Chartrand I'm back

[Guest guest]

Hi ,

I have had some appointments with Dr. Oldring at the most beautiful hospital I

have ever seen, The MacKenzie Centre.I found him to be very informative. He may

have told you that he and a few other specialists trained down in LA under Dr.

Brackmann at HEI . Is this your first removal? Did he not tell you of the ABI on

either surgery and not use it if you didn't want too or gradually get used to it

or even use it all the time. The benefit I saw to this is you must go 3 wks

after surgery, 4or 5 times more the 1st year and then annually every year after.

The beauty of it is then Brackmann and Hitzelberger remove it and you get

appointments with them once a year. Also you are ready to hear somewhat when you

go deaf. Also, in Alberta they pay your travel and sustenance for surgery and

the follow-ups for 5 years.The Friesen family (they live 5 hrs north of you)

told me . Plus they arrange your flight for you. Did Dr Oldring mention the

Gamma Ray in Seattle to you. Oh.... it was probably too large for that option.

Some of the Nf2 patients have done that.I'm sorry alot of good that does now. I

was referred by Dr. Oldring to Dr. Brackmann for surgery and the ABI. I have a

Gioma in the back of my head in the Brainstem. This has had 4 6 hr. surgeries,

radiation for cancer,and is now inoperable.Then a Glioma joined it at the top in

the back. I luckily had MRI scans 3 months apart and this was caught very early

and disappeared after 18 months of extensive Chemo. I tell you this because I

got scared filling out the forms in LA ( you know how you hear of people having

lost their homes, paying $100 for a pill, although I brought everything I would

need, also I couldn't see it working properly on my brainstem with all the

activity it had and possdibly more if the tumor grew in a dfferent drection and

was operable. The Friesen's no longer go to D. Broad. He is no Hitzelberger.Dr.

Oldring does well they say and we all like him. Gray is a sweetheart and

very supportive. She had a unilateral AN, does not have NF2. Did they use a

shunt. They told me if I had the surgey there I would have one to prevent CFS

leak. I felt uncomfortable with what others in Edmonton told me and went back to

LA for the surgery. It was very difficult they said ,since idiots here radiated

both AN at the time of the Glioma . 3 probes Ordinary radiation. Now I'm told I

can't have GR anywhere on the head or neck. Anyway, My point is I learned the

hard way you really have to watch them here and help yourself as much as

possible and STILL ALOT OF 'DUMB THINGS GET DONE, ie.4 STAPLES SHORT CLOSING A

SPINAL CORD SURGERY. How are your eye and mouth . In don't know anything

of your personality, Did those things really happen , if so its

horrible.........This must be getting terribly long. We had originally planned

to spend Labour Day in Edmonton but not now. May I ask where you live? Well,

best run now. Good Luck .

Sheryn