Surgery question

[Guest guest]

Hi ,

My doctor gave me something in the IV right after my surgery to stop the

spinning - the pills he gave me to take home are Phenergan it's says it's

for nausea and vomiting but I never had those symptoms only spinning. The

last pill I took was 5 days after my surgery. I didn't take it every 4-6

hours as prescribed only as I needed it. Maybe you can as the doctor if you

can take something for the first few days and then let it settle on its own?

Good luck!

Jane

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[Guest guest]

> I was wondering if any of you in the group received any medications

> to stop the dizziness right after surgery..

My doctor prescribed Promethazine , the info sheet says its for

dizzyness/vertigo. I have not taken any though, said side-effects are

tiredness/diziness? (makes no sense to me either)

[Guest guest]

Anesthesia can cause hair loss. I was told this by my dermatologist. What

kind of pain killers did they put you on? If it's anything like Celebrex that's

one of the side effects of that drug also. Check out RXlist.com. You can enter

whatever drug you're taking and it will pull up the drug and any of the side

effects, warnings and precautions. It will also list drug interactions with

other drugs. That site has become my bible.

Helena

[Guest guest]

Also I forgot to mention that certain prescription drugs like Tagament can

also cause hair loss. You won't believe how many meds can cause hair loss.

Helena

[Guest guest]

Hi April,

when I was on 20mg per day of Cortef I would increase it to 40 (in 4

doses) in times of severe stress - an operation is one such time - I

can't comment on your other drugs but that is what I would have done,

Kerry

surgery question

Hello group...I havent posted for quite some time...hope everyone is

well!

I have been doing pretty good lately for the most part..very busy with

children

back in school, and all of them fairly active in sports etc...

Little or no time left for me!

Last week I had surgery to repair a significant separation in my muscle

near

my navel. I have a very physical job, and I kept re-injuring, so it was

time

to

fix it.

Anyway...all went well surgically, but six days later my hair is falling

out!

I know its just a stress response, and I'm more vunerable to it with my

thyroid

condition etc..

I started taking cortef about two months ago...and I feel like it has

made a

difference.

My question is..with the increased stress to my body right now, would it

be

wise

to increase any of my meds and supplements in order to compensate, or do

you

suppose it would put more of a burden on my system?

(I have been on pain medication for a week though, and maybe that has

had an

impact)

Obviously my system is not handling it very well, and I really can't

afford

to lose

much hair...its thinned out terribly over the last three years.

The last year or so, it has been pretty normal loss wise, until now.

I really dont want to fall behind though, and have to start over.

Any suggestions?

[Guest guest]

DHEA, be sure to take along with cortef.

Gracia

> Obviously my system is not handling it very well, and I really can't

afford

> to lose

> much hair...its thinned out terribly over the last three years.

> The last year or so, it has been pretty normal loss wise, until now.

> I really dont want to fall behind though, and have to start over.

>

> Any suggestions?

>

>

>

[Guest guest]

thanks for your suggestions...I also take synthroid 88s and have been taking

DHEA with the cortef...

I will increase today, and see what comes of it. I no longer need the pain

medication, so that will be an additonal worry gone.

Stitches out tomorrow, and hopefully the healing process will be smooth.

Surprising to me...I have absolutely no bruising, and my incision looks

months old already, so aside from the hair thing, I'm not too worried (yet).

April.

[Guest guest]

$ynthroid dose seems low. Have you tried Armour again?

Gracia

> thanks for your suggestions...I also take synthroid 88s and have been

> taking

> DHEA with the cortef...

> I will increase today, and see what comes of it. I no longer need the

> pain

> medication, so that will be an additonal worry gone.

> Stitches out tomorrow, and hopefully the healing process will be smooth.

> Surprising to me...I have absolutely no bruising, and my incision looks

> months old already, so aside from the hair thing, I'm not too worried

> (yet).

>

> April.

