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PeggyS
08-05-2013, 06:07 AM
Columbus, OH doesn't seem to have well-known adult scoliosis surgeons. I'm wondering how far some people have traveled and how did the logistics work out? Did you stay in rehab in the same location as surgery? How did you tolerate the trip home? How frequent are follow up appointments? Thanks!
Peg

Christyne
08-05-2013, 03:17 PM
Hi Peggy,

I had surgery in Columbus on May 9 of this year. I had Harrington rods from 25 years ago however those weren't the problem. I have an S curve and the bottom curve had been progressing unbeknownst to me (I hadn't been measured since I was 20). Lo and behold it had increased almost 20 degrees in that time frame (I am now 42).

Anyway, my dr. put in titanium rods fusing T11-S1. However, due to the Harrington Rods being stainless steel and the new ones titanium, he had to cut part of the old HR's and remove them so the new rods wouldn't touch the old and produce a current.

11 1/2 hours later I was out of surgery. Now, I did suffer major complications of which I am having another surgery on September 5 to correct but it has nothing to do with the dr. and the surgery. I have ended up with a hunched back, tighter than all get-out hamstrings, shoulders scrunched forward, lost all of my "girls" of which I happened to have liked :) and most of all, it left me with a lump on my back. The top of my new rods is poking and making a lump (I've been assured it won't poke through my skin) because of course the rods don't bend where I am hunching over my shoulders. To give you an idea, I literally look like a little old lady when I walk. It has totally diminished my self-esteem and now I have none.

Anyway, I guess what I wanted to say is maybe Columbus doesn't have world-renowned doctors but they do have spinal fusion doctors and they've got one heck of a good reputation as well.

I'm not trying to be defensive or come across that way but I guess if you feel comfortable with the doctor as I did because I did my research on him. I pretty much know his routine and I know his staff on a more personal level, it feels. They have always been as though they care, and I genuinely believe they do, and therefore want to be good at what they do and I believe they are. Are they the best in the world? Probably not but again, they're good enough for me. :)


Oh and as far as where in relation to Columbus, I am 1 1/2 hours south; not bad I don't think. I had my mom drive me to our house where my husband and son were. I stopped there to see our son, my cat :) and of course use the bathroom. Then my husband drove me to Galliapolis for 10 days of rehab at Holzer. I absolutely loved them as well. I will tell you I did have a "not nice" night nurse the last week I was there (btw, I never left ICU for more than 8 hours my whole stay) who decided it was totally appropriate to come into my room in the middle of the night, flip on the light switch to work on his computer notes and then wonders why I wake up, can't get back to sleep, start to be in pain (again), and have to ask for another pain pill. Yeah, I didn't like him so well but all of the others were great!

You can always send me a pm and I'd be happy to give you any information on who my doctor is.

Sincerely,
Christyne

jrnyc
08-05-2013, 04:03 PM
i am so sorry to read that you need another surgery..
if i may ask...
what DID cause the complication...? did they figure it out?

i hope the next surgery goes smoothly and it is the last one you need...

jess...and Sparky

susancook
08-06-2013, 02:40 AM
Hi! I traveled 13 hours [that's without stops] for my surgery. I chose to go w/ my second opinion MD as she totally inspired me and I could trust her w/ my life. There is an excellent spinal surgeon about 1 hour from my house [my first opinion], but I was constantly having challenges getting messages and questions to him through his PA.

I had a 2 day surgery and was in the hospital for 9 days, then in rehab for 7 days. I went to my son's family's home for a month and saw my surgeon for the 6 week checkup, then we drove back home in 2 days. I bought a 6" comfy mattress from Costco, put it in the back of the Highlander, took my drugs and I did just fine.

I have chosen to go back to San Francisco for all of my follow-ups, but was told that I could get some xrays locally and send them to her. Surgeons vary of what they want, but most are flexible if you live a distance.

Do what you need to do to get the best care that you can on your insurance. Some people on the forum flew home, so read what they had to say. I remember at least one woman who said that it was miserable.

Good luck!
Susan

Christyne
08-06-2013, 06:06 AM
Unfortunately, no he really didn't say what caused it. Honestly, at this point, I don't give a rats behind what caused it, I just want it fixed. It's painful. YUCK!!!

Thank you for the kind words and encouragement, I so appreciate it. :)

Thanks again,
Christyne

Doreen1
08-06-2013, 01:54 PM
Hi Peg,

Traveled from Atlanta to St. Louis where Dr. Lenke did my surgery. Drove both ways, no rehab, stay in hospital 6 days, then stayed in campus housing, The Lodge, at Washington University which is where Barnes Jewish Hospital is located for 5 days. We wanted access to a kitchen which a hotel room couldn't provide, which is why we opted for The Lodge. Flew back for 2 follow ups since 2011 and will fly back late this year or early next year for my 2 year follow up. I don't remember the trip home because of the heavy meds I was on. Dr. Lenke only allowed 4 hours per day driving back home and said for us to stop every hour so I could get out and walk. Day 1 heading home we stayed in Clarksville, TN which was the halfway point to home and also 4 hours from St. Louis. Day 2 arrived home after another 4 hour drive.

Flights are pretty inexpensive from ATL to STL.



Columbus, OH doesn't seem to have well-known adult scoliosis surgeons. I'm wondering how far some people have traveled and how did the logistics work out? Did you stay in rehab in the same location as surgery? How did you tolerate the trip home? How frequent are follow up appointments? Thanks!
Peg

Confusedmom
08-07-2013, 02:16 AM
Drove 4 hours to St. Louis.

babyboomer16
08-07-2013, 05:53 PM
Hi, Drove 13hrs. to have surgery from Dr. Lenke in St. Louis, Mo. It is a long trip and we have driven it
around six times for initial appt. plus surgery,follow ups, emergency appt., another revision surgery and follow up, it was all worth it! We do live in central So. Dak. And we break the trip up by staying one night in Lawrence Ks. with my son and his wife. I was only in the hospital five days for both surgeries. I fell and broke a rod causing the revision surgery. So far ~~so good! Linda



