'm probably much older than many of you.)

The staff at Dr. Lenke's office and the professionals at
Barnes-Jewish Hospital and Rehab were excellent. They
were also very considerate and helpful to my husband who
stayed with me all that time.

Also, something that was very helpful in making my decision
to go with Dr. Lenke was when they gave me a list of his
patients to call that were my age and had a similar surgery.
They were all very helpful and very pleased with Dr. Lenke's
work.

Well I hope this helps anyone who is considering to have Dr.
Lenke as their surgeon. Personally, I feel he is "The Best" and
feel very blessed to have found him.

Good luck to you all. . . . . . Betty

Doreen
02-19-2007, 10:18 PM
Thank you Betty for your response. I do not know about the other person inquiring about Dr. Lenke but for myself you made me feel much much better. I have an initial appointment to see Dr. Lenke on March 14th and I am trying to find out all I can before I go to see him for the first time. This information is very much appreciated by me.

Thank you, Doreen

lelc2002@yahoo
02-20-2007, 06:21 AM
Betty---that is great to hear! but did you say you went up in Height 5 inches????what was your curve reduced to???? Lynne

Betty
02-20-2007, 08:15 AM
Hi Lynne!

When I got married 30 years ago, I was 5'9 and could look my husband in the
eye when standing. Through the years I kept loosing inches. When I saw
Dr. Lenke in February, 2006, they measured me at 5'3 1/2". That even
shocked me! After surgery, the first time I stood up, I was eye to eye with
my husband again. Everyone seemed so much shorter. Now I'm getting use
to my original height again and clothes fit so much better!

Also my kyphosis (hump) was quite large. Now it is totally gone. I wasn't
expecting such a great correction. My surgeon is awesome!

Have a Great Day...........Betty

CHRIS WBS
02-20-2007, 09:46 AM
Betty,

Congratulations on a very successful surgery. I have seen Dr. Lenke's associate, Dr. Bridwell. And I have been hearing the same thing. Both surgeons are considered the "cream of the top."

Chris

amae28
02-20-2007, 03:30 PM
Thank you all for the info. I think we are going to call and try to schedule a consult sometime this week hopefully for this spring. I know how it is though to get an appointment, I just would like to have it while all my pre op testing is fresh.
-Abbie

KI Jane
06-02-2007, 03:46 PM
I am glad to support Betty's recommendaton for Dr Lenke. He operated on me last November. I gained almost 3 inches--almost what I used to be. I also regained a waistline. My spine is straight as an arrow. He is truly a genius at what he does. He is very busy and businesslike and he tells it straight. As he reminded me in March, I always said this surgery is not for sissies. He said the xrays are excellent, I could take the brace off, and do whatever I could. And if I did too much I would pay for it. I could have used more guidance.

I recounted all my problems--pain, numbness and tingling, swelling,etc. All of which he said was quite normal and might go on for the year. He operated from the back and even fixed my stenosis problem while he was in there. I guess I was lucky because altho the first weeks were miserable--I gained 40 pounds of fluid and was checked by eye doctors, heart specialists, vascular people, I never had any of the serious complications. I am 69 and complications are much higher at my age and in a long fusion (T2 to the sacrum).

So I am back in the clothes I have not worn for years, weigh 110, 5 6", but cannot tie my shoe, bend over, etc. My balance is not good. I am working on all that and trust it will end. Lenke appears to be the best or among the top 2 or 3. You will have to wait to see him. His reputation assures that.

Best wishes to both of you.

babette71
06-18-2007, 01:05 PM
betty, doreen& abbey,
i am so happy i found your posts. i am going to see dr. lenke on june 27th.
betty, thank you for sharing your story....very uplifting!!
doreen and abbey how did your visits go?
abbey i'm a boston girl but i married a midwesterner and now i live in missouri!
hope to hear from you all!

n2starz
06-18-2007, 02:48 PM
Babette,

I had surgery January 12th with Dr. Lenke. I, as well as my family, have been very happy with him and his abilities. In fact, I will be seeing him on June 27th for my 6-month follow-up. If our appt times coincide, feel free to ask me any questions you might have!

Jennifer

Sherie
06-18-2007, 03:46 PM
Hi Jennifer

My daughter is scheduled for surgery with Dr. Lenke in Nov. Just wondering how many levels you were fused, if you have any post op pain or complications and how did you deal with travel? If you would prefer to correspond by email, that would be great too.

Glad to hear you are doing well.

