Posted 7/2/2012 9:13 PM (GMT 0)
@EMTJenn You are so very sweet to respond.
I was on Topimax and Lasix for almost six years for the extra fluid because I couldn't tolerate the Diamox.
The Zonegran and the Botox skull injections are used for the Migraine Disorder I developed as a result of the years living with PTC.
BEFORE the shunt Panlor SS. Was my ONLY PAIN MEDICATION!!!
They used Flexaril in conjunction with my Xanax and ambien. This was years before Lyrica ever came on the scene.
I had that many lumbar punctures because I FOUGHT THE SHUNT PLACEMENT SURGERY! I had a close friend who is a surgeon sit with me at his home as he called a colleague currently practicing Nebraska consulting about the surgery. This was in late 2002 early 2003. I asked my friend, if it was his wife..., his daughter... What he would do?? I watched his face as I heard the Neurosurgeon on the speaker talk about possible multiple revisions, complications... Etc
I had a THREE MONTH OLD at the time of the accident so this was a very scary proposition. The lumbar punctures HURT!!! Every two to three months SUCKED!! At the end of the day, I could sit up in a chair or the bed and play with my children.
Not all decisions are made based on just me. There was no one to help with me after a major surgery or my children, my husband had to work.
Yes, I physically paid a high price... But my children are children for just a little while...
Today, I have officially been on the Nucynta 75mg tab 1 tab 4 times a day for 3 years.
Yes Narcotics do cause horrible rebound headaches...however the pain from damage from the arachnoiditis and disc degeneration is...there are no words some days. I have neuropathy in my right upper thigh... Presumably from the multiple punctures and nerve damage.
You asked about the Zanaflex... 4mg. Actually they started with 48mg a day, 3 tablets four times a day. They are weaning me off slowly. And yes, all I did was sleep for a while.
My GP and I made the decision in the fall of '08 to move forward with the shunt placement
Because of two factors.... 1. Scar tissue had made it almost completely impossible for the lumbar punctures. 2. I finally had found a neurosurgeon I felt safe with...he pioneered certain procedures and had a <2% revision rate.
So, you see many many things have happened before we arrived at the drug list you see now. I must say now that I have typed ALL this out again...the fear,anxiety and frustrations are filling me back up again as I feel yet another medical professional staring at me again...