How far have you traveled to have your surgery?

[hasteffen]

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]

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]

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]

Thank you!

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]

Choosing a surgeon for a first surgery

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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 Bradford’s 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