Re: complications.....

[Guest guest]

I have SEMD and have had three hip replacements (no, I don't have three hips!)

as well as various procedures in childhood. Two of the replacements took place

at s Hopkins, one at Memorial Hermann (Houston). Because s Hopkins has

such a good reputation of understanding the various factors relevant to

dwarfism, I was not worried. When I went to Memorial Hermann, I made sure the

doctor and the anesthisiologist (and anyone else who would listen) understood

that there could be a C1-C2 problem and that they should proceed with caution.

If I had not felt I was being taken seriously, I would have run, not walked, out

of there. I also had the nasal intubation the last time, and it was not what

I'd call fun, but this too passed. I also have asthma, which makes

anesthiologists very nervous, and I made sure they were aware of that. I had no

breathing problems in any of the surgeries, thank goodness.

I also had the unhappy experience of having to find a new surgeon the last

time, since Dr. Ain refused to move to Texas, even though I assured him he would

love it. I contacted Dee , who referred me to someone on the MAB in the

Houston area. She in turn referred me to a surgeon in Houston who specializes

in hip and shoulder replacements, especially with people young enough that they

want the darn things to LAST. I saw him, asked MANY questions, researched him

online, thought it over, prayed a lot, and took the plunge. Six months later,

the hip is doing well, knock on wood (or titanium?).

Yes, it is scary, but waiting too long to do something that needs doing can be

worse, so I think it calls for balance.

By the way, I recovered much more quickly from the last surgery than the first

two, and I don't really know why: improved technology, better luck, whatever.

But the good news with hips is that the technology is constantly improving.

Alyce

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

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[Guest guest]

Alyce -- Could you explain the difference between the nasal intubation and

the other way -- from the patient's viewpoint, I mean?

Thanks so much,

Marji McIlvaine,

Mom of , age 14, SEDC

Re: complications.....

I have SEMD and have had three hip replacements (no, I don't have three

hips!) as well as various procedures in childhood. Two of the replacements

took place at s Hopkins, one at Memorial Hermann (Houston). Because

s Hopkins has such a good reputation of understanding the various

factors relevant to dwarfism, I was not worried. When I went to Memorial

Hermann, I made sure the doctor and the anesthisiologist (and anyone else

who would listen) understood that there could be a C1-C2 problem and that

they should proceed with caution. If I had not felt I was being taken

seriously, I would have run, not walked, out of there. I also had the nasal

intubation the last time, and it was not what I'd call fun, but this too

passed. I also have asthma, which makes anesthiologists very nervous, and I

made sure they were aware of that. I had no breathing problems in any of

the surgeries, thank goodness.

I also had the unhappy experience of having to find a new surgeon the last

time, since Dr. Ain refused to move to Texas, even though I assured him he

would love it. I contacted Dee , who referred me to someone on the

MAB in the Houston area. She in turn referred me to a surgeon in Houston

who specializes in hip and shoulder replacements, especially with people

young enough that they want the darn things to LAST. I saw him, asked MANY

questions, researched him online, thought it over, prayed a lot, and took

the plunge. Six months later, the hip is doing well, knock on wood (or

titanium?).

Yes, it is scary, but waiting too long to do something that needs doing

can be worse, so I think it calls for balance.

By the way, I recovered much more quickly from the last surgery than the

first two, and I don't really know why: improved technology, better luck,

whatever. But the good news with hips is that the technology is constantly

improving.

Alyce

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

Photos - Showcase holiday pictures in hardcover

Photo Books. You design it and we'll bind it!

[Guest guest]

For the first two hip surgeries, I was intubated fiber optically (I assume down

my throat), but I don't remember either.

I definitely remember the nasal intubation - not painful, because you are

numbed, but not my idea of a fun time.

A

marji <mcilvain@...> wrote:

Alyce -- Could you explain the difference between the nasal intubation and

the other way -- from the patient's viewpoint, I mean?

Thanks so much,

Marji McIlvaine,

Mom of , age 14, SEDC

Re: complications.....

I have SEMD and have had three hip replacements (no, I don't have three

hips!) as well as various procedures in childhood. Two of the replacements

took place at s Hopkins, one at Memorial Hermann (Houston). Because

s Hopkins has such a good reputation of understanding the various

factors relevant to dwarfism, I was not worried. When I went to Memorial

Hermann, I made sure the doctor and the anesthisiologist (and anyone else

who would listen) understood that there could be a C1-C2 problem and that

they should proceed with caution. If I had not felt I was being taken

seriously, I would have run, not walked, out of there. I also had the nasal

intubation the last time, and it was not what I'd call fun, but this too

passed. I also have asthma, which makes anesthiologists very nervous, and I

made sure they were aware of that. I had no breathing problems in any of

the surgeries, thank goodness.

