Apology & Update

[Guest guest]

I apologize for not updating everyone sooner, I have been feeling

beyond sh***y lately and haven't had the energy to post a

comprehensive message (I've written a few brief replies to some

posts).

On Wednesday, April 4, I had my 3 month follow up brain MRI with and

without contrast. My neurosurgeon also ordered an MR Spectroscopy. The

tumor continues to grow at the slightly more rapid rate that alarmed

my Radiation Oncologist.

On Thursday, April 5 at 11am, I had an appointment with one of the PAs

at my neurosurgeon's office (my neurosurgeon was supposed to stop in

at the end of the appointment, but he [according to the staff]

mysteriously disappeared (left without warning, or telling anyone why

he was leaving, where he was going, or that he was leaving) just

before my appointment time. Unfortunately, I forgot my MRI disk, but

the appointment was supposed to be a follow-up from my 4/1 ER visit.

The PA-C thought that this was a regular follow-up, not an ER

follow-up. The appointment was a waste of time.

They did get the report from my MRI and gave me a copy. I didn't read it until I

was waiting for my new Oncologist to see me. I discovered that the report did

NOT include the MR Spectroscopy results. Even if I did remember the disk, they

wouldn't have had everything they needed anyway. They had me sign a release form

to have the disk mailed. I was promised that I would get a phone call after they

reviewed the MRI images. They SHOULD have received, loaded, and reviewed the MRI

images by now, but they STILL haven't called me. The PA was baffled as to when I

was not still being prescribed the Actiq since it ACTUALLY helped me. She

promised to make some calls about pain management and a few other things

(promised a call, never heard back).

Since we had plenty of time between my two appointments and the

hospital associated with the MRI center is within a mile or two of the

hospital, I called the imaging department at the hospital and told

them to burn a CD with the images from all of my brain MRIs (I needed

one anyway) and we picked it up on the way from my neurosurgery

appointment. They could only find the last four MRIs (they couldn't

find any of the MRIs from when the facility wasn't a part of the

hospital even though they claim to have transferred all of the DICOM

files (Digital Imaging & COmmunications in Medicine- format used for

saving/storing radiology images in PACS- Picture Archiving &

Communication System) over from the MRI Center's PACS system to the

hospitals PACS system. Apparently, that never happened.

Since there was still plenty of time until we needed to get to my new

Medical Oncology office, we (me, my wife, my daughter, and my wife's

great-aunt [driver]) stopped at & Noble. My daughter played

with the Color Nook Tablets (Angry Birds) for a little while, then she

played with the LEGO set with some kids she met. It was kind of fun,

but by the time we had arrived at the bookstore, my pain was already

flaring. Thank God my daughter was behaving because she was a great

distraction from the pain, but her misbehaving would have killed me (I

think she knows when my wife and I really NEED her to behave. Around

2:20 we left B & N to head over to the Medical Oncologist's office (5

minute car ride).

We arrived at my new Medical Oncologist's office just before 2:30pm

(2:40pm appointment time, wanted me there 15 minutes early for

paperwork, but I had already filled out the intake paperwork, which

they don't usually mail ahead, but I requested it). After I had

checked in, I started looking through the reports and the very sparse

amount of medical records that I managed to get the checkout person at

my Neurosurgeon's office to print (last two appointments I think).

They were supposed to get me all of my records, but apparently two to

three weeks wasn't enough time and they refused to print my records

because they " usually have that done by a third party contractor " and

I apparently have " too many records to print " . Anyway, I was looking

at the records from my last two MRIs and I realized that the report

from my 4/4 MRI did not contain an single mention of MR Spectroscopy.

So, after rereading the report several times to make sure I wasn't

missing it, I called the hospital's imaging department (since the

merger, you can't get through when you call the outpatient MRI center)

and repeatedly explained that my MD originally ordered and scheduled

an MRI with and without contrast (Magnevist brand gadolinium), but on

March 13 called and changed the appointment to an MRI with & without

contrast and MR Spectroscopy (MRS) AND faxed a revised order. I

repeatedly explained that the report that I received did NOT contain

the results of the MRS. I simply wanted to know if they actually

preformed the MRS, but just didn't report it, or if they only

preformed the MRI w/ & w/o contrast. They were so confused and

eventually decided to hang up and call me back (I wasn't happy about

it, but I agreed). I was eventually called back for my appointment and

the medical assistant had me specify my pharmacy, list all of my

doctors, and went over my medication list. While I was waiting for the

doctor to come in, the lady from the hospital's imaging department

called to tell me that even she couldn't get in contact with anyone at

the MRI center. She also couldn't find the updated order, but she had

no clue if the MRS had actually been preformed. Right as I was ending

that call, the doctor came in the room.

