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bentRN
03-16-2016, 01:18 PM
I have read through the posts about various surgeons, and continue to do so. I have a question about the SRS "find a specialist" application. I contacted one of the surgeons listed, in my area, who was also recommend by an RN associate, and after he looked at my x-rays, he referred me to someone else, who he said does the "more complex" surgeries. This person is a neurosurgeon, very young looking, and not on the SRS list. Any input?

Now that Dr. Lenke is in NY, what other states have excellent adult scoliosis surgeons? My surgery will be the anterior/posterior approach, T4 to S1. I am seeking current information.

Thanks to all!

titaniumed
03-16-2016, 02:20 PM
Bent, My surgeon wasn’t on the SRS list, but did his residencies and fellowships at TCSC which was where the SRS was founded.

He was also young at the time which had me concerned. I had to weigh the older 10,000 surgeries under his belt vs the newly trained in new techniques. I picked younger....only because I believed in him.

USCF has done a study on “multiple” surgeons being an advantage. I had 2 scoliosis surgeons and a vascular surgeon for my ALIF. The team means a lot.....Scoli surgeons like to have vascular docs hanging around for ALIF’s

How many levels on your ALIF? Will they use BMP? I would address the autograft/allowgraft question. I had no bone used in my surgeries....All synthetics, and that was 8-1/2 year ago. Does anyone dig on the hip anymore? I think this might be in the past now.

Most of the scoliosis surgeons are trained at the main centers, UCSF, TCSC, HSS, or in St Louis. My second scoliosis surgeon was trained in Indianapolis.

Training and experience means a lot....where its done, who its with, history, and so forth.

Others should chime in....

Deep breaths...Welcome to the forum

Ed

susancook
03-16-2016, 02:27 PM
My understanding: There are SRS spinal surgeons that operate on:
- Kids and or adult
- "simple" and/or "complex"
- "deformity" vs ......I don't know what the alternative is?

I was told that since I had older adult degenerative scoliosis, that I should seek an orthopedic deformity spine surgeon who operates on a lot of older persons.

It is my understanding that orthopedic spine surgeons can repair both the bony deformity (scoliosis) as well as the neuro problems such as nerve compression from stenotic bone, disc problems, collapsing degenerative vertebrae, etc.

I agree that finding just who should do the surgery is a challenge. I did consult with a delightful minimally invasive neurosurgeon who wanted to repair my Lumbar 4-5 disc problem. That was just a part of my problem and did not address the kyphosis in my thoracic area.

Good luck! Hopefully Linda or Ed or others will share their knowledge.

Susan

bentRN
03-16-2016, 02:50 PM
My understanding: There are SRS spinal surgeons that operate on:
- Kids and or adult
- "simple" and/or "complex"
- "deformity" vs ......I don't know what the alternative is?

I was told that since I had older adult degenerative scoliosis, that I should seek an orthopedic deformity spine surgeon who operates on a lot of older persons.

It is my understanding that orthopedic spine surgeons can repair both the bony deformity (scoliosis) as well as the neuro problems such as nerve compression from stenotic bone, disc problems, collapsing degenerative vertebrae, etc.

I agree that finding just who should do the surgery is a challenge. I did consult with a delightful minimally invasive neurosurgeon who wanted to repair my Lumbar 4-5 disc problem. That was just a part of my problem and did not address the kyphosis in my thoracic area.

Good luck! Hopefully Linda or Ed or others will share their knowledge.

Susan

Thanks, Susan! I do see that the listings include adult scoliosis and spinal deformity. That is noted on one of the surgeons I am considering. The original surgeon I saw clearly had no desire to do the surgery, telling me to wait until I had neurological symptoms. Dr. Kahn is the one who referred me on. I suspect he may be older and that is why he referred me.

bentRN
03-16-2016, 03:20 PM
Bent, My surgeon wasn’t on the SRS list, but did his residencies and fellowships at TCSC which was where the SRS was founded.

He was also young at the time which had me concerned. I had to weigh the older 10,000 surgeries under his belt vs the newly trained in new techniques. I picked younger....only because I believed in him.

USCF has done a study on “multiple” surgeons being an advantage. I had 2 scoliosis surgeons and a vascular surgeon for my ALIF. The team means a lot.....Scoli surgeons like to have vascular docs hanging around for ALIF’s

How many levels on your ALIF? Will they use BMP? I would address the autograft/allowgraft question. I had no bone used in my surgeries....All synthetics, and that was 8-1/2 year ago. Does anyone dig on the hip anymore? I think this might be in the past now.

Most of the scoliosis surgeons are trained at the main centers, UCSF, TCSC, HSS, or in St Louis. My second scoliosis surgeon was trained in Indianapolis.

Training and experience means a lot....where its done, who its with, history, and so forth.

Others should chime in....

Deep breaths...Welcome to the forum

Ed

Your acronyms are making my head spin. I am a nurse, but now I will confess, in psych! Your reply is great, thought provoking and specific! My husband can tell me where TCSC and HSS are. I've had one visit with one real surgeon, he's the one who explained that I have two curves, one thoracic (~55*,) one lumbar (~75*.) I have my next visit on 4/29, but am seeing a neuro surgeon on 3/29. I was told there would be a vascular surgeon there as well. I was told t4 to s1. That's all. I really don't want hip bone taken, I have heard that is very painful. I plan to ask about that. BMP is basic metabolic panel to me!

I am still dealing with the grief process. I started having back pain 3-1/4 years ago, and 5 mo ago, I learned the extent of my problem. I am angry that no doctor, in my whole life, noted that I had any issue with scoliosis until I was 58!

Thank you very much! I am anxious to move ahead!

LindaRacine
03-16-2016, 10:11 PM
BentRN...

It's fairly common for young surgeons to not belong to the SRS at the beginning of their careers. It's relatively expensive for them to join, and I think they often want to wait and see how much deformity surgery they'll be doing.

Find out where your surgeon did his fellowship. There are certain fellowships where the fellows get a lot more practice in adult deformity than others. Though not a complete list, the best training hospitals in terms of adult deformity are probably (in no particular order):

Hospital for Special Surgery (New York)
Washington University (St. Louis)
Leatherman (Kentucky)
Columbia - not necessarily now, but in the near future(New York)
UCSF (San Francisco)
Rothman (Philadelphia)
Emory (Atlanta)
Jefferson (New York)

Essentially every big deformity surgery has two surgeons, although some private surgeons routinely operate with a PA. At UCSF, a major percentage of deformity surgeries are done by co-surgeons that are both attendings.

Hope that helps.

--Linda

LindaRacine
03-16-2016, 10:21 PM
Bent, My surgeon wasn’t on the SRS list, but did his residencies and fellowships at TCSC which was where the SRS was founded.

He was also young at the time which had me concerned. I had to weigh the older 10,000 surgeries under his belt vs the newly trained in new techniques. I picked younger....only because I believed in him.

USCF has done a study on “multiple” surgeons being an advantage. I had 2 scoliosis surgeons and a vascular surgeon for my ALIF. The team means a lot.....Scoli surgeons like to have vascular docs hanging around for ALIF’s

How many levels on your ALIF? Will they use BMP? I would address the autograft/allowgraft question. I had no bone used in my surgeries....All synthetics, and that was 8-1/2 year ago. Does anyone dig on the hip anymore? I think this might be in the past now.

Most of the scoliosis surgeons are trained at the main centers, UCSF, TCSC, HSS, or in St Louis. My second scoliosis surgeon was trained in Indianapolis.

Training and experience means a lot....where its done, who its with, history, and so forth.

Others should chime in....

Deep breaths...Welcome to the forum

Ed

Hi Ed...

I think just about every ALIF opening is done by a vascular surgeon... at least here in the U.S. It would be really foolish to try the approach without one, as even a small mistake could easily result in a patient's death.

Yes, there are doctors who still routinely use iliac crest bone graft. It greatly increases fusion rate, so some surgeons feel that it's worth the risk of additional pain.


J Neurosurg Spine. 2014 Oct;21(4):595-600. doi: 10.3171/2014.6.SPINE13902. Epub 2014 Jul 11.
A retrospective study of iliac crest bone grafting techniques with allograft reconstruction: do patients even know which iliac crest was harvested? Clinical article.
Pirris SM1, Nottmeier EW, Kimes S, O'Brien M, Rahmathulla G.


OBJECT:
Considerable biological research has been performed to aid bone healing in conjunction with lumbar fusion surgery. Iliac crest autograft is often considered the gold standard because it has the vital properties of being osteoconductive, osteoinductive, and osteogenic. However, graft site pain has been widely reported as the most common donor site morbidity. Autograft site pain has led many companies to develop an abundance of bone graft extenders, which have limited proof of efficacy. During the surgical consent process, many patients ask surgeons to avoid harvesting autograft because of the reported pain complications. The authors sought to study postoperative graft site pain by simply asking patients whether they knew which iliac crest was grafted when a single skin incision was made for the fusion operation.

