Another new member

[Guest guest]

Moderator's note:

If anyone can recommend a doctor for Becky, please write to her privately. We do

not list doctors names in the group.

Kaylene

Hi everyone, I am new to the group and don't think that I've introduced

myself. My name is Becky and I am 30 years old, born with amniotic band syndrome

which lead to bilateral clubbed feet (with the left foot being much more severe-

my left foot is a size 6 and missing its big toe, my right foot is a size 9 and

fairly normal looking and functional for being clubbed.) The ABS also affected

my right hand (I was born with syndactly and 3 " little " middle fingers.)

I've needed many surgeries from birth up until the present. At

first, the surgeries were mainly on my hand to split the syndactly into 3

separate fingers along with tendon releases on feet and castings/braces.

When I started high school, I started to have more pain. I went to doctors who

told me that my left foot hurt so bad because of the way that I was walking on

my toenails (my toes were all curled under) and so a hammertoe surgery was

performed.

That helped for a while, but due to the lack of a big toe, all my other toes

kept growing to the right to compensate for balance and once again, I ended up

walking on the sides of my toes and nails. My right hand hurt too, but no doctor

could help me until I finally found one who suggested RSD or CRPS as it's now

called.

This is a chronic, painful condition and it was caused by all the surgeries that

I have needed. It has caused the color on my right hand and left foot to turn

purple, my foot is a constant 6 degrees below the rest of my body and I am in

constant pain. My hand and foot feel like they are always on fire and very

sensitive to touch and temperature- I can't sleep with sheets on my foot and my

hubby can't hold my right hand.

The decade after graduating high school, I had several foot surgeries with not

much success and I learned the hard way that I needed to see a foot/ankle

specialist instead of a podiatrist.

7 years ago, my family and I traveled the country to find the top foot and ankle

specialists to see if they could help me with my pain and deformed foot that was

causing the pain. Almost all of their opinions were a forefoot amputation, but I

was too scared at the time to do that so I opted for another series of

surgeries. At that time, my ankle would " collapse " on me several times a day,

especially if walking on uneven ground. so my ankle would fall under me, and

this could easily cause a sprain or break or other injury.

so the surgeon but a metal bolt in my ankle to stabilize it, along with some in

my toes to try to keep them straight (even though they've migrated to the right

again). The surgery did help my ankle as it only falls under itself occasionally

now.

The CRPS has gotten worse and chronic, and because of the thinning of skin that

it causes coupled with the way I walk, I now have my 4th cellulitis infection on

the same toe (next to my big toe stump) in 2 years. I'm scared that one day,

antibiotics wont work for the infections anymore and that I'll need to amputate

more than my forefoot.

So, this summer, my family and I are traveling once again to the top

foot/ankle/CRPS specialists who specialize in adult clubbed feet to see if they

also suggest a forefoot amputation. I've seen foot and ankle docs before but

never one that knows much about clubbed foot- anyone know of a good one? We are

willing to travel anywhere. I should ask this on a clubbed foot forum. WE want

these doctors opinions so that I can be more at peace with a forefoot

amputation- it's very scary for me to do this (my worst fear actually) and now

that I've had sooo many surgeries and wasted life to correct my foot, my only

option is to take it off- it seems like too many years of a wasted, painful

recovery time to me.

Well, that's my long story in a nutshell. I've needed nearly 20 surgeries and

don't want anymore- the next one that I get will be a forefoot amputation.

Amputation can cause the crps to spread, I've heard, but my doc says that as

long as I am given a constant epidural during and after the surgery, the chances

of it spreading and getting worse are greatly reduced, and he has agreed to work

closely with the surgeon of my choice. I've also been lucky with meeting many

others who've had an amputation with crps/rsd successfully.

I am married to a wonderful guy, though my pain and limitations does put a heavy

strain on our marriage. My pain and infections have become a " normal " , likely

occurance in our lives so not much attention is paid to me when it happens

anymore. I need to have medication to live and get out of bed and am monitored

through a great pain clinic.

I work part time and go to school part time to finish my degree. I'm also on

SSD. I am under a lot of stress lately and am looking to find others in chronic

pain and/or a similar story to mine. Please send me a message if you can relate

to my story. I look forward to meeting you all!

Thanks for Reading,

Becky in New York