Thanks

Doreen
06-18-2007, 04:11 PM
Hello to all of you I have my second appointment with Dr. Lenke on June 27th. This will be for my pre-op testing for my surgery scheduled with him on August 27th. I was very impressed with Dr. Lenke on my first appointment and my spine surgeon from Evansville Indiana thinks very highly of him. He is planning on being in on my surgery observing what Dr. Lenke is going to do. I will be so glad when this is over because I have been through 8 Previous fusion in the last 13 years and I know what I am in store for this time. All I want to do is get it over so I can start mending.

babette71
06-18-2007, 10:13 PM
hi jennifer!

i am to have x-rays on the 26th and then they told me to be in at 7am on the 27th.
i am not sure how long i will be there. but i hear it can be a long day. it would be so neat to meet someone who recently had surgery with dr. lenke!
i am hard to miss, i have red hair a tall bald (but fine) husband and my three kids will be there so we make quite a crew!
what time is your appt.?
another member doreen i think also posted that she will be there for her pre-op. i bet she would love to meet you also!?
hope to hear from you,
barb

babette71
06-18-2007, 10:19 PM
hi doreen,

wow you have been through a lot of surgeries. i so hope for you this is your final one!
you, jennifer and i all have appts. on the 27th with dr. lenke. maybe we will run into eachother. anyway if we don't let us know how your pre-op goes. you will be in my thoughts.
barb

Doreen
06-19-2007, 05:57 AM
I would love to meet both of you and discuss our problems. My appointment is at 11:00AM. I am not for sure yet if it is with Dr. Lenke or some of the pre-op appointments. I know I have appointments scheduled all day long so it will be a long day. I walk with a cane and wear glasses and am overweight. I have in the past lost 103 pounds and that is when they really found I had scoliosis greater than a 90 degree curve. I have had back pain all my life but all my family doctors always said my problem was because I was "too damn fat" and they never would go any further with checking so I felt so embarrased that I just learned to live with the problem until 16 years ago I fell down my stairs and hurt my back and they finally checked into it and that is when my all my fusions started. Lately I have been in surgery training and have taken off 56 pounds so far and I am in better shape for the upcoming surgery. I have a ways to go but it is a start. It is just hard to do when you cant exercise so I have been able to find friends with pools this summer and I have been exercising in the pool and it is helping. Now that I have rambled on and on once again I would love meeting someone else in my situation. I hope we all get to meet each other. Take care and it is so nice to find you all.
Doreen

n2starz
06-19-2007, 08:35 AM
I'll be in xrays around 7:30am with my appointment to follow shortly thereafter, I hope. The day can indeed be long as Dr. Lenke has many, many appointments scheduled and can get easily backlogged. I have to fly out early afternoon so I will probably be gone by noon. I will be there with my husband. We are both around 51/2 ft tall with brown hair. Mine I've cut short. I will certainly be looking for you both!
Jennifer

n2starz
06-19-2007, 08:49 AM
I was fused from T1-L1. Thankfully I have not had any post-op complications as of yet. The only set back I had was pulling a muscle in my back 2 months after the surgery when I had the flu. That was misery and quite frustrating since I had been doing so well! The pain I have now is gradually getting better. It's still early, but I'm assuming the pain I have is due to the surgery and recovery. The pain I used to have prior to the surgery I no longer experience, so I am happy about that. Every week I can feel my body/back getting stronger. So far I am glad I had the surgery and happy I did it now rather than later. As for travel, we drove 900 miles from Charleston to St. Louis. After my hospital stay, we stayed for a few more days in a Residence Inn before driving back. The drive back took a couple of days. The first day I think my family was cautious with giving me meds. I did not last long that day. The second day I hardly remember...I guess they were more liberal with the medication! :p We had brought a lot of pillows with us to help support me on the drive back and we also took the car with the better shocks and more maneuverable seats. Prior to the surgery, I think I was more concerned about the long car ride home than the operation itself, but in retrospect I realize I had little to worry about since I barely remember it. Just take a lot of stops/bathroom breaks and music (I think I made my husband listen to the same Josh Groban cd for 7 hours straight one day...apparently it helped calm me). Feel free to PM with any other questions you might have. We also kept a blog so I've attached the link. http://thecrookedtruth.blogspot.com/

Jennifer

Doreen
06-19-2007, 09:36 AM
I cannot stress to all of you enough how great it is to find others being treated by the same surgeon as I have. It is such a relief up until this point the only person I really had to talk about Dr. Lenke was my local spine surgeon (who over the years has turned into a family friend of ours). He has nothing but great admiration and respect for him but I really needed to talk to someone who has experienced him or will be experiencing from the other end of the knife. Thank you all so much for answering me.

I will keep in touch and look forward to meeting everyone.

Doreen

Sherie
06-19-2007, 10:28 AM
Thanks Jennifer, I sent you a PM.

I feel the same way Doreen. Another friend of mine found a man in his 50's who had surgery with Dr. Lenke and introduced us (by email). He was very nice and helpful. I'll contact him and see if he would post his experience here. He mentioned he had a long recovery, surgery was in 2005 and still having some residual pain but was very happy with Dr. Lenke. He said I should feel very hopeful, that we were in very competent hands. He really boosted my confidence.

babette71
06-20-2007, 09:31 PM
jennifer & doreen,

well it sounds like we have a good chance of seeing eachother! jennifer i went to your blog and read the WHOLE thing. by the way you are a great writer! i laughed, i cried! it was something to go back and then travel through your journey.
i am getting anxious for my appt. it seems like every day my pain increases.
i will look for you both on the 27th!

babette71
06-20-2007, 09:41 PM
sheri,

i noticed your post and i just wanted to say hi and i will be keeping your daughter in my prayers. dr. lenke seems to be the best so she is in great hands.
how is she feeling about the surgery? kids are amazing and heal so fast!
all my best to you as a mom! barb

Sherie
06-20-2007, 10:38 PM
Barb

Thank you so much. I appreciate all the prayers we can get. She's not one to discuss it much, that's her way of coping. When we finally decided it was time for surgery, I promised her we would find the best doctor that we could and I feel we've done that. I think we're so lucky to be within a reasonable distance of travel (2 hour nonstop flight).

