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That sounds very reasonable and proactive!! I hope his curvature does not

progress, but if it does, it sounds like you're ready to treat it w/casting!

Good luck and let us know how it goes with his f/u in 2 months (I surely think

that being x-rayed again in 2mos as opposed to 3 mos is the way to go in your

situation).

and Evan

Mohr <lisammohr@...> wrote:

Thank you to all of you who recommended that we go see Dr. kson in

Denver. He is wonderful and very informative. He explained everything

very clearly. We also met with a Dr. Lu before we met with kson. He

also seems very educated. To remind you of my son Connor's history - he

is 26 months old. A year ago we noticed a curve and it was at 19

degrees. We had cord detethering in September. As of January his curve

was at a 24. Dr. kson said it was relatively the same because of the

5 degrees of error. So now we were trying to decide - brace, cast or

wait some more. Dr. kson was confindent that we should wait and

that is what he would do if it was his son. We only are waiting 2 months

since his last x-ray was in January, we will then take new ones and

make another decision. His RVAD remains under 20 so he is still

wondering if it could resolve. We made it very clear to him that when

and if we need to treat it - then we are on board for the casting and

definitely are not interested in bracing him to hold the curve. Thanks

for the info and hooking me up with this doc. We are going to

continue to see him.

and Connor

---------------------------------

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,

I'm glad you liked Dr. kson and that he was able to reassure you a little

more. I think you have made a good decision to wait. Normally I would NEVER

wait, but his numbers are very low and the RVAD is under 20. Two months will

come fast, and you will be able to re-evaluate quickly at that time. Please keep

us all posted. Thinks sound great.

/Cole

Mohr <lisammohr@...> wrote:

Thank you to all of you who recommended that we go see Dr. kson in

Denver. He is wonderful and very informative. He explained everything

very clearly. We also met with a Dr. Lu before we met with kson. He

also seems very educated. To remind you of my son Connor's history - he

is 26 months old. A year ago we noticed a curve and it was at 19

degrees. We had cord detethering in September. As of January his curve

was at a 24. Dr. kson said it was relatively the same because of the

5 degrees of error. So now we were trying to decide - brace, cast or

wait some more. Dr. kson was confindent that we should wait and

that is what he would do if it was his son. We only are waiting 2 months

since his last x-ray was in January, we will then take new ones and

make another decision. His RVAD remains under 20 so he is still

wondering if it could resolve. We made it very clear to him that when

and if we need to treat it - then we are on board for the casting and

definitely are not interested in bracing him to hold the curve. Thanks

for the info and hooking me up with this doc. We are going to

continue to see him.

and Connor

---------------------------------

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  • 1 year later...

Our meeting was with a thoracic surgeon who does *all* the myotomies at

this hospital - so he has experience. He does open myotomies

thoracoscopically.

He said we had two options with him: open myotomy or lower

oesophagectomy.

All the reading I've done is related to laparoscopic Heller-dor

operation.

So this thoracic surgeon is going to refer us to an abdominal surgeon in

another city for a second opinion.

This will take a few weeks.

Thoracic surgeon says he will put us in touch with a person who has had

both ops (we are assuming he will choose people who've had successful

outcomes!) which may be helpful.

I've obviously got more reading to do because I've hardly come across

any thoracoscopic open myotomy research articles - probably because I've

assumed the op would be laparoscopic.

He says there is no need for a fundoplication or anti-reflux procedure

when the surgery is entered via the thoracic route.

This is from his own research:

http://ejcts.ctsnetjournals.org/cgi/content/abstract/34/2/423

<http://ejcts.ctsnetjournals.org/cgi/content/abstract/34/2/423>

This is from a separate article:

" Although greater experience is required, the preliminary results of

this study suggest that robot-assisted thoracoscopic Heller Myotomy

without an antireflux procedure may represent an excellent alternative

to laparoscopic myotomy with an antireflux procedure. "

http://meeting.chestjournal.org/cgi/content/abstract/132/4/660

<http://meeting.chestjournal.org/cgi/content/abstract/132/4/660>

Any ideas, please?

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Good Luck on your 2nd opinion.

________________________________

From: melanie32uk <melanie32uk@...>

achalasia

Sent: Tuesday, February 10, 2009 4:30:48 PM

Subject: Re: 2nd opinion

Hi ,

The thoracic surgeon is , Royal Infirmary, Edinburgh.

The 2nd opinion surgeon will be in Glasgow which is about 45min - 1

hour drive depending on which part of Glasgow. We don't know who or

where exactly the 2nd opinion is yet.

Just waiting on an appointment letter.....

<christine.hulmes@ ...> wrote:

>

> Hi

> Who is your surgeon and where does she/he propose to do the surgery?

Is it far from where you live? Good Luck on your 2nd opinion. Keep us

all informed.

>

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