A TN story from Calgary

[Jan]

I can tell you exactly what I was doing when it first happened.  I bit into a Harvey’s hamburger in 2000.  Luckily it was diagnosed only after a couple visits to the doctor, dentist, and then back to my family doctor.  My family doctor was on vacation and his fill in gave me the diagnoses.  I was referred to Dr Klassen at the Lougheed.  He sent me for an MRI to rule out MS – no MS found – thank the good Lord.  I was put on Tegretol by my family doctor and continue to take it to this date. 

I have had some issues over the years but it all came to a head in December 2008 when the pain hit and lasted for hours and I felt like I was literally frozen.  I could not move a muscle without extreme pain.  I went to urgent care and they gave me Percocet over the span of a few hours – the pain finally stopped.  I went back to my family doctor and he referred me back to Dr Klassen.  He also put me on morphine until I got to see Dr Klassen.  Luckily I got in to see Dr Klassen quite quickly.

 He put me on Topamax as well as the Tegretol.  He also ordered another MRI and he referred me to Dr Kiss.  I did not do well at all on the topamax but I continued to take it until I saw Dr. Kiss.  I got in quite quickly to see her.  She told me to stop the Topamax (all it seemed to do is make me feel loopy and very forgetful and it affected my speech)..  She examined me and gave me my options for surgery.  I choose the MVD as it seemed to have the longest time before a reoccurrence. 

I had my first surgery in May 2009.  All seemed to be fine.  I was released from the hospital on a Friday and the pain returned Sunday.  I called Dr Kiss’s office and was told to keep on the meds until I saw her again.  I saw her in July and she wanted to do another MVD quite soon before the scar tissue had a chance to set in. 

I had my second MVD in November 2009.  I was pain free for 5 months.  Once again – another call to Dr kiss and back on the Tegratol.  I met with Dr Kiss in the spring of 2010.  She reviewed her notes and felt another MVD was not an option.  She suggested the balloon decompression. 

I had that done July 9th.  I had all the numbness that is described  in the Striking Back book plus the cold sores!  The pain started again on the 12th.  I thought maybe a few days to settle down (I did read that in the book somewhere).  Well I started to count the number of tics a day I was having and they seemed to be getting less and less.  Wrong – they are back to the same as before.  I once again called Dr Kiss’s office and currently am waiting for a call back.

I'm now taking Baclofen and Tegretol.  Talk about depressing!