Neurosurgeon Today

[Guest guest]

To those of you that I promised to let you know about my appointment,

sorry I didn't post this sooner. It took a while to write and I had to

take a break a little over half of the way through. Sorry it is so

long, a lot happened and I always like to including any relevant

details.

If you don't see me on the boards much in the next few days, it's

because I;m exhausted and recovering from today (no need to worry).

---------------

So, I had my appointment with my neurosurgeon today, I did NOT go

well. Before you start reading this (or decide not to because it is

depressing) I want to promise that there is a glimmer of hope in the

pile of crap that was in this day.

I'm so frustrated. No one is willing to help me and I'm just getting

worse (Systolic [top number] BP  peaks as high as 180-200 during an

attack). My PCP (JNP) refuses to return phone calls or schedule an

appointment.

My neurosurgeon (AGS) refuses to manage a pain pump for me because he

" doesn't do that anymore " . H***, he refused to even write a letter to

my PCP stating that the pain is most likely caused by the tumor

because he isn't " 100% sure it is the cause " THAT'S WHAT MOST LIKELY

MEANS!!! He wouldn't even put it writing that the pain COULD be caused

by the tumor. Occam's Razor, " entia non sunt multiplicanda praeter

necessitatem (entities must not be multiplied beyond necessity) " or

" all other things being equal, a simpler explanation is better than a

more complex one. " Which is simpler:

KNOWN. Equal, and acknowledged by my doctors:

- I have a brain tumor exhibiting mass effect on (pressing on) my brainstem

- it is already causing breathing problems and fine motor " twitches "

- the glioma has caused severe nausea for several years

- I experience chronic, daily headaches (4/10 pain scale) and severe

headaches (9-10/10 on pain scale) that are refractory to all standard

(and non-standard) treatments and have been diagnosed as " Brain Tumor

Headaches "

- the tumor is pressing on the nerves that transmit pain signals from

the body to the brainstem

- the pain that I experience is nerve pain (diagnosed by my

description of the pain and confirmed by the fact that my pain only

responds to large doses of opioids).

- Peripheral nerve pain is typically localized, but is sometimes

regional and rarely body-wide

- Central nerve pain (originates in the CNS) typically affects the

entire body, but it occasionally regional and rarely localized

- There is nothing other than the glioma that is abnormal and could

cause this type of pain (only other abnormality that ever causes pain

is an incredibly mild case of scoliosis, but it is not worsening)

- The pain gets worse as the tumor grows

- Gliomas do not ALWAYS cause pain, but they can

1) The nerved that are being pressed on are causing my pain

2) The nerve that are being pressed on are not causing my pain, a

secondary, undiagnosed and invisible condition is causing my pain and

that the tumor growth corresponding to increase in pain is purely

coincidental. Essentially, the tumor is affecting all of the things

mentioned above, but could not possibly be causing pain and there is

something invisible in my brain that is causing the pain.

Which seems simple and therefor more probable? How can anyone refuse

to acknowledge that I COULD be experiencing pain caused by the mass

effect of the tumor?

The purpose of the appointment with my neurosurgeon was to discuss the

pain pump, but from the moment he walked in it was beyond clear that

had ABSOLUTELY NO interest in doing so. He even tried to convince me

that the pump might not work for my pain because it isn't localized.

Then why did the trial work SO well (80% reduction in pain) and why

did he recommend that I go ahead and get the pain pump after the

trial? Why did he even order the trial? Was he just hoping/assuming

that it wouldn't work and that it would be a great way to get me to

stop bothering him about it? When I called him out on it he did shut

up about it, but it was still insulting, rude and wrong.

Everyone (execpt my PCP) agrees:

- I need the meds

- I need AT LEAST my current dose

- Someone else should prescribe them (most think it should be PCP)

My PCP believes, or at least is claiming:

- I MAY need the meds

- My current dose is too high

- Someone else should prescribe then

- He doesn't know what he's treating with them

I don't want my daughter to have to grow up without me, but one of

these flares will eventually kill me. Even with the oral (and

transdermal) meds, I'm not really there. I can come out of the room or

a few hours (with Actiq), but I'm bedridden for several days

afterwards. The only way for any sense of normalcy is for them to

implant a damn pump, but either NO ONE can seem to get that through

their thick skulls or no one cares.

