Two years post onset of symptoms and what I think I know

Chiari Malformation is an unbelievable Neuro problem that only affects a few americans each year in comparison to the population.  However, it is a devastating problem for its victims.  I have talked to so many people over the last two years that are fellow Chiarians.  Some that have had results with treatment and others that have not.  Over all the recurring theme seems to be the difficulty in finding a Doctor that will listen and take things into consideration.  I ran into this problem myself.  This is my soap box.

Either the Doctor was uneducated as to what Chiari is or they were afraid to treat it.  That is right, they were afraid!  Why is this?  Well here are some of my ideas about that question.  One; most medical books used to teach our doctors only have a paragraph or two about Chiari.  See Merc Med Manual.  Two; Most doctors in this country are not in it for the patient, therefore they verse themselves in the every day treatment of every day medical problems that are common and easily treatable.  Three; There isn’t a pill to fix it or make the symptoms go away and there never will be.  Four;  There is a stigma of “the headache patient” that has been created in our society. (There is a lot that can be said about that one and I do not have the time nor the space here to address it properly).  Five;  Neurology is a specialty science and most neurologists don’t want to admit that they are not the person for this job. (This is another one that can be discussed for long periods). 

So what do we as Chiarians need?  I think that awareness is at the top of the list and there are some great folks out there that are doing just that.  Raising awareness through websites, walks and even going to the government and petitioning for more education.  I commend those folks and pray for their success.  Research is the next big one and a subject all of itself.  Also we need our doctors to start thinking of the patient again.  So many people are lawsuit happy that some doctors are so busy protecting themselves that they miss the big picture or are afraid to delve into the patient’s problems.  Or they think they know it all.  They want to write a script and send them to someone else.  Again this comes around to “the headache patient”. 

So for those out there that are looking for help I leave you with this.  Be persistent.  Research the condition and the doctors that treat it.  They are out there. Educate your own doctor as well, so that they can understand your needs, and if they don’t want to listen then find a new doctor.  Everyone can learn something new.   Early diagnosis and early treatment are key to life with Chiari. I am a testament to that as are many others.  I have found several articles by various doctors that express this opinion  (see article attatched to this link:  http://store.wisconsinmedicalsociety.org/_WMS/publications/wmj/issues/wmj_v101n8/Nash.pdf  ) and I for one will stand by it. How can I not,  just read my Chiari diary.  Also educate your loved ones as to your condition.  There are articles out there that can help with this.  Educate them so that they can understand your situation and empathise with you.  This can help them help you. (Attatched link to Chiari Handbook for  patients and their families:  http://www.asap.org/handbook.pdf )

One Year Post Decompression

Hello everyone.  I know that I haven’t posted anything new in a while but there are some really good reasons for my lack of attention to my blog.  I have been busy these last 6 months being myself again.  I do have some minor things that pop back up if I over do things.  But otherwise I feel great.  It has been such an amazing journey, and not one that I ever want to repeat of course.

Last year before surgery I was in constant pain from the skull base pressure headaches, my balance was off by a mile and  the left side of my face and my left hand were numb to any sensation .  In addition to all of this I developed central sleep apnea and I was mildly addicted to pain meds and lived in a fog.  There were other things also but these listed were my biggest problems.

So now I am back to wrestling the kids, teaching hands on rescue classes, fighting fire and being a full time paramedic.  We have started some home improvement projects that I am once again capable of doing.  Yeah it sounds like I am cured.  I’m not of course just a whole lot better off compared to a year ago.  I found this out the hard way of course.  We had a fire in a large multi floor home and short on man power.  After going through three airpacks of air and then working the outside of the structure for a bit I found my headache again.  Luckily I work with a good group that  made me sit out for a bit and even arranged for my meds to come to the scene.  The only bad thing they did was tell my wife on me. LOL.

Now that I have learned my limits I am doing well.  I know what I am capable of and just how far I can push before I put myself down for the count.  Yes I will probably push things in the future because that is me but I know just how far I can push now.  To all those out there with Chiari Malformations I hope and pray that you too can find at least this kind of result.  To those that have tried but still suffer I hope and pray that research can find new ways to help each and every one of us.

