mri
Dear Diary,
Yesterday I got an MRI done. I think I am the only person on earth who likes getting MRIs (I’ve only had one previously, but I enjoyed the experience very much). I like being in cocoons apparently. They cover you in a warmed blanket and cover your ears and slide you into an enormous machine that looks like Stanley Kubrick designed it and you spend 25 minutes zoning out to the sweet sweet rave tunes of the camera as it works. Half way through they injected a dye into my arm so that the camera would detect different things, I guess.
The results of my first MRI got me a diagnosis I didn’t want: surgery wouldn’t help. Some people with TN are cured by surgery because the thing that is the problem is the nerve is being compressed. Since I believe my nerve was damaged I knew it was a slim chance but I had hope. I pursued this MRI as a second opinion, so I could put the hope of surgery curing me to rest. I knew what my answer was going to be.
So imagine my surprise that I am sitting in a Starbucks trying not to cry in public and not because of physical pain but out of rage. I just opened my email to see that I had a couple things from Kaiser waiting for me. The first were test results which told me my brain looked normal in very convoluted and medical language (never really a good idea to send to a non-medical person, in my opinion). The next message was from my neurosurgeon.
Well, that isn’t good news. I knew it would be the news I was going to get, but I expected to get it this Friday when I go see a neurosurgeon in Redwood City. This Dr. Chaluvadi is the same neurologist who signed me up for Life Planning in the event of my suicide (not an appointment with the Psychiatric Dept.) and for a Stress Management class (not a Chronic Pain Support Group, which Kaiser also has). I’m just so, FUCK YOU. Why are doctors so fucking dumb? The brevity of the note is insulting. The sentiment is remarkably tone-deaf. I asked for a second opinion about surgery BECAUSE I WANT SURGERY.
Has there ever been a neurologist with TN? I want to go to that person.
Here is what I wrote back:
I don't necessarily consider this good news. I was actually hoping it would show some type of compression that surgery had a chance at fixing. If not, I am looking at having this for the rest of my life with no chance of a "cure." Am I incorrect about this assumption?
Should I cancel my appointment with the neurosurgeon this Friday?
The SPG block did not work at all.
I am about to go to 60mg of Baclofen and have added Gabapentin in desperation. I am currently taking 600mg at night but want to try adding it to the entire day. Do you have a suggested course and what would be the maximum amount I can take in a day?
I am desperate for relief. The attacks can go for 1-2 hours recently.
If I went to an ER would their pain intervention work?
Are there other medications I can add to the mix? Are there other things we can try?
I have started acupuncture (this morning). As soon as I left her office I had a two hour long attack and I had to just sit in my car.
At this point my word count was up so I couldn’t add you terrible heartless freak. Probably a good thing. But also, the fact that there is a word count is also so Kaiser/health insurance fuckery. I get that they don’t want people to unload on them but I often have more questions than the word count will allow and since their appointments are limited to 20 minutes I can’t get to to them in person either. FUCKERY.
The attacks are lasting so long now; I just can’t see how I am supposed to do this. In-between attacks I can function, smile, be present, but my back lower molar ALWAYS feels like it is deeply rotten and infected. I’m just used to it. If I put the pain I feel in-between attacks into the jaw of one of you you would want to die. It’s not normal, it’s not good, it’s very disturbing but again, I have 11 years of getting used to it. My nerves are liars, and mostly they are trying to convince me that my teeth need to be removed from my face. Lots and lots of TN havers get teeth pulled. It’s one of the most common results of having TN. I can’t believe dentists agree to do it actually, but that’s just a testament to how uneducated people, even dentists, are about TN.
So there you have it. I will have this for the rest of my life with no hope for a cure (and please don’t tell me to not give up hope. I never really had any. I need to focus on living with this thing, not hoping I won’t live with this thing. I like science and reality, it comforts me more than hope.) How was your day?
Fuck.