Re: Looking for a decent surgeon I think

[Guest guest]

Hi leominsterhsg and welcome to the group.

I am wondering why you are thinking you are in need of revision

surgery? Are you experiencing symptoms that are causing you a lot of

pain or disability?

I live down on Nantucket and consulted in Boston and NYC. Both

doctors that I consulted, Rand at New England Baptist and Dr

Ohebna Boachie-Adjej at the Hospital for Special Surgery in NYC

stressed that while they thought I more than likely would be much

improved after surgery..I should carefully consider the surgery and

recognize it was elective surgery.

I know by the time I went ahead with surgery it didn't feel all that

elective to me...and that same thought seems to be common to most

members that have decided to go ahead with surgery. I say this

becasue

even thought I believe these two surgeons to be excellent in their

this field....they both told me I was the one who would know when I

was ready..and sure enough they were right!

Of course if that " little voice " is telling you to start working

toward surgery I believe you should definitley respect that.

In Boston I can only say that I can give a great recommendation for

Dr Rand. He did my surgery a year ago and so far I am doing very

well.

The other doctor I believe others consulted in Boston was Dr

lazer at Beth Isreal.

In NYC you might also consider Dr Boachie or Dr

Errico,another name I hear often with good results. In any event,

you are right...you will probably be wasting your time with most

back doctors...you are looking for a specialist with plenty of

experience dealing with adult scoliosis patients.

Please tell us more about yourself when you can!

Take Care, Cam

[Guest guest]

The second Boston surgeon Cam mentioned was Glazer. Her G key must

have been sticky.

Sharon

PS: Welcome to the group.

[ ] Re: Looking for a decent surgeon I think

> Hi leominsterhsg and welcome to the group.

>

> I am wondering why you are thinking you are in need of revision

> surgery? Are you experiencing symptoms that are causing you a lot of

> pain or disability?

>

> I live down on Nantucket and consulted in Boston and NYC. Both

> doctors that I consulted, Rand at New England Baptist and Dr

> Ohebna Boachie-Adjej at the Hospital for Special Surgery in NYC

> stressed that while they thought I more than likely would be much

> improved after surgery..I should carefully consider the surgery and

> recognize it was elective surgery.

>

> I know by the time I went ahead with surgery it didn't feel all that

> elective to me...and that same thought seems to be common to most

> members that have decided to go ahead with surgery. I say this

> becasue

> even thought I believe these two surgeons to be excellent in their

> this field....they both told me I was the one who would know when I

> was ready..and sure enough they were right!

>

> Of course if that " little voice " is telling you to start working

> toward surgery I believe you should definitley respect that.

>

> In Boston I can only say that I can give a great recommendation for

> Dr Rand. He did my surgery a year ago and so far I am doing very

> well.

> The other doctor I believe others consulted in Boston was Dr

> lazer at Beth Isreal.

>

> In NYC you might also consider Dr Boachie or Dr

> Errico,another name I hear often with good results. In any event,

> you are right...you will probably be wasting your time with most

> back doctors...you are looking for a specialist with plenty of

> experience dealing with adult scoliosis patients.

>

> Please tell us more about yourself when you can!

>

> Take Care, Cam

>

>

>

>

>

>

>

>

>

>

>

> scoliosis veterans * flatback sufferers * revision candidates

>

[Guest guest]

Also, Dr. Kirk Wood at the Massachusetts General was recommended to me by Dr. Hall who did my original surgery at Boston Children's in the 1970s. He is relatively new to the area, having moved here from Minnesota about two years ago.

In a message dated 2/10/06 9:29:54 PM, cammaltby@... writes:

Hi leominsterhsg and welcome to the group.

I am wondering why you are thinking you are in need of revision

surgery? Are you experiencing symptoms that are causing you a lot of

pain or disability?

I live down on Nantucket and consulted in Boston and NYC. Both

doctors that I consulted, Rand at New England Baptist and Dr

Ohebna Boachie-Adjej at the Hospital for Special Surgery in NYC

stressed that while they thought I more than likely would be much

improved after surgery..I should carefully consider the surgery and

recognize it was elective surgery.

