Saturday, November 28, 2009

Another week passes

Well, the two day headache made itself into a four day one last week.  On Monday I had a regular visit to my family doctor for my regular prescription refills and one new one.  He decided to try me on Tramacet for the headache pain as regular Tylonel and Maxalt have no effect on Chiari headaches. We also discussed my surgical options at Toronto Western and he is confident the TWH is the best place to have surgery.

Monday night as my headache raged, I took 2 Tramacet.  Warning: Do not take this drug if you need to perform any of the following: drive, walk, talk, think, speak or move!! WOW!  I was sitting on the couch waiting for it to kick in, but it had already kicked in.  I wanted a drink from my glass not a foot away on the side table but I thought if I moved my arms they would fall off.  Yeah, it's strong.  But it did help the pain.  And Tuesday I felt hung over, but I didn't have any pain.  Not a bad day, all in all.  Next time, I'll only take 1 though and see if that is enough.

So where am I at in my decision about surgery?  I've decided I want the decompression surgery.  I've had to give up more and more activities lately because doing them causes terrible headaches.  Now, I'm trying to decide if I want to have it done in Toronto by Dr. Gentili.  I'm weighing all of the information I have carefully.  And I'm investigating one more option: the US.

I've read about and contact the Wisconsin Chiari Center in Milwaukee, WI.  I know the costs would be well more than we can afford without winning the lottery, but I had to inquire.  They were very nice and wrote back to me to send down my MRI and reports and they would review them and let me know if I need more testing. They ballparked a surgery cost too - $75k to $100k US.  Anybody have some extra pocket money lying around??  I will apply to OHIP for preapproval to see if I was to go to the US if they would cover any of the costs.  I see my family Dr. on Thursday to see if he will agree to sign the request.  Wish me luck.  IF I'm preapproved I would like to at least have the opinion of a true Chiari specialist - Dr. Dan Heffez - who coincidentally trained in Montreal.

I had to make a tough decision this week as well.  I had to give my notice at the pool.  Just teaching the one aquabics class a week leaves me with a headache for anywhere from 1 to 4 days.  It's just not worth it for the 45 minutes and $19.  When I'm better, after surgery and recovery, I would love to go back to teaching.  It has been a big part of my life - taking it for the past 14 years and teaching the past year.  I am still going to yoga on Sunday mornings until Christmas - it's free with a donation to Christmas Cheer and they are all easy, beginner classes.

So, time, a little more of it, will tell what OHIP says, and whether or not I can pursue going to Milwaukee for a consult.

Saturday, November 21, 2009


This morning there was another heavy frost.  As the sun came up through the trees they glistened like Christmas ornaments.  It was beautiful.  But the sunlight on my face brought me back to the painful reality of another Chiari headache, now day two.

I'm trying to put everything into perspective.  How much my headaches are affecting my life, how much work or activities I miss, and whether or not the headache was brought on by exertion.  I went through my journals from 2006 through now.  There were 38 months worth of entries.  A good starting point.  So I averaged everything out.

Over the course of 38 months, I average 7.6 days of the month with a headache.  I missed 1.5 days of work or activities per month.  And exertion is a cause of at least 1 - 2 headaches a month....  And those exertion caused headaches may last several of those days.

So, in perspective, I average over a week out of every four in pain over a 3 on the pain scale.  Now, don't get me wrong, that's far better than a lot of people that I've met or read about.  But when I have a headache the pain is bad enough to wish for the surgery.  And when I don't have a headache, I don't want to have the surgery because of the risks involved.

I've faxed a few further questions to Dr. Gentili's office to get a few more answers I need to make my final decision.  I've had some interesting feedback about surgery in Canada vs the US.  I've also e-mailed another doctor to inquire about an assessment in the US.  This is very very very preliminary.  I'm information gathering still.  

I'm still researching and thinking...

