Re: Dr Boachie-always surgery ?

[Guest guest]

Hi.

I've written before. My name is Kathy and I am a revision patient of Dr.

Boachie. It has been 2-1/2 years since my surgery and I have to say I am

doing very well. I never stayed on pain medication longer than 2 months

after surgeries. I was only on percocet for maybe 4 weeks after the surgery

and then something less strong afterwards. I am also fused from T1 to L5

with a skinny frame but knock on wood, haven't had any lower pain. The only

pain I have been experiencing lately believe it or not is my shoulders,

especially my left one. I can only sleep on that side or my back and I am

not sure if that is what is doing it. I plan on calling the doctor soon

because it has been waking me up all night.

I hope you get good news from Dr. Boachie. Like many of us have said, he is

very nice and will take his time with you and explain everything to you. He

is the only doctor I have ever met that I have complete confidence in. Good

luck and let us know how you make out.

Kathy

[Guest guest]

Hi Bea...

I don't think your pain specialist is doing you any favors. You both

need to understand that the people who go to him are the people who have

bad outcomes. The patients who have good outcomes don't need pain

specialists. Please ask Dr. Boachie for the names of some of his

revision patients. That might help you put your mind at ease. There

are no guarantees, but I know a lot of people who have regained their

lives after having revision surgery.

Good luck with your appointment.

Regards,

[Guest guest]

Dear --I am a mom with a daughter who had a spinal fusion over a year

ago...i just wanted to say that for a year now, I have wanted to unsubscribe

to this mailing list because the notes come into my work email and it is

just too much mail on a already busy address--but I just can't seem to

disconnect from this--and I read most of the post. You are amazing at the

wealth of information you hold and give so much valuable information to

people that are lost for help. Whatever the medical world has given you

over the years, you have given back to this group ten fold and I am sure I

am not alone with my sincere thoughts. Kudos to you and I wish you many

years of good health. Joan

p.s. I took my daughter to Dr. Boachie for a consultation--just weeks

before her planned operation at Hopkins--amazed, he recommended a completely

different approach than the Hopkins doctor--fusing 4 vertebras vs. 13!!!!

anterior vs. posterior. He was absolutely wonderful and I feel he was our

angel as our appt. was the day after the world trade center bombing.

Re: Dr Boachie-always surgery ?

Hi Bea...

I don't think your pain specialist is doing you any favors. You both

need to understand that the people who go to him are the people who have

bad outcomes. The patients who have good outcomes don't need pain

specialists. Please ask Dr. Boachie for the names of some of his

revision patients. That might help you put your mind at ease. There

are no guarantees, but I know a lot of people who have regained their

lives after having revision surgery.

Good luck with your appointment.

Regards,

[Guest guest]

Bea,

I'm curious. Your surgery was 1996, T1-L5? Did that original surgery improve

your condition? What happened since, and when? Have you seen anyone prior to

now who renders an opinion as to what additional surgery they are

considering?

I am one of the success stories. You can read more details in the archives.

Currently I take an occassional Vicodin (weather changes and excess

activity). My fusion is now T2-S1 w/titanium rods. I am 44, 42 at the time

of surgery.

Donna

>From: " bea_simmons " <bea_simmons@...>

>Reply-Scoliosis Treatment

>Scoliosis Treatment

>Subject: Dr Boachie-always surgery ?

>Date: Tue, 20 May 2003 18:23:52 -0000

>

>Hi to everyone!

> I have an appointment with Dr Boachie June 9th- with all I've read

>on this site I am looking forward to getting his opinion. I was

>unable to get out of bed due to severe pain both buttocks with pain

>and burning in the backs of my thighs. This lasted over three weeks -

>is actually better for the last two days in that I've been able to be

>up 15-20 mins at a time several times a day.

>

> This is happening in spite of a very aggresive pain treatment plan

>with my pain specialist. I've also had a few episodes of loss of

>feeling and movement in my right leg that is relieved by changing my

>position. My med dose for breakthru was increased last week but I

>didn't want to go up on my regular med because I was afraid if I

>masked any more pain I might hurt myself.

>

> I have a couple of questions : Has anyone gotten thru this, gotten

>better and maintained some level of function without revision

>surgery? (I'm post 1996 ant/post T1- L5 fusion w/titanium rods and

>bone grafts) I realize my age (52) and frame (skinny) makes the

>weight and wear and tear on my last vertebra worse considering the 7

>years since that surgery.