K

PeggyS
08-08-2013, 06:56 PM
Aside from the obvious: being away from local friends & family, distance from dr if/when questions arise after going home, expenses . . . What are other down sides I need to be aware of as far as logistics go? I just want to have my eyes wide open!
Peg

hasteffen
08-12-2013, 06:50 PM
Hi, Peg. I am from North Carolina and had surgery with Dr. Lenke in St. Louis. I am so glad that I traveled to have him do my surgery. My results have been exceptional.
Travel expenses included hotel stay, airfare, food.
I stayed in the hotel a week after being released from the hospital. I remember almost none of it. Bits and pieces but nothing of importance! As far as my plane trip home... I did fine, I guess, since I don't remember even getting on the plane. It was the first and only time I have flown first class and I don't even remember it!
As far as missing friends and family.... don't even remember missing them!
I feel like it was a huge blessing (not remembering), looking back. I don't think I could handle missing friends and the travel if I had been able to been aware of everything that was happening.
I can tell you that the first month after surgery was rough... probably 100 times worse then you can imagine... BUT now that I am 10 months post op I can say it was worth it.
IMHO, if you can afford the extra expense (and even if you can't...I would find a way) it is well worth it to travel to an expert. I really worried about flying and the 1.5 hour ride home after the flight before my surgery but really it is something you don't need to waste your time thinking about.
Somewhere on here is my blog...search for Heidi and Dr. Lenke I wrote about all the things I did to prepare and for a short time after.

to all other friends, I'm sorry I haven't kept up with you... I have been busy!!!
Best,
Heidi

PeggyS
08-13-2013, 09:43 AM
Heidi, Thank you for addressing my concerns.

Im trying to get an appt. with Dr. Lenke, but so far, I've only made it through registration. I didn't consider flying. St. Louis is about 420 miles from Columbus. No rehab.? I'll search for your posts - I'm sure they'll be helpful.

Were there any issues during the first couple of months when you wished you lived closer to your surgeon for evaluation of those issues? Were Dr. Lenke's nurses able to answer questions by phone for you? As you can tell, I'm a little nervous about not having medical support nearby. I'm MORE nervous about using a local surgeon who says his skills are "adequate" for my the spinal surgery!

I had planned to have surgery in Columbus this fall, but I've had a set back from a motorcycle accident. I need to heal from that before I can go ahead with my spine. Maybe it's a blessing, so I have more to to research and communicate with people on this forum. I keep telling God, I didn't need to practice healing before surgery! My husband & I are blessed to be alive and we thank Him everyday!

I've been reading about dr. Hey in NC. Did you consider him? You can send me a PM.
Thank you!
Peg

mabeckoff
08-13-2013, 10:39 AM
I've been reading about dr. Hey in NC. Did you consider him? You can send me a PM.
Thank you!
Peg

Hi Peggy,

Before I moved to CA, I lived in NC. My CA surgeon, Dr Bederman, wanted me to have a another opinion about what was going to be the best way to do my surgery. My NC surgeon, not Dr Hey, messed me up very badly and Dr Bederman was going to have to fix the problems I had. I went to see Dr Hey. If I was not moving to CA, I would have had Dr Hey do my next surgery. He was wonderful. He spent over 90 minutes with me , even knowing that I was not going to have my surgery with him. He answered all of my questions , making sure that I understood his answers. He is a Christian and I only state that , knowing that you are as well. He will pray with you before surgery, if you want him to

God bless
Melissa

jane d
08-13-2013, 11:27 AM
Hi, Peggy.
I had surgery last summer with Dr. Lenke on July 23, 2012. I live in South Carolina. I was fused from T-4 to

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sacrum at age 67 and have had a remarkable recovery. I am now walking over 3 miles a day now. Flying home after surgery was no problem. I was off pain meds at 5 1/2 weeks. I flew back at 6 weeks for a checkup and see him next week for my one year check. Any questions I've had his nurses were able to answer. I have a local neurosurgeon who agreed to see me if I had any problems but I haven't needed his help. I had no rehab after surgery. One week in hospital after surgery and five more days in hotel next to hospital and then flew home. I did do 3 years plus of strength training before my surgery and that was a big help. I saw several surgeons before deciding on Dr. Lenke and am so glad he did my surgery.
Best wishes and prayers for you.
Jane

jane d
08-13-2013, 12:03 PM
Having problem with server. It logged me off and don't know how those ads appeared in the middle of my post! I'm sorry!
Jane

gardenia
08-13-2013, 06:22 PM
We live 100 miles south of the eastern border of Southern California and Baja California, Mexico. (peninsula)

To get to St Louis it took us 4 plane changes and umpteen hours. Found that Dr K Bridwell was in the top 10 scoliosis surgeons at the Washington Univ. out of St Louis. He actually trained Dr Lenke and they are pretty much in collaboration but with separate offices and different practices. My daughter is a PhD candidate at WashU and tells me that unlike UCSF in SanFrancisco, at Wash Univ the departments meet often and the collaboration is a very strong network.

What I am trying to say or assume is that the doctors consult with each other about their problematic cases.

Also in choosing a surgeon, you want someone that has long years of experience by operating on a frequent basis in this case Bridwell and Lenke does weekly surgeries for decades. Any small problem can be anticipated and promptly fixed. In my case, there was a neurosurgeon as part of the team because a dural tear was anticipated. The team that works with Dr Bridwell is the same and know the drill.

Although the first couple of visits were extremely frustrated I stuck with his practice because he was the best trained "mechanic, plumber, electrician' in the trade. Don't expect him to be sweet talking and asking about your mental health and happiness in life. He was more interested in my xrays than me as a person. That pleased me.

FIX ME!!! FIX MY PAIN!!!! and he did ....