>

>

>

[Guest guest]

I think its low too, but doc does not want to increase without testing,

and unfortunately without insurance, I can't do the 375.00 every couple

of months.

The new office she works in does not advocate the use of Armour, and she

is reluctant to script.

I only have whats left of the current prescription of synthroid, until I will

be

forced to test again...about 8 days. She won't renew this time without blood

work...so I'm checking out some internet sources of Armour.

[Guest guest]

Hi

I had a cholesteatoma removed from my right ear when I was 37 - back in 1999. I've only ever had the one (thankfully!), but have had constant and on-going problems with infections and perforations of my right ear (with occasional problems in my left ear too), but so far no recurrence of the dreaded cholesteatoma.

When I had my surgery in 1999 (radical modified mastoidectomy, tympanoplasty and ossiculoplasty), I had a CWD which better allows my surgeon to be able to use the suction facilities to get rid of the stuff from my ear. I have this done a few times a year.

In 2003, I had a massive infection and perforation in my right ear that caused the total collapse of my middle ear, as a result of which, I was given a choice of middle ear re-construction or implant surgery for BAHA (Bone Anchored Hearing Aid) - I chose the latter and don't regret it one bit.

Regards

Kazzy :-)

Re: CHOLESTEATOMA

Hi ,I'm sorry to hear about your son's recurrence and number of surgeries. I'm right there with you with my 10 year old son, with surgery number 6 scheduled for July.My daughter, who does not have CToma was a candidate for growth hormones. She made it to the 3rd percentile on height and weight, so never took them. However, we still see an endocrinologist annually. I'd check with the doctor who perscribed the hormones, as they can cause many side effects (I'm sure you know more about that than me). Also, are you seeing an otologist? If not, you might want to have a consult with one. We have a fabulous ENT, who referred us to one after doing my son's previous surgeries, as he recognized that when Ctoma recurs, a sub-specialist needs to become involved.Best of luck and please post any info. you find regarding the growth hormones.Sheri

[Guest guest]

Everyone's case is different, but Ctoma is caused by a disfunctioning

eustacian tube. There are some radical surgeries that can guarantee

there'll be no return, but most docs. try to be a bit more conservative

to preserve hearing. It's always good go get at least two opinions

also. I've heard very different recommendations from two reknowned

otolgoists-and that's frustrating. It's hard to know who to belive or

trust with my child's care.

Good luck!

[Guest guest]

Lap band patients do not get a cathether, it is not necessary. Ninabandbuddy29036 <bandbuddy29036@...> wrote: Good Evening,I am scheduled for surgery on Oct 28th. My friend just had gastric done and she was on a catheter (sp?) for a couple of days. Do we get one with the lap-band procedure? Just wondering.Thanks,

Nina Eguia Patient Coordinator, Dr Aceves888 344 3916 , 619-962-8142nina_eguia@...

All-new - Fire up a more powerful email and get things done faster.

[Guest guest]

susan they only thing your going to feel is a little discomfort no one will even know youve had surgery unless you tell them youll be up and moving in a matter of hours after your put back in your room good to gonina eguia <nina_eguia@...> wrote: Lap band patients do not get a cathether, it is not necessary. Ninabandbuddy29036 <bandbuddy29036 > wrote: Good Evening,I am scheduled for surgery on Oct 28th. My friend just had gastric done and she was on a catheter (sp?) for a couple of days. Do we get one with the lap-band procedure? Just wondering.Thanks, Nina Eguia Patient Coordinator, Dr Aceves888 344 3916 , 619-962-8142nina_eguia All-new - Fire up a more powerful email and get things done faster.

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[Guest guest]

I am scheduled for the 28th too so we will be there together! Soooo

excited!

Terri S.

> Good Evening,

>

> I am scheduled for surgery on Oct 28th. My friend just had gastric

> done and she was on a catheter (sp?) for a couple of days. Do we

get

> one with the lap-band procedure? Just wondering.