METHODS:
Twenty-five patients underwent iliac crest autografting with allograft reconstruction during instrumented lumbar fusion surgery. In all patients the autograft was harvested through the same skin incision but with a separate fascial incision. At various points postoperatively, the patients were asked if they could tell which iliac crest had been harvested, and if so, how much pain did it cause (10-point Numeric Rating Scale).

RESULTS:
Most patients (64%) could not correctly determine which iliac crest had been harvested. Of the 9 patients who correctly identified the side of the autograft, 7 were only able to guess. The 2 patients who confidently identified the side of grafting had no pain at rest and mild pain with activity. One patient who incorrectly guessed the side of autografting did have significant sacroiliac joint degenerative pain bilaterally.

CONCLUSIONS:
Results of this study indicate the inability of patients to clearly define their graft site after iliac crest autograft harvest with allograft reconstruction of the bony defect unless they have a separate skin incision. This simple, easily reproducible pilot study can be expanded into a larger, multiinstitutional investigation to provide more definitive answers regarding the ideal, safe, and cost-effective bone graft material to be used in spinal fusions.

--Linda

Irina
03-17-2016, 12:24 AM
[QUOTE=LindaRacine;165847]Hi Ed...

I think just about every ALIF opening is done by a vascular surgeon... at least here in the U.S. It would be really foolish to try the approach without one, as even a small mistake could easily result in a patient's death.

Wow, Linda, I have not realized that ALIFs were that dangerous. I always thought that posterior part was the bigger and riskier portion of a staged procedure.

susancook
03-17-2016, 01:39 AM
I am still dealing with the grief process. I started having back pain 3-1/4 years ago, and 5 mo ago, I learned the extent of my problem. I am angry that no doctor, in my whole life, noted that I had any issue with scoliosis until I was 58!

Thank you very much! I am anxious to move ahead!

Your comment brought back memories. I had physical therapy for a couple of years and finally I told my PCP that I did not think this my pain was a little bit of sciatica. I knew the radiologist that worked where I had my xray, so asked the tech to page him to read it for me immediately. He looked at my xray, which showed a scoliosis curve and he said, "you mean that you didn't know? . I was blown away!
Another bent RN

titaniumed
03-17-2016, 03:05 AM
Sorry Bent, some of my posts are done quickly...and the lingo rolls off my fingertips like my old east coast NJ accent. (smiley face) Hey! Speak English! LOL
I hope I don’t have all the Jersey readers mad at me...He he

I can understand the grief that you feel....and how you could slip through the cracks with a 75 degree lumbar. These things don’t happen overnight.

I was also mad at my old GP many years ago in the 60’s, accepted it since I had no choice, and actually waited 38 years for my surgeries.....Pain tipped the scales of decision. The timing was ok and it all worked out. I am one of the happier scoliosis patients out there and have adapted well.

I guess our biggest fears are the unknown. I had no idea what was eventually going to happen over the last 41 years in living with scoliosis, I did know that I was a surgical candidate back then because every doctor told me so. At that time, the technology science and understanding didn’t exactly convince me that surgery was the answer, so these unknowns are what drive the quest for understanding and knowledge as far as scoliosis is concerned. We didn’t have a scoliosis forum online to talk to others and it truly was a closed world. We are fortunate that we have Linda as our moderator......she works at UCSF at the spine center in San Francisco.

TCSC or Twin Cities Scoliosis Center is in Minneapolis. This is where many of the elder “Guru’s” of scoliosis were trained over the last 50 years.
HSS is Hospital for Special Surgery in NYC. Started around the Civil War era, a leading center for scoliosis.

Accepting scoliosis surgery is not an easy thing.....I waited just about as long as I could and just couldn’t continue on with the amount of pain I was in. There are many adults here with the same story so your not alone. Ask any questions you wish, here or use PM private mail.

Finding the right surgeon is important. You have to be comfortable with this person, and have good communicative skills. When you go in, you will hear terms you never heard before, so it can be overwhelming especially in pain. Bring your husband along. Establish e-mail contact with the PA, nurse, or assistant. This is the easiest way to ask questions later after you leave.

Many surgeons can be short and to the point. There will be questions that you wont know to ask, and many wont volunteer information. Usually, you will hear the words “Any questions?” I heard this from my urologist when I was in trouble with a stone. Heck, I don’t know anything about that. “you have to do WHAT? Use a Uterowhat with a laser? I think I’m going to die now....(smiley face) That all worked out ok.

It might not be a bad idea to read David Wolpert’s book. He did a good job on it.... You can buy it through NSF here....
http://www.scoliosis.org/shop/product-category/books/

Deep breaths

Ed

titaniumed
03-17-2016, 04:09 AM
Hi Ed...

I think just about every ALIF opening is done by a vascular surgeon...



I knew... Sometimes I slang my writing on purpose....

I own two anterior surgery books on ALIF scoliosis surgery procedures.

I needed to know and find it incredibly interesting after discussing with my vascular surgeon who stated that since the peritoneal cavity was not entered, it was to be moved to the side using retractors. He acted like it was no problem, but he goes everywhere if you know what I mean. He started hours before my scoliosis surgeons came in.

These days there is more information on ALIF online, years ago not so much.

Ed

leahdragonfly
03-17-2016, 08:57 AM
I had an open ALIF too with my last broken rod revision 6 months ago, to put a cage at L5-S1 and fuse from the the front. I have a vague memory from post-op day one or two where the surgical residents were rounding on me at the same time as the spine team came by...I remember the surgical resident bragging to the spine resident that they did my ALIF exposure in 10 minutes! I remember thinking it was really quick at the time, but I do know how those guys roll. And my incision is 5-6 inches long. I was most worried about the post-op pain from the ALIF with my last revision, but it really wasn't as bad as I thought, and the posterior incision ending up hurting much more due to them having to try and stretch my heavily scarred fascia closed over a bulkier set of hardware, 6.5 mm rods this last time. Curious Ed how big are your rods? (Now there's a really unique scoli pick-up line, right!!!!)

titaniumed
03-17-2016, 11:30 AM
Curious Ed how big are your rods? (Now there's a really unique scoli pick-up line, right!!!!)

No.....It’s “Show me your x-ray!” ....Hmmm....”Nice rack!” Sharon pointed that one out years ago....ROFL (Scoliosis forum humor)

Gail, do you remember those crazy humorous x-rays I posted a while back? Radiologist’s selfie. Those were hilarious. Let me know if I need to throw those back up. LOL

6mm rods and 8mm pelvic anchors.

I wish mine was 10 minutes.....that’s faster than some draw blood. I had cancer exploration done.....and did ok, fooled em....Ha!

Funny how many revisions incorporate ALIF. Could it be the “Gold standard?” I have read up to a 95% success rate for non-union.

It sure did work like a charm on me....What do you think now? Everything good?

Ed

LindaRacine
03-17-2016, 09:13 PM
Funny how many revisions incorporate ALIF. Could it be the “Gold standard?” I have read up to a 95% success rate for non-union.


No, while some surgeons do a lot of them, many don't do any at all. I think Boachie and Lenke have both stated that they never do them any more. TLIFs do essentially the same thing, but I thin that pseudarthrosis rates may be a bit higher in TLIFs. XLIFs are becoming a lot more common, though they can't be done at L5-S1. The newest technology is DLIFs and OLIFs.

--Linda

susancook
03-18-2016, 03:22 PM
DLIF? OLIF? Why are they better than ALIF?

LindaRacine
03-18-2016, 09:31 PM
DLIF? OLIF? Why are they better than ALIF?

Hi Susan...

I don't know of any research yet, but DLIFs and OLIFs are similar to XLIFs. I think there are probably a lot of reasons I don't know about, but two I can think of immediately are 1) no risk of retrograde ejaculation for men and 2) approach from the side means that it's easier to access the spine, especially in heavier people.

--Linda

titaniumed
03-19-2016, 01:08 PM
No, while some surgeons do a lot of them, many don't do any at all. I think Boachie and Lenke have both stated that they never do them any more. TLIFs do essentially the same thing, but I thin that pseudarthrosis rates may be a bit higher in TLIFs. XLIFs are becoming a lot more common, though they can't be done at L5-S1. The newest technology is DLIFs and OLIFs.

--Linda

I knew about Dr Lenke not doing ALIF’s, but didn’t know about Dr Boachie.... I did see some material on DLIF, similar to XLIF, but didn’t pursue the material.......XLIF has many advantages....No pedicle screw breach being the 1st thing since its done from the side....Operating through portals spares the large openings...Etc

Decisions and thoughts on scoliosis surgery are not easy....There are multitudes of decision making and testimonial threads here, (use search)

Selection on surgical method should be left up to the surgeon. There is no way a layman can decide, but we should be informed.