Recovery: 9-10 days at the hospital because of the dural tear. We opted to spend 2 months renting an apt across the street at $3k/month just in case. Therapy came to the room - rehab and occupational which amounted to not much but it was enough.

hasteffen
08-15-2013, 06:42 AM
Peggy, I did have some medication issues which were addressed over the phone. To make a long story short, I called 911 because I knew at the time I didn't have the mental capabilities to know what to do... my caregiver was fired and family stepped in to help us. I did have some kind of nerve issue in the beginning which caused me to fall several times (I'm telling ya our new spines are stronger than we think) but that corrected on its own. I did find and a local neurosurgeon here to follow me ... just in case, but I never needed him. The first 5 weeks are rough... I am not going to sugar coat it. IT is freaking unimaginable but the funny thing is I can hardly remember the agony now (sort of like childbirth). Now , that I am through it, and virtually pain free I feel like it was all worth it and I strongly feel that my faith, health and surgeon are the reasons why. Call me if you want to chat... I will private message you my number.
Angie (Lenke's new nurse) is really GREAT about getting back to you.
Best,
Heidi

susancook
08-15-2013, 12:47 PM
Peggy, just wanted to say that the pain with recovery varies with so many things, including procedures done, complication, pain meds, the individual, etc. unlike Heidi, my pain was in pretty good control after the surgery and I was comfortable. I was in the hospital for 10 days and remember almost nothing of that time. I do remember my week in rehab and I got outside and walked 1 block and was tired, but OK. In the first month home, I felt in good control pain wise and walked some outside(couple blocks at a time) and slept a lot. I also did some very limited PT at another rehab center for a couple of days. It was very gentle stretching mostly and helping me walk straight.

Having said that, you just need to be ready for whatever happens. The experience is so individual, but almost everyone has some problem or bad outcome postop, small or large.

I am at 5 months postop and mostly happy with my results, but I do not have patience with myself and I think that with time, most of my problems will resolve. I am very active in volunteer activities and have not taken pain meds since about 2 months or so postop. I do take meds for nerve pain and muscle relaxation.

Hope that this is helpful. Remember, that you only want to have this surgery once, so do whatever it takes to get in competent surgical hands. Dr. Lenke has lots of patients that post here. I don't know why.

I also read recently that when you are looking for a very specialized surgeon, go for the skill and forget the personality. My surgeon had both. My son, a nurse practitioner said, "If you want someone to be hand holding and emotionally supportive, go to a Social Worker".

Good luck! This is quite a journey. You are doing your homework. The surgery is BIG. But, for me at 66, I saw nothing but a progressively downhill roll and greater disability. Once when I went for X-rays, I saw a bent over little old lady with a cane moving very slowly. I swear that my surgeon put her there as a plant!

Susan

hasteffen
08-15-2013, 04:10 PM
I agree with Susan. Every surgery is different and every person is different... and unfortunately, many outcomes are not as great as mine. Is it the surgery? The patient? The surgeon? The curve? The mental health and fitness of the patient? I am positive it is all of the above.
I do want to say that it is different for every person. I do not remember being in pain per se... but I Kind of do. It is so hard to explain. I definitely think the drugs "helped" me not to remember it for sure. My sister, who was with me, kept a journal and from what she has told me it was traumatic....I don't remember it but I remember what I felt emotionally. Does that make sense?
As far as why a lot of Lenke's patients are on the forum? I think Kelly (Lenke's nurse when I started out) told me about it and said it was a support with some good info.... that is why I started on here. I am not sure about the others but if I was told I am sure others were also referred... but just a guess.
All I can add is that while I am a Lenke patient and supporter that does not mean he is the only doctor capable of a successful surgery or outcome. He was however my choice and I personally would not consider anyone with less experience. I am truly grateful for his experience, training and knowledge.
For me, it was worth the extra expense and travel. I only have one back and I wanted to give this one shot and I felt like he was my best source to get it done and get it done right.
I would do it all over again.
Best of luck... I think I read somewhere you found your surgeon!
Heidi

PeggyS
08-16-2013, 03:26 PM
Thanks to everyone for addressing my concerns about traveling to find an excellent surgeon.
I spoke with Dr. lenke's nurse, Angie. He should have my reports & x-rays to review by the end of next week. Angie said if I don't qualify for dr.Lenke, he would refer me to a different surgeon on staff. I'm also considering contacting Dr. Hey in NC.
Peg

ScoJo
02-18-2014, 10:52 PM
Hi! I traveled 13 hours [that's without stops] for my surgery. I chose to go w/ my second opinion MD as she totally inspired me and I could trust her w/ my life. There is an excellent spinal surgeon about 1 hour from my house [my first opinion], but I was constantly having challenges getting messages and questions to him through his PA.

I had a 2 day surgery and was in the hospital for 9 days, then in rehab for 7 days. I went to my son's family's home for a month and saw my surgeon for the 6 week checkup, then we drove back home in 2 days. I bought a 6" comfy mattress from Costco, put it in the back of the Highlander, took my drugs and I did just fine.

I have chosen to go back to San Francisco for all of my follow-ups, but was told that I could get some xrays locally and send them to her. Surgeons vary of what they want, but most are flexible if you live a distance.

Do what you need to do to get the best care that you can on your insurance. Some people on the forum flew home, so read what they had to say. I remember at least one woman who said that it was miserable.

Good luck!
Susan

Hi Susan,
I have appreciated all you have written about your journey to better health! After 7 years of getting progressively worse, I believe I am ready to have the surgery. Now choosing the doctor....

I am in Orange County, CA and I am currently seeing a doctor that trained at UCSF, has a great local reputation, but is not at a major teaching hospital. I like him and trust him. His perspective is that he does the entire surgery himself, as opposed to a Resident under the main surgeon operating. His PA-C assists him. Not sure how I feel about that - probably lack of education on my part.

I am also consulting with Dr. Munish Gupta, Dr. S. Samuel Bederman, and with Dr. Lenke. I am looking for feedback from anyone who wishes to offer it on the process of choosing a surgeon. I really like my current doc but want to make the best decision I can by being informed. The travel is a big concern for me for Lenke and to a lessor degree Gupta, but they have a lot of experience.

Locally my choice would be Jeffrey Deckey, MD or S. Samuel Bederman.

My Scoliosis was diagnosed at age 14, typical s curve with both thoracic and lumbar at about 30 degrees. Wore a Milwaukee a brace for a while and then forgot about it until my early 40s when I started to have some pain and it progressed from there.
Fast forward to my post menopausal age of 55 with multi level degeneration and a 60 degree lumbar and 55 degree thoracic curves.

leahdragonfly
02-19-2014, 09:13 AM
Hi ScoJo,

There is a forum participant, Melissa, who has has had one or two very complicated revisions with Dr Bederman. She hasn't been posting lately, but she had nothing but the highest regard for Dr Bederman, and he sounds very skilled and compassionate. If I were looking for a surgeon in your area, I would put him at the top of my lists of consults.

