Friday, January 18, 2008

Is no one listening?

the last 2 days I have been back and forth to the emrgent care cervices. I was told that my head CT looked the same. Because the radiologogy dept closed I was asked to return the following a.m. for an x-rays on my back and to check labs again as they discovered that my white blood count is up, but don't know why. (I had gone in with right face numbness, severe back pain, and headache.) So I show up bright and early yesterday morning. The docctor takes a look at me and says, he needed to call my Neurologist. He said he would be doing nothing until speaking to her. He did and a LP was recommended. I was told that they had an ambulance coming for me. I explained that I did not want a LP, as I was trying to see a Chiari Specialist and the info I have received says a LP can make the situation worse (further desending the tonsils) They wouldn't listen My keys were taken as they did not want me to drive as I was having some blurry vision. The ambulance came, as well as the fire dept. My keys were returned to me once I was strapped to the guerney. They took me to the hopsital. When I arrived I was told that I was there for a LP. I again expained my refusal. They again called my Neurologist. The ER doctor returned and checked my legs and my back. He then told me I needed to have an LP and that my Neurologist ordered it. I asked just for the MRI on my back, they still refused to treat my back.

SO .......

I just had a LP late last night at the ER. I have a slight headache still and my back pain iS worse. We fought against this and I lost. After trying to place a IV in me and blowing my veins 6 times, they finally got one in. They kept asking me why I was refusing the LP. I explained to them that I had been told that my cerrebellum tonsils have distended into my spinal cannal some (Chiari) and are compressed, and although my Neurologist could not officially diagnose me with it because she goes by th 5mm rule, and I am only 3. For people with Chiari it is advised not to have a LP done, until after seeing a Chiari speacialist. Were in the process now. So with all this said they gave me 3 mm Ativan, as they said I had alot of aniexty about the LP. I told them that I didn't want one still. After a while they said they were taking me to radiology to xray my back, (That is why I went) They had me get on the table, and the next thing I know they said they were giving me Versed. After about 5 min. I was out. (right prior to this they had me sign papers for my admittance. I woke up to find that they had gone ahead and done my spinal tap. I was furious! They then told me to relax, that my Neurologist had ordered it and felt that it was safe beceuase my tonsils were not herniated to 5mm. I felt so betrayed. I then asked about my back and the infection they said I had. They said they weren't sure about the infection, and didn't take xray of my back and at this time they were going to release me while they wait on my MS panel, and the spinal fluid. This was all crazy. How can they go ahead against you permission and do things like this. I had no fever, no stiff neck, etc to warrant a LP. They were fishing for what the cause is of the infection. And yet still no answers. I wast told to see my Neurologist today, yet she can't see me and sent a message through her nurse that she will call me later, but she won't have any results for several weeks. Great! What about my spine and back pain? And now I am left with the worst spinal headache.

Today now I sit in pain further pain.

1 comment:

Ashleigh said...

I am so relieved to have found this blog. I am 17 and was diagnosed with Pseudotumor Cerebri last year. I've had bad migraines and back pains all my life and have been told it was "hormonal migraines" and just regular headaches. It took me not being able to move laying on the couch balling my eyes out for the doctors to see there was something wrong. I have had 3 LPs and the pain just comes back and I am always searching on the internet trying to find more about it and it just seems like this illness is nothing because I find hardly anything about it. I just came across your blog, although I am sympathetic to your pain because I know how it feels, I am glad to have finally saw some evidence of what others go through with this illness and to know that it is not just me feeling this way.