I know by the time I went ahead with surgery it didn't feel all that

elective to me...and that same thought seems to be common to most

members that have decided to go ahead with surgery. I say this

becasue

even thought I believe these two surgeons to be excellent in their

this field....they both told me I was the one who would know when I

was ready..and sure enough they were right!

Of course if that "little voice" is telling you to start working

toward surgery I believe you should definitley respect that.

In Boston I can only say that I can give a great recommendation for

Dr Rand. He did my surgery a year ago and so far I am doing very

well.

The other doctor I believe others consulted in Boston was Dr

lazer at Beth Isreal.

In NYC you might also consider Dr Boachie or Dr

Errico,another name I hear often with good results. In any event,

you are right...you will probably be wasting your time with most

back doctors...you are looking for a specialist with plenty of

experience dealing with adult scoliosis patients.

Please tell us more about yourself when you can!

Take Care, Cam

[Guest guest]

I don't think I need surgery at all, right now any way, Maybe 10 or 20 years. The problem is that in my little town I would be sent to physical therapy for back pain and not be monitored for anything else at all. That is just the way it has worked so far anyway. Previously, I was told to do more sit-ups to strengthen my stomach and hence strengthen my back. Sounds logical except I can't do a sit up at all with the rods in my back going from my rear to my neck. I tried 2 separate times to get this specific issue addressed with 2 separate Dr's. When I had my spinal fusion surgery It went the entire length of my back which leaves absolutely no room for an epidural (you should have seen my face when they told me this while I was 7 months pregnant). I don't think the epidural will be an option for me as it is for others. I don't think

that a general practitioner is going to do anything. I have not been to see anyone who has any experience with spinal fusion since I had the initial surgery. I am quickly finding out that sometimes (most of the time) you need to see DR who works with these types of issues on a regular basis, since that seems to be the DR who preforms the surgeries then that is who I would like to either check me out or give me and idea of my options. In a previous post I stated I am not jumping on the surgery boat and I just would like to speak to someone knowledgeable about my condition. I find that when I go to the DR with a name it is a lot quicker than waiting for them to figure out who to send me to and where to go for what with my referral. I also have Marfan's syndrome which a lot of physicians are not knowledgeable about.I actually was referred to an ophthalmologist who refused to check my lenses for this issue. I literally have to call DR

offices and ask the nurse if the Dr is familiar with Marfan's syndrome. Most of the time I get "what is that?" so I know I am not in the right place. It is all just a matter of weeding out the people WHO can and can't do something to help me and I just want to go the most direct route to the person who knows what they are doing. cammaltby <cammaltby@...> wrote: Hi leominsterhsg and welcome to the group.I am wondering why you are thinking you are in need of revision surgery? Are you experiencing symptoms that are causing you a lot of pain or disability?I live down on Nantucket and consulted in Boston and NYC. Both doctors that I consulted, Rand at New England Baptist and Dr Ohebna Boachie-Adjej at the Hospital for Special Surgery in NYC stressed that while they thought I

more than likely would be much improved after surgery..I should carefully consider the surgery and recognize it was elective surgery.I know by the time I went ahead with surgery it didn't feel all that elective to me...and that same thought seems to be common to most members that have decided to go ahead with surgery. I say this becasue even thought I believe these two surgeons to be excellent in their this field....they both told me I was the one who would know when I was ready..and sure enough they were right!Of course if that "little voice" is telling you to start working toward surgery I believe you should definitley respect that.In Boston I can only say that I can give a great recommendation for Dr Rand. He did my surgery a year ago and so far I am doing very well. The other doctor I believe others consulted in Boston was Dr lazer at Beth Isreal.In NYC you might also consider Dr Boachie or

Dr Errico,another name I hear often with good results. In any event, you are right...you will probably be wasting your time with most back doctors...you are looking for a specialist with plenty of experience dealing with adult scoliosis patients.Please tell us more about yourself when you can!Take Care, Cam

Autos. Looking for a sweet ride? Get pricing, reviews, more on new and used cars.

