RE: Gamma Knife Surgery

February 23, 2005

Dolores---Hello! All prayers welcome. Yes, we were at Research Medical

Center in KC and yes, I had a lot of after effects from radiation,

medication, etc. But my body is not resilient after 40 years of being sick,

so we knew going in that I would not react as a healthier person would.

Because I am on tube feeding, we did not want to stay in a motel. Too

complicated. The ice packs sound very familiar, still using them and cold

wet washcloths. Helps the throbbing. I have a meningioma in the right

frontal lobe over my right ear. It is probably benign, but is growing,

therefore not benevolent! The usual treatment would be craniotomy, but none

of my doctors thought that was a reasonable option, given my condition (I

have two co-existing mitochondrial disorders) so we opted for GK to halt

growth. Yes, we do frequent MRIs to monitor. I'm in Lawrence, but have been

homebound for many years. Welcome to the group.

B

_____

From: Dolores Y

Sent: Wednesday, February 23, 2005 5:15 PM

To:

Subject: Gamma Knife Surgery

Hi Barbars, I am very new at this but Gamma Knife I do know about as

I have had one. I am in hopes that the results were promising. Did

you have any after effects? Fortunately my husband was still living

and well as I don't know waht I would have done. I had to go to

Kansas City to Research Medical Center for mine and it had to be

done as out-patient only, but we had to spend the night in Kansas

City. The closest motel we could find was off of the interstate and

it wasn;t too long after we checked in that my eyes started swelling

shut. My husband was panicy, but he managed somehow to improvise

and make ice packs (he called the hospital and they said to keep

icepacks on my eyes all night long and bring me back early the next

morning) he went to the restaurant/bar and ordered something for us

to eat and talked them out of some sort of plastic zipper type bags

and got a large bucket of ice. I spent a cold (from the ice) and

sleepless night, as did my husband. My Gamma knife was due to me

having two brain tumors, once on the right frontal lobe and the

other at the base of my skull on the left side. They had two

entirely different names and the Gamma Knife was aupposed to kill

the DNA in the tumors. I have to go in for freqent MRI's to check

them out. I was mis-diagnoses in 2001 with Parkinsons and just

recently have been rediagnosed with sone type of Mytochonfrial

Dysfunction. I am now off of all the Parkinson's meds and doing

better since I a not longer takig meds that I do not need. I hope

you are doing well and when you have time, lease let me know how you

are getting along. Until that time I will keep you in my prayers

and if it OK with you I will add you to my prayer list when I attend

my prayer group's meeting on Friday. Until that time God Bless!

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February 23, 2005

One of my tumors also is a meningoma but it isn't my problem child. The one on

the right frontal lobe has started, " sending off signals " and my neurosurgeon

told my Grandson (he is a surgical technician and has my DPOA for healthcare)

that it shouldn't be doing that so I go in for another MRI next week. They are

now in the process of trying to nail down exactly what kind of Mytochondrial

condition I have. I guess that whatever it is that it must have some of the

same symptons that Parkinsons has, as for some reason my previous neurologist

had insisted over my my ????? that I did have Parkinsons. I have ended up in

ER two times just recently (once by ambulance) due to an excessive amount of

Parkinson's meds as my blood levels were WAY too high. I then found out that he

hadn't been checking my blood levels regularly and I had two very violent

reactions. I am doing better right now but I am facing one surgery and possibly

two, plus they are trying to figure out when they can do a

muscle biopsy on me. All this is frightening to me as I am not sure about all

the in (let alone the outs) of a Mytochiondrial disease. I am a 69 year old

widow and I just recently lost my 48 year old son (to what I am now wondering if

it could have been a Mytochondrial disease of some kind, as his kidneys

completely shut down and he was losing his sight. He got so sick so suddenly

and then he was gone. My cousin had been treated for Parkinsons for years and

then her neurologist retired and the new one told her and her husband that she

did not now and never had ever had Parkinsons, he took her off all the

Parkinsons meds but her health was in such a deterioated condition that she

passed away shortly after that. I guess (from what I have read) that

Mytochondrial problems are a genetic disease caused from some kind of a DNA

problem. I am in hopes I can get together with my doctors and try to sort this

all out. I didn't learn about this until December, just before I went to

Washington State with my cousin and her husband, they . They were concerned

about me being alone too much during the holidays and were visiting her brother

in Missouri and then came to see me with the news that they had gotten me a

ticket to fly home with them. My Grandson and my son both have commitments

during the holidays with their in-laws during the holidays and I would have been

alone a lot of the time as I am very short on relatives. I now have you on my

prayer list for Friday and until then I will be keeping you in my prayers! If

you have ideas where I can retrieve any pertinent information on Mytochrondrial

Diseases I would appreciate being pointed in that direction. God Bless-----

Barbara Seaman wheatchild@...> wrote: