Part 4 ~ Still Suffering ~2010

September 2010

It was Saturday, Labor Day weekend, Jeff was at a golf outing, Tiffany had a friend over, and I had built a nice cozy fire outside in the fire pit.  I was relaxing with a nice glass of wine, Facebooking on my new phone, when all of a sudden the SWOOSHING started! All weekend, I really didn't feel good, one of my good friends and I had a rummage sale at my house, and my neighbor across the street had one as well.  It was a great turnout, and a long day.  I was really tired, and had a migraine type headache by the end of the day. But didn't think it was anything other than alot of coffee and not enough food, as we were busy all day, and didn't eat! 

I made an appointment with my Neurologist, he kinda shrugged me off, I insisted that something was wrong, that the swooshing was a true sign of shunt failure for me.  He orders a MRI.  Like always, my scan came back normal, they have never been able to diagnosis me thru a scan, it has to be a spinal tap. When I asked him to do a spinal tap, he said, "Nothing is wrong with you!" and made it very clear that he was NOT going to give me pain pills, even though I didn't even ask for them!!! So I made an appointment with my Family Dr.

October 2010

I see my family Dr.  He knows more about my Neurological condition, than my Neurologist does... His brother also had a Chiari so he was familiar with MOST of what I had going on. He examines me, and he tells me he can see the fluid in my ear, and that I probably have an inner ear infection, or something like that... I was beside myself! I explained to him that the SWOOSHING is a true sign of shunt failure, I've been dealing with this since 2003... Nothing ~ he wasn't convinced that I was having shunt failure, he looked at my MRI and the report, and again said I don't "think" that there's anything wrong, I asked him to order a spinal tap, he said if you want that done, you can see your Neurologist, whom I've already decided I will NO LONGER see.

Desperately, I call the neurosurgeons office, make an appointment with him.  I told him what had been going on since Labor Day weekend, and neither one of my local Dr's believe me when I tell them that the swooshing means trouble... He orders me a spinal tap, I had it done there at Rush under x-ray. I've never had that done before.  Didn't like it one bit, it had been years since I had a spinal tap! They never get any easier, even under x-ray, in fact harder... because now, after all the one's I had done (about 40), I have a ton of Scar Tissue in there... I was correct in thinking something was wrong with my shunt, normal opening pressure is 10-12, mine was 32. Not horrible, but not good either... With this info the neurosurgeon goes ahead and schedules me for a VP-Shunt Revision. 

Nov 10, 2010.

I had a VP Shunt Revision.  Jeff, Tiffany, & my two best friends were all there with me at the hospital, and stayed with me well into the evening. The next day...I felt pretty darn good, other than the pain, due to the incision, I could tell that my shunt was working again. The swooshing was gone! The reason my pressure wasn't extremely high on the spinal tap was because the shunt was collapsed, so the fluid was "trickling" out, he put a new tube on it, and said that it should work just fine now!  But because of the Ventricles, I MAY need a new one in the future, or it will need to be moved.

I stayed home from work for almost three weeks. The day before I was scheduled to go back to work Nov.28th, my head started hurting. But we had some storm fronts moving into the area that brought snow with them. Alot of times a front like that will bother me (a headache around my forehead and eyes), so I chalked it up to the system moving in. Went to work on the 29th, it was a typical (busy) Monday! But I felt OK, not great, not too horrible, just OK.

The next day Tuesday Nov. 30th (my birthday) I didn't feel good at all, my head was screaming! I worked all day, it snowed all day, so I was very confused by this pain, is it my shunt, or is it the snow storm moving in... I didn't know... Jeff & Tiffany took me to dinner that night, Kelsey's Steak House, then we were to go to Merrillville to get my birthday present. As we were eating dinner, I asked if we could just go home, that my head hurt, & I was just exhausted from going back to work... So after dinner, we got ice cream, and went home. A week goes by, and my head still hurts, then the swooshing started!!!!!!!!!!!

And I knew. 

I will eventually have to have the shunt taken out and moved into a different location, he thought with a new tube, I'd get a couple of years out of it... Well that's not the case. I call the nurse practitioner that works with Dr. Munoz, and tell her what's going on. Without hesitation, like he new I was gonna call... Sets me up for surgery, skip the spinal tap, thank god!  But first wanted me to get a CT-Scan to make sure I wasn't having any Post-op complications. Had the scan, everything looks fine! Surgery is scheduled for Wednesday Dec. 22, 2010.