I always enjoyed going to scoliosis meetings....Bent, if there is one in your area, attending would be a good idea.

“Can I see your x-ray?” (smiley face)

Ed

leahdragonfly
03-19-2016, 08:58 PM
I'm really curious if Lenke doesn't do ALIF what does he do to revise broken rods from from pseudoarthrosis (a topic kinda near and dear to my heart) and how does he deal with L5-S1.? I had a PLIF done at L4-5 along with PSF T8-sacrum during my first surgery in 2010, the XLIF's at L2-3 and L3-4 with the first broken rod revision, then an open ALIF at L5-S1 last September for the 2nd broken rod revision. God I hope that does the trick!!

I read up a little on DLIF and OLIF yesterday and one major advantage is the surgeon can stand upright in a comfortable posture rather than the awkward, ergonomically incorrect position apparently required for some of the other approaches to interbody fusions. I can dig up the article if anyone is interested.

LindaRacine
03-20-2016, 12:15 AM
I'm really curious if Lenke doesn't do ALIF what does he do to revise broken rods from from pseudoarthrosis (a topic kinda near and dear to my heart) and how does he deal with L5-S1.? I had a PLIF done at L4-5 along with PSF T8-sacrum during my first surgery in 2010, the XLIF's at L2-3 and L3-4 with the first broken rod revision, then an open ALIF at L5-S1 last September for the 2nd broken rod revision. God I hope that does the trick!!

I read up a little on DLIF and OLIF yesterday and one major advantage is the surgeon can stand upright in a comfortable posture rather than the awkward, ergonomically incorrect position apparently required for some of the other approaches to interbody fusions. I can dig up the article if anyone is interested.

Hi Gayle...

I'm not sure I follow in terms of the broken rods, since that's always done posteriorally. I think Lenke routinely does TLIFs, but I could be wrong.

--Linda

leahdragonfly
03-20-2016, 06:21 PM
Hi Linda, I thought it was pretty standard when there is a pseudoarthrosis to revise posteriorly as well as fuse the anterior column, both from my own experiences as well as reading. I remember reading along the lines of "if you have pseudoarthrosis you have to go in and do something different rather than just repeating the original surgical plan." That was what I meant about Lenke not doing ALIF's ever. From my readings, I would be less than thrilled at the idea of just refusing posteriorly and hoping it fused!

LindaRacine
03-21-2016, 10:33 AM
Hi Linda, I thought it was pretty standard when there is a pseudoarthrosis to revise posteriorly as well as fuse the anterior column, both from my own experiences as well as reading.

Yes, most people get anterior support in this instance, it's just not always ALIF.

bentRN
03-29-2016, 04:08 PM
I knew about Dr Lenke not doing ALIF’s, but didn’t know about Dr Boachie.... I did see some material on DLIF, similar to XLIF, but didn’t pursue the material.......XLIF has many advantages....No pedicle screw breach being the 1st thing since its done from the side....Operating through portals spares the large openings...Etc

Decisions and thoughts on scoliosis surgery are not easy....There are multitudes of decision making and testimonial threads here, (use search)

Selection on surgical method should be left up to the surgeon. There is no way a layman can decide, but we should be informed.

I always enjoyed going to scoliosis meetings....Bent, if there is one in your area, attending would be a good idea.

“Can I see your x-ray?” (smiley face)

Ed

I don't have a copy of my most recent (and most telling) x-rays. I'm not aware of any scoliosis meetings in my area. This is the only resource I have found. I am beginning to think I am in no man's land when it comes to scoliosis. I saw a neurosurgeon recommended by an orthopaedic surgeon who was recommended by a nurse I work with. No dice. He does not do the surgery and is recommending me to go to Indianapolis, and if not there, to the Cleveland Clinic. He was very nice, and appreciated the seriousness of my condition, but indicated that as long as I can still function, any surgeon would be wary about doing such a major surgery. I am still working, although I am miserable when I get home, and don't do much but sit in the evenings. I can go to Indianapolis, but the surgeon he recommended is a neurosurgeon, and I'm not seeing much to indicate he is a scoliosis surgeon. I'll continue looking...

rohrer01
03-29-2016, 07:31 PM
I don't have a copy of my most recent (and most telling) x-rays. I'm not aware of any scoliosis meetings in my area. This is the only resource I have found. I am beginning to think I am in no man's land when it comes to scoliosis. I saw a neurosurgeon recommended by an orthopaedic surgeon who was recommended by a nurse I work with. No dice. He does not do the surgery and is recommending me to go to Indianapolis, and if not there, to the Cleveland Clinic. He was very nice, and appreciated the seriousness of my condition, but indicated that as long as I can still function, any surgeon would be wary about doing such a major surgery. I am still working, although I am miserable when I get home, and don't do much but sit in the evenings. I can go to Indianapolis, but the surgeon he recommended is a neurosurgeon, and I'm not seeing much to indicate he is a scoliosis surgeon. I'll continue looking...

BentRN,
Welcome! This is the only source or outlet that I have, too. I was told by my insurance company, coincidentally affiliated with the main hospital I go to, that many scoliosis surgeons are neurosurgeons. I wanted to see the doctor I had been seeing out of my HMO, so I looked up EVERY orthopedic surgeon in their hospital to "prove" that they had no one qualified to touch me. Their answer was that this was handled by the neurosurgery department. So then I saw the head of neurosurgery and he referred me to who I wanted to see because none of them were trained in long spinal fusions.

I would recommend calling the neurosurgery department where you've been referred and ask them if they do scoliosis surgeries there on ADULTS. The reason I say that is because "my" hospital did them on children until the doctor hurt her shoulder so badly she couldn't do them anymore. But they never did them on adults because, as the chief of neurosurgery told me, adults are less flexible and more complicated often needing cages, osteotomies, laminectomies, etc. along with having stiffer and more brittle bones.

"My" hospital was listed as one of the nation's top 50 hospitals in 2015. With that kind of reputation I am shocked that they don't offer this kind of surgery. They've done multibillion dollar equipment purchases and remodeling over the last three years or so. You would think that would attract some scoliosis specialists. I know the demand is high and the number of scoliosis surgeons are few where I live. But I'm in the hub of some of the nation's best surgeons and they must all be happy where they are...??? I just don't have access to them because I'm on an HMO.

I'm going to guess that you are in Indiana from your comments. I don't think I've seen any SRS doctors listed for that state. So if you do have surgeons, you will have to do some detective work. The state where I live lists two. Out of those two, one must be a ghost doctor because I could never find him or reach him at the number they have for him. So, basically, we have one. There are others that aren't listed, but they work at the same facility as the "one" and are trained by him. That's the gist I get, anyway. My DIL saw the other one, not listed on the SRS, that trained under the big guy. So you may have some, but like I said you'll have to hunt them down. TiEd went to a STELLAR surgeon in Reno, NV that put him back together. His doctor wasn't listed on the SRS. Ask him about it.

It would be nice to have a scoliosis, or even a back patient support group within 50 miles of home. I'd definitely go. It just seems like it's taboo or something. People don't like or seem to want to talk about it. I KNOW I'm not the only person in my small town with scoliosis. I see at least a few walking around! It just seems to be a sore subject (pun not intended) to talk about it. I was in a cardiac rehab group where I met a fellow scoli. I mentioned to her that I had heart problems that I didn't know if it was aggravated by my scoliosis or not, just to see if she would talk about her scoliosis. She did, briefly. She said she was born with it and had her upper back fused, which I had NO idea because it was noticeable in her lumbar. But I never mentioned that, not wanting her to feel self-conscious that I even noticed at all. It was short and sweet. No offer of advice or how she felt...nothing. That was the last time I tried to reach out to someone. My biggest support is my DIL who was fused when she was 16 and now my son just up and decided to move them to Florida! So now she's gone. :'-(

I don't know why people feel like it's so taboo. I had a cousin by marriage who's lived her life plagued by congenital scoliosis. She doesn't like to talk about it. It's just really weird how people don't want to talk about it. Maybe WE are the weird ones? But you will find EVERYONE here willing to share experiences and give support. Sometimes the forum seems dead at times. But it usually picks back up. We are on what seems to me to be kind of a slow streak. It's always nice to welcome new members!

Anyway, welcome again!
Rohrer01

bentRN
03-30-2016, 02:04 PM
BentRN,
Welcome! This is the only source or outlet that I have, too. I was told by my insurance company, coincidentally affiliated with the main hospital I go to, that many scoliosis surgeons are neurosurgeons. I wanted to see the doctor I had been seeing out of my HMO, so I looked up EVERY orthopedic surgeon in their hospital to "prove" that they had no one qualified to touch me. Their answer was that this was handled by the neurosurgery department. So then I saw the head of neurosurgery and he referred me to who I wanted to see because none of them were trained in long spinal fusions.

