surgery

July 22, 2006

I'm not used to the format,,,sorry I first sent it incorrectly.

Vita,

Thank you for your help!

She actually has hypochondroplasia...from what I have been told. She has always

seen a doc in Ok City who says he has " some " experience with dwarfism. Her legs

are pretty badly bowed and that is what he worries about. My ex-husband is AIr

FOrce so I also have to use their " okay'ed " docs... Someone had mentioned the

Shriner's hospital in Texas because it is not costly.

Vita <vita@...> wrote:

Beth,

You are wise to be hesitant and asking lots of questions before consenting

to having anything else done to your daughter's legs. I suggest that you

get a second opinion from an orthopedic dwarfism specialist since they are

the most experienced. The two main orthopedic dwarfism specialists in the

US are Mackenzie at A.I. Dupont Hospital in WIlmingotn, DE, and

Ain in Baltimore, MD. The information for both of these doctors is

at LPA Online under Medical Advisory Board.

Although you didn't say specifically, I'm assuming that your daughter has

achondroplasia. If she does not, some of my answers would be slightly

different, so feel free to contact me again in that case.

Vita

At 10:49 AM 7/22/2006, you wrote:

>Hi

> An orthopedic surgeon has strongly suggested surgery for my 12-yr-old

> daughter to correct her legs and (he says) save her from debilitating

> arthritis later in life. We already tried surgery several years ago at

> age 9 where they took a chunk out of her ankles at the growth plate (he

> said a 60% chance or straightening her legs if she grew anymore...MUCH

> less severe surgery than this one and he wanted to try it first.). BUT,

> her growth plates were closed right afterwards and so it did not work at all.

> This next surgery is to put steel rods in the legs to straighten them.

> My chiropractor does not believe this surgery has very good success and

> I do not want to put her through it if it does not...surgeon says it has

> 95% chance...but she will have double casts to the hip for 3 months!

> COuld anyone please tell me if they have had any similar surgery to

> save their knees and if it was successful?

> THANK YOU!

>

> Beth

---------------------------------

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July 23, 2006

Unfortunately, I am divorced from their Dad,,,but the kids still get full

medical benefits. I never knew they would pay for travel..I will definitely

check into that quickly.

Thank you

)

Vita <vita@...> wrote:

Since your husband is in the Air Force, there is no " costly " for your

family -- the military pays for everything. My husband was an officer in

the Public Health Service for 31 years (retired June 2005), so we've always

had military health insurance/care. Stefan was actually born at Bethesda

Naval Hospital in 1975 -- yes, my " baby " is 30 years old. ) In any case,

we picked out an orthopedic dwarfism specialist and through the Bethesda

Orthopedic Dept, got permission to take Stefan to this doctor for all of

his dwarfism-specific care. The military paid for everything except the

daily food charge ($10/day?). In other words, you can go anywhere for your

daughter's surgery -- and I'd definitely head to one of the orthopedic

dwarfism specialists (probably Mackenzie would be best since he only has LP

children patients). The military will even pay for your _travel_, so it's

a win-win deal.

Good luck with your decision!

Vita

At 11:04 AM 7/22/2006, you wrote:

>Vita,

>Thank you for your help!

>She actually has hypochondroplasia...from what I have been told. She has

>always seen a doc in Ok City who says he has " some " experience with

>dwarfism. Her legs are pretty badly bowed and that is what he worries

>about. My ex-husband is AIr FOrce so I also have to use their " okay'ed "

>docs... Someone had mentioned the Shriner's hospital in Texas because it

>is not costly.

>

>Vita wrote:

>Beth,

>

>You are wise to be hesitant and asking lots of questions before consenting

>to having anything else done to your daughter's legs. I suggest that you

>get a second opinion from an orthopedic dwarfism specialist since they are

>the most experienced. The two main orthopedic dwarfism specialists in the

>US are Mackenzie at A.I. Dupont Hospital in WIlmingotn, DE, and

> Ain in Baltimore, MD. The information for both of these doctors is

>at LPA Online under Medical Advisory Board.

>

>Although you didn't say specifically, I'm assuming that your daughter has

>achondroplasia. If she does not, some of my answers would be slightly

>different, so feel free to contact me again in that case.

>

>Vita

>

>At 10:49 AM 7/22/2006, you wrote:

> >Hi

> > An orthopedic surgeon has strongly suggested surgery for my 12-yr-old

> > daughter to correct her legs and (he says) save her from debilitating

> > arthritis later in life. We already tried surgery several years ago at

> > age 9 where they took a chunk out of her ankles at the growth plate (he

> > said a 60% chance or straightening her legs if she grew anymore...MUCH

> > less severe surgery than this one and he wanted to try it first.). BUT,

> > her growth plates were closed right afterwards and so it did not work

> at all.

> > This next surgery is to put steel rods in the legs to straighten them.