Take care and be safe.  Kyle

Six months Post Decompression

I am now a little over 6 months post decompression.  I am doing very well to say the least.  I am so thankful to have my life back.  I recently realized how symptomatic I was before surgery.  Too think that I actually wanted to put it off at one point.  Jessi (my beautiful wife)  and I were talking about some of the things that I was doing before surgery the other day.  I did not realize that I was dropping off mid-sentence and not finishing my thoughts.  I was not only losing words at that point but whole thoughts.  I do not remember reading anything about that kind of cognitive problems associated with Chiari.

I have recently found some new studies on neuro function that are pretty amazing.  Not only does the cerebellum control motor function but it also discerns auditory and focal processes.  That means that cognitive function can be drastically affected by Chiari.  I recently spoke to my old partner at work and thanked him graciously for carrying me.  If if weren’t for him I never would have been able to work as long as I did before surgery.  He is a great guy.

So now that I am better what does this mean for me?  Well I have been thinking about a lot of things lately.  Such as how long I can keep up being a paramedic?  Just because I am back to work and functioning 100 % now doesn’t mean that I can keep putting my body through 24 hour shifts, lifting on people and climbing upside down in cars.  Yes just recently i’ve been upside down in a car with a 70-year-old lady.  She is doing well though, but I digress.

I am considering getting either my Physician’s Assistant or my Nurse Practitioner and looking for a neuro that needs an experienced medical professional and Chiarian.  It will mean going back to school but my wife thinks I can do it.  She has been my rock, my love, my nurse and so much more through all of this.  I am so thankful for her.  We celebrated our 10 year anniversary this year.  It wasn’t a huge celebration but it was very special for us.

So take heart.  There is life with Chiari.  I know that I have been fortunate with my journey and it is not always this way.  But I wish all that suffer from this the best days possible and that soon there will be more that can be done for us and that we can all rest easier because of it.

And so I sign off today with this.  Take care and be safe.  Remember BIG FIRES START SMALL!

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. 17^th (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. 25^th.  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.

The Day Before Surgery

Part 2

 The day before surgery was odd for me.  We arrived at Dr. Oldfield’s office for pre-testing and  the final consult.  I was filled with trepidation.  I told my wife in the parking lot that we could always not do it and just have a nice little vacation here in Virginia.  It would be fun.  We could visit the local sites like Monticello and spend time in the pool and relax.  We could then offer our friends and family some made up story about how the Dr. was sick and couldn’t do it and that we waited for him to get better and reschedule but he never got better.  She didn’t think it was funny nor did she like the idea.

 Dr. Oldfield was late that morning due to some traffic tie up and we spoke with his Nurse Practitioner, Becky Hand, about some things for about 30 minutes.  When he arrived he was once again very personable and understanding.  We didn’t’ tell him about our discussion in the car about skipping out though. LOL.  He pulled up the MRI again and explained  what he expected to do and talked about the risks and complications that could arise.  CSF leaks were the biggest concern, of course, along with infection.  Doc didn’t expect to take too much skull nor more than the back half of CI and wasn’t sure if a dura patch was going to be necessary.  He uses a piece of the patient’s tissue for the patch.  He said they would prep an area for the patch just in case.  We then went to Becky’s office.  She was great.  She is funny and down to Earth and has a way of making things real.  We signed the consent forms and headed to the lab and then to the hospital for pre-admission paperwork.  They already had everything done through my insurance we just had to sign some more papers there also.

 We were done in the matter of about 3 hours total and headed for some lunch.  Still, I was in a daze.  It didn’t feel real yet no matter how much we had done and discussed with the doc and Becky.  I mean it was very real talking to Becky, but it was like I was watching it happen from someone else’s eyes and not my own.  Yes, I was scared, nervous, awkward feeling.  Trepiditious!!!!  I didn’t want to do this.  I knew that I needed it or else I was going to get worse.  A syrnx would form and the sleep apnea would worsen along with everything else.  All of my symptoms could and would most likely become permanent without surgery.  I didn’t’ want that either.  I wanted my life back and that is that.  END OF STORY.  But there is always that chance that surgery won’t relieve the symptoms.  I had read about it so many times.