Best of luck,

ScoJo
02-20-2014, 10:13 AM
Hi ScoJo,

There is a forum participant, Melissa, who has has had one or two very complicated revisions with Dr Bederman. She hasn't been posting lately, but she had nothing but the highest regard for Dr Bederman, and he sounds very skilled and compassionate. If I were looking for a surgeon in your area, I would put him at the top of my lists of consults.

Best of luck,

Thank you, Leahdragonfly!

I appreciate your response and feedback. I will reach out Melissa for further feedback, if I can locate her. I know the first surgery is the best opportunity to have a "one and done" outcome, so the choice of surgeons feels a bit overwhelming, to say the least.

I admit, I will feel bad about choosing another surgeon since I have been seeing my current doc for 5 years and his office has filled out mounds of paperwork for my disability insurance carrier, but I feel I have to consider it. Did you or any other forum member struggle with this or am I being silly?

Thank you!
Scojo

Pooka1
02-20-2014, 11:41 AM
My Scoliosis was diagnosed at age 14, typical s curve with both thoracic and lumbar at about 30 degrees. Wore a Milwaukee a brace for a while and then forgot about it until my early 40s when I started to have some pain and it progressed from there.
Fast forward to my post menopausal age of 55 with multi level degeneration and a 60 degree lumbar and 55 degree thoracic curves.

Hi. Can I just ask what your curves measured after you became skeletally mature? Did they increase from the original measurements at diagnosis or only slowly over the years after you reached skeletal maturity?

Thanks in advance.

susancook
02-20-2014, 02:13 PM
Hi Susan,
I have appreciated all you have written about your journey to better health! After 7 years of getting progressively worse, I believe I am ready to have the surgery. Now choosing the doctor....

I am in Orange County, CA and I am currently seeing a doctor that trained at UCSF, has a great local reputation, but is not at a major teaching hospital. I like him and trust him. His perspective is that he does the entire surgery himself, as opposed to a Resident under the main surgeon operating. His PA-C assists him. Not sure how I feel about that - probably lack of education on my part.

I am also consulting with Dr. Munish Gupta, Dr. S. Samuel Bederman, and with Dr. Lenke. I am looking for feedback from anyone who wishes to offer it on the process of choosing a surgeon. I really like my current doc but want to make the best decision I can by being informed. The travel is a big concern for me for Lenke and to a lessor degree Gupta, but they have a lot of experience.

Locally my choice would be Jeffrey Deckey, MD or S. Samuel Bederman.

My Scoliosis was diagnosed at age 14, typical s curve with both thoracic and lumbar at about 30 degrees. Wore a Milwaukee a brace for a while and then forgot about it until my early 40s when I started to have some pain and it progressed from there.
Fast forward to my post menopausal age of 55 with multi level degeneration and a 60 degree lumbar and 55 degree thoracic curves.

Re: this post and your later post. Do "due diligence", that is, give the effort of finding the right (right means the one that you feel is the best for you) surgeon. As I said, I traveled. Similar to your later post, I saw a surgeon up here in Portland who I liked a lot and had about 5 visits with him over 1 year, LOTS of other pain therapies at the same institution. So, like you said, that doctor had a large file on me. Then, I thought about a second opinion, saw Dr. Hu at UCSF, which is 13 hours driving time. I was extremely impressed with her on the first visit (my son went along who is 35 and a family nurse practitioner and he was equally impressed with her) AND she mostly agreed with what the Portland spine surgeon suggested. Seeing more than one doctor sort of double checks the advice. The UCSF doctor won out in the end as I figured that I could stay with him and his family, my dau-in-law is also a Family Nurse Practitioner, and eat their cooking as opposed to my husband's if I was in Portland. I was very lucky in that I felt that I had 2 great choices.

All of the doctors that you have listed have a great reputation among people here. You need to weigh personal factors, the Gestalt of it......putting location, resources, your gut feeling about the doctor's competence, personal factors (do you have $ to stay in a hotel, can you figure out how to get along with his/her PA or NP, do you like/trust the hospital, etc) in a mental bowl and sort it out. I did it on paper and decided that UCSF is my choice.

I cannot imagine that any doctor that does this massive back surgery "does it by himself". There is a fatigue factor thar sets in at some time point, let alone potty breaks, lunch or snack, drink, etc. also if there is an emergency during the surgery, like sudden bleeding it is better to have 2 skilled Surgeons working together. Surgeries of this sort are many hours long! I am having my incisional hernia fixed and that general surgeon has another general surgeon in his practice assist.

Best of luck with your vetting process. I will send you my email in case you want to ask me more personal questions about your process or if you just want support. Susan

ScoJo
02-20-2014, 10:57 PM
Hi. Can I just ask what your curves measured after you became skeletally mature? Did they increase from the original measurements at diagnosis or only slowly over the years after you reached skeletal maturity?

Thanks in advance.


Of course. I am not sure what my curves were when first diagnosed, but I was told if everyone had it that mild they wouldn't even need to treat it. I think they were about 30-33 degrees. I noticed a progression in pain and it seemed my curve in my late 30's to early 40's but I admit I didn't really go to get it checked. I had a full hysterectomy at age 47 and within a year it seemed much worse. I had it checked in about 2008 and my curves were in the high 40 degree thoracic and low 50 degree range lumbar. It progressed to low to mid 50's and I am now 60 degrees lumbar and 53 degree thoracic.

My pain has progressed a lot, particularly in my left side ( I rotate left ). I lean forward when I walk and thinking back, I think I have been leaning progressively more forward for about 8 years.

Complicating factors are that my right shoulder rotates quite a bit forward and I tore the ligament where my clavicle meets my sternum while doing PT on an exercise ball in 2008. Now my clavicle subluxes at the sternum with a lot of my movements in my right arm. I am hoping my surgery will help stabilize it buy taking the rotation out of my shoulder. I have osteopenia bordering on osteoporosis and just finished 2 years of Forteo. That combined with multilevel degeneration make me a bit worried about getting a successful outcome. On the other hand, this will be a first time surgery, so that remove some issues.

Thank you for responding and I hope I didn't over answer. I guess I have a lot of pent up worries and it is a gift to share with a group who understands. So thank you to all of you who take your time to write and read here!