I would recommend calling the neurosurgery department where you've been referred and ask them if they do scoliosis surgeries there on ADULTS. The reason I say that is because "my" hospital did them on children until the doctor hurt her shoulder so badly she couldn't do them anymore. But they never did them on adults because, as the chief of neurosurgery told me, adults are less flexible and more complicated often needing cages, osteotomies, laminectomies, etc. along with having stiffer and more brittle bones.

"My" hospital was listed as one of the nation's top 50 hospitals in 2015. With that kind of reputation I am shocked that they don't offer this kind of surgery. They've done multibillion dollar equipment purchases and remodeling over the last three years or so. You would think that would attract some scoliosis specialists. I know the demand is high and the number of scoliosis surgeons are few where I live. But I'm in the hub of some of the nation's best surgeons and they must all be happy where they are...??? I just don't have access to them because I'm on an HMO.

I'm going to guess that you are in Indiana from your comments. I don't think I've seen any SRS doctors listed for that state. So if you do have surgeons, you will have to do some detective work. The state where I live lists two. Out of those two, one must be a ghost doctor because I could never find him or reach him at the number they have for him. So, basically, we have one. There are others that aren't listed, but they work at the same facility as the "one" and are trained by him. That's the gist I get, anyway. My DIL saw the other one, not listed on the SRS, that trained under the big guy. So you may have some, but like I said you'll have to hunt them down. TiEd went to a STELLAR surgeon in Reno, NV that put him back together. His doctor wasn't listed on the SRS. Ask him about it.

It would be nice to have a scoliosis, or even a back patient support group within 50 miles of home. I'd definitely go. It just seems like it's taboo or something. People don't like or seem to want to talk about it. I KNOW I'm not the only person in my small town with scoliosis. I see at least a few walking around! It just seems to be a sore subject (pun not intended) to talk about it. I was in a cardiac rehab group where I met a fellow scoli. I mentioned to her that I had heart problems that I didn't know if it was aggravated by my scoliosis or not, just to see if she would talk about her scoliosis. She did, briefly. She said she was born with it and had her upper back fused, which I had NO idea because it was noticeable in her lumbar. But I never mentioned that, not wanting her to feel self-conscious that I even noticed at all. It was short and sweet. No offer of advice or how she felt...nothing. That was the last time I tried to reach out to someone. My biggest support is my DIL who was fused when she was 16 and now my son just up and decided to move them to Florida! So now she's gone. :'-(

I don't know why people feel like it's so taboo. I had a cousin by marriage who's lived her life plagued by congenital scoliosis. She doesn't like to talk about it. It's just really weird how people don't want to talk about it. Maybe WE are the weird ones? But you will find EVERYONE here willing to share experiences and give support. Sometimes the forum seems dead at times. But it usually picks back up. We are on what seems to me to be kind of a slow streak. It's always nice to welcome new members!

Anyway, welcome again!
Rohrer01

Thanks for the welcome and your thoughts! Actually I live in Ohio. I will just keep looking. It seems there is a Neurosurgeon in Cincinnati who might have some experience, and he may end up being the guy. It seems I may have to put this off for a while.

titaniumed
03-30-2016, 08:03 PM
He was very nice, and appreciated the seriousness of my condition, but indicated that as long as I can still function, any surgeon would be wary about doing such a major surgery.

There is a lot of truth in this. These are serious surgeries that do have their complications.....My surgeon asked me multiple times why I waited so long. I didn’t think I needed to answer....

The problem is that if you don’t see someone who is “actually capable”, you will never know.......If my surgeon didn’t come to town, I would have traveled down to UCSF in San Francisco for some sort of answer. I needed an answer. Doing the “doctor tour” with all the wrong doctors, which many of us do at some point, is tiresome.

I had multiple meetings with my surgeon and heard all sorts of complication related stuff, bla, bla, bla. And it does get absorbed in time, but if you are in serious pain, I think you deserve to hear the words “It will help”. You don’t want to specifically ask this, it has to happen on its own. Sigh....In other words, no swaying, best to keep quiet and don’t sway any surgical decision.

Many here have flown to have surgeries done, its doable. Not terribly convenient, but doable. Picking or hiring your initial surgeon is important. If the right person doesn’t fall out of the sky, I think its worth seeking him out and traveling.

None of this stuff is easy....we know that. Your not alone here, there are many posters here, both that have done well, and have not. Nobody should tell you to have surgery, but its not something to ignore if you are in pain.

I think that seeing some of the heavies, the extreme of extreme, like a 180 degree kyphosis patient with head at knees, and extreme Gibbus deformity patients get repaired and seeing them mention that they were in heaven after surgery or surgeries, had a profound effect on my decision. I thought, “they made it”. Its possible. Dr Boachie was featured of the Discovery program “Surgery saved my life” many years ago, and he operated on this kid that was really bad, and he made it. I watched this program 10 times before my surgeries. It installed hope.

I also needed to hear from at least one patient, “Get it done”. Otherwise I never would have put the effort into seeing my specialist....

It was worth it.

If you are thinking of giving up, I would at least get a set of full x-rays made from anyone, they have to be full, get them burned to disc. Front and side. This way you can e-mail them. Dr Pashman in Los Angeles does look for a small fee, He is credible. You can e-mail to Linda Racine and have one of the scoliosis surgeons at UCSF take a look. You can get a full set from a radiology company, some will discount for cash payment. There are ways. If you do eventually decide on surgery, they will shoot their own set of x-rays.

http://espine.com/

http://espine.com/spinal-balance/

http://espine.com/scoliosis/adult-scoliosis-cases/

If you want to talk with any of us on the phone, just send a PM. There are many here including myself that will be more than happy to talk to you about things...

Hang in there

Ed

rohrer01
03-31-2016, 07:09 PM
Thanks for the welcome and your thoughts! Actually I live in Ohio. I will just keep looking. It seems there is a Neurosurgeon in Cincinnati who might have some experience, and he may end up being the guy. It seems I may have to put this off for a while.

I would call his office and ask if he handles scoliosis cases and if so, how many surgeries he does per year. It's important that you have a guy/gal that does them often. They are more likely to be able to quickly handle problems that may arise mid-surgery or foresee the best outcome by knowing how long to fuse and what type of fusion would be best for your case. If he only does one a month or less, run away! Have you looked on the SRS link to see if there are any member doctors near enough to you that you could consult with?

Are you limited by an HMO like I am? If so, that's a REAL bummer. I have had the head of neurosurgery where I live say I needed to have corrective surgery, especially because of the neck involvement, MY doctor who I've been seeing for about 15 years become wishy-washy telling me it was up to me when I was ready, then shutting me down when I was finally "ready", and another doctor in NC say I needed surgery because I have progression even though I'm under 50 degrees. But my neurosurgeon cow-towed to the opinion of my wishy-washy surgeon, who is the ONLY one my insurance company will pay for. They won't even let me get a second opinion, which is written right in my certificate of coverage. They say he was my second opinion and my neurosurgeon who is not qualified to do the surgery was my first opinion. Say what? I hate dealing with insurance companies!

All the best,
Rohrer01

mabeckoff
03-31-2016, 11:49 PM
Get an excellent surgeon. That is so important.
My NC surgeon messed me up badly, and my CA surgeon had to fix me. I am very fortunate to have located him when I did.

bentRN
04-06-2016, 10:06 AM
Ok, so let's go with traveling. How's that work? I go to NY for a visit or so, then I schedule the surgery. I stay (the night before?) I have the surgery. I stay in the hospital (one week? Two weeks?) Then what?

susancook
04-06-2016, 03:19 PM
Hey Bent!

I traveled from Portland, Oregon to San Fran, CA for my first surgery since my son was there and I could stay with his family postop for 6 weeks, then travel back to Oregon. There is another awesome surgeon in Portland that I had seen 4 times before going to see Dr. Hu, but at that time we lived in the country about 1 hour away from the hospital and I had limited support for recovery, so SF seemed like a better choice.

Here's what I did:

Made an appt with Dr. Hu in SF for an initial consult and had all of my xrays/CT/MRI/notes from prev MDs sent to her. I liked her a lot and then scheduled my 2 day surgery with her.

Went down to SF [12 hour drive] a few days early, went to the hospital and was fitted with a brace, had an appointment with her the day before surgery to ask additional questions.

Had 2 days of surgery, stayed in hospital x 1 week. Went to nearby inpatient "intensive" very imp that you do intensive which is 3 hours of therapy a day. I was 65 at the time and it was a challenge, esp the first 2 days to do 3 hours. Stayed at Rehab inpatient for 2 weeks and learned everything to make me semi-independent.