>

> Thanks,

>

>

>

>

>

>

>

>

> Nina Eguia

> Patient Coordinator, Dr Aceves

> 888 344 3916 , 619-962-8142

> nina_eguia@...

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

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

> All-new - Fire up a more powerful email and get

things done faster.

>

>

>

>

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

> Messenger with Voice. Make PC-to-Phone Calls to the US (and

30+ countries) for 2¢/min or less.

>

[Guest guest]

Hi ,

First off, I hope you will consult with 2 or 3 orthopedic surgeons who

have experience with CMT feet. And give yourself time to weight ALL

the options. Realize too that surgery is not a 100% guarantee that

foot pain will go away.

I have had burning feet pain since age 7. I had tendon surgery when I

was 10 on both feet during one summer. Hard casts on both legs for 6

weeks or so, then physical therapy, then back walking and to school.

And I still had that burning foot pain. And I still have it now

sometimes too.

It seems that recovery time from foot surgery depends on the nature of

the surgery done. I think we've got some posts in our archives and I'm

sure you'll hear from others with more experience.

~ Gretchen

[Guest guest]

Hi, my name is . I've been a member of the group for sometime now, but have

never posted anything. I figured since I have first hand experience (I believe)

with the type of surgery you are referring to it's as good a time as any to

introduce myself.

When I was eleven and again twelve , right at the end of summer for both I had

my surgeries. I can tell you spending 2 months in a wheelchair during my first

two years of middle school was not fun.

The surgery was for " Pes cavus Deformity " The procedures were 1. multiple tendon

transfers including posterior tibial transfer, extensor hallucis longus

transfer, toe flexor tendon transfer to extensor tendon with plantar fascia

release. 2. First metatarsal dorsal closing - wedge oseteomy.

For each surgery I stayed in the hospital for a week. I was in a wheel chair

for the first 60 days, then I moved to crutches. The pain was next to nothing

for me. I'm afraid I'm not too familiar with your particular experience with

CMT.

I know that severity of pain and atrophy can very greatly even with in a family.

I'm not sure if any studies or findings have been shown that shows a increase in

severity as the disease is passed onto generation to generation. My great

grandfather was the first known case in my family. He was able to go out country

line dances well into his seventies.

My grandfather shows ittle signs. My Uncle was the first in the family

diagnosis, and he went through a lot of different procedures before the

narrowed it down to CMT.

I did not come to live with my father until I was almost ten years old. I from

an early age knew that I had something wrong with my feet. I use to run bare a

lot as most five year olds do, and as I did I started getting the tops of my

toes rubbed raw from paving. It didn't take me too long to wear shoes at all

times. It was right around the time my father received custody of me that his

side of the family was all being checked for CMT.

Sorry for digressing I was mentioning the pain after the surgery. As for my case

having it classified as severe I hardly feel anything from my knees down. I have

constantly found cuts and have on more then a few occasions dropped things on my

feet and have not felt noticed.

To give you an idea I just recently had one my toenails complete fall off. The

pain was next to nothing, but I'm afraid I have yet to start growing the nail

back. You mention that you have bone spurs, I've been lucky enough to dodge that

particular affliction.

I'm not sure how this surgery would help with bone spurs, I can very well be

wrong but from what little research I've done a direct link is not there. Aging,

weak joints, and osteoarthritis appear to be the main factors. Though I do not

bone spurs, I did develop several I guess the best way to convey size would to

say egg yolk sized growths on the bottom of both feet. They were thought to be

scar tissue.

After about fours years of walking on them daily I had them surgically removed,

the biopsy showed it as banine. I have not talk to anyone else who has had these

prcedures done so I don't know if you could expect the same thing to haoppen to

you.

You mention the curled toes, I'm not sure how I feel on how that turned out for

me. I did mention as a child running bare I foot it was a problem, and I've

grown very accustomed to wearing something on my feet during all waking hours.

Before I had the surgery I could remember stumbling over my toes when I only

wore socks.