I also had the unhappy experience of having to find a new surgeon the last

time, since Dr. Ain refused to move to Texas, even though I assured him he

would love it. I contacted Dee , who referred me to someone on the

MAB in the Houston area. She in turn referred me to a surgeon in Houston

who specializes in hip and shoulder replacements, especially with people

young enough that they want the darn things to LAST. I saw him, asked MANY

questions, researched him online, thought it over, prayed a lot, and took

the plunge. Six months later, the hip is doing well, knock on wood (or

titanium?).

Yes, it is scary, but waiting too long to do something that needs doing

can be worse, so I think it calls for balance.

By the way, I recovered much more quickly from the last surgery than the

first two, and I don't really know why: improved technology, better luck,

whatever. But the good news with hips is that the technology is constantly

improving.

Alyce

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

Photos - Showcase holiday pictures in hardcover

Photo Books. You design it and we'll bind it!

[Guest guest]

Alyce could you explain what you mean by fiber optical intubation. I have

never heard of that.

My problems with being intubated were solved 5 years ago when I got a trach.

It was done in an emergency situation and made for a couple of rough years

for me physically so I'm not sure that is something I would recommend to

people ). However, I am hearing so many horror stories from LP's about

intubation problems and I am wondering if a trach that is capped and not

used but rather there for emergencies and a 2nd airway wouldn't be a good

idea for people. I don't even know if initially placing a trach would be

problematic. I know that for me the trach saved my life and I am beginning

to wonder if there aren't other LP's that might benefit from one. I know

that having one has taken away alot of my fears of surgery although not all

and it has made it alot easier for me to use a C-Pap at night because the

machine attaches directly to the trach. I know there are some respiratory

doctors on the MAB. I would love to ask them about this some time.

Danette Baker

Spokane, WA

scraps-of-joy@...

My disability is not a handicap

@ @\

@ @ @ ---\------

@ @ / /

I'll be standing in the gap for you

Just remember someone, somewhere

Is praying for you

Calling out your name

Praying for your strength

I'll be standing in the gap for you

~ Babbie Mason ~

-- Re: complications.....

For the first two hip surgeries, I was intubated fiber optically (I assume

down my throat), but I don't remember either.

I definitely remember the nasal intubation - not painful, because you are

numbed, but not my idea of a fun time.

A

marji <mcilvain@...> wrote:

Alyce -- Could you explain the difference between the nasal intubation and

the other way -- from the patient's viewpoint, I mean?

Thanks so much,

Marji McIlvaine,

Mom of , age 14, SEDC

Re: complications.....

I have SEMD and have had three hip replacements (no, I don't have three

hips!) as well as various procedures in childhood. Two of the replacements

took place at s Hopkins, one at Memorial Hermann (Houston). Because

s Hopkins has such a good reputation of understanding the various

factors relevant to dwarfism, I was not worried. When I went to Memorial

Hermann, I made sure the doctor and the anesthisiologist (and anyone else

who would listen) understood that there could be a C1-C2 problem and that

they should proceed with caution. If I had not felt I was being taken

seriously, I would have run, not walked, out of there. I also had the nasal

intubation the last time, and it was not what I'd call fun, but this too

passed. I also have asthma, which makes anesthiologists very nervous, and I

made sure they were aware of that. I had no breathing problems in any of

the surgeries, thank goodness.

I also had the unhappy experience of having to find a new surgeon the last

time, since Dr. Ain refused to move to Texas, even though I assured him he

would love it. I contacted Dee , who referred me to someone on the

MAB in the Houston area. She in turn referred me to a surgeon in Houston

who specializes in hip and shoulder replacements, especially with people

young enough that they want the darn things to LAST. I saw him, asked MANY

questions, researched him online, thought it over, prayed a lot, and took

the plunge. Six months later, the hip is doing well, knock on wood (or

titanium?).

Yes, it is scary, but waiting too long to do something that needs doing

can be worse, so I think it calls for balance.

By the way, I recovered much more quickly from the last surgery than the

first two, and I don't really know why: improved technology, better luck,

whatever. But the good news with hips is that the technology is constantly

improving.

Alyce

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

Photos - Showcase holiday pictures in hardcover

Photo Books. You design it and we'll bind it!

[Guest guest]

Just out of curiousity, how long is the usual recovery time for hip (and if

anyone knows - knee) replacements? I'm seeing my rhumatologist in a few weeks

and was thinking of discussing with him about doing my surgeries over the summer

after the kids get out of school. I just need to know how much time I'm looking

at for work, DisneyWorld is very fussy about taking a leave of absence for more

than a month. On the upside, not working for more than a month gives me time to

catch up my novel, my publisher is already about to shoot me lol. Still, writing

doesn't always pay the bills, so any approximations for when I can get back to

Disney would be great, thanks!

~~Mara~~

PS I use my Scootie at work, would that help me get back to work sooner since

I wouldn't need to be on my feet much?