ScoJo
02-20-2014, 11:14 PM
Re: this post and your later post. Do "due diligence", that is, give the effort of finding the right (right means the one that you feel is the best for you) surgeon. As I said, I traveled. Similar to your later post, I saw a surgeon up here in Portland who I liked a lot and had about 5 visits with him over 1 year, LOTS of other pain therapies at the same institution. So, like you said, that doctor had a large file on me. Then, I thought about a second opinion, saw Dr. Hu at UCSF, which is 13 hours driving time. I was extremely impressed with her on the first visit (my son went along who is 35 and a family nurse practitioner and he was equally impressed with her) AND she mostly agreed with what the Portland spine surgeon suggested. Seeing more than one doctor sort of double checks the advice. The UCSF doctor won out in the end as I figured that I could stay with him and his family, my dau-in-law is also a Family Nurse Practitioner, and eat their cooking as opposed to my husband's if I was in Portland. I was very lucky in that I felt that I had 2 great choices.

All of the doctors that you have listed have a great reputation among people here. You need to weigh personal factors, the Gestalt of it......putting location, resources, your gut feeling about the doctor's competence, personal factors (do you have $ to stay in a hotel, can you figure out how to get along with his/her PA or NP, do you like/trust the hospital, etc) in a mental bowl and sort it out. I did it on paper and decided that UCSF is my choice.

I cannot imagine that any doctor that does this massive back surgery "does it by himself". There is a fatigue factor thar sets in at some time point, let alone potty breaks, lunch or snack, drink, etc. also if there is an emergency during the surgery, like sudden bleeding it is better to have 2 skilled Surgeons working together. Surgeries of this sort are many hours long! I am having my incisional hernia fixed and that general surgeon has another general surgeon in his practice assist.

Best of luck with your vetting process. I will send you my email in case you want to ask me more personal questions about your process or if you just want support. Susan

Thank you, Susan. I really appreciate your thoughts. I am hopeful that these meetings will help me decide. I am a bit all over the map with my worries and thoughts. I have done a good job of gathering my records, but not my questions and my impressions of the docs and their responses. I am working on that part.

I am going verify that I understood my doctor correctly, but I think I did. I too worried about the physical endurance. If my husband getting tired in a home improvement project is an indicator, I don't want anyone to get tired and rushed as my surgery drags on! :-). I feel loyal to my current doc, but much more loyal to myself and my family, so I have to do my best to pick well and go from there.

I spent 10 days at UCSF when my Dad had a major esophogial hernia surgery and was impressed with the hospital, but it was a bear for family to stay nearby. It is that connection and their great ortho dept reputation made me pay special attention to your posts. I have thought about seeing Dr. Hu as well, but have not yet initiated an appt.

susancook
02-21-2014, 02:01 AM
Dr. Hu moved to Stanford University where she is the chair of the Spine Department. It is my belief that the handful of spine surgeons in the US are probably all somewhat equal in skills. My son and I were talking about highly skilled MD specialists and he said to me, "Mom, if you want someone to be compassionate and listen to your problems, go see a Social Worker". All that you really need is confidence and trust in your surgeon. You need to trust. Every doctor has some bad outcomes, even the best of them!

Fear and uncertainty are very normal and if you did not feel them, you would not be normal. If you have surgery, you don't know what would have happened without surgery. You can give it your best guess, that's about it. The recovery is not easy and variable. Some people seem to improve every day and never look back, most people seem to have a variable course, but the trend is toward gradual improvement. I have decided that I am on he 2 year plan. I am doing well now and have never, ever regretted having spinal surgery. I was in some pain and some disability before surgery. I could not walk further than 1/2 block without resting before surgery. Every time now that I stand in a long long....it even happened today, I suddenly get a flashback of laying on the floor or sitting on the floor in line. I traveled up to UCSF a week before surgery and my daughter in law gave me one of my grand kids plastic chairs to take with me as there are so few places to sit down while waiting for the bus in downtown SF. I am sure that I looked ridiculous carrying and sitting on the little child's white plastic chair, but I did not have a choice.

I am at exactly 11 months postop right now. This time 11 months ago was one of the days between my 2 days of surgery. UCSF ave me such great drugs, I do not remember very much about it!

You are in my thoughts and prayers. I wish you peace. Susan

I had some osteopenia and Dr. Hu had to use some hooks instead of screws. I had a lot of degeneration and one vertebrae that was stenotic, so Dr. Hu needed to do to rebuild many of my vertebrae. It will be interesting if the surgeons that you interview have different approaches to your surgery.

Pooka1
02-21-2014, 06:34 AM
Thank you for responding and I hope I didn't over answer. I guess I have a lot of pent up worries and it is a gift to share with a group who understands. So thank you to all of you who take your time to write and read here!

Thank you for posting. This is a two-way street. Your questions help others learn.

I asked that question because there is a lot of talk about being below a certain angle as being protective against future progression to surgical range. If you were around 30* in both your curves when you were skeletally mature (15 or 16 yo) and progressed to surgical range, that definitely goes against the prevailing wisdom. It doesn't mean you are wrong. It means the prevailing wisdom may not be so wise. The reason this is an issue is that bracing children is done to avoid surgery for life yet it clearly doesn't do that in some cases even though it appears to do that right at the point of skeletally maturity. And so there are testimonials of young women mad as hell that they wore their brace and still needed surgery.

ScoJo
02-21-2014, 07:23 PM
Thank you for posting. This is a two-way street. Your questions help others learn.

I asked that question because there is a lot of talk about being below a certain angle as being protective against future progression to surgical range. If you were around 30* in both your curves when you were skeletally mature (15 or 16 yo) and progressed to surgical range, that definitely goes against the prevailing wisdom. It doesn't mean you are wrong. It means the prevailing wisdom may not be so wise. The reason this is an issue is that bracing children is done to avoid surgery for life yet it clearly doesn't do that in some cases even though it appears to do that right at the point of skeletally maturity. And so there are testimonials of young women mad as hell that they wore their brace and still needed surgery.