[Guest guest]

I'm going to quote an article I've just read - it cuts to the quick

what we've all been saying.... " Need surgery? Hunt for the

specialist's specialist. You don't just want a doctor who is

comfortable with performing a particular surgery as part of a wide

repertoire; you want the surgeon who is obsessively focused on the

exact technique you need done. Today, one surgeon can gain so much

experience with one very specific surgery that his/her patients have

fewer complications than the national average. Aside from asking

your regular doctor to point you to the maestro of your surgery,

doing internet research can help you locate such a hyper-specialized

surgeon. You just have to hope that one works at your hospital (and

takes your insurance plan), or a road trip might be in store. And

make sure your hospital is Joint Commission accredited for quality

and safety. Go to www.qualitycheck.org to find the best hospital

for you. " How I wish I would have had this article prior to

jumping into my first revision!

~CA ~

> Hi leominsterhsg and welcome to the group.

>

> I am wondering why you are thinking you are in need of revision

> surgery? Are you experiencing symptoms that are causing you a lot

of

> pain or disability?

>

> I live down on Nantucket and consulted in Boston and NYC. Both

> doctors that I consulted, Rand at New England Baptist and Dr

> Ohebna Boachie-Adjej at the Hospital for Special Surgery in NYC

> stressed that while they thought I more than likely would be much

> improved after surgery..I should carefully consider the surgery

and

> recognize it was elective surgery.

>

> I know by the time I went ahead with surgery it didn't feel all

that

> elective to me...and that same thought seems to be common to most

> members that have decided to go ahead with surgery. I say this

> becasue

> even thought I believe these two surgeons to be excellent in their

> this field....they both told me I was the one who would know when

I

> was ready..and sure enough they were right!

>

> Of course if that " little voice " is telling you to start working

> toward surgery I believe you should definitley respect that.

>

> In Boston I can only say that I can give a great recommendation

for

> Dr Rand. He did my surgery a year ago and so far I am doing very

> well.

> The other doctor I believe others consulted in Boston was Dr

> lazer at Beth Isreal.

>

> In NYC you might also consider Dr Boachie or Dr

> Errico,another name I hear often with good results. In any event,

> you are right...you will probably be wasting your time with most

> back doctors...you are looking for a specialist with plenty of

> experience dealing with adult scoliosis patients.

>

> Please tell us more about yourself when you can!

>

> Take Care, Cam

>

>

>

>

>

>

>

>

>

>

>

> scoliosis veterans * flatback sufferers * revision candidates

>

>

>

>

[Guest guest]

,

That is one important observation! It bears repeating:

" You don't just want a doctor who is comfortable with performing a

particular surgery as part of a wide repertoire; you want the

surgeon who is obsessively focused on the exact technique you need

done. Today, one surgeon can gain so much experience with one very

specific surgery that his/her patients have fewer complications than

the national average. "

I think you are right, it is exactly what eveyone is always groping

around trying to find the right words to express; why it is so

important to search for the rather limited number of doctors that

have good track records with this type of revision surgery. And how

tricky it can be getting the doctors themselves to admit that they

are either " inside " or " outside " of their customary " repertoire " .

But as a consumer....we all have every right to ask, and check and

verify.

Thanks .

> > Hi leominsterhsg and welcome to the group.

> >

> > I am wondering why you are thinking you are in need of revision

> > surgery? Are you experiencing symptoms that are causing you a

lot

> of

> > pain or disability?

> >

> > I live down on Nantucket and consulted in Boston and NYC. Both

> > doctors that I consulted, Rand at New England Baptist and

Dr

> > Ohebna Boachie-Adjej at the Hospital for Special Surgery in NYC

> > stressed that while they thought I more than likely would be

much

> > improved after surgery..I should carefully consider the surgery

> and

> > recognize it was elective surgery.

> >

> > I know by the time I went ahead with surgery it didn't feel all

> that

> > elective to me...and that same thought seems to be common to

most

> > members that have decided to go ahead with surgery. I say this

> > becasue

> > even thought I believe these two surgeons to be excellent in

their

> > this field....they both told me I was the one who would know

when

> I

> > was ready..and sure enough they were right!