Thirty-five is a very attractive age. London society is full of women of the

very highest birth who have, of their own free choice, remained thirty-five for

years.

Wilde, The Importance of Being Earnest, Act 3

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

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[Guest guest]

Craig honey,

I think it's just from pure ignorance on the part of

the doctors. Majority of doctors have probably never

had an lp patient. Some think we are just mini-people

not realizing we need special accomodations. I read

somewhere someone stated that there is only a

paragraph or so about dwarfism in medical books. If

that is true then that is pretty small considering

there are 200 types.

My stories:

In 1992 I had a spinal fusion, was in the hospital for

a week. No complications with the surgery or recovery,

however I did have an issue. I had a tube down my nose

into my stomach, not putting things in but taking

things out. I had that for a few days and on the day

they were going to take it out I had a blood

transfusion. The nurse told me it would go quick and

just to keep swallowing so I did. I'd say maybe a few

hours later all of a sudden I kept smelling blood like

it was coming from in me, just a very faint smell of

blood. I thought maybe it was coming from the bag of

blood from the transfusion. All of a sudden I threw up

blood. I couldn't sit up so all I could do was turn my

head. Well it turned out that the tube she pulled out

cut my stomach and it bled. I was getting blood

anyways and I didn't have any other issues after that.

That was the only complication I had.

I cannot believe how things have advanced though. I

had to wear a back brace for 6 months! Pure torture!

I was watching a medical show about kids that have the

same exact surgery done, one girl a few weeks later

was braceless and running around! My good friend had a

spinal fusion and no brace! She is up doing things now

and almost back to normal, yet back then it was 6

months to be in one.

-

__________________________________________________

[Guest guest]

I've had awful expriences with surgeries to date myself. I had to have 3

emergency c-sections (all 3 of mine were premies), and with all of them they

gave me epidurals. With my first daughter they gave me too much of the epi so I

conked out even before the delivery. With my second daughter they gave me the

right amount, but they didn't put the tube in far enough, so they had to poke me

3 times to get it right. With my 3rd daughter it was by far the worst, that time

they not only had to again poke me several times to get it in, but on the last

try the tube hit my psyatic (?spelling?) nerve and bruised it so badly that to

this day I still have severe pain in my lower back.

I was lucky with my hysterectomy though. It was at my suggestion that the

doctor make the cut up and down instead of sideways, and if I hadn't suggested

it he never would have found that I had a herniated colon. Talk about a lucky

break for me whew! The only downside was the anesthesia made me so nauseous

before and after the surgery that I couldn't even look at food without getting

ill for the next 2 days. Another bad thing is that no matter how much estrodial

they gave me afterwards to make up for losing everything, my maenopause is so

bad that some days I barely function. I don't know if that has to do with my

type of dwarfism (which I finally after all these years found out today that I

have pituitary dwarfism after they ran a boatload of tests on me the last two

weeks), or my Lupus, but the side-effects of the hysterectomy are even worse now

then they were before. Eh well, not much I can do I reckon except keep a lot of

icepops on hand and keep the AC going full blast.

Actually, now that I think about it all, now I'm really afraid to have the new

surgeries. I know I need them badly, the pain is unbearable most days, and I'm

becoming immune to pain meds at this point so they keep rotating them on me ...

but yeesh, it's a toss up now. Keep the pain that I'm used to, or risk even more

complications with the surgeries. Ugg I really hate having to make these tough

choices!

~~Mara~~

Thirty-five is a very attractive age. London society is full of women of the

very highest birth who have, of their own free choice, remained thirty-five for

years.

Wilde, The Importance of Being Earnest, Act 3

[Guest guest]

I have Malignant Hyperthermia, which means I have severe allergic

reactions to general anesthesia. They have to give me certain

medications to help counteract the reaction and I am to be monitored

during and after the surgery.

The last time I had surgery they had a difficult time getting the

air tube inserted and they had chipped my front tooth. Due to this

incident I was told that the next time I have surgery they will have

to insert the tube before surgery and while I'm awake. This is such

a scary thought for me.

Because of the Malignant Hyperthermia the risks are much greater for

me to have my own biological child and because of my size I would

have to have a C-Section. So I had my tubes tied to prevent

pregnancy.

The Malignant Hyperthermia has nothing to do with my dwarfism. But

it's a huge issue! There are more people out there with this

condition and it can be tested with a muscle biopsy. The reactions

are serious and I have gone into seizures and my temperature had

gone sky high. They had to literally ice me down. When this was

discovered, there was not much information available for this

condition. Now more people have it and they are working on a gas or

drug they can use for people with MH.