Went to my son's home to rest until the 6 week visit w/ Dr. Hu, then we drove back to Oregon in 2 days. Some people go to a recommended rest place for a few days before going home from the hospital or rehab.

So......my thoughts and recommendations:

1] Have the best doctor possible. One that does lots of adult deformity scoliosis spine surgery. Maybe best someone that a few people on here recommend.

2] If you are over 60 [unless maybe you run marathons....] go to "Intensive Rehab Inpatient" [not skilled nursing facility] for 1-2 weeks to learn to walk, turn well in bed, get out of bed, bath, do hygiene, rest a little, etc.

3] Ask your doctor's advice nurse about where to stay before and after surgery as far as a residence. Every hospital/doctor has a recommendation.

4] Go a few days before your surgery to get settled. Bring someone with you.

5] When you decide on your doctor, ask on the forum who saw him/her for surgery. Where did they stay? How did they manage? Problems? Advice? Could I have your phone number to call for questions? etc

6] I suggest driving for surgery unless it is >12 hours or so away.

Good luck. If you want to talk with me on how I managed in SF, send me a PM and we can hook up by phone.

You can do this!
Susan

PS: In spite of all of the problems that I have had since my first surgery, I do not regret having my scoliosis surgery. Before I had surgery, I could walk about 1/2 block and then was in so much pain that I needed to sit down. I asked both surgeons that I consulted, "What would happen if I did not have the surgery?" and both said that I would be permanently in a wheelchair within 5 years or so.

jackieg412
04-06-2016, 04:20 PM
Susan is really a trooper. But do remember you need someone to follow up with. And expect some problems. If you expect problems you won't be disappointed when it happens. Make sure to interview some one near you. You may need their help.

titaniumed
04-06-2016, 08:02 PM
Susan is a trooper for sure.

Rohrer, I didn’t know Dr Hey recommended surgery for you a few years back....What levels did he propose?

Scoliosis and insurance completely changed my life. I quit a good job due to crappy insurance and started my own business so I could have control over that. I did this 11 years before my surgeries and the insurance was not cheap. The premiums at the shop ran as high as 10K per month, until I suggested pulling the plug before I had a heart attack signing the next check. Chopping on the cancer riders lowered it substantially. I actually could have paid cash for my surgeries, a triple bypass, and a 3 level ACDF and would have come out flush.....

I always selected the PPO...

Having all our ducks in a row is required. Logistics takes thought....and the most important thing is being educated, and having a positive attitude.

Even if you have all the ducks sorted out, and have the education and knowledge, but lack in the enthusiasm department, rejection is possible since we need to be in this for the long run. Once a scoli, always a scoli, through think and thin. I was rejected in the end till I told my surgeon “I can hang” “I wont give up”.

My horse blinders were on looking straight ahead, focused on the goal.

Damn the torpedoes- Admiral Farragut Mobile bay, Alabama

Ed

susancook
04-06-2016, 11:34 PM
The good Admiral, is rolling over in his grave.
Trooper Susan....still crutchin' along

rohrer01
04-08-2016, 01:59 AM
Rohrer, I didn’t know Dr Hey recommended surgery for you a few years back....What levels did he propose?

Ed

He didn't say. I hadn't seen him and his receptionist said she didn't know what procedure he was working on. That's when the ball dropped and I got an e-mail from him telling me that I had plenty of qualified surgeons in my own area, which I do. It was the insurance! He didn't say it. I was scheduled for a consultation with him, out of pocket. He cancelled it and that was the only explanation I got from him. His receptionist said he prayed about it and decided not to see me. She also told me that he's prayed about surgeries and then cancelled on the patient right before the surgery date. It made me nervous, though, that he was planning a surgery and he hadn't seen ME, yet, just my x-rays.

I don't care that he prays about things and he is very open about his religious affiliations on his website. But I think he should keep that separate and give the patient the real scoop and tell them that it's either the insurance/money or that the procedure may be too complicated for him.

Dr. Tribus suggested T1 to L1 or L2 back when my curve became a double.

It's about to become a triple at the rate I'm going!

Rohrer01

...YES Susan IS a trooper and been through a LOT.

rohrer01
04-08-2016, 02:41 AM
Ed, you really had a heart attack, too? I can't imagine 10K/mo for insurance.

We are the working poor. We'd be better off on public assistance! Barely make it from paycheck to paycheck. Hubby just went on Medicare. When he retires, I may qualify for SSI, but really want to go back to school. There are no PPOs available to me. Everything is an HMO, even on the "market". We can't afford to buy an insurance that goes anywhere and has a decent out-of-pocket. As it is, the insurance company has been ripping us off for years as they say they run on a calendar year, yet our literature that we are provided with says otherwise. There's a very misleading "loophole". Our insurance starts in November. I had a $3000 out of pocket with a $6350 co-insurance, plus I only got a discount on my meds which still totaled about $200/mo and ER was $100 no matter if they kept me or not. It was about a $850/mo policy for me and hubby. His employer payed half of his and it was still that much. That is why I switched to a cheaper policy, $331/mo with no co-insurance. Once the deductible is met it covers 100% of everything, something that the "old" more expensive policy didn't. But I had to meet my "out-of-pocket" twice, which I did. They carried over $3000 from our old policy's "out-of-pocket" to the November/December period because they are on a calendar year. But I paid $6350 in "co-insurance" which didn't count as out-of-pocket. Well it came out of our pockets! I accumulated the $3300 in those two months Nov/Dec to bring it up to $6300. THEN it started over and I had to meet the $6300 again, which I did by the end of February! So I owe $9600 in medical bills plus my monthly premiums until the end of October. I can't afford to switch now because everything is covered 100% until October 31st including my meds and ER. If I go to the open market I will be two months without insurance. I don't know what to do about it. Grrr... Some may say that is cheap. But it's not cheap for us. It's what hubby's employer offers and we HAVE to take it if it meets the minimum requirements. At least hubby is on Medicare now!


I hate messing with insurance. The only good thing that came out of this "mandatory" insurance is they can't put a waver pre-existing conditions and there is no $2,000,000 lifetime cap. For us scolis that need surgery, we can meet that pretty quickly. Well ANYONE with a catastrophic illness can chew through that pretty quickly for that matter.

One thing is true. I always collect more payments from the insurance companies than I pay in. It can't be helped. Even when I wasn't so "sick", my kids were little and managed to get sick often enough to have us come out ahead. My littlest one had a very expensive illness. He's grown and fine now. Phew!

Rohrer01

titaniumed
04-09-2016, 11:42 AM
He didn't say. I hadn't seen him and his receptionist said she didn't know what procedure he was working on. That's when the ball dropped and I got an e-mail from him telling me that I had plenty of qualified surgeons in my own area, which I do. It was the insurance! He didn't say it. I was scheduled for a consultation with him, out of pocket. He cancelled it and that was the only explanation I got from him. His receptionist said he prayed about it and decided not to see me. She also told me that he's prayed about surgeries and then cancelled on the patient right before the surgery date. It made me nervous, though, that he was planning a surgery and he hadn't seen ME, yet, just my x-rays.

I don't care that he prays about things and he is very open about his religious affiliations on his website. But I think he should keep that separate and give the patient the real scoop and tell them that it's either the insurance/money or that the procedure may be too complicated for him.


I agree.....

I wouldn’t chalk this off as a positive review....We also don’t know if this was an office worker communication problem.

So, I guess insurance comes in at a 1st place position on getting all our ducks in a row, and sometimes moving on to another surgeon is just something we have to do. Quality insurance usually provides a green light.

It funny since I am audited on customer response protocol documents, all my ducks have to be in a row, and my customers have to be satisfied. This is something we choose as an ISO registered business, its all about constant improvement and customer satisfaction. If I cant do something, I state that. If I don’t know, I state that. If I can, I cover payment standards and terms and state that in a contract. All of this is very upfront and clear unless an order comes from another country, and they us a translator. (smiley face)

These ISO standards were drawn up many years ago, its part of our “competiveness answer” during the global equalization that is happening throughout the world today. When competition is limited, rules are not as stringent since business is good. When pharmaceutical companies double medication prices and the cash flows, it draws concern.

Doctors need clear communication standards. I also saw this many years ago with a different surgeon. 3 months went by and all of a sudden I get this call for a corticosteroid shot, while boarding a dive boat out in Hawaii. If communication was up to snuff, it would have been ok, but in the end, he lost a customer.

Ed

titaniumed
04-09-2016, 11:51 AM
Ed, you really had a heart attack, too? I can't imagine 10K/mo for insurance.


