foot surgery

[Guest guest]

I had foot surgery last sept. and it never has healed correctly. I had to

have it restitched twice and on Oct 22, 2001 Dr. Lisenby did a culture to

make sure there was no infection. He told me and stuck to his word that

there was no infection until, August 27,2002. when I had another culture

done, and he calls me up to tell me that this one came back " the same as the

first one " fungus elements. I asked him why he had not told me this sooner

knowing that I was getting checked in Oct. so I could start taking MTX and

soon going on remicade. his response " I didn't think it was that big of a

deal that he couldn't have been that much " I have been to 2 other Doc's

regarding this foot this year and they didn't want to fool with it, Dr.

Lisenby said no one wants to clean up behind someone else!!! We've been

draining a syringe full of stuff outta the lump about every 4-6 weeks and

shooting cortizone into it. His excuse for this was that since he had to

recut and restitch then there's not much tissue and the fluid is just

draining but nothing to worry about. The lump on top of my foot popped on

August 20, 2002 and ugly stuff has been draining. and still is. My Rheumy,

Dr. Larcour referred me to Dr. Hewitt which is a infection specilist, and I'm

taking 400mg of Diflucon a day. I was told it could take up to a year to

clear this up,

and diflucon may not even be the right drug to treat it with, he will just

have to keep breaking down the culture.The infection Dr. works only in the

hospital, so I'm making visits as a out-patient.

I would like to keep anyone else from falling into such a mess as I have and

Dr. Lisenby doesn't deserve to have the title of Dr. and of course now

several people have told me horror stories about him.....

and also I hurt all over.

Jan in AL

[Guest guest]

Jan - I'm so sorry to hear about your infection problems! A wound can take a

very long time to heal. I had one on my leg that took a year, and it has

left me with scar tissue that still breaks open and bleeds sometimes.

That doctor should not only be dis-barred (or whatever doctors call it) but

also, hopefully, comes down with a nice whopping infection himself. What an

idiot. However, a good lesson for the rest of us to learn (I don't know what

you told this doctor about other drugs, illnesses, etc.) - always be sure to

tell every doctor, even if they don't ask, all of your illnesses and drugs.

Sometimes, they may overlook something that is important - such as with Jan

taking the diflucon, if you are a diabetic, may interact with your diabetes

meds.

Good luck, Jan, hope you are feeling better soon!

[Guest guest]

I haven't written in a while, I had a simple morton's neuroma surgery on my foot

in sept. 01. it never did heal right and the pod.Dr. kept telling me the culture

was negative for ten months, I was in his office 12 times getting the knot

drained and cortisoned. he didn't know who to refer me to since there was no

infection and he said it's just taking a long time to heal. all this time the

report had come back as fungus elements present!!! when the knot ruptured in

Aug. he did another culture and then tells me this is so strange it came back as

the first, except it's growing more.....

My Rheumy referred me to an infection Dr. and then also to a Orthro. Doc. I've

had 2 surgery's since Oct. 4, 02 the first didn't heal due to the fungus still

growing and also to a staff infection, the second surgery they put a wound vac

on it instead of stitches. it's healing up great this time, I'm so proud to have

BC/BS my prescription is 830.00 every 2 weeks for V-Fend for Fusiara Fungus. in

the hospital they were using IV's and I had a reaction to imphorcian B and went

into renal failure and then congestive heart failure due to volume overload. I

just thought the PA was giving me problems. lol

I'm doing alot better now, got out yesterday and when to Church. I've been

taking Vicodan and also muscle relaxers for the PA, and getting a theraputic

massage once a week.

After kidney's and all get calmed down, maybe then I can start back on meds. I

had been on mtx - arava - Bextra and also Remicade for 3 infusions, not knowing

that I had this fungus infection. The Pod knew that I started on these meds, in

Dec. of 01. and still refused to come clean with the truth.

I hope when he comes face to face with God that he has a good explanination

since he didn't have one for me - instead he hung up on me when I asked for my

records. uh I have the records now.

You never know how Beautiful things are and also how bright the colors can be

until you see your life slipping away.

I'm thankful for another chance.

I want to Wish Everyone a Happy Holiday.

Jan

Alabama

[Guest guest]

Angie

Hope all goes well for your surgery, we all will be thinking of you.

