Apology

September 16, 2005

Hey Trepice2000,

I'm agreeing with Salem here. I have bad days and sometimes feel like strangling anyone who looks at me wrong. When I'm in real pain, I don't want anyone to say anything, or even come near me. I deal with it the best I can but sometimes the pain and aggravation can get the best of even the kindest person. I, too, have been through a lot with my one knee and my bad back, and, believe me, I know what pain is. It is supposed to rain in my part of Tennessee today, so I'm aching pretty good right now (Thank God for pain meds). We all get along pretty well, so let's not let something petty like this come between us, ok. Neutral corners now everyone, it's settled. LOL

Take care all,

Salem Saglime <salem3p@...> wrote:

Trepice2000,

Why are you getting all defensive at what I said? I do read most of the posts and have been thru alot with my knees. I am usually a very gentle, kind understanding person but sometimes the pain gets to me too. We also don't mean to take it out on others but pain can make you irritable sometimes. No matter how good is doing now. I am sure he has been there also like all of us and still has a bad day from time to time. There are people who had replacements done 2-3 years ago and still get pain every now and then during damp, cool days or if they over-do. We need to be able to let someone vent if they are hurting or just need to. Suggestion thou, a person should mention in their post that they are venting so we know and can sympathsize. If someone is truly upset with someone, they should go to the moderator or discuss it with the one they are angry with on private e-mails. was just venting and we should just let it slide

like water off a ducks feather because I am sure he didn't get upset on purpose. I didn't really see that it was that bad that it really even needed an apology buy sounds like me and doesn't like to hurt or upset anyone. Lets try saying thou in the future that we are venting.

A concerned Salem who cares about ya'll and all of us in our group. treprice2000 <treprice2000@...> wrote:

"The pain is horrific and it causes loss of freedom and movement and normal life everyday living. Sometimes we just get so flustered we lash out."Salem, it doesn't sound to me as if cpsaunders is having "horrific pain or loss of freedom". As a matter of fact, she was reporting on a long walk WITHOUT pain or cane. Furthermore, I don't think she owed anyone an apology. The passage that she apparently felt obliged to apologize for did not appear to me to be insulting or disrespectful or a "lashing out". At worst she sounded a bit irritated. If you follow posts here, you may note that there are frequent posters who are rather glib, long-winded, and sometimes write without careful consideration (or editing) and it is possible to become irritated at their posts.

> > It is nice that you wrote the apology to Sassylouyou. It is sometimes so frustrating thou to keep getting these surgeries. The pain is horrific and it causes loss of freedom and movement and normal life everyday living. Sometimes we just get so flustered we lash out. Usually at the first person that adds that last straw even if it is just a tiny straw. We don't mean to get upset but sometimes all this just gets to you. You didn't mean to take it out on Sassylouyou.. We all go thru that frustration and understand. Salem > >

September 16, 2005

I had forgotten that on this site my full name doesn't show. On the

surfacehippy site and the hipsrus site, my name shows. There is also a

far greater proportion of men on those sites, partly because the

procedure itself is suitable for athletic types who want to return to

their sport.

Chris

> C.P.Saunders is a he - OOPS... LOL Sorry Chris

but

> thanks for clarifying. I've had ya she til now. Not used to guys

writing alot...

> so I just kinda assumed.

September 16, 2005

Not revision - I had my second hip done 106 days ago, the first was

done last year. One resurfaced in Belgium at great cost because of

ridiculous wait times here, the other done in Montreal this year.

Chris

> I might add sounded like a great way to do your day.... although I

think I

> would've waited until the 106 degrees was much cooler for the berry

picking.

> LOL >>> OOPS~ Although that statement is correct because berry

picking at 106

> degrees would be a mighty hot time 2 do it & I wouldn't. LOL My

mistake....

> the 106 days wasn't temperture you were speaking of~ you stated 106

days after

> revision~ my error. I didn't notice until another post.

September 16, 2005

I am the quiet, peaceful type until someone crosses me the wrong way. I stood toe to toe with my brother today, and stood my ground. We had a round about a cell phone bill he owed. I helped him get the thing because he couldn't get the credit (big mistake on my part). So, I'm getting tired of the hassle being called all the time, and told him to either pay the bill or give me the early termination fee money and it would be shut off permanently. He gave me the money to pay the bill right then. He fussed a bit, but I stood firm and told him I wasn't putting up with it anymore. You have to stand your ground sometimes.

