Category Archives: My Neuro Search Experience

This is the story of my search for a competent neurosurgeon.

Our third atempt to find a Chiari Specialist

Part 3.

When I called UVA they said that Dr. Oldfield would be glad to look at my case, especially since I was a fairly early diagnosis.  We only waited a week for the call back to find out if he would even see me.  When his Nurse Practitioner called and said that I was a surgical candidate and they could schedule surgery over the phone to be done in about 2 weeks I didn’t know what to say.  I asked if we could come in and talk first and she advised that would be fine also.  So two weeks later we were on another 4 to 5 hour trip to see him.

The Pituitary and Neuro Clinic is a terrific facility that they work out of.  Complete with diagnostics like MRI right in the building all seperate from the hospital.  The staff is very personable and kind.  The Nurse Practitioner that we saw first was terrific.  Dr. Oldfield is the bomb.  He is head of the Neuro Science Department at University of Virginia and has worked for NINDS as well.  Credentials out the ears.  He has written on and studied Chiari for years.  He is also a very kind southern gentleman that is soft spoken and easy going.  Very easy person to get along with as far as being a patient goes.   You could tell that his staff respects him very much but they also carry off a homelike,  family atmosphere.

He spent 45 minutes with us explainging things and evaluating me.  He then pulled up my MRIs and showed me the blockage and explained it.  Every time that my heart beat my tonsils were pushed down itno the foramen magnum further and blocking flow 100%.  The tonsils would then flow back up and allow a small amount of fluid through but there was some back flow caused by the restriction of flow.  This happened to me about 120,000 times a day.  My tonsils would go from 4mm to about 6mm with each heart beat.  No wonder the brain MRI was slightly fuzzey and only showed about a 4mm herniation.  He also found that I had something called Horner’s Syndrome.  Eye thing that can go along with Chiari.  He was the only person that we had seen that sounded like he knew what he was talking about.  Finally a true diagnosis.   Arnold Chiari I Malformation.

Yes I was impressed and I still am.  I was decompressed at UVA on March 26th, 2009 by Dr. Edward Oldfield and a Resident Neuro Dr. that scrubbed in with him.  Follow me in my blog about my surgical journey that will be coming  next.

Continuation of Our Search For a Neuro

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

Our search for a Neurosurgeon

Part 1.

Finding a Chiari specialist is hard to say the least.  Not to mention finding one that you feel safe and trusting of is even harder.  My local neurologist suggested that we look at University of Pittsburgh Medical Center and at University of Virginia.  I also wanted to look at Cleveland Clinic because we have a friend that had work done there and they were very pleased with the whole experience.

UPMC  (University of Pittsburgh Medical Center) was our first encounter with a Neurosurgeon and it was not a good one.  We researched the Docs credentials on-line.  We found articles and even other people that had been to him.  everything seemed to be OK as far as we could tell.  We found one person that did not have a good experience and we wrote that off as a personality conflict.  Boy were we wrong. 

We gathered up my MRIs (brain, CINE and cervical) and went to see UPMC’s specialist.  After waiting in an over crowded waiting room for 3 hours.  We were finally escorted to an exam room where we spoke with what appeared to be a med student.  He informed us that they did Chiari Decompressions on occasion and that he was going to speak with the Doctor and they would be back shortly.  Forty five minutes later and middle age man poked his head through the door and said we needed new films and that he couldn’t read anything that we brought and proceded to leave.  Whay was going on here?  We got him stopped just long enough to ask what he meant and he said to schedule films there at UPMC and then he would see us.  He said that the radiologist report from home was inaccurate and that he didn’t trust it, even though it said I had a 4mm herniation and my neuro reports confirmed my symptoms and the radiologist report.  ” I couldn’t have Chiari unless it was a 5mm herniation.”

I live almost 5 hours from pittsburgh.  My insurance wasn’t paying for this visit much less all new MRIs and they wanted an hour and a half MRI session that they scheduled two weeks away.  It sounded to us like the Doc didn’t know all that the articles claimed that he knew.  I will refrain here from mentioning his name but if you email me privately I will release it.  To say the least we felt like we had made a useless trip that was expensive and futile.  Talk about crushing someone’s moral.

After speaking with the other person  that had been to UPMC about our experience we found that we had been treated the same way as her.  Rudely with no profressionalism.  We did not go back, nor did we look back.