 My wife was terrific.  She worked so hard to make me feel comfortable in my own skin that day.  She joked and flirted with me like we were newly weds; she comforted, consoled and generally babied me all at once.  Wow, I want that part all over again.  My best friend Dave came in that evening and we all sat down and had a drink and talked about old times.  I forget to mention that my Mother-In-Law went with us to support my wife also.  She has taken me in like I was a long lost son.  She treats me with respect and caring.  I couldn’t ask more of a nicer lady.  It was a good evening.  They did a great job of getting my mind off the coming morning.

 We all met at the hospital that morning and waited patiently for my turn.  Next up on the chopping block, Kyle’s brain.  It felt like forever that morning.  That feeling of not being me was gone though.  It was all real and it was going to happen.  When they gave me the sedative and wheeled me out and away from my family after I said my “see ya later’s and I love you’s” I was asking the Anesthetic if they would take pictures and that I wanted copies.  I don’t really remember doing that though.  Oh well!

 More about this coming later.  Thanks for reading.

My Surgical Journey

Part 1.

Well I guess I should start with why I had surgery.  My sympttoms started in August of 2008.  It started with the headache that just wouldn’t go away no matter what I did.   My wife was taking care of her father who had small cell lung cancer.  She had been running him to doctors and for chemo and doing general care now for almost 7 months.  Her Mother and her were working themselves ragged taking care of him and my wife’s Grandmother that has Alzhiemers.  Meanwhile I was working my 24 hour shifts as a paramedic and watching our three kids when not at work and doing what I could at my Volunteer Fire Department where I am an officer.   It was stressful to say the least.   I didn’t want to tell Jessi because she had enough going on as it was.

First thing I did was call my PCP, diagnosis was stress headaches.  sounded plausible to me.  So I began with minor pain relievers and muscle relaxers.  This helped but it didn’t actually take away the constant nagging pain in the back of my head.  So then I tried my Chiropractor.  Wow.  that was an experience in itself.  The crack of my neck as he adjusted me and instant relief for about an hour.  Then it came back with a vengence.  I only did this twice.  Well it was that time of year to get my eyes checked and contacts changed.  So I went to my eye doctor.  My contact lens script had changed just a bit so I took care of that.  All of this took about 6 weeks to do.

Needless to say none of it actually worked.  I got some relief on occasion but the headache was always there.  I finally told my wife what was going on at that point.  I couldn’t hide it anymore.  Her father passed during this time and she went back to work a couple of weeks later.  By this time it was late September and I noticed that I was stammering on some words, and my hand eye coordination was going to hell in a handbasket and I was developing insomnia.  As a medic I need hand to eye in a bad way as well as sleep.

Jessi insisted that I go to the ER around the last of September.  She just knew that something bad was wrong.  I wrote it off as lack of sleep and stress.  I’m a medic, I know what I am talking about.  Well at least I thought that I did.  The ER trip was pretty inconclusive.  CT scan was negative, blood work was clear and X-rays were normal.  Nothing out of the ordinary.  Diagnosis insomnia combined with tension headaches.  So once again I was told to continue the pain relievers and muscle relaxers.  They also referred me to a local Neurologist.

It took me a two weeks or so to actually make the appointment and go.  I’m a medic, right.  I know what I’m doing.  I don’t need no stinking head doc to see me and run up more bills, I just needed a vacation.  WRONG!!!!!!!

So this local head doctor tells me my brain is too big for my head after an MRI and starts talking about Chiari and what it might take to make things better.  By this time it was mid November and I was worried but not scared yet.  I wasn’t bad in his opinion and we could work with this to get me to feeling better without surgery. So we tried some anti seizure meds and stronger pain relievers.   Boy was he wrong about getting better.

In the course of 2 months I developed balance issues,  more coordination problems,  numbness in left hand and left side of face,  confusion,  more speech problems and more sleep problems (that turned out to be sleep apnea).  It was January of 2009 and I was falling apart rapidly and my head hurt worse than ever.  Not too mention none of the medications were helping anything.  So I agreed to look into surgery, and that is that.  I was scared at this point.

Part 2 comiong soon beginning with the day before surgery.

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