Annette

On 16 Oct 2006, at 10:40, Angie wrote:

> Its official I am going to have to have surgery on my right foot. He

> says it is a non union fracture and will not heal without surgery. My

> surgery is suppose to be on October 25. I don't know any details

> waiting on the hospital to call with all the details. I am assuming

> this is outpatient I do know I have to be off work for a week and

> then on crutches for 6 to 8 weeks shall be interesting with work ( i

> work with 2 1/2 to 3 ;year olds in a daycare) My question I hope you

> guys can help me with is should I call the rheumy and tell him I am

> having surgery. THanks for all the support you guys give. You really

> help me a lot.

>

> Thanks

> Angie

>

>

>

[Guest guest]

Do the world a favor and report her to the AMA. Better yet, know a good lawyer?

This is just awful, I can't imagine how hard that was for you.

in PA

[ ] Foot Surgery

Sorry to vent, but be careful.

I had surgery last month. Removed growths (little toe) and replaced

big toe joint.

Schedule for a Wednesday. Got onto the op table, then told she did

not have all the tools. Removed IV and sent home.

Friday surgery. Woke up half way through.

The nurses upset with orders, nothing for pain. Tried to contact

her, to no avail. Tried to fill RX for antibiotic. Could not fill

because of RA meds. They tried to contact her all weekend. On

Monday they still could not get her, had to call my Rheumy for more

info and then able to fill.

Please if in lower MI and need foot surgery, contact me. Do NOT use

this Pod.

Sally

[Guest guest]

Hi all,

I recently joined , and really appreciate the ongoing dialogue.

I have two questions (and will come up with many more I'm sure, now that I've

found a great support group!).

1. How have people identified what type of CMT they have? Very expensive testing

through Athena Diagnostics was the only possibility offered to me. Is there any

other way to ID?

2. Surgery on my one badly compromised foot has been suggested-- bone grafts to

restructure the foot, a pin in my big toe, and a tendon transfer. I'd appreciate

any feedback from folks who have knowledge of these procedures.

Thanks,

[Guest guest]

Hello ,

I just had a major tendon transfer as well as the pin in my big toe. If you'd

like to keep looking at the post, I will be documenting the recovery. For now

though, I have very limited amounts of energy because of the drugs and am not

too much in the mood today. I will make a point of posting more tommorow.

defman

From: mary.kornblum <mkornblum@...>

Subject: foot surgery

Date: Monday, October 4, 2010, 7:33 AM

 

Hi all,

I recently joined , and really appreciate the ongoing dialogue.

I have two questions (and will come up with many more I'm sure, now that I've

found a great support group!).

1. How have people identified what type of CMT they have? Very expensive testing

through Athena Diagnostics was the only possibility offered to me. Is there any

other way to ID?

2. Surgery on my one badly compromised foot has been suggested-- bone grafts to

restructure the foot, a pin in my big toe, and a tendon transfer. I'd appreciate

any feedback from folks who have knowledge of these procedures.

Thanks,

[Guest guest]

Hello ,

I do not have an answer to that first question but can tell you my experience

with surgery. I had pretty much the same thing your talking bout having

done...pinned my toes, moved my heal bone, tibial tendon transfer, and posterior

tendon release.....This was done april of 09'...The recovery was long and

painful....or at least mine was...but I did have some problems and actually had

to have a second surgery done the following Feburary. The issue was that since

I had

diminished muscles and tendon strength in my foot, when he transferred the one

tendon to the other side of my foot to help with the drop foot, the tendons that

were left there to support my inside of my ankle and arch werent up to the

task...so basically my foot was waaaaay worse off then before..serious ankle

supnation (i think?).

So on the second surgery the dr took a tendon from my big toe (he made sure it

looked healthy enough for this, or else he was just going

to fuse the joint) and re-routed it to help support my arch(which to begin with

was extremely high, but after the first surgery was extremely low!) so this was

all done be cause I have arthritis in my low back (i am only 30!) and the back

dr said he did not want to touch my back until i had my feet fixed.

So now my foot is a bit better, but still having pain in it, and my back is

probably the worst its been from limping around for two years! didnt think that

one through too well! I would definitely talk to a neurologist thats very

familiar with CMT and get a few opinions from orthopedic surgeons....if you have

any other questions let me know!

Matt

[Guest guest]

I had foot surgery on my right foot almost a year ago. The foot was basically

reconstructed: my arch was lowered, my tendons transferred, a pin in big toe

and my achilles tendon nicked. I was in a cast for 8 weeks, a boot for 2 weeks

and a plastic rigid AFO for another two weeks. I then participated in physical

therapy for about 6 weeks.

