Anthony,

No I did not know that. it's something we are considering but the 
operations are heavy duty. The muscle lengthening involves a lot of 
cutting and I think later scar tissue can be a problem. Anyhow I am 
not the final decision maker, I am doing some of the research and so 
are they. I am glad my kids are grown and I don't have to make any 
more medical decisions for anyone. It's a huge responsibility and I 
wonder if Case should be given the different options and asked what 
he thinks even tho he is so young. It is his body.
If they finally decide on the muscle lengthening I am pretty certain 
they will go to Gillette.
You might be getting news about the polygamist encampment they found 
in the Black Hills then. I am very involved in that with my work.

All the best,

Linda

dAt 08:45 PM 3/14/2006, you wrote:
>Linda,
>
>I don't know if you know this or not, but I live in Grand Forks North Dakota
>almost 6 hours away from Gillette, and several people especially children
>under age 18 travel down there for medical care, and are fairly satisfied
>with the services.  I also know a speech-language pathologist I often
>communicate with who works there as a AAC Specialist.
>
>Thanks,
>Anthony
>Visit my website at www.anthonyarnold.net
>
>-----Original Message-----
>From: Cerebral Palsy List [mailto:[log in to unmask]] On Behalf Of
>Linda Walker
>Sent: Tuesday, March 14, 2006 6:41 PM
>To: [log in to unmask]
>Subject: Re: label/hand surgery/pump
>
>Anthony,
>          Of course it's your business if I brought it up on the list.
>I welcome any ideas. We moved to HI  from CA not that long ago and
>his CA PT has definite ideas about where to get surgery done. She
>thinks the Gillette Center in MN is the best because of the extensive
>rehab program after surgery.
>          I found this Dr. Nuzzo on the internet and thought his way
>of doing the surgery without opening up the whole leg sounded better.
>Both my son and I have cheloid (sp?) scarring and I am afraid for the
>scarring. It's called percutaneous muscle lengthening. Then Lynette
>sent an email with parents who had a bad experience with him. We also
>have a contact name of parents who love what he did.
>          I am not sure my grandsons parents have considered baclofen
>pump seriously enough as an alternative to more invasive surgery. I
>know it's surgery but it is reversible. I guess what I am most afraid
>of is doing something irreversible and then having the doctors come
>up with something much  better. He is 7 and 1/2 now.
>
>All the best,
>
>Linda
>
>
>At 01:09 PM 3/14/2006, you wrote:
> >I know that this is none of my business, but why wouldn't they consider
> >having it done in Hawaii, isn't their medical system like ours?
> >
> >Thanks,
> >Anthony
> >Visit my website at www.anthonyarnold.net
> >
> >-----Original Message-----
> >From: Cerebral Palsy List [mailto:[log in to unmask]] On Behalf Of
> >Linda Walker
> >Sent: Tuesday, March 14, 2006 3:22 PM
> >To: [log in to unmask]
> >Subject: Re: label/hand surgery/pump
> >
> >Thank you so much for this information. I don't think his parents are
> >considering having anything done in Hawaii and traveling is no
> >problem because his mother works in travel. She is in the process of
> >getting her insurance changed from an HMO so that she has more
> >flexibility with his care. She also has relatives in Colorado and
> >baclofen seems like a simpler solution than surgery. The pump can be
> >removed if it does not work but surgery can never be undone.
> >
> >At 09:55 AM 3/14/2006, you wrote:
> > >Linda,
> > >
> > >Baclofen itself doesn't negatively impact intellect, although depending
> > >on the degree of spasticity and/or dystonia a person has, and the dosage
> > >of oral Baclofen required to control that spasticity/dystonia, it can
> > >cause lethargy/drowsiness.  That's why Janet and her neurologist decided
> > >to go with the pump, because it makes it possible to introduce the drug
> > >directly into the spinal fluid, where it acts directly, without nearly
> > >as many side effects. =20
> > >
> > >She and her neurologist worked together for over a year and a half
> > >trying to find another medication, combination of medications and/or
> > >physical therapy that would have the desired effect, with no really
> > >satisfactory results, and so she finally decided on the pump after we
> > >found a really good surgeon to place it. =20
> > >
> > >We did a Baclofen test dose with a surgeon who was more or less local,
> > >and he didn't do the right type of test for Janet's symptoms, and so we