> >

> > Of course if that " little voice " is telling you to start working

> > toward surgery I believe you should definitley respect that.

> >

> > In Boston I can only say that I can give a great recommendation

> for

> > Dr Rand. He did my surgery a year ago and so far I am doing very

> > well.

> > The other doctor I believe others consulted in Boston was Dr

> > lazer at Beth Isreal.

> >

> > In NYC you might also consider Dr Boachie or Dr

> > Errico,another name I hear often with good results. In any

event,

> > you are right...you will probably be wasting your time with most

> > back doctors...you are looking for a specialist with plenty of

> > experience dealing with adult scoliosis patients.

> >

> > Please tell us more about yourself when you can!

> >

> > Take Care, Cam

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> > scoliosis veterans * flatback sufferers * revision candidates

> >

> >

> >

> >

[Guest guest]

Exactly if I think I have a break problem I don't want to talk to the guy who does oil changes most of the time. I don't want to be any ones guinea pig. This is a huge quality of life issue. I am not going to rely on the person who has seen this once in their lives to know about my options. I want the person who eats, breaths, and lives this stuff every day to look at me. My general practitioner is part of a large network and if I don't go with a particular name in mind I will get referred to some one because they are a part of that network not because they are the best possible person for me to see. <Dawg@...> wrote: I'm going to quote an article I've just read - it cuts to the quick what we've all been saying...."Need surgery? Hunt for the

specialist's specialist. You don't just want a doctor who is comfortable with performing a particular surgery as part of a wide repertoire; you want the surgeon who is obsessively focused on the exact technique you need done. Today, one surgeon can gain so much experience with one very specific surgery that his/her patients have fewer complications than the national average. Aside from asking your regular doctor to point you to the maestro of your surgery, doing internet research can help you locate such a hyper-specialized surgeon. You just have to hope that one works at your hospital (and takes your insurance plan), or a road trip might be in store. And make sure your hospital is Joint Commission accredited for quality and safety. Go to www.qualitycheck.org to find the best hospital for you." How I wish I would have had this article prior to jumping into my first revision!~CA

~> Hi leominsterhsg and welcome to the group.> > I am wondering why you are thinking you are in need of revision > surgery? Are you experiencing symptoms that are causing you a lot of > pain or

disability?> > I live down on Nantucket and consulted in Boston and NYC. Both > doctors that I consulted, Rand at New England Baptist and Dr > Ohebna Boachie-Adjej at the Hospital for Special Surgery in NYC > stressed that while they thought I more than likely would be much > improved after surgery..I should carefully consider the surgery and > recognize it was elective surgery.> > I know by the time I went ahead with surgery it didn't feel all that > elective to me...and that same thought seems to be common to most > members that have decided to go ahead with surgery. I say this > becasue > even thought I believe these two surgeons to be excellent in their > this field....they both told me I was the one who would know when I > was ready..and sure enough they were right!> > Of course if that "little voice" is telling you to start working >

toward surgery I believe you should definitley respect that.> > In Boston I can only say that I can give a great recommendation for > Dr Rand. He did my surgery a year ago and so far I am doing very > well. > The other doctor I believe others consulted in Boston was Dr > lazer at Beth Isreal.> > In NYC you might also consider Dr Boachie or Dr > Errico,another name I hear often with good results. In any event, > you are right...you will probably be wasting your time with most > back doctors...you are looking for a specialist with plenty of > experience dealing with adult scoliosis patients.> > Please tell us more about yourself when you can!> > Take Care, Cam> > > > > > > > > > > > scoliosis veterans * flatback sufferers * revision candidates > > >

>

[Guest guest]

Being in a small town is tough, especially when you have condition(s) that the doctor is unfamiliar with. If you haven't already, get copies of your medical records, X-rays, etc. so that you can point out certain details that you know about yourself (like your spinal fusion). Another thing, that I have done, is give the doctor a copy of a medical report about your condition(s) so that he may be better informed. When I did this, I just stated that I know that I have this and he may like to know more about it so that he can help you better, in getting to where you need to go. I did it in such a way that I respect him as a doctor and human being so I don't expect him to know everything, plus he would have his own special interest group, as any human being. He was part of my health team, and I was the coordinator of that team, deciding for myself what treatment/direction I want to go in.