Unfortunately, the surgery was not successful. My right foot is weaker than it

was before the surgery, my balance is worse, and I walk with a limp that was not

present before the surgery. The ankle does not appear to be aligned correctly.

Also, four of my toes now curl under my foot, making many movements more

difficult than they were before the surgery. On a follow up visit, I was told

to keep exercising the foot, and it should improve, but that has not turned out

to be the case.

I was told that the surgery could not make the foot worse, although there was a

risk that due to progression of the disease, it might stay the same. This

statement turned out to be false. The doctor also told me that this result had

never happened to him before.

As a result of my experience, I recommend that you get second and third opinions

before proceeding with surgery and also be aware that positive results cannot be

guaranteed.

[Guest guest]

,

Ah yes...I forgot to mention in my message about the lack of movement in my toes

after the surgeries. I seriously cannot move any of my toes after they where

pinned..they are sooooo rigid its almost like a corpses' foot! LOL...my doc said

same thing about " this has never happened before " . I went to the CMT clinic in

Detroit and saw an associate of Dr. Shy after I had my first surgery...I was

actually still on crutches when I saw him, and he said that they never recommend

surgery because of these kinda results and suggests AFOs.

Matt

[Guest guest]

Matt,

Thanks so much for sharing your experience -- sorry to hear that neither you nor

had a positive outcome.... Can you tell me what your level of disability

was at the point you decided on surgery? After reading through the posts, I am

beginning to think my condition is more advanced than I supposed. My right foot

supenates badly and I have a lot of pain at the pressure point, also a lot of

pain at the end of my big toe, I can't walk safely without an AFO (have yet to

find a truly comfortable AFO--is there such a thing?) , my balance was NG but

has improved somewhat after 1.5 years of PT and core work. To complicate

matters, my left knee is arthritic (cartilage removed after a skiing accident).

I have had good luck with HA injections, but by no means have full use of the

joint.

So far, I have only spoken with one foot/ankle surgeon (who has had a few CMT

patients) and will definitely go for more opinions. Does anyone have

recommendations for surgeons in the NY metro area?

[Guest guest]

Day 8:

Everything seems to be going according to plan. I'm keeping the pain down. I

have to say that I've read some interesting feedback concerning other peoples

experiences and thought that I'd include some information concerning my decision

to go with surgery.

15 years ago, I had the same type of surgery and it went extremly well. So well

that I regreted not doing both feet at the same time. At this age that I am now

(42) the surgeoen said that, because of the possible advancement of atrophy

possibly involved, I do it now, or don't do it.

I tried AFOs and had read that using them can advance the muscle deterioration

beacause your not using all of the muscles that you can. I found this to be so

for the time I wore them.

I firmly believe that, once again this my have been in my higher power's plan

because everything from insurance to work to all of the help I'm getting, it all

seems to be going very smooth. Call it what you will, but that's my way of

thinking.

Anyway, things are well.

, thank you for you input. It's kind of comforting to know that somebody

else trully is in the NOW with me. Also, I've failed to thank everybody for all

of the possitive as well as the honest (meaning not so chip chip cheerio)

feedback I'm getting.

That is all

defman

[Guest guest]

,

In my pre-surgery days, the only level of disability with my feet was that I was

constantly " rolling " my ankle when I walked on any sort of uneven ground. My

ligaments in there were so blown out and stretched that it didnt even hurt

anymore when I did it, just looked like a fool fallin over nothing!

The main

reason I chose the surgery route was I was in desperate need of relief from my

back pain and after numerous consults with a back doc, and numerous back

injections, and getting 2nd opinions..the consensus was that to prevent further

damage to my back, my feet needed to be fixed...kinda interesting tidbit.

One doc I saw along the line was asking me about who else in my family exhibited

my

CMT feet...I said my dad...he said how is he now...I said well he just had a

knee replacement and is getting his hip done as well...that doc said, well there

you go..that's where you'll be if you dont " change " your gait/feet.

I dont

regret having it done...I just wish my parents or my pediatrician would have

noticed something waaaay back when and I could had this done then....from what

is

understand its alot easier and more successful the younger you are...like when

you 12 or 13!

Ah well...I am still going to have my other foot done

eventually...it's too weird having two feet that look sooooo different...plus

now

that my left foot is as stiff as can be and the ligaments now are tightened up,

I now roll my right foot (non-surgery) all the time! so i would def recommend

doing it...might just wanna ask the doc not to " go for broke " and radically

change your foot in one surgery....anywho good luck!