SassyLouYou@... wrote:

I have bad days and sometimes feel like strangling anyone who looks at me wrong. >>> Giggling... and I though you more to be the quiet peaceful type~ happy to know though I'm not the only one with that condition. LOLNeutral corners now everyone, it's settled. LOL >>> Happy you've had your meds 2day before you choke one and put'm

there. LOL Oh Lord 2 funny~ but I just had to. :-O and :*) <<< That'd be open mouthed HAHAing with tears I can't hardly see the screen over! LOL Thanks for the giggles~ God bless you!

for Good Click here to donate to the Hurricane Katrina relief effort.

September 19, 2005

One resurfaced in Belgium at great cost because of ridiculous wait times here, the other done in Montreal this year. >>> So you've actually had bilateral resurfacing done instead of the first hip done twice right ? Did you have the same wait period when having the second done in Montreal ? and I'm assuming the costs were nearly the same ?

September 19, 2005

The wait time in Montreal was ony 6 months - I just lucked in to it on

the other site. He is doing a clinical study for ASR, but in the

process also takes non-eligible cases by choice. Terms of his study oi

that one hip must be good for at least two more years without surgery

since they are doing a really intense metal ion study and do not need

variables. This one was free under our Canada Health Act, but cost for

the trip to Montreal was mine.

Chris

> One resurfaced in Belgium at great cost because of ridiculous wait

times

> here, the other done in Montreal this year. >>> So you've actually

had bilateral

> resurfacing done instead of the first hip done twice right ? Did

you have the

> same wait period when having the second done in Montreal ? and I'm

assuming

> the costs were nearly the same ?

November 5, 2006

Was there a problem with the post? I thought dwarf-related items were

kosher. People are providing links to Amazon about dwarf-related books.

Did someone complain? I guess I missed it.

Bill

On 11/5/06, cathych49@... <cathych49@...> wrote:

>

> I am sorry I just blew my top. I just want to help. Like...what profit

> would I make from Amazon.com??????

>

November 5, 2006

Dear Bill & --

I'm afraid this was my fault. I sent a private note to that

ended in a " yeah...that's the ticket " feeling. I thought it was clear

that I was joking but apparantly I made a huge mistake and hurt

's feelings. I am truly sorry for this.

's posting of tools to help us was perfectly fine & more than

acceptable. Again, I am sorry for any misunderstanding and hurting a

beloved member's feelings.

Rose

June 23, 2007

Peggy,

Who, exactly, is reluctant to talk on this forum about their surgeon? If you can tell us, perhaps we can put their minds at ease.

The fact is that a good number of surgeons who are not adept at these surgeries do not tell their patients that and do not help them find a surgeon who is proficient. Instead, to cover themselves, they tell the patients there is nothing wrong or nothing that can be done, or there is nothing wrong and it's all in their head, or the surgery is too dangerous and shouldn't be done. We know this has happened because that's what we've been told. In fact, I myself was told there was nothing wrong with me that could be helped by surgery. I was not even told that I had flatback, when he doctor knew I did. I am not the only one who has been mislead this way.

Bonnie

[ ] apology

I apologize for causing a stir. I will see if I can get my words straight so I can get my point across.

I have nothing against the top surgeons in this field and I'm not going to try to name them all. But, I do think there are other surgeons we are not hearing about because people are reluctant to post about them and get the 3rd degree. There needs to be a way to educate people on the questions to ask the surgeon they are going to see. They need to know what to ask so they can determine if the surgeon is qualified for revision surgery. And I also think a good surgeon who has not done these surgeries would tell the patient so and help them find a surgeon who is qualified, as Dr. Guirgues did for me. He was up front that he did not have the ability nor the resources to do my revision. A really good surgeon will tell you when "it's over their head."

Newbies and others need to be approached in such a way that they won't feel intimidated. We need to tell them what to look for in a surgeon and then suggest surgeons near them that we know are qualified. Don't say right off the bat that their surgeon isn't qualified just because we've never heard his/her name before. Do you know what I'm trying to say? We need to educate them, tell them what to look and what to ask their surgeon, and let them determine if he/she is the right one for them. I think there are surgeons we are not hearing about just because the lurkers are reluctant to give their name because they don't want to be bombarded with questions.