Take care and the best to you too.

Doreen
06-21-2007, 08:25 AM
Hello all. Just received a call from Dr. Lenke's nurse yesterday confirming my appointment next Wednesday June 27th. My appointment with Dr. Lenke is scheduled for 12:20 and then I have a Pulmonary Functions test scheduled for 3:30 and other xrays and blood work scheduled in between. I don't know if it will work I that I can meet any of you but I hope so. It is going to be a long day for me as well. I am driving over with a friend of mine and it takes us about 3 1/2 hours depending on traffic and road constructions. Hope to see you all then if it works out.
Doreen

spndrift
06-21-2007, 08:28 PM
I was operated on by Dr Lenke in October 2005. I am in my mid 50’s and unlike most of you, I am a male.

As someone else posted on this thread, Dr Lenke is extremely highly regarded and is probably one of the best Scoliosis surgeons in the US. When I was first diagnosed with Scoliosis in 1984, my father-in-law, who was an Orthopedic surgeon for nearly 50 years, and was an FRCS, a Fellow of the Royal College of Surgeons, advised me to never let anyone ‘cut my back’, as he had not seen many (maybe any ?) successful Scoliosis surgeries. So my mindset was always to avoid any back surgery.

However, by 2004, my curves had grown quite dramatically, and according to my x-rays, were now continuing to curve at about 1 degree per month ! At this time I was in a lot of pain, had tried everything else – bracing, acupuncture, acupressure, medications, Yoga, trigger point injections, RFA, Feldenkrais etc etc – and had seen an Orthopedic surgeon here on the West Coast who told me that I would have to undergo this dramatic surgery which would probably take about 16 hours.

I did an enormous amount of research, went for second and third opinions, and was fortunate to meet up with a surgical nurse who told me, in no uncertain terms, that if I had to have this surgery, that I should only have the operation done by someone who had done ‘hundreds of these surgeries’. I asked my Orthopod how many of these he had done and he told me about 30 or 35. I am fortunate to have a number of doctors in my family, one of whom referred me to Dr Lenke, who has, indeed, performed hundreds of these operations.

Dr Lenke examined me and was very clear and forthright in his opinion about my situation. I needed to have the surgery, and shouldn’t wait too long as my curves were obviously growing quite rapidly. I really appreciated his honesty and directness in evaluating my situation. Even though I was still dead set against the surgery, I realized that I could not continue on in the same manner, and so after much research and thought, and many conversations with my family, I scheduled the surgery. Dr Lenke’s staff was very helpful to me in patiently answering all my questions, and dealing with all my concerns prior to the surgery.

Dr Lenke had assured me that he could definitely stop my curves but that I needed to understand that there was still some possibility that I would still have some pain after the surgery. He actually told me that there was an 80% chance that I would have no pain, a 10% chance that I would have the same amount of pain, and a 10% chance that I would be in even more pain after the surgery. I really appreciated his honest assessment. Initially, the fusion was planned from T4-S1. I saw him a week prior to the surgery and he had me undergo some further tests to determine whether the T4-S1 fusion was still applicable. After the tests were completed, he determined that a fusion from T4-L4 would be appropriate, thus leaving me with a little flexibility at the lower end of my spine. He had initially estimated that the surgery would take about 9–10 hours, but after the tests were done, and when he saw how thin I was at the time, he re-estimated the time at about 6-7 hours, which was how it turned out.

I had seen a video of Dr Lenke performing this surgery and would suggest that anyone who has to undergo this procedure should see this. This man is a maestro !

I had an excellent surgical result and although I still do have some pain, I do feel that I made the correct decision in having the surgery, and feel particularly fortunate to have had Dr Lenke as my surgeon. I would suggest that anyone who has to have the surgery should feel fortunate to be in his good hands !

Best wishes to all of you.

Doreen
06-22-2007, 11:18 AM
I am so glad to hear from another patient of Dr. Lenke's who had good luck. It is so nice to hear from you all and really comforting. It helps me feel like I have made a good choice to go to Dr. Lenke.

n2starz
06-22-2007, 11:34 AM
I just firmed up my times. Looks like I'll be in xrays as early as possible - 7am, so Barb I might see you there. Appointment will follow some time after. I need to be on my way out of the hospital at noon to make a flight back home.

