Tag Archives: Cleveland Clincic

Chiari Entry no. 6, 7, 8

Chiari Diary  No. 6   Sunday, March 08, 2009 

 I have seen Dr. Oldfield and I have a completely new outlook on my situation.  Everything is scheduled.  Despite what Cleveland Clinic said I am going to have the surgery.  I believe that Dr. Oldfield’s opinion is more accurate.  I still have the sleep study scheduled and I am going to do it because UVA wants to know for surgical reasons.  I will be leaving here on March 24th so I can have all the presurgery stuff done on the 25th.  I will then have surgery on the 26th.  They expect me to be out of the hospital in 3-5 days and spend a couple of days in a motel room near the hospital.   After that we will be headed home.  My family and friends have been very supportive and understanding.  Jessi will keep everyone advised of my progress via email, text, phone and this blog.  So check in on the 27th or 28th and see how it went.

Also I would like for everyone to check out Zipperhead Productions.  This is a fellow Chiarian that is setting up concert productions to rasie money for rare medical disease research including Chiari.  He is a great guy.  He is working hard to help us all so let’s support him.  Follow the following link to see what he is up to. 
  
http://profile.myspace.com/index.cfm?fuseaction=user.viewProfile&friendID=433778227

Till then Take care and be safe

 

Chiari Entry No. 7   Wednesday, March 25, 2009 

 

Hello everyone.  Well it is official,  I will be a Zipperhead by 4:00 pm tommorrow.  Dr. Oldfield and his staff have been excellent.  They have been informative, supportive, and compassionate all roled into one.  I won’t lie, I am not looking forward to this.  However I am looking forward to feeling better in the future.  They will be starting the procedure around 10:30 am and should be out and in NICU around 5:00 pm.  So check back tommorrow night for an update.  Till then take care, be safe and may your pain be at least manageable.

 

Chiari Entry No. 8  Saturday, March 28, 2009 

  Hello.  I am two days post op.  My balance is much improved.  I have the fuzzy headed feeling from pain meds and muscle relaxers.  Almost no tingling or numbness in hands and face.  I have had only one migraine since the procedure and they got it broke with pain meds.  I am very stiff and sore from surgery and still on pain meds, muscle relaxers and antiinflammatory and such for that.  That is all for now.  TTYL

Chiari Entry No. 5

Chiari Entry No. 5  Feb. 17th, 2008

Hello again.  It is Feb. 17th (Tristan’s Birthday).  I have visited the Cleveland Clinic and I am kind of confused.  Dr. Luciano seems to want to attribute all of my symptoms to sleep deprivation.  He thinks that I may have sleep apnea.  If I have Central sleep apnea then it is Chiari related.  However if my sleep habits are not related to sleep apnea then what is it? They do not want to do surgery as of yet but want me to do a 6 month follow up MRI and sleep studies in between.  I have been taking the Imipramine now for a month.  My sleep habits have improved from this but I still have the other symptoms.  I guess the headache is a little better too.  I am supplementing with narcotics for pain only when needed.  The question is this.  Is the imipramine only helping me sleep or is it doing it’s job by acting on the pain receptors and such?  What to do now?

University of Virginia wants to see me for surgical consultation on Feb. 25th.  They actually express a desire to do surgery.  I know that Dr. Oldfield is a leader in the Chiari field but there is the opinion of Dr. Luciano at Cleveland to consider. 

 What I know:  This may/probably get worse.  Worse means; more and worse headaches, more balance issues, swallowing problems, speech effected and I will eventually develop a syrnx (which sucks).  The syrnx will not just go away and the only real treatment for it is decompression surgery.  Sometimes this all stabilizes out and does not get worse other than the syrnx.

Options:  Continue the way I am and see what happens with the sleep study.  Search for other treatment options such as medications.  Suck it up and do the surgery with the chance of no change or worsening post surgery.

Right now I am going to listen to Dr. Oldfield’s suggestions and ask a lot of questions.  Then I will revisit this page.  So off to bed with me.

Chiari Entry No. 4

Chiaria Entry  No. 4: December 31, 2008

Well it is Dec. 31, 2008 and I have agreed with Jessi to get the ball rolling toward surgery.  She has been very stressed with everything going on with me lately.  I now have nausea every time that I eat.  Not enough to send me to the bathroom to vomit but enough to be uncomfortable and aggravated with it.

I have elected not to run Fire calls at the station unless I can do so without being in an operatational role.   I feel that my balance is too bad to allow me to be in operational situations.  I am afraid of falling or having a problem and getting hurt or worse, getting one of my peers hurt.  My chief doesn’t want me to take medical leave.  He wants me to stay involved in other ways.  I can do that.  It actually means a lot to me to be around the gang.

I did however get my Christmas wish.  Christmas Eve and Day were pain free with minimal other problems. I was able to enjoy the kids opening presents and the rest of the family getting together.  It was a terrific Christmas.  Jimmy got the kids all Nerf guns that shoot the soft bullets.  The adults had as much fun with them as the kids.  Maggie got here cell phone which was classic.   She opened everything and no phone then we called her phone and had here find it and answer.. When she answered I told here Merry Christmas and to thank her Nanny.  The look on her face was the best.  Jessi got me an audio book because reading for long periods causes problems.  She also got me a titanium wedding band because I have bent and broken my gold one at work.  It is perfect for me. She also got me a St. Christophers medal that I put on immediately. She did so good but was so worried that I wouldn’t like it.   I loved the gifts they were thoughtful and expressed her need to help take care of me and make things easier and at the same time they were things that I needed and wanted.  What can I say she loves me.

Anyway.  I am definetly going to UPMC for surgery and for a second opinion at Cleveland Clinic.  A couple of different family members have offered to help with bills like our house payment while I am off work.  What a blessing.  Not much else to say today so I will leave it at that.

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