I look back at my first posts and the responses and I'm surprised I am still here participating. There were periods of time I wouldn't say anything just because I felt I was wrong to see Dr. Reeg. It turned out, when I asked him the questions, that I was uncomfortable with his approach and kept looking for a surgeon. With my insurance I didn't have the option of going out of state to one of the top surgeons. I had to do the best I could in my area. Several in this group that never post also have to do that - they have to find the best surgeon they can in their area but they are reluctant to talk about it. I wish everyone would share their experiences so we can learn of all the surgeons that have performed this surgery with good outcomes, and also learn of the ones who had poor outcomes leading to find another surgeon to fix it. We need to learn about all surgeons. Then we all to the top 6 and have more choices for everyone.

Peggy

June 23, 2007

Dear Peggy,

There are a great deal of us who have had bad experiences with doc's,MANY of them in our search to find out first what was wrong with us, and secondly, one qualified to do surgery on us. I saw twenty some doc's for over fifteen years looking for answer or some kind of treatment for my increasing pain, inability to stand up straight, and me being unable to walk very far. I have been insulted, told it was in my head, had doc's tell me nothing could be done, that if I had surgery to try and correct it , it could kill me, or I could and probably would come out of it worse than when I went in. I had one idiot ortho in California offer to take out one of my Harrington Rod hooks to fix it, another who said he'd go in and SEE what was wrong. You are naive if you think a doc would refer you to another doc if they don't have the answer, I'm living proof they don't. I was for the most part in major cities, or nearby, and Flatback was NEVER mentioned to me, and they have known since the eighties that our distraction rods were likely to cause Flatback in us. Dr. Kumar was the first doc to tell me I had Flatback, explained the whole thing to me. I cried the whole way home from the visit, the relief that what was happening to me HAD A NAME!

I believe you have always been treated well here, patiently and with the kindness that all these members can give and do often to many scared members who have been just diagnosised. Of course we were concerned about some of your choices, especially when you were considering Dr, Reeg for your revision. Know that many of us who have been on the boards for years have seen the screw ups of unexperienced doc's giving revision a try. This isn't the kind of surgery you hand over to unexperienced hands.There is an excellent list of questions to ask potential surgeons in the files section. Also it's up to individual members to do their own research, just google Flatback, and you can read for the rest of the day. The files section is loaded with excellent info on Flatback, and members stories are full of great personal accounts of flatback journeys ( have you put yours there?)

Your beliefs are yours, but know that all of us here are devoted to helping others in their walk through Flatback. Cam and I and the other moderators devote a good deal of time, providing others with much needed support while going through this life altering surgery and recovery, not to mention all our wonderful members who support each other too. I believe you have been helped by these great members, and you saying you wonder why you are still here paticipating, I find sad.

[ ] apology

I apologize for causing a stir. I will see if I can get my words straight so I can get my point across.

I have nothing against the top surgeons in this field and I'm not going to try to name them all. But, I do think there are other surgeons we are not hearing about because people are reluctant to post about them and get the 3rd degree. There needs to be a way to educate people on the questions to ask the surgeon they are going to see. They need to know what to ask so they can determine if the surgeon is qualified for revision surgery. And I also think a good surgeon who has not done these surgeries would tell the patient so and help them find a surgeon who is qualified, as Dr. Guirgues did for me. He was up front that he did not have the ability nor the resources to do my revision. A really good surgeon will tell you when "it's over their head."

Newbies and others need to be approached in such a way that they won't feel intimidated. We need to tell them what to look for in a surgeon and then suggest surgeons near them that we know are qualified. Don't say right off the bat that their surgeon isn't qualified just because we've never heard his/her name before. Do you know what I'm trying to say? We need to educate them, tell them what to look and what to ask their surgeon, and let them determine if he/she is the right one for them. I think there are surgeons we are not hearing about just because the lurkers are reluctant to give their name because they don't want to be bombarded with questions.

I look back at my first posts and the responses and I'm surprised I am still here participating. There were periods of time I wouldn't say anything just because I felt I was wrong to see Dr. Reeg. It turned out, when I asked him the questions, that I was uncomfortable with his approach and kept looking for a surgeon. With my insurance I didn't have the option of going out of state to one of the top surgeons. I had to do the best I could in my area. Several in this group that never post also have to do that - they have to find the best surgeon they can in their area but they are reluctant to talk about it. I wish everyone would share their experiences so we can learn of all the surgeons that have performed this surgery with good outcomes, and also learn of the ones who had poor outcomes leading to find another surgeon to fix it. We need to learn about all surgeons. Then we all to the top 6 and have more choices for everyone.

