Detailed Email to Brain Tumor Support Group

A short explaination:

This is an intro email I sent to the brain tumor support group after I had asked a few questions

Thank you all for your suggestions. At least I now know there are good ones out there. I am already doing most of your suggestions. I have gotten copies of any medical report for my own records for some time now. I guess I like to know what is going on too much or you could call me nosey.

This all started for me in November when I had an "attack" and could not get out of bed for a week. I would wake up from eighteen hours of sleep and feel like I had not slept for days. After that got better I was dizzy, confused and had a very hard time concentrating for a few weeks following the "attack".

The first doctor I saw said he thought I needed more fiber in my diet. I made an appointment to see another doctor as soon as I returned home from that appointment.

The next doctor (also a friend of mine but a 2 hour drive away) ordered blood tests for everything he could think of (Mono, Epstein Barr, lyme, thyroid, and blood counts). Nothing was positive except Epstein Barr, which is not abnormal. Most people have the Epstein Barr antibodies. So, he told me it could be a virus and to wait a month to see if it got better.

In December I had another "attack" which lasted a few days and then the dizziness and other symptoms, which lasted for a few weeks again. I went back to the second doctor who put me on two months of antibiotics to rule out Lyme since the lyme test is not very accurate and he put me on Wellbutrin XL 300mg/day to just help me stay awake.

Late in January I had another "attack" which lasted a few days again so I called and asked for another appointment and the second doctor told me he was closing his practice due to financial problems at the practice. My boss set me up with her doctors here locally and I made an appointment. This was at the end of February.

I had the appointment on March 18th. I was told that he thought I had MS and gave me a referral for an MRI to check for MS. I know a lot of people with MS including my boyfriend so I am quite familiar with the disease. But I still went and did a lot of research to make myself more familiar with it so that I could talk intelligently to the doctors.

I had the MRI the following Monday. I knew when it was going on that something was wrong because of a few things including them doing "extra" things. I was given the films and I got on the elevator. I pulled out a film at random and immediately knew that I had a tumor and I thought to myself that I had bigger problems than MS.

The doctor called and left me a voice mail telling me I had a "lesion" in my brain and to stop by and pick up a referral for a CT scan. I scheduled the CT scan for the next day and called the doctor. I asked about the "lesion". I was trying to get him to tell me the truth and questioned the "lesion" term since it is usually used in relation to MS. He said that the spot could be a busted blood vessel. I replied, "Yes, if it were an aorta but there are no blood vessels that size in that part of the brain." He had no response.

I had the CT but they took forever and it was noon by the time they got me in the machine for the five minutes it took. The radiologist had already left for the other office by then so I had to wait for Wednesday for it to be read.

The doctor called me about three PM on Wednesday and said, "You have a brain tumor. Stop by the office and pick up a referral to a neurosurgeon."

I immediately called Johns Hopkins to make an appointment. That appointment happened last Thursday. Though at first they were promising it earlier.

I have typed the rest of the story. My boss says she noticed me changing in August of last year. Eighteen months ago I was working up to 18 hours a day moving up in our corporation. Now, I am lucky to make it through eight hours with a nap at lunchtime. I am seriously concerned for my job. I am pretty sure my career is ruined at this point. I have about 4 weeks of sick time left and then I can do the 12 weeks of FMLA. Then that will be it. I know I have a few days of surgery and at least six weeks of recovery ahead. If this does not correct the problems then I do not know what will happen. But the longer they put off my surgery the less time I will have available.

I am working when I can. But I seldom drive anymore. Between the seizures, the dizziness and me failing the roadside sobriety checks in the doctor's office's (My last drink was December 31, 1999) I do not think I have any business driving.

So, yes I expect a little better medical care than I think I am getting. The doctor seemed unconcerned that I had difficulty working, well; he just seemed unconcerned about everything. I understand that to them this is no big deal and an everyday occurrence but it is not that way to the patients.

I am a well-informed patient and I think some doctors do not like that. I knew pretty much what to expect regarding the surgery and all. I think he thought I was a smart ass or maybe that I knew everything and he didn't need to talk to me. I don't know. I just felt brushed off.

Oh well this is too long already. I am done venting for now. Thank you all again. I am still looking for a good neurosurgeon.

Tori