> > >got delayed about 4 months getting things done right.  We did Google
> > >Scholar searches for papers written on spastic/dystonic CP, and methods
> > >used to control it, then searched for the authors of the papers.  Most
> > >of the papers were by doctors from the University of Pittsburgh, and the
> > >University of Alabama-Birmingham.  Luckily for us, one of the authors
> > >had recently relocated to Colorado Springs, because they're starting a
> > >Children's Hospital there.  Colorado Springs is only about 200 miles
> > >away, a lot closer than Pittsburgh or Birmingham.  He had done his
> > >residency in Pittsburgh, and a fellowship in pediatric neurosurgery in
> > >Birmingham, and is boarded in both peds neurosurgery and general
> > >neurosurgery.
> > >
> > >Since you're in Hawaii, you might want to contact the Hawaii UCEDD,=20
> > >
> > >Center on Disability Studies=20
> > >University of Hawaii at Manoa=20
> > >College of Education=20
> > >1776 University Avenue, UA 4-6=20
> > >Honolulu, HI 96822=20
> > >Main Phone:  808-956-9199=20
> > >Main Fax:  808-956-7878=20
> > >Main Email:  [log in to unmask]
> > >Website:  http://www.cds.hawaii.edu
> > >
> > >
> > >and specifically:
> > >
> > >Jeffrey Okamoto, MD=20
> > >808-983-8387=20
> > >[log in to unmask] who administers the Fellowship in Developmental and
> > >Behavioral Pediatrics (DeeBeePeds) for the best person in the Islands to
> > >work with.=20
> > >
> > >When St. Johns shut down their lists, CP Parent went to a Yahoo or
> > >Google based list, so you might want to do a search including those as
> > >terms as well.  I stayed subscribed for a little while to CP Parent
> > >(best source I could find) after the transition to get more info on
> > >Baclofen, but traffic seemed to drop off a lot, so it may be gone.
> > >
> > >Kendall=20
> > >
> > >An unreasonable man (but my wife says that's redundant!)
> > >
> > >The reasonable man adapts himself to the world; the unreasonable one
> > >persists in trying to adapt the world to himself. Therefore, all
> > >progress depends on the unreasonable man.
> > >
> > >-George Bernard Shaw 1856-1950
> > >
> > >-----Original Message-----
> > >From: Linda Walker [mailto:[log in to unmask]]=20
> > >Sent: Tuesday, March 14, 2006 11:25 AM
> > >To: [log in to unmask]
> > >Subject: Re: label/hand surgery/pump
> > >
> > >Lynette,
> > >
> > >I have looked for the cp parents list recently and could not find it=20
> > >active. Is their a url for it that you know of?
> > >I am wondering about oral baclofen for Case. We've never tried it=20
> > >because he is so bright and we've heard it impacts intellect. I was=20
> > >very sorry to read about the Nuzzo parent with the bad experience=20
> > >because I still think in surgery less is more. Do you know anyone=20
> > >else who has had or is doing the percutaneous lengthening? Also are=20
> > >you considering Nuzzo for your sons surgery because his credentials=20
> > >seem really good to me. Top of his class, top medical schools, and all
> > >that.
> > >Anyone else want to speak about surgery and their experiences please
> > >help us.
> > >These are the hardest decisions we all have to make because mistakes=20
> > >can worsen not better the situation.
> > >
> > >All the best,
> > >
> > >Linda
> > >
> > >At 03:23 AM 3/14/2006, you wrote:
> >
> >
> >
> > > >Wow...sorry I offended so many of you on this list!  I would never with
> > >his
> > > >disability before him, he is NOT a cerebral palsied child..yuck.
> > >You're
> > > >right, on parents list we state the disablity to share infomation.  The
> > >fact
> > > >that my son has survied a miracle gives other parents who may have a
> > >child
> > > >whom has nearly drowned..hope.
> > > >
> > > >Hand sugery; I think thumbs and wrist flexor lengthening.  Cody uses
> > >his
> > > >feet for everything, if he could even use one finger he would be
> > >elated.  I
> > > >don't know of anyone who has had the surgery.
> > > >
> > > >Pump; We went through withdrawals as the cath came out.  Head itching,
> > >head
> > > >aches, increased spasticty.  We still put it back in as his shoulders
> > >are
> > > >dislocating daily from spasticity. I would go to the guy in Colorado,
> > >it is
> > > >not an easy surgery.
> > > >
> > > >Sorry I offended anyone....
> > > >
> > > >Lynette, Cody's mom
> > > >
> > > >_________________________________________________________________
> > > >Don't just search. Find. Check out the new MSN Search!
> > > >http://search.msn.click-url.com/go/onm00200636ave/direct/01/