Peggy

June 23, 2007

I'm not going to give names, but there have been people that have called me and sent me emails off the group telling me their reluctance to speak of their surgeons because they are not one of the top guns and they don't want to go through all the questioning regarding their decision to see someone else. They were glad that I was willing to post my progress since I am not seeing one of the well-known surgeons talked about in this group.

The first surgeon I saw 7 years ago told me I had flatback but did not need surgery. He was a good surgeon, I had been told, but to me he is a bad surgeon because he didn't know what he was talking about and I never recommend him to anyone. The next surgeon I saw admitted that he did not have the experience or the facility to do the surgery I needed done. He helped me find a qualified surgeon. Then I went to a spine specialist and in asking him the questions Cam has posted in the file section, I wasn't comfortable with his responses, especially when his nurse said I shouldn't be researching on the internet. He's a good surgeon but I wouldn't recommend him to anyone either now even though he did my daughter's surgery 3 years ago for scoliosis. Then I found my surgeon that did the revision. I wish doctors would realize they are not God, and admit when they don't know something and refer you to someone with more experience when needed. We shouldn't have to self-diagnose ourselves like it seems we have all had to do because a doctor couldn't admit what was wrong with us or that they just weren't familiar with the problem.

Peggy

[ ] apology

I apologize for causing a stir. I will see if I can get my words straight so I can get my point across.

I have nothing against the top surgeons in this field and I'm not going to try to name them all. But, I do think there are other surgeons we are not hearing about because people are reluctant to post about them and get the 3rd degree. There needs to be a way to educate people on the questions to ask the surgeon they are going to see. They need to know what to ask so they can determine if the surgeon is qualified for revision surgery. And I also think a good surgeon who has not done these surgeries would tell the patient so and help them find a surgeon who is qualified, as Dr. Guirgues did for me. He was up front that he did not have the ability nor the resources to do my revision. A really good surgeon will tell you when "it's over their head."

Newbies and others need to be approached in such a way that they won't feel intimidated. We need to tell them what to look for in a surgeon and then suggest surgeons near them that we know are qualified. Don't say right off the bat that their surgeon isn't qualified just because we've never heard his/her name before. Do you know what I'm trying to say? We need to educate them, tell them what to look and what to ask their surgeon, and let them determine if he/she is the right one for them. I think there are surgeons we are not hearing about just because the lurkers are reluctant to give their name because they don't want to be bombarded with questions.

I look back at my first posts and the responses and I'm surprised I am still here participating. There were periods of time I wouldn't say anything just because I felt I was wrong to see Dr. Reeg. It turned out, when I asked him the questions, that I was uncomfortable with his approach and kept looking for a surgeon. With my insurance I didn't have the option of going out of state to one of the top surgeons. I had to do the best I could in my area. Several in this group that never post also have to do that - they have to find the best surgeon they can in their area but they are reluctant to talk about it. I wish everyone would share their experiences so we can learn of all the surgeons that have performed this surgery with good outcomes, and also learn of the ones who had poor outcomes leading to find another surgeon to fix it. We need to learn about all surgeons. Then we all to the top 6 and have more choices for everyone.

Peggy

June 23, 2007

All,

I understand

what Peggy is talking about. I actually wrote (to her personal email

addy) about this topic just a few days ago. offered sound advice (as always).

What Peggy describes is also very valid.

When I first

found the forum, like everyone else I came as a newbie. I lurked to find out

more about this “flatback” thing and what I was facing. I quickly

discovered that any doctor was held as suspect if he/she was unknown within the

group. I confess that this was very intimidating to me. However, as I continued

with the forum and my research, I began to realize that because of the

complexity of the syndrome and the surgery for it, forum members were doing their

best to protect me from a potentially dangerous outcome should I go with an

inexperienced doctor and one unfamiliar or expert in dealing with flatback.

