Appointment with Neurosurgeon

[Guest guest]

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]

Wow, sounds like a huge step, going on Morphine. Have you exhauseted all other

avenvues? Have you heard of LDN?

GG

PS I saw a Neurologist for a couple of years and I was just taking more and more

pain killers, I had some devastating news from work and saw my good Dr, Very

knowledgable on my medical condition. And he was like what are you going to do,

rest of your life. I was on Fentanyl and was sleeeping poorly and just kept

getting worse. I would sleep on my side and wake every hour with horrible pain

in my shoulder.

So glad I went off that drug and barely do any pain killers now!

>

> 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,

May your surgery go well and your pain diminish. Keeping you in my prayers.

Peace, Love and Harmony,

Bev

> >

> > 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'm currently on fentanyl, which is 50-100 times more potent than morphine.

I've been on oral morphine before, to me, it's not really a big deal. Morphine

I'd on of the weakest (only codeine is weaker) opioids on a mg per mg basis. If

I have to go on methadone, THAT would be a big step. (note: methadone affects

kappa opioid receptors, in addition to mu opioid receptors, like all the other

opioids)

-Steve M in PA, age 21

---------

Wow, sounds like a huge step, going on Morphine. Have you exhauseted all other

avenvues? Have you heard of LDN?

GG

[Guest guest]

Thank you

-Steve M in PA

------original message------

Steve,

May your surgery go well and your pain diminish. Keeping you in my prayers.

Peace, Love and Harmony,

Bev

[Guest guest]

I use fentanyl patches too Steve i think they help with the pain

Re: Appointment with Neurosurgeon

I'm currently on fentanyl, which is 50-100 times more potent than morphine.

I've been on oral morphine before, to me, it's not really a big deal. Morphine

I'd on of the weakest (only codeine is weaker) opioids on a mg per mg basis. If

I have to go on methadone, THAT would be a big step. (note: methadone affects

kappa opioid receptors, in addition to mu opioid receptors, like all the other

opioids)

-Steve M in PA, age 21