Also, a warning for you both in case you are unaware (as I was my first visit), Dr. Lenke will likely get VERY backed up in his appointments. I had to wait 2.5 hours (for a morning appt) in the waiting room (which could really use some sprucing up and entertainment) before I got moved into a room. Then I had to wait almost another hour for Dr. Lenke to come in. Apparently, this is typical. So bring toys for the kids Barb! This almost detered me from selecting Dr. Lenke as my surgeon, but then I reminded myself that I am choosing a surgeon based on experience and expertise rather than waiting time.

Jennifer

n2starz
06-22-2007, 11:41 AM
I'm glad you enjoyed my blog. One of these days I'm going to have to go back and read it, but right now it is too close to home. Maybe for my one year post-op anniversary?

You write that your pain is increasing - that must be frustrating and I'm sorry to hear it. On a positive note though, once you have your surgery date scheduled, you'll be glad and/or comforted to have that pain, or at least I was. There were some stretches of days when my pain was not as bad, which would then cause me to question my decision to have surgery. It's such a major event that your mind will start to play games with you. In the month leading up to my surgery date, I found it a relief to be in pain - it kept me from wavering at a time when I needed to be at my strongest.

Jennifer

Doreen
06-22-2007, 02:11 PM
Jennifer,
Thanks for the warning about the wait. I have already had my first appointment with Dr. Lenke in March and I knew nothing about how his schedule ran but I assumed it was probably like my local spine surgeon who usually runs 5-6 hours behind on office visits. All of his long term patients know to take plenty of things along to occupy your time. I usually have a back pack with all kinds of things including a bottle of water. It is kinda of funny to listen to the very new patients complain about the wait and hope it is better the next time or they are going some where else. Well these doctors are so good and in such demand it is hard to work all the people in. I never mind waiting because when it is finally my turn they always seem to give me all the time I need and that is all I am asking for not to be rushed when he gets to me. After all patience is a virtue but it is hard when you are in pain to remember.

Take care all of you.

Doreen

babette71
06-22-2007, 09:48 PM
hi jennifer,

thank you for the heads up on the wait!!! i'm thinking monopoly! i am going up the day before to get my x-rays out of the way. my children and i are flying out that eve. at 6pm. i will need to be at the airport by 3:30-4. hopefully that will be enough time.
i haven't been home to boston in 2 years so i kinda spontaneously booked these tickets. i think i'm running and hiding!!
i completely understand what you said about almost finding relief in the pain! so weird but then you realize i must do something.
having been through this when i was 11, fearless and carefree is soooo different than as a wife and a mother.
barb

babette71
06-22-2007, 09:56 PM
spndrift,

thank you for posting your experience with dr. lenke. it is encouraging to hear of another successful surgery! others have said as you did that he is very straight forward. i am anxious to hear his opinion.
take care, barb

Jacksmom
07-10-2007, 09:13 PM
We saw him last week for our infant son. His staff is amazing.

CHRIS WBS
07-11-2007, 08:34 AM
Hi Jack's Mom,

I just have to comment on what an adorable baby you have! That is the cutest picture of your little tyke wearing his brace.

Chris

Doreen
07-11-2007, 09:41 AM
Loved the picture. I am a patient also of Dr. Lenke's and I am getting ready to have a long revision surgery August 27th. I think Dr. Lenke and his entire staff are just wonderful.

Doreen

babette71
07-12-2007, 02:08 PM
your boy is PRECIOUS!! dr. lenke is great. all my best to you!
barb

amae28
07-13-2007, 01:05 PM
wow i did not realize there had been so many replies about dr. Lenke on this post since i wrote it in february!! It's so good to hear from so many patients of his and your experiences. I just thought i'd give an update on what i've been doing... basically i decided not to schedule surgery for this summer, as my curves are, although quite uncomfortable, very borderline. I didn't have an appointment with dr. lenke either after that decision. I am really stumped what to do now, as my current dr. h as just told me to have my curves rechecked in two years (even thought they have been progressing). I have about a two-year window in which i can have surgery if I decide to, as after that I will be in medical school and I can't be having surgery during that or anytime afterwards.
I think i'm going to have xrays redone sometime in the next year and see what that shows and go from there. If I decide to have surgery though I will definitely be seeing dr. Lenke to get his opinion on things!

Jacksmom
07-14-2007, 03:11 PM
Thank you all for your kind compliments on my handsome little guy :)

Best of luck to you - we've decided to not go the surgical route right now either, but if that time should come we definitely know whose hands Jack will be in!!!

amae28
07-24-2007, 01:25 PM
Hello to everyone that posted on this before again... I just wanted to say that I just made an appointment for a consult with Dr. Lenke on Wednesday September 12th at 1pm. I live in Kansas City, Kansas, so it's about a 4 hour drive. Unfortunately, my classes will have started at KU and I will be missing a full day (my busiest day) of classes. His nurse told me that the only day he is in clinic is Wednesdays, so I guess I'll just have to deal with it. oh well, I was pretty impressed that I could get in that quick. Anyone else have appointments around then?