For various

reasons/situations I was relatively certain that I would be unable to go with

the “known” doctors (forum) all of whom are outside my geographical

area. I live in the Northwest, specifically Oregon. I had an orthopedic surgeon whom I

trusted. He had performed shoulder surgery, successfully, so naturally I saw

him about my back. He was VERY reluctant to do any surgery on my back. He told

me it was very complex, would be highly specialized, and most surely should NOT

be taken lightly. I saw him over the course of four years. He had asked me to

see another doctor to get a second opinion and I did that. The doctor he wanted

me to see was Dr. Flemming. Dr. F immediately recognized my condition,

explained it to me, explained treatment options, and gave me a lot of info.

I waited because

I hoped it would all go away. Last year the pain finally became nearly

unbearable. I went to see my original ortho but just didn’t have a sense

of peace about his doing my surgery.

Long story

short, during my research Dr. Flemming’s name kept coming up because he

was considered to be one of the foremost doctors in the region to treat spinal

deformities. Armed with the info I’d learned from the forum group and

info I’d gleaned from the internet, I made an appointment to see him

again. The information he provided, the procedures he planned to use should he

perform my surgery, were laid out in detail—start to finish. The things

he told me sounded quite familiar because I’d already heard about them

all through forum member information.

I decided to

have my surgery with Dr. Flemming and it was done on February 14th this

year. I cannot say enough wonderful things about him, his staff, the hospital

staff, and my care while there. As for my outcome, I have lordosis again. I

look wonderful (if I do say so myself… ;-D) and while I still have minor pain,

it’s livable and not even close to what I did have. I no longer take pain

pills. Hopefully, as fusion continues, what pain I do have will lessen more and

more.

I did my

research and was able to determine that although unknown, although he does not

appear on any “approved” lists of flatback doctors, Dr. Flemming IS

a flatback revision expert, he does know what he’s doing, has performed

many, many flatback surgeries since he became a fully-fledged doc in 1984. He

told me recently, however, that he’s now only doing about four or five a

month because he’s finding fewer and fewer H-rod flatback patients to “fix”.

I suspect (as I related to ) that the sparser population of the NW,

compared to more densely-populated areas like the Midwest or back east, is

yielding fewer flatback patients.

I’m a

Texan and during some of my talks with Dr. F, I learned that early on he participated

in surgery fellowships to learn about spinal deformity which he wanted to make

the focus of his practice. He told me that he learned a lot from a group of Texas doctors. I asked

him what that was. He told me that he learned how LITTLE they knew about

flatback (LaGrone wasn’t one of them) and how much he was determined to

NOT be like them! He later performed with other docs in other regions and learned

much more.

Dr. Flemming is

definitely another highly qualified physician who can perform this surgery.

Still, he’s only known to forum members through my experience with him. A

bit like Kumar is known only because of . But he’s every much as

capable (we can see this in ’s success) as the others. In time, if

all continues to work out well for me, and if someone else decides to go with Dr.

F and has a successful outcome, then other forum members will be able to view

him with even more confidence. That’s really what it’s all about. I

felt confident about him, very much so, because I did my research.

As the forum

grows, I expect the list of doctors’ names who are expert in this field,

will also grow. I think when dealing with newbies, it’s important to

remember to encourage them how vital it is to do the research on a potential

doctor’s qualifications, on the procedure for FB correction, to

understand how complex it is and not to be taken lightly. Then if they’ve

done their homework and really feel an unknown is still a good choice, to

support that decision. By doing so we will hopefully add more and more

qualified doctors’ names for patients to choose from.

Sorry this is so

long. I’ve been lurking and not wanted to do the “me too”

thing. Don’t want any of you to think I don’t care. Just know that

for those of you facing surgery and newly out…I’ve been praying for

you.

Kay

June 24, 2007

I understand Peggy as well. My surgeon is a neurosurgeon instead of an ortho, and I personally feel MORE comfortable with that particular point of his expertise. It has been mentioned on more than one occasion by various people here that they believe orthos are more qualified to do this surgery than neurosurgeons. It's just a difference of opinions I suppose. As I've posted before, I myself think that a good revision doctor probably has extensive cross-training in both the orthopedic and the neurosurgery aspect of this - the surgery involves the fusing of bones and protection of the spinal cord as well. One thing without the other is useless. I've never perceived anyone as "bashing" my doctor, but I have felt uncomfortable sometimes about people commenting about neuros not being as qualified and urging people to seek out a good ortho. Many neuros aren't qualified at all, but as we know - neither are many orthos. It was also interesting back during the discussion of the Grey's Anatomy scoliosis episode how many comments there were about why they chose to portray a neurosurgeon doing the surgery instead of an ortho (and of course being TV land, it was unrealistic having a doc not experienced enough to be touching someone as complex as that patient was).