Friday, November 13, 2009


I love history, ancient history - Egyptian and Roman especially.  If  it's not 3000 years old, I'm not that interested.  I read about it, watch documentaries, and google for new discoveries found in Egypt.  While in TO we walked past the Art Gallery of Ontario.  We were 19 days too early to see Tut, so I took pictures of me with his poster instead.  Cheesy, I know.  But if I was there on Nov 24 when he is, I'd be foregoing shopping to see his treasures for sure!!!

Outside the AGO was a great status of Anubis.  I was in heaven, for an entire city block!
Other than history, I enjoy a wide variety of things:  riding motorcycles, reading, crafts, cooking, baking, taking and teaching aquabics, and being with my family and friends.  There is no one more important in my life than my family.  I'm blessed with a loving husband, great mum, my brother and his family, my grandma and papa and my mother-in-law, sister-in-law, and brothers-in-law.  (God bless my father-in-law, we miss and love you!)  My best friend Ruth lives 1,600 km away, but when we're on the phone together and when I traveled to visit this summer, it was as though we haven't been apart a day.  My husband and best friend share my love of motorcycles and are part of the reason I ride.  In fact my bike was bought from Ruth.  Unfortunately this summer I found it harder and harder to get out on my bike.  Some days just getting it off of the patio was enough to drain me and then to ride, I was exhausted.  It was disheartening.  I may only ride a hundred km at a time, but this summer I even found that hard.  I noticed the strain in the back of my neck, my shoulders were tighter than usual, my hands went numb quicker than normal, and after riding I was a limp dishrag.

My other activities are somewhat affected as well.  Work, crafts, aquabics, cooking, baking, even housework depend on how I'm feeling that day. There are plenty of days I'm fine, I can do everything.  But if I overdo it, I'm often in pain, or in bed, the end of that day or the next.  And I hate it.  I'm very independent and to not be able to do the 101 things I'm used to doing by myself is taking it's toll on me.

I still haven't made up my mind about surgery.  I've been reviewing my journals from 2006 through now and I'm trying to make a list showing how many headaches I had per month, whether they were induced from exercise or activity, and whether or not I had to miss work or an activity.  I didn't keep as detailed a journal about my headaches as I do now, but there are lots of references to migraines but at the back of my head, pressure and pain after working out or working in the garden.  So it is there.  Some details of the Chiari even before my diagnosis this summer.  Unfortunately, I don't have journals prior to February 2006. Or I could have had a larger data pool.

On days like today, where I had to leave work at 1:30 and crawl into bed at home with an ice pack, I want to have the surgery and make it all go away (hopefully, God willing!!).  But when I had such good pain free days on Monday and Tuesday, I don't want the surgery because I don't want to have any complications or be any worse thereafter.

I'm still weighing my options... Think...think...think...

Friday, November 6, 2009

And the surgeon says...

Well, my appointment with Dr. Gentili at Toronto Western hospital went well yesterday.

Hubby and I flew in and walked up to the hospital, stopping along to the way to drool over some Ducatti motorcycles and Lamborghini's in a shop along the way.

Dr. Gentili's fellow did an assessment, very basic history and viewed my MRI.  The  assessment involved the usual - strength, balance, eyes, ears, throat.  He even checked my gag reflex as lack thereof is a sign of Chiari and more serious problems.  He was very nice, fairly thorough, and answered our questions. He was intrigued by my knowledge of my own brain as I was able to identify my Circle of Willis and my Chiari herniation from the MRI.  Said I had obviously been on the internet, to which I replied, it's my brain, I want to know as much as I can about it. The is no sign of hydrocephalus or syrinx and there is still just enough room for my CSF to flow between the herniation and brain stem. The fellow was of the opinion that I would not need surgery. 