With the toe fusing you will no longer have any really control over the moments

of your toes. I can not move my big toes, and the other four move together as

one. I would warn that though you will have more stability with toes fused, but

you will have to most likely wear something on your feet at all times still. I

have stumbled to the restroom many of night and have hit my toes dead onto a

wall or piece of furniture.

I don't feel the hit, but in the morning when my toes are bruise and my body

will not allow me to walk without falling forward, I wonder if the curled toes

would have been better. In my honest opinion the surgery is strictly cosmetic.

My high arch was taken down but if looks are anyone top concern ( I'm not at all

assuming it's one of yours) the surgery leaves five scars 3.5 inch's in length

on foot/ankle, along with ones on the toes. After 14 years the high arch has

not returned but it's slowly coming back. I've lost one shoe size so far. I hope

that helps you too make what ever choice it is you decide.

I'll be sure to get back on and post some of background, and hope to be a active

member in posting from here on out.

[Guest guest]

Thanks for sharing your experiences. My achilles is so swollen today it is

painful to walk. I have very high arches and my ankles roll if I step on a

pebble wrong. My reflexes have been absent for several years now and I have

problems with my feet going numb. My

doctor advised me not to drive anymore. I am also being treated for RA. I have a

neurostimulator implant but it no longer takes the edge off the pain. My doctor

sent me home Friday with information and a DVD on a pain pump. I'm not sure how

I feel about that yet. I appreciate you sharing with me.

Pat

[Guest guest]

hi,

my son had both his tonsils and adenoids out last april. they took out all of

the tissue of both tonsils and adenoids. so far my son is doing great since the

surgery. his speech sounds the same as before no high nasal pitch. his speech

has improved somewhat. he is attempting to have conversations with us now. his

speech is still very hard to understand. but he has been starting on occasion to

use 2 to 4 word sentences with only 2 words not understood clearly. my son was

very sore and in a lot of pain post surgery. but that i was told was expected.

my son had them out due to he had suspected sleep apnea 9they thought his

tonsils or adenoids were blocking his airway . they took them out for several

different reasons none of them were for strep throat infections or ear

infections either. my son kept getting the croup constantly and was constantly

getting some sort of infection either a constant cold or sinus infection.he also

had a constant seal bark wheezy cough that scared

the dickens out of me all the time. this cough would almost always be in the

middle of the night. the other reason was due to they thought his tonsils looked

enlarged and the adenoids were too. well come to find out my son had severe

asthma too. now when the ent came out to tell me the surgery was over .he told

me that he found that my sons left tonsil was completely infected and was deeply

embeded in his throat. now my son has only been sick 2 and that was with a

stomach thing. his asthma is much better too. no more croup and not been sick

once this winter so far.just allergies.

anyway just wanted to let you know our experience. we had no problems or

complications with the surgery or after during recovery.

good luck,

jeanne mom to my angel jamie 8yo (verbal and oral dyspraxia,sid,hyponia and

severe asthma)

nh

[Guest guest]

Hi ,

My son is almost 3, with apraxia and hypotonia and some mild midface

abnormalities as part of another syndrome.He has sleep apnea with

colds. He had a bad case of tonsillitis last year and could hardly

breathe while awake. He got steroids and is much better, of course

till the next tonsillitis. Velopharyngeal insufficiency (VPI) is very

common in his syndrome. It does get worse when adenoids are removed,

and the ENT said in his case if he needs his tonsils out he would

probably leave some adenoid tissue to provide support in the throat

and minimize VPI. I think the main risk factors for VPI are

anatomical problems and hypotonia. If your child does not have these

problems, maybe the whole adenoid can be removed. You can ask your

ENT. Also, it never hurts to get a second opinion if you have any

questions. I also have triplet 5 1/2 year old girls, 2 who have

already had their tonsils and adenoids removed by coblation (I highly

recommend this method,...it's less painful, and apparently much

quicker recovery ... less pain medication needed compared to regular

tonsillectomy). Their voices did change for quite some time.We had

two different surgeons due to insurance reasons. Each said the voice

would return to normal after a few weeks. I think it took a year or

more for the voices to return to 'normal.' THe most nasal change in

voice did improve a lot after a couple of months. hope this is

helpful. Gretchen

[Guest guest]

I had a screw work loose within a week of starting walking after having

my foot fused. I was told it happens all the time. I had to stay off my

foot for another month though.

