The people I know who were health care providers in Hawaii were both Air Force, so that may have colored their perceptions.
Kendall
________________________________
From: ken barber [mailto:[log in to unmask]]
Sent: Tue 3/14/2006 7:58 PM
To: [log in to unmask]
Subject: Re: label/hand surgery/pump
i am happy you are looking off the islands. i have a
nurse friend that gave me a heads up that in hiwaii
the medicle treatment is not the best even on ouhu
which is the best of the islands in that sense.
--- Linda Walker <[log in to unmask]> wrote:
> 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
=== message truncated ===
__________________________________________________
Do You Yahoo!?
Tired of spam? Yahoo! Mail has the best spam protection around
http://mail.yahoo.com
|
