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) and 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 my PTM (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 M. in PA, age 21

Most doctors do not like to implant a pump in someone so young. How did you

convince your doctor to do it? I am 42.

[Guest guest]

Matrese wrote:

> 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.

> 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.

> 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.

,

I would get a second opinion, my husband has a colloidal brain tumor as you call

them but they are known as masses most of the time. His doubled in size one year

and I searched everywhere I could as he refused surgery although it was

recommended in the articles I read.

I have it arranged if Bob my husband has symptoms, I call the ER, they order Air

evac, and we send him to San where a team is ready to remove it.

He can drop over dead any time with the bran tumor and it blocks cerebral flow.

It is a colloidal brain cyst that grew from a 3 mm

to 11 mm and he wants to wait.

The brain specialist has done many of these surgeries so I am encouraged about

his background.

My niece had her cranial surgery in California with a gamma knife

and stereotactial brain surgery. Her doctor was the only one to practice it.

She had acoustic neuromas which had entwined around her carotid artery on one

side and the jugular on the other side. The doctor said that he had never had a

patient that had them on both side.

It has been three years now and she lost her hearing and job and she sometimes

is slow to think but she has done great. The bad thing about this is that the

syndrome is easily diagnosed as on an ear exam it shows up as a red dot and if

she had this done years ago it would not have grown around her arteries

She had epilepsy also so some of the symptoms were confused. These intracranial

masses were large and they are said to be hereditary and her aunt had one when

she was young and it was small and she had it removed with not problem.

I mention these stories as I would make sure you are researching the most recent

clinical trials, get second and third opinions to make sure you are making the

best decision.

I was a cancer therapist and a year ago I called the Cancer Centers of America

to ask about current therapies, a representative e mailed me on IM right then

and I found this to be one of the most informative sites with current therapy

and support, I would go online and speak to them.

, I hope you the best of luck and please let us know how you are doing.

As far as swelling in surgeries, I remember when I had all my wisdom teeth

removed as they were impacted, I had to be put to sleep in the hospital and had

extensive swelling,

My Sisters Dentist had her start taking Vitamin C and cut out all sweets before

the surgery and eat hi protein low fat died. She had little swelling and I could

not believe the results but will do this next time.

Bennie

[Guest guest]

I have had more " second opinions " than I can, or care to, count.

I have two doctors monitoring nothing but my brain tumor. I have been

seen in every neurosurgical office that takes my insurance, as well as

one that no longer takes it.

I was also referred to a pediatric neuro-oncologist at s Hopkins (Baltimore,

MD), but I can't go out of state with my current HMO.

My neurosurgeon (gets MRI and sees me every 3 months) and my radiation

oncologist (every 6 months) both want me to see the pediatric neuro-oncologist

in September, when I go on Medicare (I am opting for traditional Medicare (no

Part C or MediGap), so I may get stuck paying for part of it).

My radiation oncologist was trained by the pediatric neuro-oncologist he wants

me to see (in addition to his radiation oncology training), which is nice

because he #1 has some (although limited) neurological oncology training & #2 he

was able to send my MRI disk to him for review.

All of the neurologists, neurosurgeons, radiation oncologist, (medical/regular)

oncologists, and every combination of those fields (such as neuro-oncologists)

at both Hopkins and Wellspan (where my neurologist, neurosurgeon, radiation

oncologist, endocrinologist, and

rheumatologist work) get together every two weeks to review

interesting and/or difficult cases and my films have been shown at

both. My Wellspan radiation oncologist was able to get them shown at

Hopkins even though I can't go there yet.

The tumor is still pretty slow growing, but kind of sporadic (goes 6-9

months without growth and then grows a couple [1-3] millimeters in 3

months)

Steve M in PA, age 21

> Bennie wrote:

> I would get a second opinion, my husband has a colloidal brain tumor

as you call them but they are known as masses most of the time. His

doubled in size one year and I searched everywhere I could as he

refused surgery although it was recommended in the articles I read.