Our Stories

I am a 41 year old Bakersfield, CA woman, who was two years ago diagnosed with a pineal region cyst, size 1.4cm x .9cm x 1.5cm. relatively small compared to the stories I've read about on your site.

I've been reading your site for a week now and trying to come up with "my story", and decided to just bite the bullet and do it. So here I am. My story begins at my family doctor's office, in December of 2001 where I was for my complete yearly physical.

I began about October of 2001 to experience facial numbness, memory loss, fighting to find the right word etc., and decided I'd let my doctor know. I had been diagnosed with migraine about 2000 and had been prescribed several different medications which didn't work. My doctor decided that this was not good and said he wanted to send me for an MRI, so in January I had my first one.

Not a fun ordeal as I'm sure everyone reading this knows, but I made it through. A week later my doctor called me in to go over the MRI, normally my husband would come with me but this time I said naaaaaaa it's probably nothing, just a pinched nerve or something, so don't bother and I'll call when I need you to come get me.

I was finally called into the doc's office. He sat me down and with a very concerned and grim look on his face he said " you have a cyst on your pineal gland" I had no idea what he was talking about and I'm sure he knew this and began to draw me a diagram of my brain.

At this point it hadn't registered yet what he was saying, but boy when it did, it hit me like a ton of bricks. I totally zoned out and all I could think was OMG I have something on my brain. Needless to say I hadn't bothered asking the size of this cyst. He asked me if he should call my husband and I said no he's gonna come and get me and I'll tell him
then.

I went outside to wait for my husband. Going totally nuts and crying and trying to calm down before he got there. When he did I got in the car and we started driving back to our house. I had no idea how to tell him, so I said "Honey, I have a cyst on my brain somewhere between my brainstem and my brain" I was clutching the diagram the doctor had drawn for me, and told him that I'd show it to him when we got home. I can't remember too much of his reaction when we got home or what I said or how I explained it or any of that shit (big surprise there huh?). Oh yeah the doctor also said he would get in touch with me about seeing a neurologist and I am not sure of the time frame but I think I saw her in January also.

We went to pick up my MRI and the report from the lab, and off to the neurologist we went. Now most neurologists I would think would be up with the times and know how to read a CD right?

WRONG....my husband had to go with her to set it up and show her how to get through it and all that stuff (he's very computer literate thankfully).

*** Note from Catherine... if your doctor is too stupid to figure out how to work a CD RUN!***

Well she didn't offer much in the way of anything really, said she couldn't even find the pineal gland let alone the cyst( the report said they had injected the dye when they actually hadn't, I mean I would remember getting poked with a needle considering my intense dislike of them)When I pointed this out to her she just shrugged and said ok well come back to the exam room.

She did tests on me, asked me to remove my shoes and had me walk on my tip toes, then on my heels, then stand against the wall, then put my arms out to the sides and touch my nose, all the time I'm looking at my husband like what the hell is this woman doing? She then said the cyst was not causing anything to happen and said it was the migraines doing this and prescribed topomax and inderal, called for an appt to see a local neurosurgeon (big mistake) and sent me on my way.

We were more confused than we were when we first got there. Ok so now we're into February and off to see this neurosurgeon. I had all my notes with my symptoms on them (I won't go through em here, you all know the symptoms, and I have them written down somewhere but can't remember where I put them, surpised?) The doctor came in read the paperwork and said "why are you here? this is a simple pineal cyst, it's nothing.

I calmly told him I wanted some answers to some questions and I wanted him to look at the CD. He looked at it and asked if we were HMO....we weren't HMO at the time we were PPO(which is a step above and costs more). Now for someone who originally didn't want to do anything he immediately said he wanted another MRI done this time with dye, we went back to the exam room at which time my husband asked if surgery would be an option. The doctor looked at him like he was nuts and said surgery we don't remove these cysts, they don't cause any problems. Then he got irate and said "Are you a doctor?" are you a nurse? where are you getting your information from? my husband told him then that we had done some research on the internet. the doctor said the internet was a bunch of garbage or
something like that. So I had another MRI that same day we were at the clinic there from 11am until about 8pm when it was all said and done.

After I thought we were done with the MRI we went outside to wait for the technician who wanted to make sure we hadn't needed to see the doctor again.

She came running out and said OMG we need to get you back in there we didn't do the pineal region. I'm thinking "ok wait just a gd minute. I have a cyst on my pineal gland which I'm going to assume is in the pineal region. the reason I'm having this MRI is to check out this cyst and this idiot forgets to do the pineal region??????"

I know what you're all thinking, I should have just said f this and left. But I didn't....I went back in and we finished the MRI and we left. I went back to the neurologist and told her of the experience I had with this neurosurgeon she said she'd been getting a few complaints about him, btw I had also taken myself off the topomax and inderal because they were making my symptoms worse(my husband and I went out to dinner and we were in the middle of a conversation when I had completely stopped talking in the middle of a sentence, he made the gesture like ok continue and I looked at him kinda blankly, he said you were talking, I said I was? He said OMG those meds are making you stupid, which made me cry and made him pissed off at himself and I figured it wasn't worth it to be going
through this so I said f it and took myself off, btw the neurologist calls these "brain farts" and made a little giggle when she said it. I was NOT amused!).

I told her that I wanted to see someone in UCLA and she said well I'm telling you it's just a cyst but if it will ease your mind dear(pat on the hand) I will send you to UCLA. So off I go to UCLA mind you I couldn't get in till about April I believe and my husband works offshore and was gone for this appointment so my brother in law came with me. I'm sorry for the long email here...to make a long story short, I met with a Doctor Bergsneider in UCLA and after going over my MRI's with me he found a discrepancy in the last one.

Something about the dye when it was injected first it showed up as a cyst then 20 minutes later on the same day and same film it had totally infused with the dye ( I think basically making it look like a mass) he called his neuro-radiologist to find out if this were possible(leave it to me to have something else f**k up that they knew nothing about LOL)the radiologist told him no he'd never heard of that before and it normally takes up to 5 hours for the dye to totally go into the cyst. So I go for yet another MRI ( don't you just love those things).

In June of 2002 I go to UCLA and have this MRI done, with very few hitches other t han the uncomfortableness (is this a word, cause if it's not it should be) of the situation. I called the doctor's assistant several times and left polite voice messages and also emailed her a few polite queries.

After 5 weeks of hearing nothing more about it, I emailed her a not so polite email to ask wtf was going on. She emailed me back the same day and basically said that she thought he did and he though she did and neither one did ever get back to me and I was to have another MRI in one year and that was that. So here I am two years later, ( I decided to take a year off of this hell and try to forget for a bit and lead a somewhat normal life)ready to get back on that old horse and figure out the next step to take.

I am waiting word from UCLA as to when to go for my next MRI. A number of things have changed my symptoms have gotten worse, migraines are almost to the point of being unbearable (I am however taking 300mgs of Neurontin and 10mgs of elavil, so I guess I'm somewhat on the right path here thanks to my family doctor who seems to be the only doctor who gives a shit about me)

What scares me is that some of you or most of you actually have been going through this for a lot longer and have had surgery and it didn't seem to work out. I'm not sure even if I'm on the right track, not so sure I want someone digging around in my brain.

Thank you so much Catherine, for doing this site and for having a place for all of us to vent. I will be praying for all of you and your families!!!! Again I hope this isn't too long of a story(I do tend to run on and on) but if it is feel free to shorten it up as much as you need to.

Sincerely,

Deborah

Sorry it took me so long to add your story Deborah.
You can read more of her story here.
~ Catherine

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