May 22, 2012
As I sit and try to type this, the pressure in my head is almost unbearable. If I write down what's going on with me and vent my frustrations I think that may help my mental state..
I had made a call to Seattle on Sunday. I finally got in touch with a NS on call. After I told him what was going on and about the findings of my CT scan and my recurring fevers that go up to 102, he was very worried and instructed me to go to the hospital or urgent care.. He thought that perhaps a doctor in town would evaluate me and then call up to Seattle to arrange a medical transport. Although I was very reluctant because I just spent 3 days in the hospital and they did NOTHING for the swelling on my brain, I went per his orders. He was very confused as to why there was nothing done at the hospital while I was an inpatient and why they discharged me knowing I have viral meningitis, viral pharyngitis, cerebral edema, and fluid on my brain... I was told that there was nothing they could do. While I was in the hospital I was on a constant potassium/saline drip and pain meds hourly. I was never given any steroids of any kind. I did have an LP 4 days prior and they found that I have a tear in my dura in my L-spine so they did a blood patch to seal up the leak. That was very unpleasant.
Back to what I was saying..
I went to the urgent care in Vancouver and during triage the nurse was puzzled as to why I didn't go to the ED. I told her my concerns and the way I have been treated by most of the medical staff in the ED and in the hospital. She seemed a little sympathetic.. I was running a fever of 101 and my BP was 140/100 and my pulse was over 100.. I told her that I have tachycardia. She went out to get the doctor and then the doctor came in after reading my charts from my stay at the hospital. She went on to say that the ED doctor already did a CT that shows the swelling, and fluid amongst other findings that I can't remember what they are.. I will write down the radiologist findings though towards the ending of my entry. She said that I have been to the ED multiple times and asked if I have a PSYCH issue.. (you know if I had a dollar for every time a doctor asked me this, I would be stinking rich) Then she went on to say that I needed to be transported to the hospital in Vancouver and asked if I wanted to be transported via ambulance which I refused. She left the room and I burst into tears. You know, I should be used to being treated this way by now.. I guess people forget that I have feelings too. The nurse came in and was astounded to see me bawling my eyeballs out. She asked what was wrong, so I told her. She told me that somewhere in my medical file it was mentioned that I possibly had a PSYCH issue and was simply asking me if it were true. I told her that it was untrue and I was tired of hearing these things from medical personnel. She told me that I shouldn't let other people upset me so much. Then the doctor came in and made a frowny face because I was bawling. She said that she reviewed my CT and she believes I needed to be transported to ED for MRI. She hands me an envelope and tells me not to open it and to give it to the nurse at hospital. I leave and guess what.. I opened the envelope. She states that I have been to the ED multiple times and I deny any PSYCH issues, and I am acting very "normal" for having the worse HA ever. HOW WAS I ACTING NORMAL? I was literally bawling my eyeballs out not only because I was offended by the way I was treated, but because the pressure in my skull is almost unbearable!!!! I ended up NOT going to the ED. I think I am regretting that right now. I think I am going to call Seattle again since it is a weekday to talk to a nurse.
I made an appt with the medical records lady so I could take notes while reading my medical record. I have had a gut feeling that there was something defaming in my file for doctors to treat me the way they do. Low and behold.. I found several things that went against my true character. One doctor even commented on my "several tattoos on my upper body and back" WTH does that HAVE ANYTHING TO DO WITH MY HEALTH?
I know there is something wrong with me. This is my body. As of right now, the pressure in the back of my head is so severe that it is making me feel nauseated. My legs keep going numb for a short period of time and am having doubled vision. Just called Seattle and the operator put in an urgent message to the advice nurse so I should be hearing back from her soon. I anticipate that she will tell me to go to the hospital. There is something in my medical file stating that I have "drug seeking behavior" That hurts my heart a lot. I never seek drugs. I seek treatment or relief of my pain. Now I have swelling in my brain and I am too afraid to go to the hospital to be evaluated. How PATHETIC. I had a follow up with my PCP on my birthday.. Which was on May 18. I asked him for a new referral to a neurologist. He said that there is nothing anyone could do for me, and a neurologist would not be able to do anything for me. He told me that I was foolish for proceeding with the decompression surgery because the NS in Vancouver said that I didn't need it. He told me that he is not going to continue to give me any pain relieving meds and that I am going to have to live with this pain for the rest of my life. I have asked him on several occasions to refer me to pain management. He thinks it is unnecessary because I have chronic pain.. I should join a support group and exercise. He said there is no quick fix for me.. I just said.. No sh..it! I have been dealing with this pain for 3 years now.. I know better than anyone that there is no quick fix!!! I don't think asking for the referrals to a neuro and pain management was unreasonable. I think I am going to consider seeking a new doctor who may be more open minded to helping me manage my pain, refer me to a neuro and an endocrinologist. My thyroid tumors have grown in size and now I have something called shotty cervical adenopathy. I think that is when the lymph nodes in the neck are swollen.. I read that it could be from cancer. I was told there was some change in my suboccupital bone as well as something called sulcal effacement that represents edema. I think that means that there is swelling to a specific area of my brain. With the pressure mainly being in the back of my head where the surgery was done, I would assume that is where the swelling is. My right arm is beginning to ache.. Feels almost bruised down to the bone. I will copy the radiologist report later. I am going to wait to hear back from the advice nurse from Harborview.