I understand that everyone here is trying to help and support people - especially those people new to flatback trying to find a competent surgeon. And I understand that the majority of these competent surgeons happen to be primarily trained in orthopedics.

While my doctor (Ondra and also Koski) seems to somewhat be on the list of "known" doctors, I have noticed that he rarely gets spoken of as a resource in the midwest. Most people are quick to point out Bridwell & Lenke, but rarely mention Ondra. And I have been urged many times to try to seek out someone else as well - though that is unrelated to this discussion (I would love another perspective on my surgery, but am unable physically to travel for another opinion and don't have the finances to do so either).

I know that everyone here cares about all the members and that they want us to have the best possible outcomes to our surgeries. A big step of doing that is by going with a competent, experienced revisionist. Obviously there are many more competent doctors than those commonly discussed here. When someone new comes on board and mentions an "unknown" doc, it's great that people encourage them to ask questions and find out how experienced that doctor is. It (to me) sometimes comes across as giving the third degree though, especially if they choose to stick with their unknown doctor. So I do agree with Peggy, that some people might feel uncomfortable mentioning their unknown doctor because they have chosen to go with someone not on the short list of talked about revisionists. I don't feel anyone does it to be mean, they are doing it out of concern that the doctor may be inexperienced and to be sure that a member is making the best choice for their health and well-being.

I'm sure that as time goes on, the list of known qualified revisionists will grow a lot as well. Especially since it is becoming apparent that traditional Harrington rods are not the only distraction device that is giving rise to flatback. As more Luque rod patients age, I'm sure that they will also be facing these similar difficulties. And who knows about the long-term effects of CD instrumentation and the other many new hardware! At least we are benefitting from the experiences of all of you who have come before us.

I also really wish that this thread could be closed so that the group can continue concentrating on what they do best - giving support to each other dealing with flatback.

>> All,> > I understand what Peggy is talking about. I actually wrote (to her> personal email addy) about this topic just a few days ago. offered> sound advice (as always). What Peggy describes is also very valid.> > When I first found the forum, like everyone else I came as a newbie. I> lurked to find out more about this "flatback" thing and what I was facing. I> quickly discovered that any doctor was held as suspect if he/she was unknown> within the group. I confess that this was very intimidating to me. However,> as I continued with the forum and my research, I began to realize that> because of the complexity of the syndrome and the surgery for it, forum> members were doing their best to protect me from a potentially dangerous> outcome should I go with an inexperienced doctor and one unfamiliar or> expert in dealing with flatback.

> > Kay>

June 24, 2007

Folks, I had my revision just last Aug-Sept. with a "well-known" flatback surgeon, but have been on the flatback forums (all 3 that I've been acquainted with) long enough to remember when he wasn't on that list. I wasn't in a great deal of pain when I first diagnosed myself, and I have an extra complication that goes with congenital scoliosis, so I bided my time and let the docs practice on others, while watching to see who would be my likely choice of surgeon when (ok, I was in denial and said "if") the time came.

I am thrilled to have Dr. Flemming's name to add to our list of likely revision surgeons. We NEED to have more good names to throw around, and Kay, I applaud your work in finding and interviewing him, as well as your courage in going through with the surgery. And congrats on the awesome outcome!!

Because the veterans in the group have "talked" with hundreds of fellow flatbackers, we perhaps get a little sure of ourselves that we know most of the good docs. But even though hundreds of people have gone through these groups, there are undoubtedly many, many others who never make it to the electronic chats. We've had people come and go who thought they had "expert" surgeons, only to have bad outcomes, worse pain, and then to disappear from our midst. Those ones scare me, and probably others like me. We don't want our newbies to end up in the "failed revision" dump! My own half-sister scared me by going for a fusion in addition to her scoli fusion last year, with a surgeon who told her it wasn't a revision because he left an unfused level between it and her long fusion. I don't think he made her worse, but she isn't better either. (I should clarify that she doesn't have flatback as such.)

I guess what I'm trying to say is that we only get involved because we care. And we can't help if we don't ask questions. It takes a lot of courage to go online with something like this. But there's really no reason to be intimidated by us old-timers. And if you have information we don't have, especially such great info. as a super "new" revision doc like Flemming, by all means, pipe up!