No. But writing big checks is a leading cause of heart attack! (smiley face) My heart is is good shape from over exercise as a youth. I have read that exercise when younger has greater benefit than as an adult.

I don’t want to turn bents thread into an insurance rant. Better to start another thread. Just wanted to point out what can really matter when choosing a surgeon.

Ed

susancook
04-09-2016, 03:59 PM
Susan is really a trooper. But do remember you need someone to follow up with. And expect some problems. If you expect problems you won't be disappointed when it happens. Make sure to interview some one near you. You may need their help.

Excellent points. I traveled back to SF until I transferred to OHSU after my spinal cord injury at 16 months postop.
I guarantee, something will go wrong or will be unexpected.
Susan

Karen Ocker
04-11-2016, 12:24 PM
Hello, I am a retired nurse anesthetist. I had revision surgery for a old fashioned scoliosis surgery in 1956 - no hardware. At age 58 I was getting out of breath from my curves: 30 cervical, 80 thoracic and 40 lumbar. Since I live in the NY area I went to HSS where dr Boachie-Adjei did my revision: T-4 to sacrum. This was in 2002 when I was 60. I am now 73 and totally pain free. The surgery was the best thing I ever did. You have an advantage in that you have a virgin spine meaning no fusion to take down like mine.
I suggest do your homework and follow the suggestions on this forum.
Try not to let fear paralyze you because it is a subtle foe.
My recovery took 6 months and I went back to work as an anesthetist for 8 more years until I retired at 68.

mistybowe
07-08-2016, 10:43 AM
Ed,

I have been here lurking for quite a while reading posts and gathering as much information as possible. I am finally at the point where I have selected a surgeon and the date is scheduled. I currently have a 55* lumbar curve and a 37* compensatory curve that has become extremely painful in recent years. So much so that it has stopped me from doing all of the things that I love to do like running and road bike races. I am grateful that I got my marathon in last year, but so very sad that I need to let go of something that gave me so much joy and stress relief.

I wanted to personally thank you for all of the guidance and support that I have seen you lend to other people on this forum. I ordered the book that you recommended and look forward to reading it and also having my husband read it so that we are as informed as possible going into this surgery.

"It might not be a bad idea to read David Wolpert’s book. He did a good job on it...."

Thank you :)

Misty in Minnesota

Jjohnsonphd
07-08-2016, 02:42 PM
Welcome Bent,

I am a fresh newbie out of surgery, just over 3 weeks out. I am in Southern California and was surprised how many excellent surgeons are out here. I chose my surgeon because of his experience with extreme cases and his interest in research for newer, less invasive rechniques. He is young but I wanted that, a physician who will be there for me over the years. His bedside manner is amazing and he will not leave the room until you understand everything. I would totally travel for the right surgeon.

For me, I was told hospital would be 3-5 days (!) but I stayed 10 due to pain management problems. I am lucky my parents are healthy and were able to take care of me after while my husband is home with our kids. If you don't have that 24/7 care available for at least 3 weeks, a rehab facility would be right for you. I am 4 weeks on Tuesday and I can not prepare food yet or do any house chores. I can shower but still need a little help.

Good luck on finding the right one. A very important decision!
Jana

titaniumed
07-09-2016, 04:02 AM
Ed,

I have been here lurking for quite a while reading posts and gathering as much information as possible. I am finally at the point where I have selected a surgeon and the date is scheduled. I currently have a 55* lumbar curve and a 37* compensatory curve that has become extremely painful in recent years. So much so that it has stopped me from doing all of the things that I love to do like running and road bike races. I am grateful that I got my marathon in last year, but so very sad that I need to let go of something that gave me so much joy and stress relief.

I wanted to personally thank you for all of the guidance and support that I have seen you lend to other people on this forum. I ordered the book that you recommended and look forward to reading it and also having my husband read it so that we are as informed as possible going into this surgery.

"It might not be a bad idea to read David Wolpert’s book. He did a good job on it...."

Thank you :)

Misty in Minnesota
Well there Misty in Minnesota, thanks for chiming in! Since you are in Minnesota, your location reminds me of the penguins in Antarctica and how they huddle during those brutal storms. Maybe you were on the perimeter and finally decided to rotate to the center of the group for warmth? Glad you made that decision! (smiley face)

Your x-ray looks like mine did years ago.....which became quite painful in my 40’s. I skied and mountain biked in pain, and was pretty good at ignoring pain....but as we all know, we capitulate in our battles, and the rest is history. My surgeon commented that I was in excellent shape from being so active, everything but my spine of course....

When is your date? Can we assume its at TCSC?

Are you ready? Got any questions?

Ed

mistybowe
07-11-2016, 09:39 AM
Well there Misty in Minnesota, thanks for chiming in! Since you are in Minnesota, your location reminds me of the penguins in Antarctica and how they huddle during those brutal storms. Maybe you were on the perimeter and finally decided to rotate to the center of the group for warmth? Glad you made that decision! (smiley face)

Your x-ray looks like mine did years ago.....which became quite painful in my 40’s. I skied and mountain biked in pain, and was pretty good at ignoring pain....but as we all know, we capitulate in our battles, and the rest is history. My surgeon commented that I was in excellent shape from being so active, everything but my spine of course....

When is your date? Can we assume its at TCSC?

Are you ready? Got any questions?

Ed

Good morning Ed,

I spent most of the weekend reading the book that you recommended and it has been very helpful and I feel that it is preparing me well for my next meeting with my surgeon on Friday. I now have many more questions because of it.

I am lucky to live in a place with many qualified surgeons and have consulted with quite a few. Though I have seen Dr. Joseph Perra at TCSC, I have decided to have a surgeon from Twin Cities Orthopedics do my surgery. It is scheduled for Tuesday, August 2nd. I work in commercial real estate that focuses solely on healthcare so I have access to many doctors and have received feedback and references on many and Dr. Jeffrey Dick came highly regarded, specifically from other surgeons. I feel that both would do a great job, at the end of the day, I went with my gut on this one. I hope I have made the right decision.

My biggest question and concern right now is recovery time and how long until I can realistically be back in the saddle at work. I am a 100% commissioned sales person so my income depends on my ability to work. Dr. Dick told me that I can return to work after 3 weeks but I am reading that many people need much longer. My job is very flexible, so I can certainly ease into it and I have a sit/stand workstation. I don't want to push myself too hard here, but want to prepare my business partner for how long I will realistically be out of the loop. Do you think taking care of correspondence and conference calls from home is do-able week 2 or 3 post-op? My husband is taking a full 3 weeks off to stay home and be my nurse so I feel that I have a good support network. Thoughts on recovery that you can share?

As far as being ready, i'm not really sure what I should be doing but I am trying to eat well and I do low-impact exercise of some kind every day, mostly elliptical/treadmill/stairmaster workouts. I'm thinking of the surgery as a race and I am in training mode. I am hopeful that if I am in good physical shape before the surgery, that it will make recovery that much easier. I'm nervous about the pain and it's hard to plan for that. I have no idea how I will handle the pain but am hoping for the best.

Silliest question of all... I work in a business setting and wear heels to work every day. Should I assume that my days wearing cute shoes are over? I know it sounds petty, but am curious what's realistic. Does anyone out there have a footwear recommendation that looks professional but is comfortable and sufficient during the long recovery phase?

I'm sure I will have many more questions and appreciate the online support.

Warm Regards,
Misty

leahdragonfly
07-11-2016, 02:49 PM
Hi Misty,

I'm pretty shocked you were told you could return to work at 3 weeks. Most people feel extremely awful for the first 2-3 weeks, I am sorry to say, and you will no doubt still be taking a considerable amount of narcotic pain medication. I also noticed a great deal of difficulty thinking clearly and concentrating at all at that point, and felt pretty foggy headed and slow for at least 6 wks if not more. At 2-3 weeks you will still be taking several naps a day, and may be thoroughly exhausted after a shower. There's someone here who posted last week about being so discouraged to feel so poorly at the 3 wk point.

I don't want to come across as being negative or discouraging, but I want to give you a realistic idea of how you may be doing at the 3-wk mark. Please don't try to push yourself and rush your recovery. I thought if I was really tough and determined to just suck it up that I could rush my recovery, but it is simply not possible and requires a tremendous amount of patience and time. Please give yourself ample time to heal, since you only get one chance for your new back to heal properly.

As a point of reference, I returned to work as an RN in a busy cardiac cath lab on seated-only duty at 12 weeks post-op after all 3 of my surgeries. It was exhausting, painful, and I feel it set my recovery back my a solid month, but that's just my experience.

Take care and please let us know how things are going. Walk as much as you can and make sure you have thighs of steel before surgery!

mabeckoff
07-11-2016, 07:14 PM
There is no way that you can return to work at 3 weeks. You will be in pain and be on pain killers at that point.

