Update

I know it's been so so long since I've updated on here.  It's kind of like the same kind of guilt I feel when I don't read my scriptures and it just follows me around in the back of my mind.  :)

One thing I have had a hard time with is managing my care here.  I have an Ophthalmologist, Endocrinologist, Cardiologist, Neuro-Ophthalmologist involved in my care, but not involved together.  My family practice doctor out here in Tooele just kind of dropped me.  I still like them for basic things, but I was very frustrated with them.  My Cardiologist took a real interest in what was going on with all these symptoms I was experiencing and suggested I needed a good doctor to manage these things.  There are so many different systems being effected that perhaps someone would be able to pull things together and make sense of them all.

The Cardiologist said he had an internal medicine friend who was very good and he would put in a call and see if he would be willing to manage this case.  That day I had this doctor - Dr. Gandolfi, requesting records and having me sign a release form.   After they received the records they scheduled an appt. Not just a 10 or 15 minute appt. but an entire hour.  Yesterday was that appointment and it was really great.

Dr. Gandolfi works at the Granger health clinic.  When I arrived at the appointment, he had thoroughly reviewed my charts, labs, doctor notes, and tests.  We talked about symptoms, he asked lots of questions.  Then we did some thorough doctor office tests- especially neurological tests.   He sat down and tried to pull things together and decide on a next course of action.  We came up with a plan.  He is contacting my Endocrinologist to talk over a few things with him, I am going to see a Neurologist in his office, we are waiting for one more lab to come back from the lumbar puncture I had, and going from there.

The lumbar puncture (LP) aka spinal tap was not fun.  The numbing part was the worst part of the procedure.  I laid on my stomach and sobbed as the radiologist kept telling me he had to go deeper and deeper.  They measure opening pressure which is the pressure inside of the membrane that surrounds the fluid.  The opening pressure was high- normal is 10-12 cm and mine was 31cm.  Then they took 5 -6 test tubes of the fluid (CSF) for lab work. 

Then came the spinal headache.  A spinal headache is caused from not enough fluid in the spinal column and so the brain is not floating in this fluid like it should be.  Your body replaces the CSF constantly, maybe even 3-4 times a day, so it is used to making more if it needs to.  However, the membrane that the needle is pushed through does not have a blood supply.  It is thick and elastic.  Most of the time it closes on its own.  In about 20% of the people that have this procedure, it does not and the CSF continues to leak.  I fell in that 20%.  When you have a spinal headache, there is little to no pain when lying flat on your back because the fluid regulates itself.  However, sitting and standing applies gravity to the fluid which means there is not enough surrounding your brain.  The brain has very sensitive nerves and membranes holding it in place.  When there is even a small amount of strain on those, it creates this headache.  A spinal headache cannot be taken care of with any pain medications- even the good strong prescription ones.  The only relief is for the hole to repair itself and the fluid to be replaced.  Along with the headache comes nausea and sometimes vomiting.

If you have this leak that won't seal up on its own, they do what's called a blood patch.  A blood patch is similar to an epidural.  They enter the same area that the LP was done in (except they don't enter the membrane) and take some of your own blood from your arm and inject it into the site.  The blood does two things - clots by the hole, sealing it up and preventing the CSF from leaking, and fills the epidural space pushing the fluid back up towards the brain.  The procedure is 95% effective immediately.  Since the epidural space is supposed to be empty and is now filled with blood, there is a lot of burning and pain from the blood being in there.  Eventually the body absorbs the blood back into the system and the problem's solved.  A blood patch has to happen in the ER and is performed by an anesthesiologist.

I waited and waited for my body to solve it on my own.  After getting the LP which was one of the most painful things I have ever done in my entire life, I couldn't imagine them reentering the same area and pushing the blood through.  But after spending 7 days flat on my back and still not having relief from the headache, my Neuro-Ophthalmologist's office convinced me it had to be done.  I had been to the ER 2 times already and the third time I was very nervous.  The procedure is done sitting up.  They put 18cc's of blood in my back until my ears were ringing and as I started passing out they laid me down.  I had to lay on my back while the blood clotted there and then went home and took it easy - which wasn't hard with all the pain I was in.  I exchanged my extreme headache for even more extreme backache.  Two days later, however, my back just feels like a deep bruise.  It's not bad.  And no headache!  Yeah!  I feel like I am now on the road to recovery.  I just need to catch up on getting ready for Christmas.  (who can afford to loose a week right before Christmas?)

Possible diagnosis right now - Pseudotumor cerebri, MS, and I'm sure a plethora of other Neurological disorders I don't know about yet.  Most likely this is all related to something neurological.  After so many months of testing and more testing, I would just like to know what I am dealing with and get a solution or plan in place.  I finally feel like I have doctors on my side instead of fighting doctors.  I feel like I've done enough testing to rule out lots of stuff and narrow things down.  I really like my most of my doctors.

So, there's the update!  Thanks for all the support and concern expressed through these last months.  So many times I would be discouraged and feeling alone in my battle and I would get a note or message from a concerned friend and it has provided such support for me.  Thank you everyone.  You are fantastic!  I have been blessed so much.  :)