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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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,

I am so sorry. I must have missed a post (or several). So sorry to hear of your

issues. Hope you are making a strong and good recovery.

Mark

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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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Hi Mark,

Thank you for the well wishes.  I had a large tumor removed from my L4 nerve

root. I'm very fortunate not to have lost additional function with the surgery,

which is due to the excellent surgeon. He does these types of surgeries all

the time and said my tumor was 'unusual', 'not something they typically

see'.  Not sure if it's CMT related or not.  They are doing pathology studies

on it.  Will see what he thinks at my follow-up.  If it turns out to be

connected, I'll let the group know.

I had outstanding care at Cedars-Sinai, a CMT center of excellence.  I highly

recommend them.

Thanks again,

From: meandcmt <mrwillis@...>

Subject: Re: Surgery

Date: Saturday, September 11, 2010, 7:37 AM

 

,

I am so sorry. I must have missed a post (or several). So sorry to hear of your

issues. Hope you are making a strong and good recovery.

Mark

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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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Hi !

SO glad the surgery went well and you were happy with the treatment you

received. Hope the pathology studies turn out well for you!

Karon Edleson

Re: Surgery

Date: Saturday, September 11, 2010, 7:37 AM

,

I am so sorry. I must have missed a post (or several). So sorry to hear of your

issues. Hope you are making a strong and good recovery.

Mark

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>

>

>

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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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>

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Hi angela, Glad things went well.

I love Cedars. I have had wonderful experiences there.

In a message dated 9/11/2010 4:35:01 P.M. Pacific Daylight Time,

agraham2k@... writes:

I had outstanding care at Cedars-Sinai, a CMT center of excellence. I

highly recommend them.

Thanks again,

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  • 6 months later...
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Kay, I've had a half-dozen surgeons over the years and the best one was Dr.

Ruch in Atlanta. I think it was called Peachtree Podiatry Center. He

'specialized' in CMT foot reconstruction surgeries -- he even wrote a manual and

had a bunch of interns from everywhere studying under him. I've never had so

much care! lol They are set up to receive patients from pretty much everywhere,

too. He fused both of my ankles...I guess it was maybe 12 years ago. So I hope

he's still there. He was wonderful.

Good luck!

Shayla

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> I may have to have arch reconstruction (tendon transfer to rebalance foot)

> and/or Talo-Navicular Fusion surgery.

> I am in the information gathering phase right now and would appreciate any

> information or experience anyone may have had with or about these surgeries.

> I also would appreciate any information on surgeons who are experienced with

> these surgeries and with CMT especially.

> Thanks in advance for your help and comments.

> Kay

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>

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