Any doctor, therapist, etc. that I go to for help with my back, I always ask what they know about fused spines. I can usually tell, by their answer or the way they answer, whether they really do know something about fused spines or if they just have a general knowledge, but not really that knowledgeable.

It's hard when you are in pain, but you have to do a lot of research for yourself, in order to get the help you really need at this time. If you are close to a large town/city, you might want to check out a Self-Management program for Chronic Conditions (that was developed by Stanford University). It helps you with different techniques and developing a better attitude so you can live a healthier life, despite and within the limits of the condition. It lets you take back control of your life, instead of the condition totally controlling it. For me, it helped me pace my life so that I can enjoy it to the fullest possible.

I hope these ideas help you gain control and direction for your life journey with scoliosis. Take care.

Llweyn

-----Original Message-----From: [mailto: ]On Behalf Of Leominster hsg homeschool support groupSent: February 11, 2006 7:14 AM Subject: Re: [ ] Re: Looking for a decent surgeon I think

I don't think I need surgery at all, right now any way, Maybe 10 or 20 years.

The problem is that in my little town I would be sent to physical therapy for back pain and not be monitored for anything else at all. That is just the way it has worked so far anyway.

Previously, I was told to do more sit-ups to strengthen my stomach and hence strengthen my back. Sounds logical except I can't do a sit up at all with the rods in my back going from my rear to my neck. I tried 2 separate times to get this specific issue addressed with 2 separate Dr's.

When I had my spinal fusion surgery It went the entire length of my back which leaves absolutely no room for an epidural (you should have seen my face when they told me this while I was 7 months pregnant). I don't think the epidural will be an option for me as it is for others.

I don't think that a general practitioner is going to do anything. I have not been to see anyone who has any experience with spinal fusion since I had the initial surgery. I am quickly finding out that sometimes (most of the time) you need to see DR who works with these types of issues on a regular basis, since that seems to be the DR who preforms the surgeries then that is who I would like to either check me out or give me and idea of my options.

In a previous post I stated I am not jumping on the surgery boat and I just would like to speak to someone knowledgeable about my condition. I find that when I go to the DR with a name it is a lot quicker than waiting for them to figure out who to send me to and where to go for what with my referral.

I also have Marfan's syndrome which a lot of physicians are not knowledgeable about.I actually was referred to an ophthalmologist who refused to check my lenses for this issue. I literally have to call DR offices and ask the nurse if the Dr is familiar with Marfan's syndrome. Most of the time I get "what is that?" so I know I am not in the right place. It is all just a matter of weeding out the people WHO can and can't do something to help me and I just want to go the most direct route to the person who knows what they are doing.

[Guest guest]

Regarding the epidural. If you are considering more children, and if

you aren't fused to the sacrum, you may be able to get an epidural.

My fusion goes to L3 and when I was about 5-6 months pregnant, I took

my X-rays and visited the anesthesia department where I was going to

deliver. I asked if they were comfortable doing the procedure and

told me to bring my x-rays to delivery and no problem. It is lower

than a typical epidural (caudal). (I wouldn't do it if the doc isn't

confident.) Glad I had it too since my baby was face up and it was a

difficult delivery.

I can't do sit ups either. I can't speak for anyone else, but I hate

PT. It seems that they really don't understand the mechanics of a

fused spine and they hardly seem interested in learning either.

My first surgeon told me that I only needed to do crunches and I would

be fine. No other PT. No other instruction.

> Hi leominsterhsg and welcome to the group.

>

> I am wondering why you are thinking you are in need of revision

> surgery? Are you experiencing symptoms that are causing you a lot of

> pain or disability?

