Ive posted here a few times before but am looking for opinions and possibly some direction on my case. I will not mention any institute or doctors name for obvious reasons.
Last year I started having random symptoms. I had not been myself for a while. Definite mood and personality changes that I was very aware of. Then it started with the sharp debilitating headaches. Then there was the memory loss, word confusion, balance issues, numbness in my face arms hands and legs. Then the pain in my neck and right arm became unbearable. I went to my dr several times and was basically told I was a hypochondriac and put me on antidepressants, muscle relaxers, and anti seizure medicines. This cocktail kept me in a fog but did not help me, I was shutting down.
One day at work during a presentation I had what appeared to be stroke like symptoms. I went straight to the hospital was given an MRI which took two hours because the pain in my neck eventually led them to sedating me and I was told I had bells palsy. When I got home I read the discharge paperwork and saw that the two neurologist that had read my head and neck MRI's stated I had Chiari Malformation with a 7mm drop. The dr never once mentioned this to me when he was discharging me and writing scripts. I went straight to the internet and researched what Chiari Malformation was. I read everything I could find and joined this support group. Meanwhile the neurologist the hospital sent me to for follow up wouldn't even look at the MRI or the report put four shots in my neck, four prescriptions and told me Chiari wasn't the cause of my issues I had complex migraines. The shots hurt for almost two weeks. I never went to him again, I went back to my dr and took the reports and all the meds everyone had me on and she basically acted like I was a nut and would not look at all the pills which at the time I was on 10 different prescriptions from all the different dr's and I was concerned for my health from them. So I just opened the phone book and found a different primary physician because I was getting worse. I was having spells where I couldn't remember how to get home. I had been married a month before and actually forgot and argued about my last name at the bank. I was desperate for help.
My new primary physician sent me to a neurosurgeon. They took almost two weeks to set the appt. up but when I finally went they asked me to bring an mri disk which I did. He had trouble opening it but did eventually look at one of the images said I had to have surgery immediately to avoid paralysis. I asked him what caused this. Could I have a tumor or could it have been from a previous injury he said who knows Chiari just happens. So the following week I was in surgery. I was asked to bring another disk of my MRI to the surgery because they couldn't get the previous one opened. My husband had it in the waiting room but instead of going and asking him I was pulled out of anesthesia and asked. Then I had to wait until my vitals were correct again to put me back under. I had the craninectomy, duraplasty, and laminectomy.
The first two days were unbearable because I was getting no relief with the morphine. Finally I got them to change me to Percocet and I was able to handle the pain. The first month of recovery was hard like most I am sure. By the second month my headaches were increasing in strength and never really leaving. My right arm was getting worse. The pain was intensifying and I was not able to write or hold onto anything with any kind of weight. Slowly this started to include my left arm and sharp pains down my spine. At each visit I spoke to him about all of this but he wouldn't spend more than five minutes with me and just said I was in the infancy of my recovery and this was normal.
The pain continued to get worse. I would have to get up take three vicodin and sit still for 45 minutes before I was able to move. Meanwhile he is giving me prescriptions for pain for 8 days at a time. The pharmacy has accused me of being an addict and withheld my prescriptions on two occasions. I have had to call every week and ask for a refill. I have asked for different meds because I am a liver cancer survivor and afraid of what the hydrocodone is doing to my liver but no response. The pain became so unbearable I told my husband I couldn't live like this that I wanted to die. He called into the office to raise hell and my surgeon was on vacation so the note was given to one of his partners. I got an immediate call back from his nurse saying that my symptoms were not normal that I was not supposed to be getting worse so he ordered another MRI. This time it was with contrast and I had no idea what the difference was. I went and had the MRIs done two weeks ago today. I called them last week and asked what were the results but no one called me back.
I returned to work last Thursday. I was actually happy to get out of the house and maybe have something to focus on other than the pain. Plus it was a holiday weekend so I would work two days and get three off. Friday at 4 pm my surgeon called me. He told me he had looked at my MRI and I had a large pocket of CSF fluid in my brain that he would have assumed my body would have absorbed but it had not. Said we would watch it and maybe a shunt would be necessary. Then on a Friday at 4pm before a holiday weekend on the phone he tells me that there is something he missed on the first MRI (which was the one he couldn't open). The MRI with contrast shows I have a brain tumor right at my surgery site. It appears to be a fast growing tumor and he is 75% sure it is benign. Im standing in the hallway at work and go to my knees. I ask him if its what is causing all the pain in my arms and he says what pain. I was hysterical at that point. He says he will call me in a prescription for lyrica for my arms. Then instead of seeing me immediately he says well discuss your tumor on your next appt. and decide if we do radiation, surgery, or both. Tells me to have a good weekend and hangs up.
So now Im still in excruciating pain and found I trusted the wrong person. He never ordered his own mri to see what was causing the problems. One damn hour in the mri machine with contrast and none of this would have happened. Who knows if I would have needed decompression surgery if the tumor was removed? Im scared to death. Ive fought cancer three times and right now Im not sure my body can handle another brain surgery let alone radiation but I want it out of my head. I want the pain to stop..
I am looking for a second opinion. I don't want him to touch me again. Am I being irrational? The medical profession has failed me but I still need them to save me from this.
Any advice, opinions, or suggestions would be so appreciated.