If you would like more information regarding this, feel free to ask!

a

>

> Does anyone know why little people deal with so many complications

during surgery? It seems like someone goes to surgery for a simple

hip procedure and something happens due to anesthesia or something

else. I know I'm not done with my surgeries. I feel my back is

getting weaker each day and one day I will face a back surgery. I'm

scared to even consider it. I told my parents, I'm going to hold

off until I can't walk anymore to even consider surgery. In the

past, I had a close call as well.

>

> Back in 1991, I had major hip surgery. I believe the surgery

lasted 9 hours. I remember lying on that table and next thing I

recall I wake up with tubes in my nose, my thoat, attached on my

body, and extreme nausia. My parents told me I had complications

with my breathing throughout the surgery. The diagnosis was my body

had an allergic reaction to some chemical in the anesthesia. I sent

2 days in ICU. Anyways, doctors did take note of it for future

surgeries. I went back 2 years later to have my pins removed and

had no problems.

>

> When Dr. Kopits died, so did my confidence for being under the

knife again. He knew me from inside to outside. Today, my medical

history is hidden somewhere in his archives. IF I have any future

surgeries, there will always be that chance of that 1991 incident

happening again, and I dred that. I just hope when I do explain

what happened to whoever, they will know exactly how to fix it. I

miss Dr. K.

>

> Anyways, take care everyone.

>

> Craig

>

>

> " No dreamer is ever too small; no dream is ever too big. "

>

> http://www.craig-spoon.net

> http://www.myspace.com/craig_spoon

>

> ---------------------------------

> Photos

> Ring in the New Year with Photo Calendars. Add photos, events,

holidays, whatever.

>

>

[Guest guest]

I can't really help with recovery time line although I have heard in most

cases that the time involved is more than a month.

I feel that one of the main things about this surgery, from what I have

heard from friends and relatives, is that you find a good rehab center for

after care.

Now about Disney's being " very fussy about leave of absence over a

month " ....be sure that you put in for family medical leave under the Federal

guidelines. Disney MUST follow these rules and protect your return to work.

My wife had to use her Family Medical Leave once and when she was ready to

return to work they kept putting her off saying they were no postions open.

At they same time they were hiring new employees. We went to the proper

Government agency and filed a complaint, they investigated and she was given

her job back, paid back pay, and the employer, Sears, was fined.

Bruce

Re: complications.....

> Just out of curiousity, how long is the usual recovery time for hip (and

if anyone knows - knee) replacements? I'm seeing my rhumatologist in a few

weeks and was thinking of discussing with him about doing my surgeries over

the summer after the kids get out of school. I just need to know how much

time I'm looking at for work, DisneyWorld is very fussy about taking a leave

of absence for more than a month. On the upside, not working for more than a

month gives me time to catch up my novel, my publisher is already about to

shoot me lol. Still, writing doesn't always pay the bills, so any

approximations for when I can get back to Disney would be great, thanks!

>

> ~~Mara~~

>

> PS I use my Scootie at work, would that help me get back to work sooner

since I wouldn't need to be on my feet much?

>

>

>

> Thirty-five is a very attractive age. London society is full of women of

the very highest birth who have, of their own free choice, remained

thirty-five for years.

> Wilde, The Importance of Being Earnest, Act 3

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

> ---------------------------------

> Messenger NEW - crystal clear PC to PC calling worldwide with

voicemail

>

>

[Guest guest]

" Just out of curiousity, how long is the usual recovery time for hip "

I think a lot has to do with your condition going in. I will say this,

these days they have you up and walking within 24 hours. I joke that

left up to them you'd walk back from the surgery. As Bruce said, a

good rehab is important.

One complication (for lack of a better term) that I experienced after

hip #1 was a pinched sciatic nerve. And that was due to the the fact

that the operated leg was slightly longer than the one due to be

operated on next. I didn't go into short-term or extended rehab after

hip #1, because hip #2 was in pretty bad shape and it would have

aggravated it. Now it's hard to say if it was a good decision or not.

Immediately after hip #2 was done the sciatic pain disappeared. My SED

tight hamstring complications skewed my recovery, but from what I've

seen of AH individuals within 6 weeks or so they seem to be back at

work. Some walking slower than before for the first few months, but

looking and feeling much better than before. Eventually they pick up

speed, and are back to what is 'normal' for them.

I will say this, it wasn't nearly as painful as I anticipated,

especially hip #2. (plus I'd been home for close to a year and a half,

so I'd had enough, no pain was going to extend that) After sciatic

pain, hip #2 was a walk in the park, although it didn't keep my from

questioning the removal of the 'strong' pain killer drip they have you

on right after surgery. But, no matter what I said they were smart

enough to remove it and they did give me milder pain killers in pill

form right before my daily time in the rehab. I just had to make sure

I got them at least 20 minutes before I was due to be picked up.

" knee replacements? "

I have heard (from AHs) that it is much more painful and a longer

recovery period. It has to do a lot with how weight is placed on

individual knees vs how it is distributed on our hips.

Good luck with your quest,