Sunday, March 23, 2014

Next Steps

On Tuesday, Broch took me to Peoria for my lumbar puncture.  Having had a pretty bad experience with my epidural with Tessa, I was pretty nervous.  Luckily, my doctor prescribed me a sedative to help with anxiety.  Once we got there and were checked-in, I was feeling pretty positive about the experience.  It really wasn't as bad as I thought.  They numbed the area on my lower back.  Then they used a fluoroscope x-ray machine to look at my spine.  That way the doctor would be able to see exactly where to insert the needle.  Although she did hit my vertebrae a few times (the space is really small between the vertebrae), it was relatively painless.

She had to take 3 vials of spinal cord fluid to send to the lab, and she was able to tell me my starting pressure.  The normal range is 20 and below.  20-25 is a gray area, and anything over 25 is considered elevated.  My starting pressure was 27.  I have read about people having starting pressure of over 50, so in the scheme of things it could have been a lot worse.  I was sent home and instructed to lay flat for the rest of the night.  That may have been the most difficult part - :)

Dr. Keung called me on Friday to let me know that my lab results were in.  Everything looked fine with my spinal cord fluid.  Since with psuedotumor there is no real tumor, we have to eliminate any other possible cause in order to positively diagnose with PTC.  Anyway, we have eliminated all other possible causes and now are 100% sure that it is PTC.  She prescribed me a new medication called Topamax to help lower the pressure of the fluid.  The medication combined with weight loss is the treatment plan.  So, I will take the meds and do my best to become healthier through exercised and portion control.  I need to call her back in a month to let her know how the medication is working, and then I will set up a follow-up appointment for sometime in May.

I will do my best to keep you updated as we continue this journey.  Thank you so much for your support!

Sunday, March 2, 2014

The Good, The Bad, and The Ugly

On Thursday, mom and I traveled down to Peoria to see Dr. Keung (pronounced Kern).  We arrived early, so I was able to get a series of tests done and out of the way.  I had to do a peripheral vision test, have pictures of my optic nerves taken again, have my optic nerves measured, as well as the regular eye chart exam. 
 When we saw Dr. Keung, we were able to see my MRI photos.  It is so weird seeing your brain and eyeballs from all different angles!  I was talking to doctor about all the side effects from the Diamox.  She suggested we stop the meds for the next 3 weeks.  We also decided that the best way to proceed is to go ahead and have the lumbar puncture completed.  There was concern after the MRI about having it done because of the positioning of my brain (my "tonsils" of my cerebellum are positioned a little lower than most normal brains).  There is a 1 out of 1000 chance that the lumbar puncture could cause them to shift even more.  Dr. Keung and the radiologist spoke about it and feel comfortable pushing ahead with the puncture. 
So, Dr. Keung ordered a series of labs and scheduled a lumbar puncture for March 18th.  She assures me that they use an x-ray to help them guide the needle.  They will numb the area, and I should hardly feel anything.  I just hope that she is right!
It has only been 3 days without the medication, and all the side effects are gone!  Unfortunately, the headaches are back.  :(  I certainly hope that I can get them under control using over the counter medications.