Karen Ocker
07-25-2007, 06:25 PM
If you are really concerned about missing classes that day you could always tell Dr. Lenke's office to put you in if there is a cancellation. :cool:

amae28
07-25-2007, 07:49 PM
well i have the same classes every wednesday, from 8am - 5:20pm, so no matter which wednesday it is, and i guess my consult is only possible on a wednesday according to the nurse, then i will miss a heck of a lot of class. I think i'm just going to have to make some really good friends in my classes this semester, lol.

phyllis
07-29-2007, 11:45 PM
Hello Betty, and others,
I have heard so many good things about Dr.Lenke and would love to talk with you and others who have had surgery with him. I live in Ann Arbor, Michigan. I am 70 years old and am considering a second surgery because the lower half of my spine did not fuse from a Jan.2oo6 surgery to correct a 60 degree curve. The surgeon, Glenn Minster in Detroit, fused from T10-S1 and also corrected some rotation. However, I went into the surgery with a forward tilt and that was not corrected, and I have a 12cm. sagittal imbalance.

I went for a second opinion to Stanley Lee at U Michigan to ask about correcting the imbalance, and that's when I learned that my lower spine had not fused. Dr. MInster never told me that.
At my first appointment, Lee described the surgery to refuse my spine,saying that the hardware was moving around because of the non fusion and that could pose problems, including increasing the imbalance. But at my second appt, he said let's observe you and not do surgery now.
He also told me that correcting the sagittal imbalance was a VERY risky operation and that the risks out weigh the benefits. However, I see lots of people on this forum who are having osteotomies for flatback. I would like to hear from you.
I am getting very mixed messages from Lee. I feel really anxious about doing anything to to cause further non fusion and also feeling like I will have to live with the flatback.

Any information anyone can give me about your experiences and Dr. Lenke would be helpful. I also hear good things about Dr. Boachie and La Grone. None of them are near where I live but I would be willing to go to the best doctor.
Phyllis Ponvert

Doreen
07-30-2007, 06:58 AM
I am currently a patient of Dr. Lenke's. He has not yet done surgery on my but I am going to have my surgery on August 27. I am from southern Indiana and this will be my 9th surgery over the past 16 years. I am fused from T1 to S1 for an original curve of 95 degrees and somewhere along the line one of my fusions never got hard and over the years of movement two of my rods broke and thus my curve has gotten worse. The problem now is that after all the surgeries my spinal canal has gotten so small that there is hardly any room for anyone to work on it. My spine surgeon at Evansville Indiana said it is too complicated for him to do and he really needed to send me to someone who is the best at revisions and very complicated cases so that is why I am going to Dr. Lenke. My spine surgeon said Dr. Lenke is the spine surgeon's specialist and he handles extremely complicated cases. My spine surgeon from Evansville is going to go with me to the surgery and observe Dr. Lenke. He said he is an amazing surgeon. I cannot say enough nice things about his office staff. They are all wonderful and so encouraging and caring. Feel free to contact my anytime if you would like. You can send me a private message or email at my home email dlamar@psci.net

Doreen

phyllis
07-30-2007, 11:38 AM
Hello Doreen,
From what I have read about Dr. Lenke, you are in the best of hands.
You described the movment of the non fused part of your spine causing the rods to break and the curve and imbalance to get worse. That's what I am afraid of, but the MD at the U of Michigan wants to wait. Until the rod breaks???????
You are a brave woman with 8 surgeries and the 9th to go.
My email is Phyllis2007@earthlink.net if you would like to contact me.
This forum is amazing: I have learned so much about many people's determination to never give up and "live with it." Which of course is a viable option and each person is different.

Regards, Phyllis

phyllis
08-10-2007, 10:21 PM
Hello Betty, I see you also live in Michigan. I live in Ann Arbor and would love to talk with you about your surgery with Dr. Lenke. MY phone # is 734-662-9186. Regards, phyllis ponvert

Betty
08-12-2007, 06:25 PM
Hi Phyllis,

I would be very happy to speak with you regarding my surgery with Dr. Lenke.
I tried calling today, but missed you. I'll keep trying!

Infact, I'm heading back to St. Louis next week for my one year post-op visit
with him. I was fortunate that my doctor here in Michigan monitored my
progress (sending x-rays and info to Dr. Lenke) for the first year. Saved me
a lot of traveling! However, I'll be happy to see Dr. Lenke again and show him the great job he did.

By the way, I live about three miles from Lake Michigan, just north of Muskegon. I'll be calling you soon!

Sincerely, Betty

Betty
08-12-2007, 06:39 PM
Hi Doreen,

Just saw where your surgery is coming up August 27th. I want to wish you the very best and know you are in excellent hands!

Take care, Betty

Doreen
08-13-2007, 07:28 AM
Thank you so much Betty for the support and well wishes. I have been putting this upcoming surgery out of my mind but as it gets closer I am starting to get very nervous. I just keep trying to get it off of my mind. My local spine surgeon has been very good and keeps offering me support and he is going to be going over for the surgery also. I just will be glad to get this over with. I have been through this 8 times before but I was 16 years younger and didnt have all the other health issues that I have developed over the years. I have been busy trying to get in better health by working out at a friends pool for the last 3 months. Trying to get my lung functions better and some more movement in my back so the correction can be better. The more I hear about Dr. Lenke the better I feel. I really feel that I am going to the best place I could be going to. Dr. Lenke and the entire staff seem so nice and comforting. I just will be glad when it is over and I can get home to recuperate.