Hi Sharon,

I learned something today that I thought you might find interesting. I was at my consult with Dr. Bederman and he measured my curves and found my thoracic curve to be at 50* and my lumbar curve to be 66*. Ironically, he had an X-ray that I had done in 2003 (age 44) at UCI (can't recall it, but it had my name on it) and my curves were in the low 20's!! This really confirms my feelings that hysterectomy including ovaries at age 47 caused my curve to progress dramatically.

I guess my remembrance of 30 degree curves must be from some between them and now. Unfortunately my mother passed away in 2008 so I really don't know what they were when first discovered at age 14 ( I do recall I was nearly finished growing).

He definitely took note of the rate of progression and so did I. Anyway, I thought this was interesting.

BTW - I was very impressed with him and how he described he would handle the surgery if I chose to proceed.

Happy Friday, Scojo

titaniumed
02-21-2014, 07:27 PM
I admit, I will feel bad about choosing another surgeon since I have been seeing my current doc for 5 years and his office has filled out mounds of paperwork for my disability insurance carrier, but I feel I have to consider it. Did you or any other forum member struggle with this or am I being silly?

Thank you!
Scojo

Just catching up and see you posting.....and looked up your surgeon and see that he trained with Dr Bradford at UCSF years ago.....

This of course scores huge bonus points due to Dr Bradfordís reputation......The man is a guru.

What has Dr Decky proposed? What levels? Posterior only? Have you discussed a date? Have you talked about getting a second opinion and does he agree? What did he tell you about your recovery time and has he discussed complications yet?

Welcome to the forum

Ed

Pooka1
02-21-2014, 07:34 PM
Hi Sharon,

I learned something today that I thought you might find interesting. I was at my consult with Dr. Bederman and he measured my curves and found my thoracic curve to be at 50* and my lumbar curve to be 66*. Ironically, he had an X-ray that I had done in 2003 (age 44) at UCI (can't recall it, but it had my name on it) and my curves were in the low 20's!! This really confirms my feelings that hysterectomy including ovaries at age 47 caused my curve to progress dramatically.

I guess my remembrance of 30 degree curves must be from some between them and now. Unfortunately my mother passed away in 2008 so I really don't know what they were when first discovered at age 14 ( I do recall I was nearly finished growing).

He definitely took note of the rate of progression and so did I. Anyway, I thought this was interesting.

BTW - I was very impressed with him and how he described he would handle the surgery if I chose to proceed.

Happy Friday, Scojo

Scojo,

Thanks so much for this.

My only comment is "WOW!" So your curves were LOW 20*s and yet here you are 10 years later in surgical range. Did Dr. Bederman use the term, "collapsing"? Dr. Hey on his blog has posted some cases of so-called collapsing spines wherein the curve was sub-surgical for years and then just kicks into gear and quickly reaches surgical range.

Did Dr. Bederman act surprised that your curves were WELL under the threshold thought to be stable for life yet you reached surgical range? I am wondering if surgeons are not surprised like Dr. Hey certainly doesn't seem to be in relating these cases because they might see many cases of small curves in mature spines that nevertheless become surgical. The reason this is important is that it tends to undermine the case for bracewear if these cases go on to surgical range at a similar rate to those who didn't wear braces.

Do you consider your brace as only delaying progression?

Thanks again for posting. You have a very interesting case. :-)

Pooka1
02-21-2014, 07:35 PM
This really confirms my feelings that hysterectomy including ovaries at age 47 caused my curve to progress dramatically.

I think that's a very viable hypothesis! Did you run it past Dr. Bederman?

ScoJo
02-21-2014, 07:50 PM
Scojo,

Thanks so much for this.

My only comment is "WOW!" So your curves were LOW 20*s and yet here you are 10 years later in surgical range. Did Dr. Bederman use the term, "collapsing"? Dr. Hey on his blog has posted some cases of so-called collapsing spines wherein the curve was sub-surgical for years and then just kicks into gear and quickly reaches surgical range.

Did Dr. Bederman act surprised that your curves were WELL under the threshold thought to be stable for life yet you reached surgical range? I am wondering if surgeons are not surprised like Dr. Hey certainly doesn't seem to be in relating these cases because they might see many cases of small curves in mature spines that nevertheless become surgical. The reason this is important is that it tends to undermine the case for bracewear if these cases go on to surgical range at a similar rate to those who didn't wear braces.

Do you consider your brace as only delaying progression?

Thanks again for posting. You have a very interesting case. :-)

Yes, he did seem surprised. I thought the 2003 X-Ray was not mine and questioned it. From earlier years the only degree level I remember is the 30 degree range, but can't recall when I was told that information. I was so involved working and traveling in my job, I nearly ignored the whole thing until pain started slowing me down.

We both double checked the film and it had my full name, which is not very common. He did not use the word collapsing. I asked him how he would rate the complexity of my case on a scale of 1 to 10 and he said a 6 or 7. Luckily my spinal cord is in good shape and the compelling factors toward surgery are the progression, pain and functional impairment. I am fortunate in that my curves align and I an fairly level at the hips and only slightly less so at the shoulders. I do have the classic flat back and lean forward. He showed me how I am compensating by tucking my pelvis which is causing pressure on my hip joints. He was really great, no pressure at all - fact told me I could wait to do surgery, and really spent time explaining my condition, the surgery process and the risks.

I love it that he is local and really hope to hear from any other Dr. Bederman patients. It would be great if there are some in OC that I could meet in person.

ScoJo
02-21-2014, 07:52 PM
I think that's a very viable hypothesis! Did you run it past Dr. Bederman?

I did and he wrote it down and seemed to concur that it may have been a factor but didn't verbalize it.

Pooka1
02-21-2014, 08:07 PM
This is one of the best threads ever in my opinion because we have a patient with a very interesting case asking very pertinent, cogent questions and posting the surgeon's responses. It's like Christmas in February for me. :-)

Thanks so much, Scojo. :-)

LindaRacine
02-21-2014, 09:43 PM
Hi Sharon,

I learned something today that I thought you might find interesting. I was at my consult with Dr. Bederman and he measured my curves and found my thoracic curve to be at 50* and my lumbar curve to be 66*. Ironically, he had an X-ray that I had done in 2003 (age 44) at UCI (can't recall it, but it had my name on it) and my curves were in the low 20's!! This really confirms my feelings that hysterectomy including ovaries at age 47 caused my curve to progress dramatically.

