PTP = Primary Treating Physician aka California workman's comp speak
Today was my day to travel just a mile or two down the road to my PTP. He's been handling my care since we moved here 3 years ago. He never has really done much, or listened to any complaints. His MO is to figure out what specialist he feels I need to see and then ship me off to them.
That's okay. It's been working so far. But I do have to see him once a month to have him renew my oxycodone RX. And he's let me know that he doesn't like being the guy prescribing narcotics and that he wants me in pain management (PM).
Which I'm fine with, but I live 1.5 hours from one PM and 2.5 hours from the other (in the same building with my new neurosurgeon - NSG). And I have been in such pain and feeling so weak, it's difficult to imagine myself on the road to either of those places every two weeks or once a month, along with going to Portland for the NSG.
Before the PTP came into the room, as usual, his nurse took my blood pressure and was surprised by how low it was: 98/30. I've never known my BP to be that low. Then I remembered that right before I left my house to come to the doctor's, the back of my head started to hurt strongly and an intense burning was all over my scalp, I felt weak and then I felt pain all down my right side, especially in my right leg. It stayed with me, or the remnants of it, as I waited in the lobby at the doctor's office. Could this low reading be a sign of another autonomic event? I used to take my BP as soon as possible after I felt the familiar (I get them twice or more a day) symptoms, and my BP would be very high, one time it was 182/159 and I figured that was a couple of minutes after the peak of the "event" or experience; ie the burning prickly scalp and weakness.
[I think I explained some here about autonomic dysreflexia in a past post. Briefly, it is an interruption in the signals going up the spinal cord to the brain, when the brain needs to regulate the blood pressure and heart rate when the body responds to something shocking, surprising, tight clothes, full bladder or bowel, heightened emotions, etc. The brain needs to regulate the heart, but it never receives the signal from the spinal cord because of the "short" in the cord due to lesions found in spinal cord damage. Thus, BP races up sky high, and in some cases, death follows. This is often found in quadraplegics and paraplegics.]
I wonder now if my BP was so low because of this lack of regulation...that the BP had shot up for some reason (hence, my symptoms), and then as it came back down, it kept going down. All I know is, I have never had such a low BP reading.
When my PTP and I settled in to talking, I mentioned the low BP reading but he did not say a thing. He flipped back to my chart, saw the reading, shrugged, and continued on with his own agenda.
We discussed my visit with the NSG, and he'd received a report from him regarding my March 8 appointment with the NSG. I asked him for a copy of that report, but I didn't get to see it while we were visiting. Later, I'll let you know some of what the report stated, some of it shockingly new to me. My PTP was so happy to see that the NSG also referred me for PM.
I told him that I wanted a script for a mobility scooter. He started in with, "This is a very hard thing to get done, a lot of people have to be contacted and it is hard to get insurance to pay for one." I'd heard this liturgy before and last time, I'd let him talk me into just waiting and see how I got along without one.
However, since I am now officially 100% permanently disabled, and since my atty told me that I should ask the doctor to write a script for anything that would make my life easier, I wasn't going to put up with that today. I interrupted him, saying, "I don't care. I just want you to write a script, and I will send it to my attorney. I am not dealing with Medicare or regular insurance so perhaps my situation will be easier. I just need you to write the script."
He handed me the script.
My PTP then told me again how he doesn't want to be the guy prescribing me narcotics (even though I am on a very low dosage of oxycodone). Then he said something that really hit me.
He said,"You need to have surgery and get this over with. I believe it's interfering with your life (I said, "sure it is! I can't do anything!) and he said, "This has all become something much bigger than it should have ever been."
And...well, I let him have it.
I said, "It has NOT become something bigger than it should be. It IS big! I should be dead! This will affect me every day of my life for the rest of my life. I'm not going to get a surgery and suddenly be all fixed. I'll continue to worsen, I know that. Don't tell me that I've made this all something bigger than it should have been!"
He avoided any response to that, too.
We left friends. He's my primary care doc for things non-work injury-related, too and he's my husband's primary. I've seen him every month for 3 years now. He's a good guy.
But, I need to figure out how to get to pain mgmt, and I might need to find a new PTP. One who perhaps would be willing to prescribe my pain medication. That would solve that problem.
I can't help but figuratively shake my head when I consider that if my PTP had just read the neurosurgon's report, he would see why I should not be out on the roads when it can be avoided. But, more about that in the next post.