AGS kept talking about treatment for the glioma, which will make me

feel a lot worse before I feel any better. I'm actually considering

letting them biopsy this thing because it might kill me (roughly 10%

chance of a major complication; death, paralysis, coma, stopping

signals to heart (not stopping heart and restarting it, just stopping

it), stopping breathing). Surgical removal of the tumor has a much

higher chance of killing me. My wife and I both made it abundantly

clear that without pain treatment, I'm not treating the glioma

(current pain not under control plus additional pain and other

miserable side effects of chemotherapy and/or Radiation Therapy; I

also couldn't drag myself to radiation therapy five days a week for

several weeks) and no one cares or even listens, they just keep

talking about treatment.

While we were down there and I was checking out and waiting for them

to schedule my MR Spectroscopy (specialized MRI), my wife decided to

pay a visit to the interventional pain management office associated

with the same medical group (W***span) as my neurosurgeon [AGS] ( & my

neurologist, rheumatologist, endocrinologist, radiation oncologist,

and soon medical oncologist). They are in the same building, but with

a different entrance. They had previously stated that they would not

schedule me for a pump consultation because I am on too many

prescriptions (more likely they didn't like specific ones or multiple

opioids). We told them several times that I was willing to discontinue

any/all of them, but I guess that wasn't good enough because no one

ever returned another call. Now, they're saying that they don't take

patients who live so far away (30 miles between my front door and the

hospital in York (that office is a few miles closer), hospital in

Gettysburg is a little closer). I assume part of the reasoning is that

in an emergency (pump failure) it would take longer to get to the

office or ER/hospital). They claim that one of the reasons is that the

distance could become a problem when I get sicker...

1) the pump DRASTICALLY increases mobility (at least for me) 2) a pump

last MAX 7 years, if I am seriously declining, we can always

re-evaluate then. How fast are they thinking I'll decline?

3) I don't drive, so for me, a 5 mile trip is no different than a 50

mile trip and never would be (I do have highly reliable

transportation)

4) I already checked with every office in an over 100 miles radius

5) someone could pick me up and put me in the car

6) Pentec does in home refills

They agreed to call her after reviewing my file (after she shot down

all of their reasons), but they made it clear not to get our hopes up.

She also told them that I haven't been able to take a lot of my meds

(more on my chart than I currently take) and that I will gladly

discontinue any/all meds that they want me to of it gets me the pump.

Who wants to bet that they'll still claim too many prescriptions (or

too many medical conditions)?

I wouldn't be surprised if my insurance plays a roll in some of the

offices refusing to take me. My primary is original/traditional

Medicare (Parts A & and my secondary is PA ACCESS (Traditional

Medicaid). Since I am dual-eligible, I can see any doctor who accepts

Medicare OR Medicaid and the provider always gets the full Medicare

allowable amount (no dealing with lower Medicaid reimbursement,

although few understand). Medicaid acts like a MediGap plan, not

traditional secondary insurance. I've had some offices tell me that,

among other reasons, they couldn't take me because of the Medicaid. I

corrected them and a few understood, but most didn't care enough to

listen.

Back to my " story " ...

The W***span  pain management office told my wife that there actually

are some physicians assistants (PA-C) who still fill pumps AT THE

NEUROSURGERY OFFICE. After she was done in the Interventional Pain

Management office, she went to talk to Neurosurgery again, but

everyone was busy. We're waiting on quite a few phone calls

(Neurosurgeon, Neurosurgical PA, & Pain Management, to name a few).

When my wife first started this conversation with the lady who decides

who gets to decide who is worthy of acceptance into the office

(official title is 'Clinical Coordinator, not an MD, PA or RN), my

wife mentioned that there is a company (Pentec) that does in home pump

refills and we just need someone to order the meds. She also made it

abundantly clear that this was only an OPTION and that we'd gladly

have the pump filled there or the hospital (or anywhere else they

designate), but this lady kept telling her that they don't generally

like to order the meds or manage the pump if they aren't doing to

refills themselves (I'm guessing that the profit on refills is better

than the office visits), she really got stuck on that after she

(clinical coordinator) brought up the other office having PAs who

refill pumps, like we'd care who does the actual refill.