I guess my remembrance of 30 degree curves must be from some between them and now. Unfortunately my mother passed away in 2008 so I really don't know what they were when first discovered at age 14 ( I do recall I was nearly finished growing).

He definitely took note of the rate of progression and so did I. Anyway, I thought this was interesting.

BTW - I was very impressed with him and how he described he would handle the surgery if I chose to proceed.

Happy Friday, Scojo

While I agree, in theory, that your hysterectomy might be a factor in an increased curve, one case is still, always, anecdotal. I'm fairly certain I could come up with a few people who had moderate curves, had hysterectomies, and whose curves didn't increase. I've thought for a long time that hormones may play a role in curve progression. Scientists have been unable to prove any link in the past. I think the issue is that there's been very little long-term follow-up of small, untreated scoliosis curves. Unfortunately, degenerative scoliosis (which is really common) seems to occur mostly in the 5th and 6th decades of life, so it's hard to know if it's hormones, or just the loss of muscle tone holding the spine straight.

--Linda

ScoJo
02-21-2014, 10:34 PM
While I agree, in theory, that your hysterectomy might be a factor in an increased curve, one case is still, always, anecdotal. I'm fairly certain I could come up with a few people who had moderate curves, had hysterectomies, and whose curves didn't increase. I've thought for a long time that hormones may play a role in curve progression. Scientists have been unable to prove any link in the past. I think the issue is that there's been very little long-term follow-up of small, untreated scoliosis curves. Unfortunately, degenerative scoliosis (which is really common) seems to occur mostly in the 5th and 6th decades of life, so it's hard to know if it's hormones, or just the loss of muscle tone holding the spine straight.

--Linda

Good point, Linda. I was originally 5'11" and always had poor muscle tone. I have always had to work to maintain even a below average muscle tone. I also gave multi level degeneration, so who knows. Regardless, here I am now and onward I must go! :-).

ScoJo
02-21-2014, 10:36 PM
This is one of the best threads ever in my opinion because we have a patient with a very interesting case asking very pertinent, cogent questions and posting the surgeon's responses. It's like Christmas in February for me. :-)

Thanks so much, Scojo. :-)

I just read this and had to smile! And, you are welcome. This forum is like a life line of information for me.

LindaRacine
02-21-2014, 11:30 PM
Did Dr. Bederman act surprised that your curves were WELL under the threshold thought to be stable for life yet you reached surgical range? I am wondering if surgeons are not surprised like Dr. Hey certainly doesn't seem to be in relating these cases because they might see many cases of small curves in mature spines that nevertheless become surgical. The reason this is important is that it tends to undermine the case for bracewear if these cases go on to surgical range at a similar rate to those who didn't wear braces.

Again, one person doesn't prove anything. As you know, as far as I'm concerned, we don't really know the natural history of small curves. But, I'm certain, as an ex-UCSF fellow who saw an abundance of deformity patients, Dr. Bederman would not be surprised by a single case... even if it was unusual.

--Linda

susancook
02-22-2014, 02:27 AM
While I agree, in theory, that your hysterectomy might be a factor in an increased curve, one case is still, always, anecdotal. I'm fairly certain I could come up with a few people who had moderate curves, had hysterectomies, and whose curves didn't increase. I've thought for a long time that hormones may play a role in curve progression. Scientists have been unable to prove any link in the past. I think the issue is that there's been very little long-term follow-up of small, untreated scoliosis curves. Unfortunately, degenerative scoliosis (which is really common) seems to occur mostly in the 5th and 6th decades of life, so it's hard to know if it's hormones, or just the loss of muscle tone holding the spine straight.

--Linda

I wonder if women on hormone replacement therapy post menopausally are less likely to have curve progression. I don't think that HT decreases degenerative changes. Susan

Pooka1
02-22-2014, 08:47 AM
Again, one person doesn't prove anything. As you know, as far as I'm concerned, we don't really know the natural history of small curves. But, I'm certain, as an ex-UCSF fellow who saw an abundance of deformity patients, Dr. Bederman would not be surprised by a single case... even if it was unusual.

--Linda

I don't disagree. I am just saying plenty of patients and parents would be shocked and possibly mad because lower twenties is not in any rational treatment window at present. Either the paradigm of some protective angle, presumably ~30* is largely true or it isn't.

leahdragonfly
02-22-2014, 09:23 AM
Hi ScoJo,

I am quite sure you can call Dr Bederman's office and ask for the contact info for several of his patients who had similar surgeries to what you need. Then you can call them and talk with them about their experiences with Dr Bederman, as well as with surgery and recovery. I did this before my surgery and talked to two of my surgeon's patients. They both were extremely helpful and I gained confidence by talking with them.

I know where you are coming from in agonizing over choosing a surgeon. I live in Oregon and the only surgeons I considered were in Portland, a 2 hour drive from my house. I saw my chosen surgeon for several years before surgery, then got one second opinion that was completely off the chart. I briefly considered whether I needed to travel to UCSF or Seattle for another opinion, but after researching my surgeon some more really concluded that I was perfectly confident in his abilities.

I would not feel that you in any way "owe" anything to your surgeon of 5 years. Do not feel bad about changing. This surgery is a huge thing, and like you say, you want to get it right the first time. You do not want to go with a surgeon you are less than 100%confident in just because you don't want to hurt his feelings or feel that you owe him. Pick the very best you can find, and don't look back. I would certainly go with Dr Bederman myself if I lived near him, based on all the great things I have heard about him.

Best of luck, and keep those questions coming! We are here to help.

ScoJo
02-22-2014, 01:23 PM
I wonder if women on hormone replacement therapy post menopausally are less likely to have curve progression. I don't think that HT decreases degenerative changes. Susan

Interestingly, he asked me if I had HT while we were on this topic. I sure the motive was likely that the research side of him wanted to gather that info. I did not, due to a 1/2 sister and paternal aunt who both had breast cancer.

ScoJo
02-22-2014, 01:43 PM
Hi ScoJo,

I am quite sure you can call Dr Bederman's office and ask for the contact info for several of his patients who had similar surgeries to what you need. Then you can call them and talk with them about their experiences with Dr Bederman, as well as with surgery and recovery. I did this before my surgery and talked to two of my surgeon's patients. They both were extremely helpful and I gained confidence by talking with them.