>

> My pain doctor (anesthologist) has said he would never let anyone

>operate on him if he were in my place unless he was paralyzed or

>incontinent because he sees the post ops and says they are never

>better off. My problem-at least one of them-my insurance runs out

>Sept 19th- I feel pressured to do something now if I'm going to have

>to.

>

> Second question: has anyone gotten off their long time pain med

>regime without it being pure hell? After my surgery I weaned the

>morphine down to smaller doses than told to- I was trying to take 1/4

>of a tiny pill to make it easier- and it was still a few nights of

>antsy-ness.I had said for years I hoped I NEVER had to take Morphine

>again. Ha!! I'm scared to even think about the amount and duration

>(14 months) of the med I'm on now. Of course, this is assuming I need

>LESS after the surgery-if I have to have surgery ! My pain med

>practioner has assured me they can get me comfotable enough for a

>decent life if I have the surgery and I'm in more pain. But then I'll

>be paying for it ! So that has me crying a lot of days-worrying about

>unknowns in the future I can't do a damn thing about!

>

> Any and all suggestions appreciated. Thanks, Bea

>

>

_________________________________________________________________

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[Guest guest]

Dear Bea:

I am stunned by the comment your anesthesiologist pain doctor made. Gosh, if

it weren't for the same group in the Pain Clinic which I attended, I would

not be half as well off as I am. I will say that I DID end up incontinent

from my scoliosis, and I DID have to have my bladder removed and a urostomy

replaced it. I also had surgery from T6 to L5 and have not regretted it in

any way! Those comments about incontinence and paralysis are not even worth

thinking about. The surgery is well worth what it takes to go through it!

If I had a child who had the problem, even, I would still recommend some kind

of corrective surgery.

I hope that you go ahead and do what you want -- with a great doctor.

Carole

[Guest guest]

> My pain doctor (anesthologist) has said he would never let anyone

> operate on him if he were in my place unless he was paralyzed or

> incontinent because he sees the post ops and says they are never

> better off.

Dear Bea,

I'm so sorry you got that opinion and specifically from a doctor.

Although you probably have a more skeptical response (compared to a

layperson like me) to what a " DOCTOR " says, given your own medical

background, it is still a real tough tough opinion for anyone to hear.

I don't believe an anesthesiolgist is capable of determining what

surgical possibilities exist for the lumbar spine. And, I can't

believe the *Only* choice he thinks you have is to continue with the

extreme pain you are in and *continue* to stay on such a potent

medication regime.

Do you feel that you have researched and considered all your

options? I finally did. I never had the brace or the surgery as a

child/teenager, and in the last 20(?) years was in and out of

Physical Therapy for months at a time, year after year. So at 47 YO

I had to have my 1st scoliosis surgery (A/P L1 to S1). And it did

make a positive difference: my lumbar curve was collapsing;

eventually I would have lost control of my legs and some of my bodily

functions. I would have had to continually increased my pain

medication dosage. I am not, nor will I ever be - physially up-to-

par with non-scoliosis people, but my life is OK and I am not on any

heavy-duty pain meds. Given my options, I believe I made out pretty

darn good.

From the 3 or more years I've been active on both this and the MIT

digest lists, I have the overall impression that revision surgery is

a very viable option, and one that reduces pain levels (in the long

run) and increases daily function. And in those 3 years on both

these lists I have heard very positive accolades for Dr. Boachie's

abilities as a surgeon. He was my second choice, but Dr. Rand, who

is an excellent surgeon, is closer to where I live.

Try to keep in mind with your health insurance deadline of Sept 19:

With the Potential Costs of: Initial visit + 1-2 follow-up visits

before surgery, + standing x-rays, + 1-2 weeks in hospital, + rehab

1 week, and then follow up visits with x-rays: 1 month after surgery,

3 months, 6 months, etc. and possibly a CT scan at one year-post

surgery.

Racine's web site is a great guideline for a lot of what you

need to know about to prepare for surgery and take care of yourself

after surgery. http://home.attbi.com/~lsracine/SFAreaSpecialists.htm.

We are very lucky shares her knowledge and compassion - which

are extensive. (Hope this is the correct address)

God Luck in your decisions.

