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Glad to hear that the pins coming out should not be painful.

,

I am 40. The doctor did say it was good that my foot was flexible and not

rigid so I think that my have an effect on what type of surgery you have. The

surgery was to make my foot more stable. Before the surgery I could step on a

pebble and twist my ankle. I walked on the outside of my foot, my heel was

turning in. As the doctor explained it I was a 3 legged table balancing on 2

legs. I had surgery when I was 15 to straighten my heels and the doctor always

warned me that I may need the tendon transfer. We knew the left was not as

successful as the right after the heel procedure but I can't complain about the

25 years between the surgery.

Ty,

Are you still in a cast?? What is your next step?

Thanks for easing my mind about the pins.

Vicky

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  • 4 weeks later...

Vicky,

Just reading your email now. Don't know if you've had the pins removed aleady;

but, when I had the pins removed from my heels, it was much quicker and less

painful than I thoguht it would be. Also, considering what the pain from surgery

was like, that was nothing!

Dawn

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Hi Dawn.

I had the pins removed a week ago. The first one was painful because

the skin had started to grow around it...ouch. The second one was a

piece of cake.

I am now on week 7 after surgery. I am still in a cast but thank

goodness I can put weight on my foot now. In approx. 2 weeks I will be

fitted for a brace that I wear in my shoe and keeps my foot at a 90

degree angle. I will stay in that until the tendon transfer is

stronger and I go to physical therapy. The doctor said it could be up

to 3 months. Its just a relief to be able to put weight on it.

have a great day.

Vicky

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Vicky,

Who's your Dr.? I had surgery 20y rs ago. They did the tendon transfer after the

lowered the arches though. Seperate surgery. The tendon transfer didn't work and

my toes are still bent up. I guess it might depend on how bad (severe) the foot

was to begin with. Anyway while the little toes are bent, I still have the big

toe on each foot for support. It's amazing about the pain not being so bad, and

I congratulate you. The lowering of my arches did work so I was always very glad

about that.

Glad to hear that the same thing happened though re: the toes pulling back when

the arches were lowered. It's good to get feedback. What is interesting is that

I don't have a computer at home and this one keeps jumping around so it's

affecting my train of thought. Hope you get the point though. Nice to hear from

you in these posts.

Dawn

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  • 1 year later...

eek

after posting last week that Todd hasn't had any surgery because his vision

hasn't been affected we are now fast approaching a completely different

situation!

He has been needing to sit closer to things so when his eye test showed his

vision was down we weren't surprised. Everyone assumed a new glasses

prescription and it would all be fine. however yesterday his prescription was

checked and doesn't appear to have changed significantly. The best conclusion

is he will need a lid lift, but of course they want to do another vision test in

a couple of months.....

We however would prefer to go to Moorfields, Todd is the only child they see

here with BPES and I really think if the decision to operate needs to be made it

should be made and the operation done by someone who has experience, so as long

as we are not snowed in tomorrow! we are off to the GP to get another referral

to Moorfields

This all seems so scary - Todd is not impressed with he idea and really doesn't

want to lose his ability to roll his eyes back in his head - typical 7 year old

boy take on it! Wr of course just want to do the best thing for him. We saw Mr

Collin nearly 4 years ago - but I understand he no longer does NHS work? if not

do we just ask for a referal to Moorfields and take pot luck? or is there

another consultant we should try to see there?

Caroline

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lol to lyndens friends utter amazement and trying to show off ....his big trick to show everyone is he too can still roll his eyes back even after 8 surgeries (he is 12 yrs old) On 2010-01-06, at 4:22 AM, cazobbs wrote:

eek

after posting last week that Todd hasn't had any surgery because his vision hasn't been affected we are now fast approaching a completely different situation!

He has been needing to sit closer to things so when his eye test showed his vision was down we weren't surprised. Everyone assumed a new glasses prescription and it would all be fine. however yesterday his prescription was checked and doesn't appear to have changed significantly. The best conclusion is he will need a lid lift, but of course they want to do another vision test in a couple of months.....

We however would prefer to go to Moorfields, Todd is the only child they see here with BPES and I really think if the decision to operate needs to be made it should be made and the operation done by someone who has experience, so as long as we are not snowed in tomorrow! we are off to the GP to get another referral to Moorfields

This all seems so scary - Todd is not impressed with he idea and really doesn't want to lose his ability to roll his eyes back in his head - typical 7 year old boy take on it! Wr of course just want to do the best thing for him. We saw Mr Collin nearly 4 years ago - but I understand he no longer does NHS work? if not do we just ask for a referal to Moorfields and take pot luck? or is there another consultant we should try to see there?

Caroline

& TonikkaAre you or anyone else looking for a photographer? for your family? pregnancy? Baby? Children? Wedding?check out our websitestmareephotography.blogspot.comtmareephotography.com

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Hey Im over 40 and had ops at 14, I can still roll my eyes back too!!

My eye ops were using muscle tissue from my leg, and still going strong.... by Mr Colin trained consultants at Moorfields.

Caroline, out thoughts are with you and Todd, it must have been a bit of rollercoster recently for you all.

Loads of love to all

clare

x

From: rainamint@... <rainamint@...>Subject: Re: blepharophimosis surgeryblepharophimosis Date: Wednesday, 6 January, 2010, 11:41

Caroline

Let Todd know that Aedan (age 7) after surgery can still roll his eyes back. allison

In a message dated 1/6/2010 6:23:51 A.M. Eastern Standard Time, cazobbs (DOT) com writes:

eekafter posting last week that Todd hasn't had any surgery because his vision hasn't been affected we are now fast approaching a completely different situation!He has been needing to sit closer to things so when his eye test showed his vision was down we weren't surprised. Everyone assumed a new glasses prescription and it would all be fine. however yesterday his prescription was checked and doesn't appear to have changed significantly. The best conclusion is he will need a lid lift, but of course they want to do another vision test in a couple of months.....We however would prefer to go to Moorfields, Todd is the only child they see here with BPES and I really think if the decision to operate needs to be made it should be made and the operation done by someone who has experience, so as long as we are not snowed in tomorrow! we are off to the GP to get another referral to MoorfieldsThis all seems so scary - Todd is not impressed

with he idea and really doesn't want to lose his ability to roll his eyes back in his head - typical 7 year old boy take on it! Wr of course just want to do the best thing for him. We saw Mr Collin nearly 4 years ago - but I understand he no longer does NHS work? if not do we just ask for a referal to Moorfields and take pot luck? or is there another consultant we should try to see there?Caroline

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  • 8 months later...

Hi ! So glad you are home and healing! Keep strong!

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> I'm home from the hospital.  The surgery went well.  The tumor was

significantly intertwined with the nerve root.  There was a high risk of nerve

damage/loss of leg function, but all came out well.  Thank you to all who sent

me well wishes.  It was much appreciated.

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