I know where you are coming from in agonizing over choosing a surgeon. I live in Oregon and the only surgeons I considered were in Portland, a 2 hour drive from my house. I saw my chosen surgeon for several years before surgery, then got one second opinion that was completely off the chart. I briefly considered whether I needed to travel to UCSF or Seattle for another opinion, but after researching my surgeon some more really concluded that I was perfectly confident in his abilities.

I would not feel that you in any way "owe" anything to your surgeon of 5 years. Do not feel bad about changing. This surgery is a huge thing, and like you say, you want to get it right the first time. You do not want to go with a surgeon you are less than 100%confident in just because you don't want to hurt his feelings or feel that you owe him. Pick the very best you can find, and don't look back. I would certainly go with Dr Bederman myself if I lived near him, based on all the great things I have heard about him.

Best of luck, and keep those questions coming! We are here to help.

Hi Gayle,

Thank you for your input. I think I will meet with a couple of his patients. I did meet with one patient of my current doctor (also trained at UCSF) and she provided great feedback. He is well respected and I think also very skilled, but I am leaning away largely because he just doesn't do enough Scoli cases per year. Also, his approach seemed a bit less conservative (both the anterior and posterior surgeries in the same day with a PA-C assisting as opposed to another ortho surgeon). I learned a lot from this second consult that helped me to recognize this difference. Dr. Bederman does it over two consecutive days with another ortho surgeon assisting. I liked the sound of the post surgery care as well insofar as he braces to reinforce the BLT limitation and places a high focus nutrition.

All of this speaks volumes about second, third or however many opinions a person needs to be comfortable. In fairness, I am becoming more skilled in listening and absorbing the responses with each discussion as well. With that said, I think I agree that within the top surgeons in the US, there are many who are capable, so then it is accessibility. And, fortunately Dr. Bederman is 20 minutes from my home. Next, I am going to talk to a well respected physical therapy group where I have gone and get their opinion. Interestingly, they gave me Dr. Munish Gupta's name, but I don't know it they just didn't know or think of Dr. Bederman. But, right now, I feel really comfortable with Dr. Bederman. Onward!

Thanks again!

Scojo

LindaRacine
02-22-2014, 07:38 PM
Dr. Gupta is really great, but I'm not a big fan of traveling for surgery if you have a good option close to home.

kennedy
02-22-2014, 11:44 PM
Scojo
I'm a patient of doctor munish Gupta is one of the top scoliosis experts in the country. He really a fantastic surgeon he did my surgery 4 years ago

Irina
02-23-2014, 12:27 AM
There is a member here called king14 - she is Dr. Bederman's patient. I remember that she had an unusual case - her spine was very flexible.

Pooka1
02-23-2014, 07:21 AM
There is a member here called king14 - she is Dr. Bederman's patient. I remember that she had an unusual case - her spine was very flexible.

Unusual doesn't begin to describe it. She had two large NON-structural curves. They both bent out. She had NO structural curve and so her T fusion technically violates the rule to only fuse structural curves.

ScoJo
02-23-2014, 10:03 AM
Scojo
I'm a patient of doctor munish Gupta is one of the top scoliosis experts in the country. He really a fantastic surgeon he did my surgery 4 years ago

Hi Kara,

Thank you for writing! I am glad to hear you had a great experience. Just curious, did you travel to see him or was he close to your home?

He has great patient ratings on doctor rating sites like vitals. What made you feel he was great? Mostly quality if the outcome?

Thanks!

Scojo

ScoJo
02-23-2014, 10:06 AM
Unusual doesn't begin to describe it. She had two large NON-structural curves. They both bent out. She had NO structural curve and so her T fusion technically violates the rule to only fuse structural curves.


This is an area I need to learn more about - structural vs non structural curves. I know I have the classic thoracic and lumbar curves but have also been told I have a third curve within the larger lumbar curve.

ScoJo
02-23-2014, 10:08 AM
There is a member here called king14 - she is Dr. Bederman's patient. I remember that she had an unusual case - her spine was very flexible.


Thank you, Irina! I really appreciate receiving this information. I will search her name and post to her!

kennedy
02-23-2014, 02:28 PM
Scojo he is 3 hours from where I live.

Hi Kara,

Thank you for writing! I am glad to hear you had a great experience. Just curious, did you travel to see him or was he close to your home?

He has great patient ratings on doctor rating sites like vitals. What made you feel he was great? Mostly quality if the outcome?

Thanks!

Scojo

susancook
02-23-2014, 03:11 PM
Like Linda, I too would favor close to home for many reasons vs a distance that would necessitate flying or driving for > 4 hours. If everything is somewhat equal, go with the close option. I had a great surgeon close to home, but my by far best postop support system was in San Francisco.

If you have a postop problem after you go home, if you are quite a distance from your surgeon, you cannot go for an appointment with the surgeon that did your surgery. To me, that is a big reason to be close. Also, if you are close, your friends can support your husband/wife/partner and good friends could spend a night in the hospital with you if needed.

The reason that some people have 2 days and others one day surgeries if you have both anterior and posterior surgeries is generally time needed to do the surgery. The time that is "safe" under anesthesia depends on many factors including age, health history, etc. I do not know the exact number of hours, but it is generally recommended that a person not be under general anesthesia for longer than about 10 hours or so. My anterior surgery took about 5 hours and posterior about 9-10 hours, thus you can see that 2 days was needed. So, if a doctor is going to do the surgery in 1 or 2 days, maybe ask exactly what he/she is going to do each day.

Good luck! Susan

susancook
02-23-2014, 03:19 PM
Interestingly, he asked me if I had HT while we were on this topic. I sure the motive was likely that the research side of him wanted to gather that info. I did not, due to a 1/2 sister and paternal aunt who both had breast cancer.

Women who have their ovaries removed before the age of menopause and do not go on HT at least to 50 have a much greater likelihood of having osteopenia/osteoporosis. That's probably why he asked.
Susan

ScoJo
02-24-2014, 09:16 AM
Women who have their ovaries removed before the age of menopause and do not go on HT at least to 50 have a much greater likelihood of having osteopenia/osteoporosis. That's probably why he asked.
Susan

Makes sense, Susan! Thanks for the post and all of the encouragement you offer to so many people here.