> > My chiropractor does not believe this surgery has very good success and

> > I do not want to put her through it if it does not...surgeon says it has

> > 95% chance...but she will have double casts to the hip for 3 months!

> > COuld anyone please tell me if they have had any similar surgery to

> > save their knees and if it was successful?

> > THANK YOU!

> >

> > Beth

>

> Messenger with Voice.

>Make

>PC-to-Phone Calls to the US (and 30+ countries) for 2¢/min or less.

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July 23, 2006

,

That really makes sense that it was considered routine surgery..and

unfortunately the surgery she already endured (with a great attitude I might

add) at the growth plate was completely unsuccessful. I am SO glad that I have

posed this question and heard the response so I can act with more education.

In answer to your question, she does not feel any pain in her legs and, yes, I

was told that these surgeries are " prevention " oriented. Obviously, if that

does not work, the surgery is useless.

Thank you!

Beth

Ddlbrook@... wrote:

According to my orthopedic Dr, who we say in Jun, the biggest questions would

be: Does your daughter suffer any pain from her legs?

Is she having any problem because of the bowing and/or pain?

Is it affecting her quality of life, by stopping her from doing everyday things

like walking, etc?

Is the bowing causing her any secondary medical problems?

If the answer is no to all the above questions, then she probably does not need

the surgery.

We go to Dr. Bernstein at Cedars. According to her orthopedic Dr, these

surgeries do not stop arthritis as they once thought. My daughter will probably

need surgery to straighten her legs. She already has problems with pain. The

surgery with the platelets has been 60% ineffective in stopping any further

surgeries for the kids who need to have their legs straightened. This info is

accurate as of June 2006. A lot of the people who give info on this list are

giving info that is 2 or 3 years old or relating stuff from years ago. I

totally said no to the platelet surgery. Also, the surgery to straighten the

legs used to be considered routine surgery for a dwarf. Many Drs are still old

school and have not read the new information published by the American Academy

of Pediatrics. The new info was updated late last year. So many Drs still give

out the old info.

I am retired military and my dau is a dwarf. There are ways of seeing

specialists out of the network if you can have them disengage your daughter. I

have become very adept at getting my daughter the stuff she needs through

Tricare. If the Dr she is seeing says that the problem is beyond his scope, you

can see a specialist. Not dwarfs with leg problems need to see a specialist who

is on the LPA board. If your doctor has questions, he can contact the specialist

for a consult rather than you having to be out your money to travel to the

specialist. I have done this in the past before I moved to CA. Feel free to

email me if you have any questions.

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countries) for 2¢/min or less.

August 19, 2006

Hi, I am on NHS waiting list for ankle fusion as PA has totally destroyed my

left ankle. I have been on Methotrexate for 2 1/2 years and also sulphazasaline

for approx. 6 months plus anti-inflammatories. The Doctors here wont give

Enbrel and I have always thought I have been short-changed as despite strong

drugs I am in pain. That is what I thought. 10 days ago surgeon told me to

stop taking methotrexate etc. but didnt give me operation date. Well all I can

say is the pain has been excrutiating without drugs and obviously they are doing

something to relieve the pain. I dont think the doctors here totally understand

PA and as operation date isnt until 12 October, I have had to start taking drugs

again. I must say they do dull the pain somewhat. I still have to walk with

crutch but although it hurts, not as much as without drugs. My daughter says

that when I am on the drugs, it changes my personality and I dont seem to be

with it, but a small price to pay for some relief. I am not sure if operation

will be totally successful but I have no option but to go for it. No shoes fit

me, so have to spend time in Birkenstocks which is o.k. during summer but what

about winter. This tells me how to gage how bad it is as last year I could wear

boots.

Is there anyone reading this who lives in the Kent area of U.K. I know of no

one else with this disease.

Love and best wishes to everyone,

Geraldine Dullaway

August 19, 2006

Geraldine - so sorry to hear you are having so much trouble.

Hopefully the surgery will help. Do the doctors give you a reason

they won't try the biologics? It seems to me that if you are still

experiencing joint destruction after 2 years on a drug regimen, it

should be obvious that something different is needed! Are you

seeing a rheumatologist?

I live in the U.S. so maybe I'm just not understanding how the U.K.

health system works.