>

> I live down on Nantucket and consulted in Boston and NYC. Both

> doctors that I consulted, Rand at New England Baptist and Dr

> Ohebna Boachie-Adjej at the Hospital for Special Surgery in NYC

> stressed that while they thought I more than likely would be much

> improved after surgery..I should carefully consider the surgery and

> recognize it was elective surgery.

>

> I know by the time I went ahead with surgery it didn't feel all that

> elective to me...and that same thought seems to be common to most

> members that have decided to go ahead with surgery. I say this

> becasue

> even thought I believe these two surgeons to be excellent in their

> this field....they both told me I was the one who would know when I

> was ready..and sure enough they were right!

>

> Of course if that " little voice " is telling you to start working

> toward surgery I believe you should definitley respect that.

>

> In Boston I can only say that I can give a great recommendation for

> Dr Rand. He did my surgery a year ago and so far I am doing very

> well.

> The other doctor I believe others consulted in Boston was Dr

> lazer at Beth Isreal.

>

> In NYC you might also consider Dr Boachie or Dr

> Errico,another name I hear often with good results. In any event,

> you are right...you will probably be wasting your time with most

> back doctors...you are looking for a specialist with plenty of

> experience dealing with adult scoliosis patients.

>

> Please tell us more about yourself when you can!

>

> Take Care, Cam

>

>

>

>

>

>

>

>

>

>

>

> scoliosis veterans * flatback sufferers * revision candidates

>

>

>

>

[Guest guest]

I am done with the child bearing. It was nice having them naturally even if it was my only option at the time. The day after I was out ond a about and fine. I credit that to not having an epidural. It is nice to know though. the terrible thing is that I have no idea where I am fused to. I was 11 and my parents never kept any records of anything. They were not very good parents ... but that is a whole other type of board. I am going to my general practitioner with info in hand and I will let you know what the outcome is. pnuttro <pnuttro@...> wrote: Regarding the epidural. If you are considering more children, and ifyou aren't fused to the sacrum, you may be able to get an epidural. My fusion goes to L3 and when I was about 5-6 months pregnant, I tookmy X-rays and visited the

anesthesia department where I was going todeliver. I asked if they were comfortable doing the procedure andtold me to bring my x-rays to delivery and no problem. It is lowerthan a typical epidural (caudal). (I wouldn't do it if the doc isn'tconfident.) Glad I had it too since my baby was face up and it was adifficult delivery.I can't do sit ups either. I can't speak for anyone else, but I hatePT. It seems that they really don't understand the mechanics of afused spine and they hardly seem interested in learning either. My first surgeon told me that I only needed to do crunches and I wouldbe fine. No other PT. No other instruction.> Hi leominsterhsg and welcome to the group.> > I am wondering why you are thinking you are in need of revision > surgery? Are you experiencing symptoms that are causing you a lot of > pain or disability?> > I live down on Nantucket and consulted in Boston and NYC. Both > doctors that I consulted, Rand at New England Baptist and Dr > Ohebna Boachie-Adjej at the Hospital for Special Surgery in NYC > stressed that

while they thought I more than likely would be much > improved after surgery..I should carefully consider the surgery and > recognize it was elective surgery.> > I know by the time I went ahead with surgery it didn't feel all that > elective to me...and that same thought seems to be common to most > members that have decided to go ahead with surgery. I say this > becasue > even thought I believe these two surgeons to be excellent in their > this field....they both told me I was the one who would know when I > was ready..and sure enough they were right!> > Of course if that "little voice" is telling you to start working > toward surgery I believe you should definitley respect that.> > In Boston I can only say that I can give a great recommendation for > Dr Rand. He did my surgery a year ago and so far I am doing very > well. > The other doctor I believe others

consulted in Boston was Dr > lazer at Beth Isreal.> > In NYC you might also consider Dr Boachie or Dr > Errico,another name I hear often with good results. In any event, > you are right...you will probably be wasting your time with most > back doctors...you are looking for a specialist with plenty of > experience dealing with adult scoliosis patients.> > Please tell us more about yourself when you can!> > Take Care, Cam> > > > > > > > > > > > scoliosis veterans * flatback sufferers * revision candidates > > > >