Part 2.
Our next trip was to the Cleveland Clinic. What a great hospital. We entered the front doors and was greeted by very friendly gust services folks that got us going in the right direction to find the office. Also valet parking was terrific and free. The facility is huge to say the least.
Once we got to the office and signed in we were brought back to an exam room in just minutes. The nurse took our films and did a quick intake interview and said the doc would be with us in about trhirty minutes because he needed to review my films. Sure enough thirty minutes and here he was. Well it was actually his associate but it was still timely.
The Associate neuro told us that the films appeared to show CSF blockage in the Anterior portion and that surgery was warranted in his opinion. He spent around 45 minutes with us explaining things and doing a full neuro exam. He was very kind and personable and seemed to be very knowledgeable. We were excited to have met him. He then told us that the main doc would be with us shortly and that he was going to talk to him about the exam and stuff and that he would be in in a minute.
We were impressed that someone had actually sat down and listened and even explained some things. Then all of a sudden this guy in a white shirt and white pants opens the door and notices that I am looking at the painting on the wall. He comments on the painting and just starts a nice general conversation. I thought he was the custodian and was just being friendly as he was checking rooms to be set right. No. He was the Doctor as it turns out. He didn’t look like any doc and present himself like any doc that I had ever met.
He tells us that my flow is partially blocked in the posterior and that yes he spoke to his colleague and he was wrong. OK. He then starts questioning us about my sleep habits. Yes it appeared that I had some sleep apnea by the sound of it. So he says let’s get a sleep study and fix that first. Then we ask him about Chiari Causing sleep apnea and he says “yes but I think that your whole problem is lack of sleep, not Chiari”. Once again I say OK. I mean what else could I say. I have just been told by one doc that surgery is warranted and flow is blocked in the anterior and now by another doc that it is only partial in the anterior not the posterior and sleep is my problem.
I explained to him that the sleep thing just recently started and that the other symptoms started months previously. Couldn’t it all be caused by Chiari since the sleep problems were new compared to the other problems? He replied that yes it could be but he wanted me to come back in six months for new MRIs taken with position changes and have the sleep study done before that. Then he would review my case again and we could make some decisions.
This man wanted me to live like this another six months. I was barely making it through the day much less my life. We asked him again if he was sure and what about this and that and he said that these things didn’t prove anything yet. He then got up and meandered out the door with the same hey how ya doin attitude as if he were the custodian again and left.
I was very puzzled by all of this and was even a little lost. My wife and I wandered down to the lobby with our sleep study orders and a schedule for a six month MRI and appointment like we were lost. Two totally different opinions and no real answer. Six more months like this? What? Who? Where? How? Why? WTF?
The ride home, once again a four hour trip, was filled with our speculations. We wondered if the diagnosis of Chiari was real from back home at this point. But we had the MRIs that we had looked at and compared to other Chiari MRIs online. It was there! I had multiple sypmtoms! It all matched up! Or so we and our medical neruo back home thought. Wait till I told him this one. He flipped over how Pittsburgh had treated us, and now this B.S.!
We really felt lost and down trodden after this trip. But we scheduled the sleep study and left it at that till we found Dr. Edward Oldfield online at University of Virginia. He would be our last hope of a real opinion and some real answers. So we mailed him everything that we had and waited.
Note: Cleveland Clinic now refers all Chiari cases to a different Neurosurgeon that is with them now. I have heard that he is very good and caring. He is not the same Neurosurgeon that we saw there. Dr. Di is listed on this blog on the Chiari Specialists page.
More later on our trip to Virginia
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