When all was said, done, said again, and said yet again, the Clinical

Coordinator agreed to take my case to the doctors to decide if they

want to take my case. We SHOULD get a call back tomorrow, but you

never know (any prayers, dishes, positive vibes, etc that they accept

me would be greatly appreciated). At least there is a glimmer (albeit

a small one) of hope. I'm still really concerned about breakthrough

passion relief (still no Actiq and 90-120mg oxycodone does NOTHING

without food, can't eat because of pain and takes FOREVER (2.5hours)

to kick in, even with food, but there is absolutely nothing left for

me to do except keep try to get an appointment with my PCP and keep

trying to get through to an actual person at there local community

clinic

I think that the most frustrating part is that everyone keeps changing

their story [PCP is worst] and the lies don't help much either.

I almost forgot! When the doctor walked into the exam room, my wife

" asked " AGS not to lie to us, treat us like idiots (he knows that I an

well educated as far as anything/everything medical), or tell us to

talk to someone that we had already talked to (and been told no). He

said that he agreed (he didn't use the word promise, but for all

intents & purposes, he made a promise). As I already mentioned, he

lied to me and tried to fool me and he several times suggested that we

talk to JNP (PCP) about oral meds.

I know that no one will admit it, but I know that my age is a major

factor on the problems that I am encountering.

Sorry for b****ing so much, I'm just at the end of my rope and SO SICK

of doctors playing chicken with my life (I only made out this far

because a few days after 1200mcg lozenges ran out, I found a few (3)

of the old 600mcg lozenges and they (along with an oral solution of

oxycodone and hydrocodone) helped with a few (4-5) incredibly severe

episodes of breakthrough pain, but they're gone now; and so are the

Norco). Where are the doctors for the sick patients?

I'll let everyone know as soon as I hear anything (assuming anyone

calls us back, which is actually a rather large assumption) about what

Interventional Pain Management, the PAs at Neurosurgery, Neurology,

and my neurosurgeon** have to say.

I just realized that I never explained why we need to talk to AGS

(neurosurgeon) even though we just saw him at from 2:00 to 2:30 today.

AGS is asking the only doctor in the practice that he knows still does

anything with pumps other than implant them if he would consider

dosing the pump for me ( " Hail " attempt), but for some reason he

isn't calling us after he talks to him, we were told to call on FRIDAY

to see if they talked yet. I have NO IDEA why we have to wait until

Friday. We asked if there was anyway he could talk to any of the other

neurosurgeons today while we waited (we made it clear that we were

willing to wait hours if needed), but he was running late (one of the

few times that we were early) and the guy that he really wants to talk

to was in surgery today. The last time he promised to talk to a couple

of doctors (Hopkins, W***span Interventional PM, & a few others) about

managing a pump for me, he never got back to me and never noted my

file. We did try calling after a almost two weeks, but no one called

us back,

I was having trouble getting a straight answer about whether or not to

biopsy, so at one point, I asked AGS if he would biopsy the brainstem

glioma if it was in his brain, then I corrected myself and asked him

if he would have someone biopsy the glioma if it was in his brain (all

three of us got a little chuckle out of my original wording). Of

course, I never got a real answer. He said something along the lines

of, " I'd have to think about it " . I think he just didn't want to

answer the question, but it definitely threw him.

Steve M in PA, age 22

Married with 4 year old daughter

Duragesic 300mcg/hr (q48hr)- Out on 4/4/12

Methadone 45mg/day- OUT since Jan '12

Actiq-1200 (4/day)- OUT since Jan '12

OxyIR 30mg (11/day)- Was out 1/18-2/27/12; Out again on 3/26/12

Grade II-III DIPG (Diffuse Intrinsic Pontine Glioma)

" I know pain. You think you can handle it and one day you can't. And

when that happens, you either find reason to go on, or you don't. "

-House MD