Doreen

dianeh
08-13-2007, 01:23 PM
Someone mentioned that they had seen a video of Dr. Lenke performing surgery. Any way I could buy a copy?

dianeh

Ken
08-18-2007, 12:17 AM
The video I think your are talking about is on Dr. Lenke's website...

btw: can I ask how your mobility is being fused T3 - sacrum?

I am currently T2-L2, but proposed revision is T2-sacrum.....

Thanks, any info will be appreciated!! TY!!
Ken.

Doreen
08-25-2007, 07:11 AM
Just thought I would let everyone know that yesterday I was in St. Louis for my preop visit and meeting with the anethesiologist and to get a triple central line inserted into my collarbone. My surgery is scheduled for Monday August 27th. I came home late last night and on Sunday my family and a friend will be going back to St. Louis for this latest trek of mine. This is my 9th spinal fusion in the last 17 years and I have had this one scheduled for almost a year. At first when it was scheduled I really didnt think a thing about it but in the last two days as it gets closer I am really having a lot of reservations about this surgery. I will be glad when it is this time next week. Anyway just wanted to let you all know that yesterday at Barnes Jewish in St. Louis for all of my testing the entire staff I came into contact with were of the highest quality and most caring that I have encountered in all of my years of surgeries and testing at any hospital. Anyway I just wanted to bring everyone up to date and I will post after I am able to just to let everyone know about how my final successful surgery went!

Doreen

amae28
09-10-2007, 06:34 PM
just thought that i'd post on this thread that my appointment with dr. Lenke is on wednesday the 12th! IF anyone has any advice besides that it is a long wait, let me know!

laurieg6
09-10-2007, 07:56 PM
It's probably a good idea to have all your questions written down so you don't forget to ask any of them.

dianeh
10-21-2007, 04:44 PM
Hi Ken,

Thanks for the info on the video. I've been in Germany on an extended business trip with my husband and have been offline for about 2 months.
My flexibility after almost 2 years of recovery is excellent, although it is a little difficult to put on socks and tie my shoes, especially when I'm tired. I'm finding tho that all this is still improving month by month. Good luck!

dhansen

Doreen
12-30-2007, 12:01 PM
Hi this is Doreen and yes indeed I have had my surgery by Dr. Lenke on August 27, 2007. Everthing that Dr. Lenke had to do turned out beautiful. However due to my serverity and number of prior surgeries and current health coditions, it was not an easy surgery. Needless to say I am now starting my 5th hospital stay. I have not been out of a hospital since I checked in on August 27th. I ended up having one 12 hour surgery for the revision, then at the end of that it was found that because of all the prior surgeries there was so much scare tissue that they had cut into my spinal canal and fluid was leaking so they had to immediatly take me back into another 4 hour surgery to repair that. I was then found out 2 days later if was still leaking so into surgery again to repair that. I was on a vent and have finally just 2 weeks ago weaned off of it. still have a tracke in and a speaking valve but hope that will be gone soon. Actually they had trouble weaning me off of the tracke and found out that somewhere along the line my cervical disks 3,4,5,6 had been damage and were putting pressure on my spinal cord causeing my diaphram and lungs to be paralizd. Had to have surgey at a different hospital to correct that. I am now back in evansvilleindiana at at rehab hospital for 4 weeks of intense rehab because i am unable to stand or get moving because of laying in bed for so my months. Well that is why I havent been on in awhile. I feel like all of my probems were just flukes. My back however is real straight and not causing me any pain, Thank God
Good luck to everyone else,
Doreen

bj1961
01-17-2008, 05:10 PM
Hi all! I am a new member here. I too have been looking for additional information on Dr. Lenke. I have kyphosis with an 83* curve. My personal physician has told me that it is time to consider surgery. I went to a Dr. in Kansas City, he was pompas a** and I wont go back. I work for an ambulatory surgery center in south central Kansas, our company has 2 centers in St. Louis. One of which is a spinal surgery center. I have contact ed the Clinical Director of that center to pick her brain on what she could find out for me. Dr. Lenke does not do procedures at her center, but she was able to speak with a nurse that has scrubbed in on cases with him in the past and the word there is that Dr. Lenke is most definately one of the best in his field, and the recommendation to see him came very highly. I do believe that I will be calling his office to schedule an appointment. But I have to quit smoking first. I am going to do this the right way. The surgery is not something to take lightly, it is a very complex proceedure. It is one that I have been considering for over 6 years, while during those 6 years I have lost 1 1/4 inches in highth and my curvature has increased by 16*. I am currently taking narcotic meds to control my pain, and that only dulls it enough to keep me functioning. This web site is where I got Dr. Lenke's name to begin with, I was just lucky and have a few connections in St. Lois where I could get a little bit of inside information. I would be interested in talking to patients of Dr. Lenke, especially those with kyphosis