But even though we are far apart geographically, we are only an

email away from support and help and answers anytime you need us!

best regards,

sherry z

>

> Hi, I am on NHS waiting list for ankle fusion as PA has totally

destroyed my left ankle. I have been on Methotrexate for 2 1/2

years and also sulphazasaline for approx. 6 months plus anti-

inflammatories. The Doctors here wont give Enbrel and I have always

thought I have been short-changed as despite strong drugs I am in

pain. That is what I thought. 10 days ago surgeon told me to stop

taking methotrexate etc. but didnt give me operation date. Well all

I can say is the pain has been excrutiating without drugs and

obviously they are doing something to relieve the pain. I dont

think the doctors here totally understand PA and as operation date

isnt until 12 October, I have had to start taking drugs again. I

must say they do dull the pain somewhat. I still have to walk with

crutch but although it hurts, not as much as without drugs. My

daughter says that when I am on the drugs, it changes my personality

and I dont seem to be with it, but a small price to pay for some

relief. I am not sure if operation will be totally successful but I

have no option but to go for it. No shoes fit me, so have to spend

time in Birkenstocks which is o.k. during summer but what about

winter. This tells me how to gage how bad it is as last year I

could wear boots.

>

> Is there anyone reading this who lives in the Kent area of U.K.

I know of no one else with this disease.

>

> Love and best wishes to everyone,

> Geraldine Dullaway

>

August 19, 2006

Oh Geraldine, I am so sorry to hear about your pain. I take 2 X 200mg

celecoxib " Celebrex " to take the edge off my pain everyday. It dulls

much of the pain, and I generally can tell when I have missed a pill -

even by only a couple of hours. Perhaps that can be prescribed in the

UK. Also, very short-term, prednisone may be an answer for you.

I think that the Viking Warlock (Ian) and (from this site) are

from the UK. Maybe they will read this and come forward for you. You

can also search their names and send them an email if they miss your

posting.

August 19, 2006

Geraldine...I wonder why the docs won't give you Enbrel? It has been a

lifesaver for me. I am so sorry that you are in such pain. I am praying

that it gets better for you. Please don't give up. Picture yourself

better...healthier and feeling like " you " again. Hang on to that. The

technology and medications are out there now and getting better all the

time. Why has your doctor not put you on Enbrel or another biologic? I

am not sure I understand that. And if you don't understand it....ASK

him or her. Remember that this doctor works for you...you pay the

doctor to do a job. -Betz

August 22, 2006

In a message dated 19/08/2006 12:41:07 GMT Daylight Time,

geraldinedullaway@... writes:

Hi, I am on NHS waiting list for ankle fusion as PA has totally destroyed my

left ankle. I have been on Methotrexate for 2 1/2 years and also

sulphazasaline for approx. 6 months plus anti-inflammatoriesHi

Hi Geraldine,

I don't know if you remember that I live in Scotland. Although we are in

completely different areas we are under the same umbrella. I don't think that I

was on MTX for as long as you before starting Enbrel. My Rheumatologist sent me

to one of his colleagues who is a professor in that field. He didn't say but I

think part of his reasoning was that it would be added clout when they

applied to get me on to the Enbrel. They told me that the UK government take a

lot

of interest in this due to the cost involved so basically they have to prove to

them that they have tried you on all the other drug levels. So if they have

successfully justified me being approved for it, they should certainly be able

to justify you being on it too. So, as far as I can tell it is down to your

Rheumatologist to push this for you. If he isn't there is something wrong.

Would you be able to ask him/her if he or she thinks you pass the criteria?

Because if the answer is yes, there is no excuse for them not going for it, so

then you should just take the bull by the udder (As a good friend of mine

says. lol) and ask them how we can make that happen.

Will you be seeing them again soon?

Good luck,

August 23, 2006

Hi,

Thank you for taking the trouble to send me a message. To be quite honest the

only info I have received on pa is from the website. The Rheumatologist I see,

Dr. Sally Dodman, is someone I respect but she is so busy that I can only get an

appointment every 4 months (next one is in December). My last xray showed that

my ankle had deteriorated so much that there was nothing left and she passed me

on to a orthapaedic surgeon who specialises in ankles, but not pa particularly.

He has performed a biopsy to check there is nothing else going on and has now

given me a date for surgery, 12 October. 3 weeks ago his Registrar phoned me to

say I should stop taking Methotrexate and Sulphasazaline which I did. The pain

in my ankle became excrutiating and the wound which had not really healed from

biopsy in June became infected. All in all I was in a bad state. My GP told me

to go back on drugs and I will stop them nearer the op. I have heard from one

other lady in USA who tells me that I should expect to carry on the drugs after

the op.

I have tried to get Enbrel for the last 2 years but Dr Dodman (Rheumatolist)

says our local Trust is not happy to prescribe Enbrel, especially as I have only

one joint affected. It is like banging my head against a brick wall. My son

contacted my MP on my behalf but he didnt have much luck either.

I know from this website that pa is a dreadful disease but most people I know

have never heard of it and feel I havent been treated very well. You are lucky

that your local area Trust is sympathetic.

Sorry to let of steam but I just feel that I havent had the best treatment that

I should have. If I had it may not have come to surgery.

Love and best wishes,

Geraldine

========================================

Message Received: Aug 23 2006, 03:38 AM

From: martincoyless@...

Cc:

Subject: Re: [ ] surgery