[Guest guest]

...

Thanks so much for your kind words and for mentioning my web site. The

main address is:

http://home.attbi.com/~lsracine/ScoliosisLinks.htm

The preparing for surgery address is:

http://home.attbi.com/~lsracine/PreparingforSurgery.htm

Regards,

qyeserasera wrote:

> Racine's web site is a great guideline for a lot of what you

> need to know about to prepare for surgery and take care of yourself

> after surgery. http://home.attbi.com/~lsracine/SFAreaSpecialists.htm.

[Guest guest]

Dar Bea. WOW. I can relate to your note better than many I have read

lately.

Re: morphine and weaning. I thought it was going to be a peace of cake

to get off dilaudid and MS Contin. Well. Everything was fine for a

week until nervousness overcame me for a couple of weeks in a row. If I

got exhausted enough, I'd have a pretty good night, but the

'nervousness' as I called it, returned. I saw my GP and he have me

lorazapam, but it didn't work very well! Then, he put me on Trazodone,

and that WORKED. Only a week on that and the cycle was broken! What a

relief that was. I had NO idea that addiction would be the cause of

that!

As for the pain that you have in both buttocks that shoots down the back

(and sometimes the front) of the legs is caused by a disc problem. How

do I know? About two weeks ago, I woke up, got out of bed and nearly

collapsed when my left leg had pain shooting down from my hip. That

went on for about 5 or 6 days, severe in the morning, getting better as

the day wore on. Finally, I went to GP last week and he told me (a

disc) was what was causing the pain, without a doubt. He told me to see

my scoli surgeon again. Then, just as suddenly as this terrible pain

appeared, it disappeared! I believe it was a spinal problem, but I'm

not sure what brought it on. All through this experience, I didn't skip

PT, walked as much as I could, stopped doing things that may have been

the cause of it (carrying my 27 lb. gdaughter, mopping, vaccumming,

bending wrong, etc.). It may have been the 'rest' I gave it that helped

me.

As you learned, the pain is slightly relieved if one changes position.

For me, bending my knee and holding my leg behind me helped for a few

seconds, only, the other leg would get an overbearing tired feeling so I

couldn't hold that position very long. It's certainly been an answer to

prayer to be over that for at least the time being!

I am 53, had the spinal fusion July 26, 2002, titanium rods, hooks and

screws, fused from T2 to L5. Our situations are remarkably alike!

Incredible. Glad to be talking with you, Bea.

--

Lana

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[Guest guest]

Dear Bev, My surgery definitely cut down on my pain. Nothing in my back

hurts. It's just hard to walk, as I mentioned in another post. The

severe pain I write to Bea about is gone--hopefully, forever. At least,

I know that pain CAN go away from my hip and L5 region.

--

Lana

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[Guest guest]

Dear , I had to laugh--Dr. Rand is a great doctor and WILL tell

you 'like it is!' I saw him for a second opinion and he told me he

wouldn't TOUCH ME!! He said that my respiratory problems (severe asthma,

COPD and prednisone dependency) make me a terrible candidate for

scoliosis surgery and he acted peaved that I saw him! I valued his

opinion greatly, and decided to get a third opinion from Dr.

Glazer, also of Boston and he was very positive. At the time I had MVP

insurance so, I was not allowed to have Dr. Glazer do the surgery. But,

that was fine, as I had a lot of confidence in my VT surgeon, Dr.

Monsey, whom I also like(d). I told Dr. Glazer and Dr. Monsey that I

could do it, I was strong emotionally and physically. In 2002, I had a

bad winter and spring with resp. infections, so it turned out my surgery

was done in the end of July, when I was most healthy breathing wise.

Dr. Monsey had as much faith in me as I had in him. Also, it was nice

to have the surgery done close to home--makes hospitalization, rehab and

PT much easier! The reason I had gone to the MDs in Boston was b/c my

family did NOT have faith in MD's in Vermont. MVP made the decision for

all of us!

--

Lana

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[Guest guest]

Lana,

Isn't Dr. Glazer at the Beth Israel in Boston? Could you tell me if Dr.

Lipson is still in practice there? He was the Chief when he did my original

surgery and I really loved him! I would like to know about both him and Dr.

Glazer, if you can tell me!

Thanks!

Carole