Sherie
01-17-2008, 08:56 PM
Hi bj

My daughter just had surgery with Dr. Lenke Nov. 15 and she's doing FANTASTIC. We're thrilled with the results. We flew from Houston to see him. She's not a complicated case but is 15 and has a long fusion that she will have to live with her lifetime. I did a lot of research and I think he's tops in the field. We saw a local scoliosis surgeon who had the highest praises for him too. I would be happy to talk to you more about our experience and show you before and after photos, just send me a PM.

amae28
01-21-2008, 04:18 PM
bj,

while i don't have kyphosis to the degree that you do, my combo of kyphosis and scoliosis has led me to the decision of having surgery with Dr. Lenke. He is such an amazing doctor and his confidence level is through the roof. If you are looking for some answers, go see him! I'd be worth it if you are having problems. He found a lot of problems with me that none of the other 2 doctors i saw even mentioned, including the kyphosis and block vertebrae. Good luck, if you have any questions feel free to pm me also.

bj1961
02-06-2008, 05:10 PM
I know so many of us have had the disappointment of Dr.'s telling us that we have to live with our pain and frustration of increasing limitations. I decided to put out some feelers on Dr. Lenke. I wrote him a letter. I sumarized my condition, the increasing degree of my kyphosis, the increasing amount of pain. The daily decline in my activities and my fear of disability due to my back. I told him that I had done my research, that I knew how complex the surgery was, that I was aware of the chances that my pain would not be reduced. I also told him that I had thought hard about this for 6 years and that I knew that without the surgery, the chances that my pain would increase was greater, and that without the surgery, disability would in fact become a reality. I asked him that if he thought that he could consider me a surgical candidate to have someone from his office to contact me to schedule an appointment. That he needed to make a move before I would drive 12 hours to be shot down again with the words to "live with it". I got a call today from his nurse. He told her to get me in to the office for a consultation, that he felt that I was most definately a candidate for surgery. I have an appointment with Dr. Lenke on 2-27.

jillw
02-07-2008, 10:05 AM
bj1961, Good luck with your appointment!

Wishing
02-21-2008, 04:54 PM
I am 63 y.o. and have had long standing scoliosis since age of 10. I had fusion of my thoracic spine at age 16 without instrumentation in 1962 and a plaster body cast for a year. The cast broke and I lost a lot of correction and now have 91 degree thoracic and 68 degree lumbar curve. In 1967, I asked the Chief of Orthopedics at UCLA if anything could be done for me and was told that nothing could be done, and that I had to just live with it. I got depressed over my situation. In 1983, I had the good fortune to get referred to Dr. Edgar Dawson at UCLA (now deceased). He attempted a revision but abandoned the attempt upon being advised by the neurosurgeon that the procedure was too risky. He then did a 6-7 rib thoracoplasty to reduce a large thoracic hump. He then referred me to Twin Cities Scoliois Center in Minneapolis, Minn. The surgeon there advised me that the A/P procedure then being performed was a 3 stage procedure which patients had difficulty tolerating (that was in 1987) and performed another 3 rib thoracoplasty. These surgeries significantly improved my appearance and my life but still left me with severe spinal curvature. I was eventually diagnosed with severe restrictive lung disease (FVC 39%) and use a Bi-Pap at night for episodes of severe headaches and blood pressure spikes (low O2 and elevated CO2 while
sleeping). The Bi-Pap works wonders and controls both of these problems. I gave up on getting help for my scoliosis because I thought there was none out there. Eventually, I got referreed to UCSF for consultation for a revision with instrumentation and was told that the risks outweighed the benefits for my case, primarily because of my pulmonary status. I was referred then to Dr. Lenke in St. Louis.
My appointment with Dr. Lenke was yesterday and for the first time in many, many years I have hope. There was a wait in the clinic but it was so worth it. Dr. Lenke gave me his undivided attention, reviewed all the reports, X-rays, etc. and calmly and unhurriedly answered all my questions. He spoke of the risks of surgery and benefits and without pressure let me decide whether or not I wanted surgery. I had read alot of literature and knew alot of what to expect and told Dr. Lenke that I was willing to take the risks as I was on a down hill course with my pulmonary status and had a shortened longevity. I scheduled surgery for June. His nurse was very helpful and also answered alot of questions. I feel very fortunate. I have had a 50 year wait for this surgery with many years of giving up. I now have hope of having an active and functional old age.

Good Luck, bj1961 with your appt.

Doreen: Are you out there? How are you doing? I have been following your posts. Are you out of rehab? Are you home? How is your breathing? I hope you are doing well.

CHRIS WBS
02-22-2008, 09:15 AM
I’m so thrilled for you that after all these years you found a doctor who has given you hope for a brighter future. I believe you were guided to Dr. Lenke and I will keep you in my prayers that your surgery is a huge success.