Sharon

RE: [ ] apology

All,

I understand what Peggy is talking about. I actually wrote (to her personal email addy) about this topic just a few days ago. offered sound advice (as always). What Peggy describes is also very valid.

When I first found the forum, like everyone else I came as a newbie. I lurked to find out more about this “flatback” thing and what I was facing. I quickly discovered that any doctor was held as suspect if he/she was unknown within the group. I confess that this was very intimidating to me. However, as I continued with the forum and my research, I began to realize that because of the complexity of the syndrome and the surgery for it, forum members were doing their best to protect me from a potentially dangerous outcome should I go with an inexperienced doctor and one unfamiliar or expert in dealing with flatback.

For various reasons/situations I was relatively certain that I would be unable to go with the “known” doctors (forum) all of whom are outside my geographical area. I live in the Northwest, specifically Oregon. I had an orthopedic surgeon whom I trusted. He had performed shoulder surgery, successfully, so naturally I saw him about my back. He was VERY reluctant to do any surgery on my back. He told me it was very complex, would be highly specialized, and most surely should NOT be taken lightly. I saw him over the course of four years. He had asked me to see another doctor to get a second opinion and I did that. The doctor he wanted me to see was Dr. Flemming. Dr. F immediately recognized my condition, explained it to me, explained treatment options, and gave me a lot of info.

I waited because I hoped it would all go away. Last year the pain finally became nearly unbearable. I went to see my original ortho but just didn’t have a sense of peace about his doing my surgery.

Long story short, during my research Dr. Flemming’s name kept coming up because he was considered to be one of the foremost doctors in the region to treat spinal deformities. Armed with the info I’d learned from the forum group and info I’d gleaned from the internet, I made an appointment to see him again. The information he provided, the procedures he planned to use should he perform my surgery, were laid out in detail—start to finish. The things he told me sounded quite familiar because I’d already heard about them all through forum member information.

I decided to have my surgery with Dr. Flemming and it was done on February 14th this year. I cannot say enough wonderful things about him, his staff, the hospital staff, and my care while there. As for my outcome, I have lordosis again. I look wonderful (if I do say so myself… ;-D) and while I still have minor pain, it’s livable and not even close to what I did have. I no longer take pain pills. Hopefully, as fusion continues, what pain I do have will lessen more and more.

I did my research and was able to determine that although unknown, although he does not appear on any “approved” lists of flatback doctors, Dr. Flemming IS a flatback revision expert, he does know what he’s doing, has performed many, many flatback surgeries since he became a fully-fledged doc in 1984. He told me recently, however, that he’s now only doing about four or five a month because he’s finding fewer and fewer H-rod flatback patients to “fix”. I suspect (as I related to ) that the sparser population of the NW, compared to more densely-populated areas like the Midwest or back east, is yielding fewer flatback patients.

I’m a Texan and during some of my talks with Dr. F, I learned that early on he participated in surgery fellowships to learn about spinal deformity which he wanted to make the focus of his practice. He told me that he learned a lot from a group of Texas doctors. I asked him what that was. He told me that he learned how LITTLE they knew about flatback (LaGrone wasn’t one of them) and how much he was determined to NOT be like them! He later performed with other docs in other regions and learned much more.

Dr. Flemming is definitely another highly qualified physician who can perform this surgery. Still, he’s only known to forum members through my experience with him. A bit like Kumar is known only because of . But he’s every much as capable (we can see this in ’s success) as the others. In time, if all continues to work out well for me, and if someone else decides to go with Dr. F and has a successful outcome, then other forum members will be able to view him with even more confidence. That’s really what it’s all about. I felt confident about him, very much so, because I did my research.

As the forum grows, I expect the list of doctors’ names who are expert in this field, will also grow. I think when dealing with newbies, it’s important to remember to encourage them how vital it is to do the research on a potential doctor’s qualifications, on the procedure for FB correction, to understand how complex it is and not to be taken lightly. Then if they’ve done their homework and really feel an unknown is still a good choice, to support that decision. By doing so we will hopefully add more and more qualified doctors’ names for patients to choose from.

Sorry this is so long. I’ve been lurking and not wanted to do the “me too” thing. Don’t want any of you to think I don’t care. Just know that for those of you facing surgery and newly out…I’ve been praying for you.

Kay

June 24, 2007