I've also been told that the hardware is there to hold the bones while

they heal, and that once the healing is complete they sometimes remove

all the hardware.

O

[Guest guest]

In my experience and observation, a screw working itself loose kinda

means that the bone itself has taken back structural integrity and a

goodly amount of strength.

As to whether this - the extrusion of metal screws - is common for

those with CMT, both no and yes.

NO. I don't think that our CMT itself causes the the metal to be spit

out.

YES. As I think that CMTer's on average have more ankle and foot

disorders with resultant surgeries, I think we can say that there would be more

of these observed events.

Of course, YMMV.

[Guest guest]

Hi ,

I asked my doctor your exact question before the same surgery. I was afraid of

becoming an addict. My doctor told me as long as I used the pain meds for pain

and not when I didn't need them I would be okay. I always keep his advice in

the back of my mind.

When my son had the same surgery he was given a nerve pain blocker of somesort

during the surgery. It lasted several days. He had access to a demeral pump the

first few days when he was in the hospital. He used it 1 day. He came home with

Vicodine that he took regularly for a week or two after that he was on Advil.

Same with me but I was taking regular Tylenol not Advil.

Our schedule was about 1 or 2 days strong stuff, week or 2 Vicodine or Codine,

then a week of Codine or Vicodine at night only to sleep, Tylenol or Advil

during the day. Home free after that.

[Guest guest]

,

It will depend on the exact procedure you have, your age, general health and

overall disposition to rehabilitation and your determination to win. I've had

both feet subjected to triple arthrodesis procedures, went through the weeks and

months of wheelchair/walker confinement and the ongoing PT associated with each

procedure. I take oxycodeone, tramadol and gabapentin for pain releif, and this

regimen seems to

work alright.

I am NOT pain free by any stretch of the imagination, but instead choose to

focus on my ability to move about and enjoy life, as opposed to sitting useless

in a wheelchair. I drive, walk, cook, bake, lift, lug, etc., and would not be

able to do so without a very strong desire to enjoy life, as opposed to letting

this disease interfere and

win.

Mark

[Guest guest]

Hi ,

First off figure 8 to 10 weeks in non weight bearing and a like amount in the

walking cast. I really didn't have a lot of pain while in the cast but when I

started walking. Your leg is gonna swell up like a balloon. The docs tend to be

optimistic on down time then change their tune once you've undergone the knife.

If your feet are that screwed up prolly you won't have a lot of pain. They gave

me a morphine pump for the 1st day after surgery (man hit that button every 50

min or else) then a script for Vicodin.

I used them the first day then gave the rest to my wife for bad athritis days. I

really have a high pain threshold, my feet are pretty dead. Really the down time

bothered me more than the pain did. It took a year for the pain to go away but

usually a dose of Ibuprophen solves that.

It's been 20 mos since the surgery, my leg hardly swells (only when I'm on my

feet for more than 4 hours) and I rarely have foot pain. Figure the first year

is really gonna suck but it's way better than walking on the side of your foot.

Ed

[Guest guest]

My experience is surgery doesn't work, makes the condition worse ultimately -

over thirty odd years - and who wants to take pain killers?

There is no prize for walking. So long as you can stand for five minutes a day

to relieve pressure and help your kidneys work it's okay to be who and what you

are. My experience is that the world is much easier to experience I comfort -

using a chair - than making life a battle.

This isn't giving up or in, it is using technology to enhance life experience.

Smiles :-)

JonC