Chris

Sherie
02-22-2008, 10:06 AM
Hi Wishing

I'm so excited for you. We were supposed to be there yesterday too but our flight was cancelled due to bad weather there in St. Louis. Did you fly in the day before? We're rescheduled for March 6.

I felt the same with Dr. Lenke, his demeanor puts you at ease. I know your case is so much more difficult than my daughter's but it was very important to me to find a doctor that I had 100% confidence in because I am making decisions for my daughter that can't be undone. I'm very happy for you that you have found someone to help you. He did an awesome job on my daughter, the sagittal contouring is perfect. You can see her xrays here:

http://www.scoliosis.org/forum/forumdisplay.php?f=98&page=2&sort=lastpost&order=&pp=25&daysprune=-1

Look for my name and the thread "Pre and post op xrays". If you're interested in seeing photos, PM me. Best wishes!

Wishing
02-22-2008, 03:25 PM
Thank you Chris WBS for your best wishes. I also wish you the best in your search for the right treatment. I know that I am a higher risk patient, even in the best of hands, but I also know that I have a 100% chance of severe problems if I do nothing. I feel very fortunate to have found such a gifted surgeon to help me.

Thank you Sherie for your best wishes and for sharing about Sheena's wonderful outcome and correction. Her X-ray result is beautiful. She must be thrilled and has been spared the agony of going through life with a major deformity. She can now enjoy her beautiful new figure. You are such a wonderful mother to Sheena.
Yes, I flew in the day before my appointment from Los Angeles and squeezed into St.Louis before the storm. Stayed at Parkway Hotel across the street which had a special rate for patients.
Again, thank you both for your support and sharing.

bj1961
02-29-2008, 05:07 PM
Well, I to now join the ranks of people that are impressed with Dr. Lenke's approach to his patients. My appointment on Wednesday was good. He took all the time in the world with me as well going over all of my xrays and my mri's. Answered all of our questions. My surgery is scheduled for August 18th. It was a long day for us too. We left home at 5:30 in the morning to drive in for my appointment. It is a 7 hour drive, I know a lot of you have come much further. I think it is worth it. Kelly, his nurse spent just as much time with us going over in detail everything. August seems like a long time away, yet, the last 6 years havent been a lot of fun, 6 more months will be like a walk in the park!!

bj1961
02-29-2008, 05:09 PM
Thank you wishing and sherry and all of you! Prayers get us all through!!

Wishing
02-29-2008, 06:37 PM
Dear bj1961,

I'm very glad for you that you had a successful appointment and wish you the very best for your surgery. Yes, it is amazing that such a busy, gifted surgeon treats you like he has all the time in the world for you and treats you like you are his only patient. I feel so peaceful and content with my decision to have the surgery. I know I'm in the right hands and the right place. I thought of you last Wednesday and hoping everything was going well. Now, it's like waiting for Christmas to get here.

Doreen
04-25-2008, 12:05 PM
I had my surgery August 27th in St. Louis. This actual surgery turned out fantastic however there have been many things that have gone wrong and needless to say i have never made it home yet and I am now just been transferred to my 5th hospital. I have been transfered to Kindred healthcare in Louisiville Ky for intensive rehab to get off of a ventalator which i have been on for 8 months as a result of the surgery. Also I have been on kindney dialysis since I went into renal failure since my surgery. But my back has never been straighter and I hope in a couple of more months to be weaned off the vent and to go home. Of course I will still have to do dialysis 3 days a week but I am still alive. Good luck to all. Also I was unable to stand or even walk after my surgery and now I am able to walk with the help of a walker so that is getting better. Take care all Doreen Lamar

CHRIS WBS
04-25-2008, 02:23 PM
Doreen,

You have been through so much. If I recall correctly, this was about your tenth surgery. You are a real heroine in my book. Thank you so much for letting us know how you are doing. I will be offering my Mass on Sunday solely for your intentions. May God bless you with improving health.

Chris

Wishing
04-25-2008, 04:44 PM
Dear Doreen,

It is great to hear from you and to hear how you are doing. I am including you in my daily prayers for a full recovery so that you can enjoy your beautiful new back. Just visualize being off that vent., breathing well, off that dialysis and having yourself in full health. We are all pulling for you and wish you the very best of health and happiness. Full recovery can happen.
Thank you Doreen for keeping us posted. God bless you and the very best to you.

Doreen
05-02-2008, 01:34 PM
Thank you all for all your prayers. I am hoping I won't have to be at this hospital for too many more months. I sure can use all the prayers I can get. People ask me if I would do this again and I tell them to ask me after I finally get home. But actually right now I feel the good lord had a reason for what has has happened to me. Through the course of the last months I have some wonderful people of which I would never have had the opportunity to meet. Some of these people have become some very close friends to me and this would not have happened had these problems not had happened to me. So in a way I lucky this happened to me. That is one way to look at it. It helps me get through the day.

Susie*Bee
05-03-2008, 12:50 PM
Doreen-- I sent you a PM yesterday, but wasn't sure if you'd see it or not. Sometimes they're hard to see that you have one, if you don't get notified. (I forget to look up in the little PM place... :rolleyes: )