Re: Appointment with Neurosurgeon

[Guest guest]

steve...wow.i am so sorry about the tumor. may i ask...how long have you had

CFS? i assume it is not operable?

sue

From: Matrese <pumpstersteve@...>

Subject: Appointment with Neurosurgeon

" pumpsters " <pumpsters >,

" chronic_pain " <chronic_pain >,

" " < >,

" Fibromyalgia_Support_Group "

<Fibromyalgia_Support_Group >, " Fibromyalgia-CFS "

<Fibromyalgia-CFS >, " MyPainBaclofenPumpPlace "

<MyPainBaclofenPumpPlace >, " "

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<cfs_research >, " RSD-CRPSofAmerica "

<RSD-CRPSofAmerica >

Received: Friday, June 10, 2011, 6:44 AM

 

As some of you may know, I have been seeing a neurosurgeon for a little over two

years now to " keep an eye on " the intrinsic pontine (in the pons of the

brainstem) glioma (primary brain tumor) the has been slowly growing and

torturing me. He also happens to be a pump doctor. I have asked him, as well as

my pain management doctor, about a pump SEVERAL times. They usually tell me that

it doesn't work that well for diffuse pain (best for localized pain) & refuse to

discuss it any further and/or they want to save it for later.

Today, a miracle occurred. I convinced my neurosurgeon to do a pump trial! He

insists on using morphine, which I have had reactions to in the past, but if I

don't react well, he is willing to try other medication. He is also not willing

to order a myPTM (personal therapy manager/bolus machine) until after I finish

the initial dose titration, to make sure I will need it, even though I am 95-98%

sure that I will.

When I asked him about my current meds and the trial, he said that I do not have

to stop any of then (he only makes patients stop blood thinners). He asks that

patients lower opioid doses as much as they can to make sure they can huge

whether or not the pump is helping.

I already know to ask for a surgical binder to help reduce swelling. If ANYONE

has any other advice, I'd GREATLY appreciate it. Thanks.

My surgery is schedule for Friday, June 24, 2011.

-Steve M. in PA, age 21

[Guest guest]

Steve-

I'm so sorry....ironically, saw part of this video today and although I don't

understand your medical situation, maybe this information could be beneficial. I

heard of this doctor before when I was researching for my husband's cancer. My

very best to you....

http://articles.mercola.com/sites/articles/archive/2011/06/11/burzynski-the-movi\

e.aspx

Joy

>

> As some of you may know, I have been seeing a neurosurgeon for a little over

two years now to " keep an eye on " the intrinsic pontine (in the pons of the

brainstem) glioma (primary brain tumor) the has been slowly growing and

torturing me. He also happens to be a pump doctor. I have asked him, as well as

my pain management doctor, about a pump SEVERAL times. They usually tell me that

it doesn't work that well for diffuse pain (best for localized pain) & refuse to

discuss it any further and/or they want to save it for later.

>

> Today, a miracle occurred. I convinced my neurosurgeon to do a pump trial! He

insists on using morphine, which I have had reactions to in the past, but if I

don't react well, he is willing to try other medication. He is also not willing

to order a myPTM (personal therapy manager/bolus machine) until after I finish

the initial dose titration, to make sure I will need it, even though I am 95-98%

sure that I will.

> When I asked him about my current meds and the trial, he said that I do not

have to stop any of then (he only makes patients stop blood thinners). He asks

that patients lower opioid doses as much as they can to make sure they can huge

whether or not the pump is helping.

>

> I already know to ask for a surgical binder to help reduce swelling. If ANYONE

has any other advice, I'd GREATLY appreciate it. Thanks.

>

> My surgery is schedule for Friday, June 24, 2011.

>

> -Steve M. in PA, age 21

>

[Guest guest]

I have had semi-major symptoms (from CFS/fibro/RSD) since I was in 9th or 10th

grade (2005). My symptoms have been getting exponentially worse over the past

2-3, maybe 3 1/2 years.

Thanks, but the brain tumor is one of those things that I've learned to live

with. The worst part is the crippling headaches, but they have been, for the

most part, under control lately. Plus without the cancer, my insurance wouldn't

pay for the Actiq that allows me to survive each day. So, in its own crazy way,

the tumor is a bit of a blessing (with one heck of a disguise).

-Steve M in PA, age 21

----------

steve...wow.i am so sorry about the tumor. may i ask...how long have you had

CFS? i assume it is not operable?

sue

[Guest guest]

steve..may i ask if you have been tested for xmrv?

 

sue

From: Matrese <pumpstersteve@...>

Subject: Re: Appointment with Neurosurgeon

" " < >

Received: Monday, June 13, 2011, 12:37 AM

 

I have had semi-major symptoms (from CFS/fibro/RSD) since I was in 9th or 10th

grade (2005). My symptoms have been getting exponentially worse over the past

2-3, maybe 3 1/2 years.

Thanks, but the brain tumor is one of those things that I've learned to live

with. The worst part is the crippling headaches, but they have been, for the

most part, under control lately. Plus without the cancer, my insurance wouldn't

pay for the Actiq that allows me to survive each day. So, in its own crazy way,

the tumor is a bit of a blessing (with one heck of a disguise).

-Steve M in PA, age 21

----------

steve...wow.i am so sorry about the tumor. may i ask...how long have you had

CFS? i assume it is not operable?

sue

[Guest guest]

I have not been tested for XMRV, my insurance only allows me to goto Quest

Diagnostics and I cannot find a test on their test menu for it.

Is there a viral equivalent to a bacterial blood culture? Basically, is there a

test to look for a virus (and/or retrovirus) other than testing for a specific

virus?

Also, are there any indirect tests to look for viral infection(s)?

Thanks in advance,

Steve M in PA, age 21

------

steve..may i ask if you have been tested for xmrv?

sue

[Guest guest]

You can be tested for various herpes viruses, measles, CMV, HHV6A,

etc. I'm not sure what the actual test codes. But my docs have

ordered these virus tests thru Labcorp & Quest, and it basically

measures antibodies which really only show if you've been exposed

and/or have a current or past infection. Docs don't really seem to

treat these tests as very meaningful.

Are you doing anything like colloidal silver (broad spectrum natural

anti-viral, anti-biotic...?

Kendra

On Tue, Jun 14, 2011 at 7:21 PM, Matrese

<pumpstersteve@...> wrote:

> I have not been tested for XMRV, my insurance only allows me to goto Quest

Diagnostics and I cannot find a test on their test menu for it.

>

> Is there a viral equivalent to a bacterial blood culture? Basically, is there

a test to look for a virus (and/or retrovirus) other than testing for a specific

virus?

> Also, are there any indirect tests to look for viral infection(s)?

>

> Thanks in advance,

>

> Steve M in PA, age 21

>

> ------

> steve..may i ask if you have been tested for xmrv?

>

> sue