Re: surgery tips

January 26, 2009

In a message dated 1/26/2009 4:20:39 P.M. Pacific Standard Time,

lucaaah@... writes:

My doctor won't do these because they make the feet weaker.

January 27, 2009

I had foot surgery on both feet in 1962. Plaster casts up to my knees

and non-weight bearing for 2 weeks, then I got 'walking casts' for

another 4 weeks. Then the casts came off, my feet were real tender, and

the stitches were taken out. The doc said now " walk " - OW! But as I did

physical therapy, swimming, and walking in sand, my feet got stronger

and the pain diminished. Haven't needed any foot surgery since.

You can access our Archives for previous messages on 'foot surgery' for good

info.

Gretchen

January 27, 2009

Hi -

My son just had bilateral elongation and osteotomies in the past year.

Healing has been slow, but the results have been amazing. That said,

the both the ortho and the neuro have said that future surgeries are

dependent on the individual and the severity of the CMT. My son actually had the

elongations done at age 5 and then again at age 14. There's a young man that we

know who has CMT who has had several surgeries during his teen years and is

facing another one in a few weeks.

I don't think there is anyway to know for certain.

Keep us posted and good luck with whatever you decide to do.

January 27, 2009

To Whom it May Concern

I've recently undergone two triple arthrodesis procedures, and it has changed my

life dramatically. Granted there are trade offs, but I am now able to do many

things that I found very challenging previously. You must find the right

surgeon, and ask for patient references.

Mark

January 27, 2009

Hello Gretchen

Nicely put. I too have gone through three surgical procedures, and thank God I

had the faith and patience to commit. It has changed my life. I thank God

daily that you are here and providing so much help, guidance and assistance to

those who have this affliction and

have no other resources. You are truly a gem...........and I can say that

because you and I shared lunch together in November, and I knew instantly that

you were the real deal. God Bless you........

Mark

January 27, 2009

Photoacoustic:

When I was in college, I thought about getting this surgery but found out from

my doctor that it is not worth it since your muscles will eventually go back to

it's stiffness and spasticity. I suggest you just continue doing stretch

exercises with an exercise band. They sell them in Target or Walmart. I found

mine in Target selling Pilates bands. When you start with your stretches it

might be painful, as it was for me. The more I did them though the pain reduced

to minimum or no pain and my calves and ankle muscles became less stiff and

weak.

Marin

Bridgeport, CT

January 27, 2009

Hello,

I had my achilles tendons lenghtened 31 years ago and they never needed

further medical assistance.

Good luck,

Jill

January 27, 2009

In response to your question, I had the surgery to lengthen my feet when I was

in high school, back in '83. It did help tremendously because my arches were so

high that I was walking on the outsides of my feet. The only additional surgery

that I did have to have was to straighten my toes because they turned into

hammer toes (except the big toe on each foot).

The straightening of my toes didn't work too well. Overall, though, I would say

that I walk much better since the main surgery(ies) of lengthening the feet. I

couldn't walk down the halls in H.S. without leaning on the walls for support

before the surgeries. So, I would do the foot lengthening knowing this.

Dawn

January 27, 2009

I am scheduled to have similar surgery on my foot next month. Can anyone tell

me what " worst case scenario " would be regarding the risks of this surgery?

Lynda

From: photoacoustic <lucaaah@...>

Subject: surgery tips

Date: Monday, January 26, 2009, 12:52 PM

Hello,

I have been considering surgery for many years, neved decided to take

it tough.

I need reports from many about risks/advantages about achilles

elongation, plantar faciotomy, and tibial transposition.

I know many where happy right after surgery, I wonder what happened

after it: was it jus one shot and go or did they require extra surgery

every so many years to adjust the situation?

Thank you

January 28, 2009

Hi Lynda,

Some ideas for NOT having a 'worst case scenario' from surgery:

1) Make sure you like your surgeon, have 100% confidence in her/his

skill, and that she/he has a proven successful track record with CMT feet.

2) If you haven't already had a 2nd opinion, get one. Maybe even get

another.

3) Ask your surgeon and/or anthesiologist to give you antibiotics during surgery

so no infection will occur. Take the Medication Alert list to the anestheologist

a week before surgery, discuss it and any allergies you have. Find out if you

will need extra blood and donate to yourself several weeks before surgery.

4) If you're going to need physical therapy, understand you'll need

to committ to it 110%. If you need to be non-weight bearing for a

period of time, get a stack of good books from your library, pick up

a sketch pad, learn to knit/crochet, or other sedentary project,and be careful

what you eat so you don't gain weight from inactivity.

5) Think POSITIVE!

Gretchen

January 28, 2009

Hello

On Saturday my New England Support Group was treated to a presentation by Dr.

Duggal CMT Foot/Ankle Specialist from Beth Israel Deaconess Medical Center in

Boston. During his presentation, he highlighted two patients who had undergone

procedures you've mentioned, and reported great success with both cases. While

there are not guarantees with surgical intervention, often times the outcome is

very beneficial to the patient. Of course each situation is unique, and you

never know how things will work out long term. If you have faith in your

surgeon, and have had more than one opinion, I'd give it a shot.

I've had other surgical procedures (triple arthrodesis procedures on both feet)

and thank God that I went ahead with the surgery. Best of luck.

Mark

January 24, 2010

Hi Everyone:

I just signed on to this group about a wk ago and have been lurking. Decided to

answer but say a howdi too. I got my first CI in 2003 (AB), have done

very well hearing in quiet but couldn't hear with a darn in noise (plus am tired

of trying to figure out where sounds are coming from, as you know this can be

exhausting, frustrating, scary, occasionally humorous). Also, I noticed how much

I liked my " baseline " hearing after CI #1 and I WANT MORE, my own hearing bar is

raised.

Anyway I had second implant 1/14/10 at Mayo in MN and get activated tomorrow--I

am very excited, a bit apprehensive to see how I will do this time but have

every reason to believe it will be the same or better than CI #1 since I haven't

been deaf on the left for as long. I too am happily surprised that activation

option is so much faster this time AND am happy to report that the surgery

impact was far less than in 2003 due to simpler procedure, smaller incision, no

head shaving, apparently less head drilling etc. I had a heck of a time with

vertigo in 2003, so was very anxious about that but it hasn't been a problem

this time around. oooo.

Here are some surgery tips, probably all mentioned by ya'll in past but I will

repost since things are fresh in my mind as a nurse, nurse practitioner and

patient:

-If you have any tendency to post-op nausea, ask the anesthesiologist to lighten

up on the knockout dosing (my 1/14 surgery was first time ever that I woke up

with no nausea-that doc is my new hero) There are some newer anti-nausea meds

that can be given during surgery that cause less sedation which also helps CI

patients feel less dizzy/woozy when we wake up so ask about these

-ask surgeon how soon you can quit stronger pain meds with codeine post op and

switch to something like advil instead as codeine increases nausea, dizziness,

balance issues etc for many of us --meaning the feeling of well being can return

sooner if we are off it (both times I found advil alone was fine after first

dose or two of stronger RX) Some docs feel strongly about avoiding

non-steroidal meds due to possible side effects prolonged bleeding time but

others even let patients on anti-clotting meds stay on them as CI surgery is

pretty low bleed procedure

-surgeons often allow patients to drink clear liquids up to 2 hrs preop (this

includes black coffee), if this is the case for you and you are a regular

consumer of caffeine, definitely take advantage of this up to the last minute as

that will help avoid caffeine withdrawal postop headache (but of course we

aren't " addicted " !) Take advantage of this also to consume jello or popsicles

or other clear liquids if you have any tendency to shakiness without calorie

intake (be forewarned some folks have more hypoglycemia with sugar intake only

so this is individual decision)

-codeine and other stronger pain meds cause constipation which frequently

results in other lousy symptoms including dizziness and nausea so the sooner off

that Rx, the better for some folks (however, there's no problem continuing on

codeine if you need it for pain control, just keep the side effects in mind and

make best call for your individual situation)

-don't forget to wear something to the hospital that is not a pullover

shirt/sweater as the head bandage is bulky and not accommodating

-if you feel real thirsty postop and aren't nauseous, drink plenty of water to

replace what you lost (assuming no large amount of fluids were inserted by IV),

otherwise at least take small sips to help with dry mouth symptoms post op (of

course there's side effect of needing to pee....)

-many patients find that body aches (especially upper torso) and sore throat

post op (due to anesthesia positioning, anesthesia tube insertion) are almost

worse than the head/incision pain, so don't worry, pain meds help these too and

everything gets progressively better after a couple days

-see if doc will let you put ice pack on incision area post op once bandage off

and you are home (often the discomfort is at the incision/insert area which

feels better with cold pack)

-those new age moldable pillows are often more comfortable that old fashioned

down or polyester ones

-consider having loaner cane or walker available postop at home just in case you

have more dizziness or balance issues than others might have (rarely needed but

not a bad idea)

-have pillow, towel/blanket, nausea basin and water for sipping available in car

for when you are transported home

-if you get taste changes post op (this can be common), gum or hard candy helps

some people

These are first thoughts off top of my head. Will send more later if I think of

them. Good luck to everyone preop, especially those scheduled this wk (yay

Bonnie and Sue!)

Deborah

January 24, 2010