Sorry I haven't been on for a few days. As most of you know, I was in Columbus, OH for the past month visiting my family. As such, I was babysitting my 21 month old nephew, entertaining my 8 and 12 year old daughters by taking them to the COSI science center, the Columbus Zoo, fairs, fesitivals, parks, out to dinner, out for ice cream, out to movies, shopping for school clothes, and so on and so on... about $900 later and with severe head and back pain, I landed in the hospital at OSU medical center which turned out to be a blessing.

Now just to briefly back up... you might ask why I did all this running around in my current state? Because the loving family and friends whom I thought missed me as much as I missed them, turned out to be a HUGE disappointment upon my arrival to town. It would seem that I am the eternal caregiver rather than the caregivee and therefore ALWAYS expected to entertain and take care of the family and never the other way around. So along with everything else I mentioned I cleaned, cooked and did laundry too! YEP...It was pretty much a nightmare. And, it wasn't easy to leave because it's a 7 hour drive home. Needless to say I cried a lot. Eventually I called my husband and begged him to come down early because I needed his help.

Okay...back to OSU! As I mentioned in an earlier post they are FANTASTIC there! They know all about this disease and have protocols in place to take care of you should you arrive at their hospital. (I KNOW!) I stayed an extra week to follow up with their neuro-opth doc Dr. Katz. He is WONDERFUL! He spent a little over an hour speaking with me. Basically what he said was that because I do not currently have papilledema and/or previous damage from prior swelling nor has my opening pressures been above 33 he does not want to push for shunt surgery yet until we work with medications a little more first. He said that when he sees patients with opening presssures above 40 and swelling they immediately send them to surgery for both shunt and optic sheath. He was shocked to hear that they would have started me on a starting dose of 1500 mgs. of Diamox for an initial opening pressure of 28 and stated that they typically only start at such a high dose for people with higher opening pressures. He does agree that shunts are like "treating the brain like a plumbing problem" when obviously its not. He says that someday doctors will look back at shunts as a "barbaric" treatment but it is all they have currently. He said that it is disturbing to him that in 100 years the treatment for this disease hasn't changed at all. He wants me to continue taking my Topamax at 75 mgs. and he wants to add another 20 mgs. of Lasix for me in the afternoon with a Potassium supplement. If this doesn't lower my pressures, he will add 250 mgs. of Diamox to my regimien. If that doesn't work than he said we will have to discuss shunt surgery because I may just be one of those patients resistent to meds.

He said that he and Dr. McGregor (the neurosurgeon) are working on some research there using CSF tissue, blood samples, etc. and he thinks he may be on to some things. He said he recently had a patient; who was not an IH patient; donate a very large sum to his research. He said Dr. McGregor is very passionate about this cause as well. Dr. McGregor worked with Dr. Katz on developing the protocol for IH patients in the ER at OSU after hearing the agonies they were suffering at the hands of ignorant doctors. Dr. Katz said that unlike many neurosurgeons he has met in his lifetime, Dr. McGregor has a bedside manner and will take time with his patients to talk with them and offer both empathy and compassion. So should I ever need surgery, there is no doubt, this is where I will go.

We discussed the period of time when I had the constant whooshing in my ear and leaking of fluid out of my nose. He got very excited. He stated that they finally have a doctor there who knows how to treat this and is doing research on this CSF rhinorrhea. He stated that he had "no doubt" that during this time my pressures must have been EXTREMELY DANGEROUSLY high and had I come in the probably would have admitted me and sent me straight to surgery both for a shunt and to repair the leak. He said if I ever have the leak again he wants me to come in immediately, both for help, but also for research.

On behalf of all of you, I did mention this group. I asked about the swelling behind the ear, the low grade fevers, the swelling and soreness of the jaw, and the hot flashes/night sweats. He stated that he has heard of all of these things but to date they do not have an explanation for any of them.

At the end of our meeting he gave me his card and told me that if I ever needed him for anything at all to call and he would call me back as soon as he could, day or night. (I KNOW!) He encouraged me to continue seeing Dr. Friedman here at home as he knows her and has great faith in her ability, although he does agree that our hospital is lacking in both knowledge and skill. He also warned against too many LP's as especially with my pressure range, running the risk for developing Chiari.

As for me, it was tough driving 7 hours back home. Other than the love and support I received from my father when he wasn't working, I am struggling with the pain and disappointment from the other 13 knives in my back. I am still having some vertigo, and I awoke today with great fatigue and a killer HA. I am hoping that the physical stuff is just part of recovering from the long trip. Who knew I'd be happy to be home?

I know that was long so if you got this far...well...thanks for sticking with me. It's nice to know somebody does. (Geez...I sound like Eeyore.)

MM3
Friendless and looking for my tail