The Dr. A (one of the two founding partners at the Oncology office)

was really kind, caring, and honest. He started out the appointment by

asking me why I was there (not the typical why are you here, but more

of a why the heck were you sent here?). He openly admitted that he

knows very little about brain tumors and recommended that I see

someone who specializes in neuro-oncology. HOWEVER, he is not just

pawning me off on to the next oncologist, he will continue following

my case and seeing me.

Unfortunately, there are very few neuro-oncologists. He wanted me to see someone

at J**ns H*****s (Baltimore, MD) or D*k* (North Carolina), but his nurse that

handles referrals apparently knows of one doctor at [Chocolatier] Medical Center

(Hershey, PA), so I am being referred to their cancer center for the time being.

I was initially against the idea because my wife and I have both had HORRIFIC

experiences with MULTIPLE departments (including Orthopedics, Neurosurgery, &

Pain Management) and the nurses are worthless and sadistic. HOWEVER, I have been

assured that their cancer center is different. I'd still NEVER let them admit me

there, but I'm going to give an outpatient appointment a try.

He was disgusted to hear that the one thing that actually helped with my pain

(Actiq) [aside from the 2 days of pain relief from the morphine trial] was

abruptly discontinued and not replaced with anything. Then, he looked over my

surgical history and discovered my intrathecal pump trial. He was beyond

disgusted by the fact that it was so successful and yet I can't get anyone to

even consider managing a pump for me. Unfortunately, he has never manage a pump

before, however he is willing to prescribe the pump meds if he can find someone

to help him make sure he's doing it safely. It gives me a little hope, but I'm

not going to hold my breath.

I also learned that he commonly works with Hospice, so he's used to dealing with

severe pain patients and hopefully he will be more likely to help me get Hospice

care when the time comes (not all too far away). The appointment ended with a

lot of things up in the air, but I'm hopeful. On the way home, the nurse who is

in charge of getting me into the neuro-oncologist called and told my wife that

they had already gotten the office in Hershey, PA to accept me (no appointment

date or time yet).

Since no one could tell me whether or not they actually ran the MRS,

we decided to stop at the MRI Center on the way home (we literally

drive right past it on the way home). I went in and after trying to

explain everything, yet again, they asked me to wait for the head MRI

technician. After waiting 10-15 minutes, the head technician came out

to talk to me. Apparently, not only didn't they give him my updated

MRI Order (with MRS), NEITHER of the orders were loaded into the

computer system. I found out that not only did they fail to do the

MRS, but that it requires an injection of gadolinium contrast

(Magnevist), so I might as well just have my full anatomical MRI

(standard MRI) done at the same time.

Since I had him there, I also took the time to discuss something that I had been

meaning to ask someone there for a while now. I read this study about a new kind

of MR Spectroscopy involving a specific protein that was designed specifically

for gliomas. The technique is supposed to be as accurate as a biopsy. I was able

to get in contact with the Radiologist who was in charge of the study and he was

more than happy to share information and even offered to help my doctor and/or

radiologist program the MRI so that the test could be done for me. He also

included the full article from whatever medical journal it was published in (not

just the press release). Anyway, he said he'd be more than happy to run the

2-hydroxyglutarate MR Spectroscopy as long as I could get him the directions so

that he could program the magnet. 2-hydroxyglutarate Spectroscopy seems like it

might really be a viable alternative to a biospy, which would be AWESOME.

To make links active, replace the (dot) with a .

Press Release- bit(dot)ly/HFcXcs

Full Article- bit(dot)ly/GliomaMRS

There's plenty more I want to update you guys on, but it's 5:45am and

I have to see my PCP this afternoon (wish me luck). I'm praying that

he doesn't try to take away even more of my pain relief. I know he

isn't going to reinstate my Actiq, but I'm going to ask him anyway (or

at least remind him that I need it). If for no other reason than to

remind him what a horrible job he's doing. Wish me luck! [Hopefully it

will not take me over a week to update you after this appointment]. If

he lowers my pain medication again, you may not here from me for quite

a while.

Thanks for everything, you guys have been essential to my mere survival.

Steve M in PA, age 22

Married with 4 year old daughter

Reduced from:

Duragesic 300mcg/hr (q48hr)

Actiq-1200 (4/day)

OxyIR 30mg (11/day)

Methadone (15mg 3x/day)

Reduced to:

Duragesic 200mcg/hr (q48hr)

Norco 10/325 (Two 4x/day)

Grade II DIPG (Diffuse Intrinsic Pontine Glioma) causing chronic,

intractable cancer pain

Comorbid Fibromyalgia & CFIDS

CPS (Central Pain Syndrome)

Normal TSH Hypothyroidism

" 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