I cannot imagine being able to return to work before three months.

Melissa

jackieg412
07-11-2016, 07:50 PM
I did return to work at 2 months. But it was a big mistake. It put recovery on hold for many months. I am a dental assistant so it was driving to and from work, sitting and standing. I would come home exhausted and need to sleep before anything else. Don't even try it isn't worth it.

titaniumed
07-11-2016, 08:53 PM
Misty

Nice to have Gail (and others) pop in and break the ice....She is spot on.

What kind of surgery is he doing? Did he tell you how many levels? I am wondering on this 3 week recovery timeframe, and well, don’t really think “any” spine surgery done in the age 40-50 group would fall in that 3 week recovery timeframe. Even if he was doing a shorty down in the lumbar, which some patients here have done, I would be weary.....If you need a full fusion, you need a full fusion. Now I have to ask, how old are you? Age is important.

My surgeon told me a year, I figured two years.....(I did have a massive anterior procedure...) At age 49.

For full fusion, the first 6 weeks are pretty much a “survival mode” where every minute is spent trying to get comfortable. Its hard to sleep, and its hard to sit. So, that leaves standing. My laptop was on my kitchen counter, and I would go over and take a peek at things for a few minutes. Attention span is shortened considerably.....I did make major decisions on 100mg plus of Percoset, after looking things over multiple times over a few days. My answers did not come quickly and refused to respond on issues for a few days. It was ok since everyone understood, and waited for me. You will need to prep your inner circle, and your business circle. This is no shoulder surgery, or knee job. Full fusion scoliosis surgery is serious surgery and complications can and do happen. I call it the “C” word. Sigh.....You need to know because we need to know. Its also impossible to cover all that can happen. Be ready with horse blinders and walk and look straight ahead. In other words, Damn the torpedoes. We need to fuse, and not have any infections.

Working from home is possible, short periods of time, and having the ability to lay down when you can. We sleep like cats in our recovery, and its draining. Fatigue last’s a REALLY long time. Years.

On the shoe situation, or high heel thing, maybe if I was Prince I could comment....(smiley face) I think that this isn’t a good idea, even if you were fused to the pelvis a few years post and fused solid. High heels promote or increase the lordosis in your lower spine and really do throw off your balance in the sagittal plane. (side view)(front to back) This affects your neck. Scoliosis surgeons straighten up scoliosis curves and rebuild or set your kyphotic and lordotic balance (viewed from the side)
You have lordosis in your lower spine, or small of your back, and you also have it in the neck. Kyphosis is the opposite curve in your upper back or thoracic spine. Some call it round back.

There is no race, in fact scoliosis surgery is probably the best teacher of patience. I can sit and watch the grass grow now.....setting realistic goals, with realistic timeframes is important. I never thought I would be able to reach my feet, and that was wrong. These thoughts will go through your mind, but as time passes, you heal, and things change. Adapting to change is important. Having a positive attitude means everything, you enter a new chapter of the book, and adapt slowly.

Gayle is right on returning to work at 3 months. There have been posts of misery here on this subject. Part time, ok, a few hours.....I took off 18 months, but had other problems. (broken shoulder and arm and gall stone problems.)

I will send you a PM...

Ed

mistybowe
07-12-2016, 09:45 AM
Good morning and thank you to everyone that responded yesterday. I have my follow-up appointment with my surgeon this Friday so hope to ask many, many more questions. The last time I met with him, he said he would likely fuse L5-L1 and try to not fuse to the sacrum but that it was something we would likely need to do at some point later on.

Ed, I am 42 years young ;) Hearing all of your feedback is making me second guess everything this doctor told me. He came so highly regarded from other surgeons in our medical community that I decided to cancel my follow-up appointment with TCSC. Now I am thinking that was a huge mistake. He was pretty clear that I would recover quickly and could anticipate a 4 day hospital stay and a full three weeks at home before returning to work on a limited or part time schedule, so long as I had a job that was not physical in anyway. What I am after is a realistic timeframe that I can schedule my life around. I was hoping to just get this pesky problem resolved and over with and move on with my life.

I am realizing that I am naïve about what the procedure entails and the more I read the more scared I am about what I am doing. Perhaps its better to just live with the back pain that I have and not take the risk... I don't know. The idea of missing three months of work is frightening. I am on an upward projector at this point in my career and I worry about how this will affect that. I know that in the scheme of things, work should be secondary, but the reality is that it is a major focus at this point in my life.

I'm so confused... so sorry for venting here, I just don't know who else I can talk to.

Misty

leahdragonfly
07-12-2016, 12:22 PM
Hi Misty,

I would really urge you to go ask Dr Dick many, many questions about the planned surgery and specifically how he chooses what levels to fuse, what he thinks will happen to your L5/S1 level and pain if that is left unfused, and how the curve and levels above the fusion will fare if left at this point. I would think your L5/S1 disc should be perfect if he plans to leave it. You want to ask what your outcome realistically will be with the shorter fusion.

I'm just a patient, but looking at your X-rays I would have expected a longer fusion, more like at least T10-sacrum. As an example I had a degenerating 47 degree lumbar curve that required fusion T8-sacrum at age 42. I met two other surgeons who wanted to do smaller, 2 level fusions at the time, but upon being pressed for outcomes, they both said I would need the bigger T8-sacrum within a year or two, so I decided to bite the bullet and have it done right the first time. The reason they gave for doing the smaller surgery first was that "I was too young" to be fused to the sacrum.

I know you didn't ask, but please reconsider getting a second opinion from somewhere very qualified like Twin Cities. There's no rush for this surgery, and you need to commit to it fully informed and with eyes wide open about what to expect. Even if you have to cancel your upcoming surgery date, don't worry, this sort of thing happens all the time. It is your body, and you need to be 100% sure you're choosing the right surgeon and the right surgery for you.

titaniumed
07-12-2016, 12:22 PM
L1-L5 is not considered a full fusion.....that might explain the 3 weeks.

Multiple opinions have great value, especially when it comes to the spine......(Thought for today) And surgeons need to agree somewhat.

I think that you should talk to one of us here on the phone....Myself, or any postie with a few thousand posts, or Linda Racine.

That, and post and read here to help with decision making.....being informed and having all your ducks in a row.

Hard for me to post during the day at work.

Ed

LindaRacine
07-12-2016, 01:10 PM
L1-L5 is not considered a full fusion.....that might explain the 3 weeks.

Multiple opinions have great value, especially when it comes to the spine......(Thought for today) And surgeons need to agree somewhat.

I think that you should talk to one of us here on the phone....Myself, or any postie with a few thousand posts, or Linda Racine.

That, and post and read here to help with decision making.....being informed and having all your ducks in a row.

Hard for me to post during the day at work.

Ed

L1-5 is still not a 3 week recovery. The length of the fusion makes a difference in terms of flexibility after recovery, but recovery from 4 levels isn't really very different from recovery with 14 levels.

Misty, it sounds like you're understanding what people here are telling you. I can't tell you how great that is. So often, people get defensive about their surgeons and assume that what they're told here is BS. It's not. Ed and Gayle, as well as many others, spend a lot of time reading and responding to posts, and their instincts are really good.

I would encourage you to slow down and maybe pursue another opinion to be certain that Dr. Dick is really the right surgeon and that he's selecting the right levels to fuse. It's entirely possible that he's the best surgeon for you, but I have to tell you that most recommendations are based on a doctor's personality and not on their ability.

On the subject of right levels, did Dr. Dick tell you that stopping your fusion at L5 means that there's a high likelihood that you'll need additional surgery to extend your fusion to the sacrum at some point in your future? It's entirely possible that L1-5 is the right thing to do, but I always think it's best that patients understand their risks in terms of complications and the need for additional surgery, so they have the information they need to intelligently decide whether to go for the smaller surgery with the risk of needing additional treatment, or the larger surgery so they're one and done. For the record, I would personally almost always would go for the smaller surgery.

--Linda

mabeckoff
07-12-2016, 03:47 PM
I am not as knowledgeable as ZLinda, Ed etc but I have many surgeries. I have to tell you that picking the correct surgeon is so important. I did not do that and will be paying for his mistakes for the rest of my life.

Melissa

mistybowe
07-12-2016, 04:12 PM
Thank you to all for the wisdom and information. I have my list of questions and feel prepared for my meeting with the doc on Friday. I am bringing hubby along to be my scribe as well. I am afraid that I will not remember everything that is discussed so I need to have it in writing. I will make a decision on getting another opinion after this appointment, but certainly need lots of answers and some peace of mind regarding the recommended course of action. I will provide a detailed update after my appointment.

~Misty

titaniumed
07-12-2016, 11:35 PM
What I am after is a realistic timeframe that I can schedule my life around. I was hoping to just get this pesky problem resolved and over with and move on with my life.