Matt

________________________________

From: mary.kornblum <mkornblum@...>

Sent: Thu, October 7, 2010 2:20:49 PM

Subject: Re: foot surgery

Matt,

Thanks so much for sharing your experience -- sorry to hear that neither you nor

had a positive outcome.... Can you tell me what your level of disability

was at the point you decided on surgery? After reading through the posts, I am

beginning to think my condition is more advanced than I supposed. My right foot

supenates badly and I have a lot of pain at the pressure point, also a lot of

pain at the end of my big toe, I can't walk safely without an AFO (have yet to

find a truly comfortable AFO--is there such a thing?) , my balance was NG but

has improved somewhat after 1.5 years of PT and core work. To complicate

matters, my left knee is arthritic (cartilage removed after a skiing accident).

I have had good luck with HA injections, but by no means have full use of the

joint.

So far, I have only spoken with one foot/ankle surgeon (who has had a few CMT

patients) and will definitely go for more opinions. Does anyone have

recommendations for surgeons in the NY metro area?

[Guest guest]

SO HAPPY to hear that you are doing well, that is awesome, i am still Praying

for you  and for you to have a speedy recovery... i noticed that you said AFO'S

cause you not to use all the muscles in your leg, i have them and i do not wear

them, they just don't fit well, and to be honest i don't own a decent pair of

shoes for them to adjust them, so i just don't wear them, as for me, yes i do

have weakness in both legs but they say its my right leg but to me it feels more

so in the left..but what do i know? maybe it is the right one and i am overusing

the left one..? who knows, i know that my neurologist told me that  in 1994 i

would be in a wheelchair within 10 years and PRAISE GOD ABOVE i am STILL

WALKING, not as well as a normal person but as long as i can walk at all i am

gonna walk...and PRAISE HIM for it...again, Keep up the Good work..and continue

to keep us posted....GOD BLESS    tracey p.s. i had surgery on my neck in

july, supposedly i had

3 herniated discs that they removed and replaced with titanium plates and

screws, but my left arm is giving me a FIT, it hurts in the weirdest place and

feel like it goes slam to the bone.. the surgeon says he doesn't see anything

wrong with it? but he hasn't  even looked at it..says it will get better.but it

has been 3 months since the surgery, so i think maybe its time i visit my

neurologist? could CMT have anything to do with this, it is SO BAD that if i

weren't left handed i honestly believe that i would have cut it off....just

wondering what you thought?? or anyone else? thanks so much in advance

......tracey

From: defman <defman555@...>

Subject: Re: foot surgery

Date: Thursday, October 7, 2010, 3:47 PM

 

Day 8:

Everything seems to be going according to plan. I'm keeping the pain down. I

have to say that I've read some interesting feedback concerning other peoples

experiences and thought that I'd include some information concerning my decision

to go with surgery.

15 years ago, I had the same type of surgery and it went extremly well. So well

that I regreted not doing both feet at the same time. At this age that I am now

(42) the surgeoen said that, because of the possible advancement of atrophy

possibly involved, I do it now, or don't do it.

I tried AFOs and had read that using them can advance the muscle deterioration

beacause your not using all of the muscles that you can. I found this to be so

for the time I wore them.

I firmly believe that, once again this my have been in my higher power's plan

because everything from insurance to work to all of the help I'm getting, it all

seems to be going very smooth. Call it what you will, but that's my way of

thinking.

Anyway, things are well.

, thank you for you input. It's kind of comforting to know that somebody

else trully is in the NOW with me. Also, I've failed to thank everybody for all

of the possitive as well as the honest (meaning not so chip chip cheerio)

feedback I'm getting.

That is all

defman

[Guest guest]

You mentioned you couldn't find a comfortable AFO. I wanted to share that I

have found comfortable ones and they work great. They made of carbon, so really

light and I think they are toe offs. They are off the shelf, but I had a strap

added to keep my right foot from rolling too much. They mostly help with the

foot drop and fatigue. I feel much more confident walking in them than without.

I put my custom orthodics over the bottom plates of the AFO, and I buy my shoe

1/2 size larger to give me more room with the braces.

My dad (89) got something similar, not Toe Offs, but carbon material, and he has

better luck wearing his orthodics over the foot piece too. It took a few visits

back to get them adjusted satisfactorily, so keep trying.

[Guest guest]

Kay,

I forgot to add about checking through our archives because alot of people have

posted on foot surgeries (1,247) and (100) on foot surgeons. Another doc I am

familiar with is Dr. Conti in Penn.

Gretchen