Then came in Dr. Gentili.  A middle aged doctor with graying temples, a nice handshake and an odd taste in footwear.  He reviewed briefly what the fellow had discussed with us and looked at my MRI.  He asked about my symptoms.  How many Chiari symptoms did I feel I had - 6 to 8 of the approximately 30.  He figures 5 or 6.  Not a bad guess on my part.  We talked about the clinical aspect vs the symptoms of Chiari.  Anatomically I have Arnold Chiari Malformation.  It is not progressive, in that the herniation of my cerebellar tonsils will not increase or worsen.  Then we talked about my symptoms.  Were my headaches triggered by anything in particular? Straining, lifting, coughing, laughing, posture, etc.

Dr. Gentili said he has done surgery on people with less, the same and more of a herniation.  The big question he asked: 
How did I find my symptoms affect my overall quality of life? 

Surgery, he said, would be based on how I felt my symptoms affected my overall quality of life.  When the quality of life diminishes, then surgery is warranted.  The choice was left up to me.  Do I want to go ahead with surgery because the symptoms I experience are affecting my quality of life, or do I wish to wait and see how my symptoms progress.  He said he would operate, late spring likely, should I decide.

Dr. Gentili also asked why I came to Toronto Western.  I replied that he was highly recommended, my family doctor had had surgery at TW and my sister-in-law's friend had recently undergone brain surgery for a tumor and she couldn't speak highly enough about the care.  And I said although I am confident in Dr. Haq's skills, I am not confident in our local hospital system.  Dr. Gentili diplomatically said that he knew Dr. Haq and would not comment, but understood my choice to find a hospital with an actual neuorsurgery department.

Dr. Gentili also advised me about the risks of surgery.  Infection, CSF leak, meningitis, stroke are all very low risk.  As they are not interfering in the brain itself, the decompression surgery is fairly basic in terms of brain surgery. It is not like the removal of a tumor where it has attached itself to my brain and they are removing it.  The will open the back of my skull, remove a portion of bone, open the dura, remove part of the horns on C1 vertebra, possibly C2 as well, use a dura patch from my thigh, and stitch me back up with a bigger space from my brain to live in.  2 to 3 days in hospital.  He said 2 to 4 weeks minimum off of work sometimes up to 8 weeks, depending on the person and if any complications arise.  Full recovery in 6 to 8 weeks but can be as long as 6 months with complications.

So, I didn't get the cut and dry answer I was seeking.  I am still undecided on whether or not the have a 6 - 8 inch zipper (that's what the incision is called) in the back of my head and the decompression surgery performed.

I'm going to take until Christmas and monitor my current symptoms more, review my journals from 2006 to now as I have tracked headaches etc. since then.  And think, think, think.  Like Winnie the Pooh - think think think...

Monday, November 2, 2009

3 More Sleeps!!

Is it bad to be excited to see a doctor?  Especially when your brain is involved...

Well, I am excited and hopeful for some answers when I see Dr. Gentili on Thursday at Toronto Western Hospital.  I received a confirmation phone call today from his assistant confirming my appointment time.  When you have to fly 2 hours to the appointment, you'd better be sure the doctor is going to be there!!

Hubby and I will leave on the 6:45 am Porter flight to Toronto City Island and that lands us around 8:30 and only 2 km from the hospital.  I've already looked up the street car schedule for Bathurst St. and it runs about every 10 minutes.  So we can hop the street car if it's miserable weather.  Otherwise, I'm not opposed to walking.  I walked almost 5 km to the bus depot from Union Station toting my luggage in July.  I can definitely do it without the luggage in tow!!

My appointment is for 10:30 and hopefully the doctor won't be too far behind.  I'm anxious to know what he thinks.
 - will he perform surgery?
 - is this a now, or wait scenario?
 - are there more tests which should be run?
 - if he were in my position, would he trust him to do the surgery?
 - how many Chiari patients has he treated?
 - overall prognosis?

And I have a few more written in a notebook I'm taking along with the MRI disc.

I already couldn't sleep last night so I can just imagine the next three nights I won't get much sleep.  But I'll plug into my iPod and listen to my hypnosis if necessary.  I'll update once I'm home from the big city!!