Friday, August 31, 2012

It's all in my head!

The Good news is: It's not a tumor (in my Arnold S. voice:)
The Bad news is: it's a pseudo tumor so I have all the symptoms of one with no actual tumor!
A few weeks ago I started getting sick; headaches, nausea, vomiting, the works. Then one morning I woke up and I felt like I had put out my neck and my back was having spasms.  On top of all that my vision had an odd black spot and I was feeling disconnected and just kind of like I was there but not present and the strength on my left side was diminished. I got into a chiropractor for my neck and back, who was awesome, and he was able to give me some relief from the nausea and disconnected feeling right away and although my neck and back felt better they still hurt. After two visits and no major improvement and the black spots in my vision getting worse I went in to see my eye doctor (they got me in  right away). He was a little stumped. He could see that  my eyes were hemorrhaging but only around my retina  causing the black spots and my optic nerve in both eyes where swollen but he wasn't sure why. He referred me to a retinal specialist who got me in the next day. By the time I got home a few things had happened. My Mom who is an RN had spoken to the Doctor  she works for about me and he was very concerned and got on the phone with a neuro Doctor at the hospital who told him I  needed to get into he ER right away because it sounded like a brain tumor or a stroke. Of course we decided to listen and we went in and they ran a TON of tests one of which was a CT scan. They didn't find a bleed and they didn't see a tumor  but when you put all my symptoms together with the Negative CT they were able to diagnose me with a pseudo-tumor cerebri and papaledema. The funny thing is they then referred me to the same retinal specialist to confirm the diagnosis. I was able to get into him within 4 days which was a big deal as he was weeks out.

So about pseudo-tumor cerebri and papaledema: basically my body produces too much spinal fluid and it is putting pressure on my brain causing it to swell and in turn putting pressure on my eyes causing the bleeding and vision loss. There is no known cause although women between certain ages are more likely than others to have it. I am both a woman and I am of a certain age :)
The papaledema is the swelling coming from my optic nerve.

Okay as far as treatment goes usually the first line of treatment is to lose a significant amount of weight rapidly to relieve the pressure, and meds to slow production of fluid and steroids. If these options don't work they can put a shunt in that drains the fluid off the brain and relieves the pressure and there is one other optical surgery they can do as well.
Ok just to clarify a bit, up to this point everyone is telling me lose a little weight, take some meds, and everything will probably go  back to normal and my vision will probably clear  up.

Well we went in four days later and saw the retinal specialist, Dr.S, who confirmed my diagnosis. He was concerned with how rapidly my condition was progressing though because in just four days my Right eye's blind spot had quadrupled in size and my Left eye's had doubled. I also had new black spots and I was struggling with my memory and experiencing aphasia so he wanted me to see a neuro specialist. He told me we needed a spinal tap to get an opening pressure and to relieve some of the pressure on my brain and possibly and MRI but the Nuero  would decide and he put me on a low dose of a medication that would slow the production of fluids in my body.

So  in we go for a spinal tap. Regular pressure is around 20, 16 is considered low and 25 high. Mine was 46. The Tap relieved my headache for about 24 hours but it didn't really make a change in my vision and it just continued to get worse.  Next we went into  our Neurologist Dr.W. He took one look at my file and said I needed a shunt put in ASAP because I would be blind within weeks. Uh scary much? Needless to say it totally bummed me out. Up to that point all I had been hearing was this is reversible we will treat it with meds and you can lose a little weight and now this Dr. is saying I need what is essentially brain surgery or I'm gonna be blind--in weeks! OK I can deal. So, our next step was to see the Neuro Surgeon Dr. A. and schedule the surgery the soonest he could see me was a week away.

 Now it's been 8 days since my last spinal, my headaches are getting worse, the pain is creeping down my neck and my vision is to the point I can't drive and I'm tripping over things because I can't see the ground clearly.   So while we waited for Dr. A to see us I had to go get another spinal tap. This time it really didn't do much for my headache but my vision cleared dramatically. I only had black spots left in both  eyes and some blurriness in the outer edges of my right eye by the next day.This was really huge for me because my last spinal didn't change anything vision wise and I was starting to wonder if the damage was going to be permanent. So that was a really really good day for me.

We finally got in to see Dr. A and I was expecting him to schedule my surgery for the shunt and instead he said he felt it would be irresponsible of him to do the surgery before trying alternative methods such as diet and meds. Um OK what about losing my vision in weeks!? He suggested I get used to going in for spinal taps because that's how we were going to relieve the pressure if the meds didn't do the trick over the next few weeks. At first I was like are you kidding we are gonna just wait and see if I go blind and then I realized this meant no surgery, at least for now, double YAY! So he doubled my dose of the meds I was currently taking got me in with a new Neuro Dr.  (who I go see next week). One who he could work side by side with and who would monitor my progress closely and adjust meds as needed. So now we wait  and see if the meds work and my vision  at the very least stays  the same or gets better,,, then no surgery. If they don't and my vision continues to decline we will revisit our options, surgery being one of them. PHEW now that I just wrote a book I hope you all feel informed :) My Mom always thought I was an air head but oh no, I have to take it to a whole other level and have water on my brain.You know me My motto has always been, I'll do it my way!