I am realizing that I am naïve about what the procedure entails and the more I read the more scared I am about what I am doing. Perhaps its better to just live with the back pain that I have and not take the risk... I don't know. The idea of missing three months of work is frightening. I am on an upward projector at this point in my career and I worry about how this will affect that. I know that in the scheme of things, work should be secondary, but the reality is that it is a major focus at this point in my life.

I'm so confused... so sorry for venting here, I just don't know who else I can talk to.

Misty
Misty,

Scoliosis surgery doesn’t offer a realistic timeframe.... Its just not black and white. I know, it’s a scary thing, and all of us have been there.....Its nice to think about getting it done and over with, but it just doesn’t happen that easy. In Adults, scoliosis surgery is mainly about pain. The old school thought was about “last ditch effort” which was something that was explained to me by a prior surgeon, they like to leave things be, and do no harm. No doctor wants to do harm. They try anything to avoid surgery. This is actually dictated by insurance companies because surgeries require writing HUGE checks, and they hate that.....All insurance companies make money. (Well almost all of them)

We never asked you about pain. How is your pain? Describe your pain? Have you done shots, have you taken NSAID’s? Prescription NSAID’s not over the counter.....Hot water therapy, massage...etc. Do you have any leg, hip or foot pain? On a 1-10 scale how would you rate your pain? Any burning electrical pain? jolts? flame thrower pain? If you can smell smoke, you know its bad. I am not joking about the flame thrower. (smug face)

All the scoliosis surgeons that I saw used this reserved school of thought, mindful of how the patient is and how well he can handle it. Understanding expectations. Understanding that things can and do go wrong. The actual preparation for scoliosis surgery. It doesn’t happen easily....it takes some time.

If your career is on an upswing, do that now, provided you can handle the pain. Prepare for surgery now, read, post, learn and listen. Go to TCSC and visit and talk to those surgeons. Just because you visit them doesn’t mean you have to schedule surgery. Go and visit a few surgeons, think out a year or two......There is no rush. Take your time.

I canceled a surgery in 2005, I wasn’t ready. All my ducks were not in a row.

And we were all scared.....

Breathe!

Ed

jackieg412
07-13-2016, 08:21 AM
Misty go to your appointment with your questions and remember there will be more. Also the members here have a better idea of how long recovery takes. And really recovery is just doing better day by day. No time frame, just a little better. I was told by my surgeons it would be 6 months and I didn't feel good at 6 months. Did that make the surgery a failure. No I was much better at 1 and a half years not 6 months. So realistically it takes a long time.

Back-out
07-17-2016, 05:44 PM
Hi Ed...

Yes, there are doctors who still routinely use iliac crest bone graft. It greatly increases fusion rate, so some surgeons feel that it's worth the risk of additional pain.


--Linda

As I return to surgical consults after an out-of-my-control delay, my understanding (at least with surgeons I've asked this time around) is that they no longer do iliac crest grafts but rather graft from the rear of the bone in the pelvic girdle, which reportedly causes less pain and is as useful (Frank Schwab and Lenke/Lehman). Doesn't amount to much of a survey, but they ARE tops anyhow.

mistybowe
07-18-2016, 09:42 AM
As I return to surgical consults after an out-of-my-control delay, my understanding (at least with surgeons I've asked this time around) is that they no longer do iliac crest grafts but rather graft from the rear of the bone in the pelvic girdle, which reportedly causes less pain and is as useful (Frank Schwab and Lenke/Lehman). Doesn't amount to much of a survey, but they ARE tops anyhow.

My surgery is August 2nd and my surgeon will be doing the graft from my iliac crest.

Back-out
07-18-2016, 07:13 PM
Rereading Linda's comment, I see I misunderstood it. She specifically said that though many surgeons have abandoned that approach, others evidently thought it carried benefits (better fusion, I guess) for their patients. You are one of them, I see.

bentRN
08-08-2016, 02:03 PM
I started this thread here on "Surgery - 1st time," and now I will be leaving this thread. I have not been keeping up, because my husband was diagnosed with advanced cancer at the beginning of June. Any future posts I do will likely be on "Non-surgical." I met with the third and final surgeon on my list in my area on 8/5, and he tells me I don't meet criteria for surgery because I am balanced and have no nerve-related pain. My focus will be making sure my husband gets the treatment and care he needs, continuing to be the only support for my mother, and working. I will continue pain management which has helped to some extent. The surgeon tells me I will not be able to care for my family if I have the surgery. I didn't even ask him about work!

Thanks to all of you for you input and encouragement!

LindaRacine
08-08-2016, 07:16 PM
I started this thread here on "Surgery - 1st time," and now I will be leaving this thread. I have not been keeping up, because my husband was diagnosed with advanced cancer at the beginning of June. Any future posts I do will likely be on "Non-surgical." I met with the third and final surgeon on my list in my area on 8/5, and he tells me I don't meet criteria for surgery because I am balanced and have no nerve-related pain. My focus will be making sure my husband gets the treatment and care he needs, continuing to be the only support for my mother, and working. I will continue pain management which has helped to some extent. The surgeon tells me I will not be able to care for my family if I have the surgery. I didn't even ask him about work!

Thanks to all of you for you input and encouragement!

You have a lot on your plate! I hope you get an occasional moment to take a little care of yourself.

--Linda

LisalisaB2017
02-26-2018, 02:48 PM
BentRN...

It's fairly common for young surgeons to not belong to the SRS at the beginning of their careers. It's relatively expensive for them to join, and I think they often want to wait and see how much deformity surgery they'll be doing.

Find out where your surgeon did his fellowship. There are certain fellowships where the fellows get a lot more practice in adult deformity than others. Though not a complete list, the best training hospitals in terms of adult deformity are probably (in no particular order):

Hospital for Special Surgery (New York)
Washington University (St. Louis)
Leatherman (Kentucky)
Columbia - not necessarily now, but in the near future(New York)
UCSF (San Francisco)
Rothman (Philadelphia)
Emory (Atlanta)
Jefferson (New York)

Essentially every big deformity surgery has two surgeons, although some private surgeons routinely operate with a PA. At UCSF, a major percentage of deformity surgeries are done by co-surgeons that are both attendings.

Hope that helps.

--Linda
Linda , I'm concerned about having " fellows" participate in my surgery . Should I express my concerns . I'm scheduled 99/13/2018 Dr Lehman Columbia Spine . Thanks

LindaRacine
02-26-2018, 05:45 PM
Linda , I'm concerned about having " fellows" participate in my surgery . Should I express my concerns . I'm scheduled 99/13/2018 Dr Lehman Columbia Spine . Thanks
Most surgeons want at least one additional surgeon helping out in complex spine cases. If it's not a fellow, it's a resident, a P.A., or a second attending. Even if using 2 attendings is possible (that is, there is someone available), it may be impossible to get your insurance company to pay for that second attending. If you're having your surgery at a teaching institution, it's probably unreasonable to request that no resident or fellow be utilized.

--Linda

susancook
02-27-2018, 07:09 PM
Spine surgery is genreally a many hour procedure. My surgeries were 8-10 hours each. Having said that, the first hour is getting into the OR, IV preanesthesia, moving you onto the table, inserting urinary catheter, intubation by anesthetist, hook up of neuro monitoring, positioning, application of various antiseptics, then application of drapes. Meanwhile your surgeon is finishing rounds or reviewing your xrays/ records, having coffee, conferencin with the fellows, residents, etc on the surgical plan. In my experience, the fellow "opens" (the incision). On 2 of my anterior surgeries, the general surgeon opened and spent about an hour and half moving all of my organs and blood vessels aside so that the spine surgeon could access the spine. The spine surgeon for my 3rd surgery about 3 hours after I arrived in the OR. The reason that I know all of this is because a PT student was observing the surgery (with my permission) and I gave her a notebook to chronical the happenings of my surgery.
I remember Irina asking Dr. Hu about what the fellows did during the surgery, having the same concerns that you have, and Dr. Hu ssid, "The fellow wouldn't do anything that I wouldn't do".
Dr. Hart said that he does "the really critical parts of the procedure" but is present mostly in the OR but occasionally very close by when he needs to eat, use the bathroom, etc.
Like Lindale said, the surgery takes at least 2 surgeons and frequently a resident, PA, etc are support persons also.
Hope that this you can understand what I wrote. I had surgery this morning to remove a screw and am typing in my phone laying on my side in the hospital bed having had morphine IV and Hydrocodone early this afternoon, an IV in each arm, vacillating pressure unit on my legs, an uncomfortable catheter in my bladder, and a drain in my back that I just rolled over. I better quit, my cell phone is blurry and I will correct spelling/ grammer tomorrow.
Titanium minus a screw Susan