Ottawa resources, neurosurgeons, tests, etc.

[Milauran]

Hi All

My son is 26, has been experiencing symptoms for 3.5 years, been to every health professional imaginable (same story as everyone else I'm sure) and had every conceivable treatment. I'm sending this email rather than him because he can't spend any time on the computer or sitting doing anything because of neck pain. He is basically unable to work accept part-time in a job that doesn't involve sitting or bending his head forward. He was in the middle of his Masters program and had to quit.

He has finally had an MRI which basically said, low lying occipital tonsils and crowded foramen magnum, no measurement of protrusion. He's been referred to neurologist Dr Sitwell and has an appointment in April.

We're trying to get as much info as possible prior to the appointment and he's even considering going to the states to get a 3D MRI so that he can go with that in hand when he sees Dr Sitwell and hopefully save some time.

My questions are:
1. Can you get the necessary tests in Ottawa where they actually measure the protrusion and if so what type of test is it, where did you get it and how long did it take to get an appointment? Our concern is that if he doesn't have the magic number of 5 mm protrusion, that he won't get the diagnosis and therefore not be considered for surgery. In the states, they seem to be more willing to consider symptoms and not base treatment on a number. Someone mentioned a CINE MRI, is that available in Ottawa? He doesn't appear to have any other spinal cord issues, no numbness, mainly neck, shoulder and head pain and dizziness.

2. In Ottawa. what was the name of your neurologist and neurosurgeon?
3. If he sees Dr Sitwell in April with the MRI results he has which are vague, what other tests is he likely to have to go for and how long does it take to get them?
4. If you were referred to a neurosurgeon by your neurologist, how long did it take to get an appointment?
5. Does anyone know if you can be referred directly to a neurosurgeon by your family doctor? (if he was to go to the states and get a definitive diagnosis and tests confirming spinal cord compression it would save time to by-pass the neurosurgeon)

A lot of questions I realize, this process is so frustrating in Canada.

thanks so much!

[cminor5]

Thanks

[selmaS]

  Good Luck <3

[cminor5]

Ok thanks, I have my apt. tomorrow with the NS for a 2nd opinion. I have a lot of questions for him. I will let you know what he says.

[selmaS]

  This should show on a brain or cervical spine MRI...ur surgeon should have noted a RO after viewing ur MRI...if not he may not have found that to be an issue for u,....some refer to over crowding and RO as the same thing, some do not....but it is what I refer to , as that is how my NS did.

Over crowding can be part of the cerebellum pressing on the brain stem....so, it can indicate a few things...it can depend on how tight things are at the FM....

As I have mentioned in other threads, the herniation can be very long, but thin and not obstruct CSF ...and it can be very small but wide and cork things up....so a small herniation ca be overcrowding things inside as well as out....

I am sure if ur NS is well experienced with Chiari and ALL related conditions he/she will inform u what is meant by ur DX of overcrowding.

[cminor5]

Sorry for the late reply, so basically I need to ask my surgeon to check me for the retroflexed odontoid, as I have the over-crowding? Thank you for the information and replying. Do you know how they would be able to check for this or what MRI is needed?

[selmaS]

  The best way I can explain this is for me to tell u the way my NS explained it.....take ur right hand and the thumb and ur pointer finger and make a circle with the 2.....slide ur pointer finger so the top knuckle of ur pointer meets with the one on ur thumb,....now take the pointer finger on ur left hand and from the bottom up finger nail away from u point at urself stopping when the top knuckle can bend and sit on top of ur other 2 fingers.....u will see there is room behind this ringer poking thru the other 2 encircling this one....now slowly rotate the finger in the center see what happens to that space....

The finger in the center represents the odontoid....now imagine the tonsils in there as well....and if the bone is higher then what I said to do, this as it is turned can also compress the brain stem as well as make this opening smaller and  tighter.

[cminor5]

Selma, you have mentioned about the over-crowding is more of an issue withing the foreman magnum, than having a herniation of the tonsils. I did not realize this. How can the over-crowding have to do with retroflexed odontoid? I just read up on tretroflexed odontoid and this has to do with the bone being bent backwards.

Thanks, Christina

[Fredcat]

Hi
Where do you live in Canada?
I live just outside London ,Ontario and am now going to St Mikes to see neurosugeons there. Due to worsening fo chiari symptoms. No one in London knows anything about it here.
Bonnie

[mimosa7]

Hi... Your son sounds like my male twin. Sleep paralysis to a point I cannot tell if I jerk awake 5x at night feeling CSF move in my head from standing up suddenly or if I am dreaming from googling symptoms right before bed... :x Honestly...

My headaches are all intertwined ranging from posture to sinuses and mainly unilateral.  My neck pain is unilateral and coincidentally on the side where herniation is smaller.

I realize a lot of posts are > year old but I'm also from Canada and would love to know how far in this quest you've gotten sigh... I hope he's doing better!!

M.

[Milauran]

That's very helpful Selma, thanks so much!

[selmaS]

  Hi..working from the bottom up...yes, some have mentioned sleep paralysis, but that is more to do with REM sleep then chiari but all sleep is affect by the chiari....so it is a catch 22.

For those with chiari we are told when using a computer to raise the monitor up so it is at eye level so we r not bending our heads down to look ...same thing reading a book we should  also lift the book up to eye level.

As for playing soccer could be he doesn't want to admit how he is feeling or accepts it as "normal"....head butting the ball is not safe and this sport should be reconsidered.

As for riding his bike, I pray he wears a helmet and that it is not one where he is bent forward and all weight is put on his shoulders and neck....again at some point this will affect him.

The fact he only has dizziness now is a good thing, but if he continues with activities that can trigger the symptoms to increase....not so good....

U really should get s CINE MRI and make sure he does not have an obstruction or a syrinx .

Unfortunately we do have to avoid certain activities as they can lead to more symptoms...to avoid surgery and an increase of symptoms this is what is suggested.

  When I was first dx'd I thought they must be wrong I don't have all these symptoms, but as I realized that how I felt after certain activities was not normal even tho it was normal for me...we are born with this so we become accustomed to feeling a certain way and we just expect it, and do not think of it as a symptom....plus the verbiage of the symptoms do not really sync up with how I would describe them....

  So do not go by how many or few symptoms he has, get him checked by a Chiari dr and see how this is affecting his overall health.

   "selma"

[Rylanesmom]

My original MRI simply said chiari 1 malformation.  I called and asked them to reread my MRI and include the degree of tonsil hurniation per chiari specialist.  They amended and I picked it up 24 hours later:)

[Milauran]

Thanks Selma that is helpful. I have one other question if you don't mind. My son's symptom are mainly positional  from sitting and having his head bent in any way, they are mainly headache & neck pain radiating to shoulders. He has some dizziness but nothing other than that. He can play soccer and not experience and symptoms or ride his bike. The pain is almost always triggered by sitting and watching tv, working on the computer or reading which basically means he spends most of his time standing around.

Does that sound to you like it could be CM considering there are no other symptoms? Also, I know sleep apnea can be associated with it but have you seen anyone mention sleep paralysis?

Thanks!

[selmaS]

  U may have to travel to get to a Dr, many of us do...other wise  u get frustrated by Drs that have no idea and keep brushing u off.

But, ur report did indicate overcrowding...and that is more important then the measurement...too much is placed on the herniation, and a long herniation can play no role at all in symptoms if it is thin...the issue is , is there overcrowding and  an obstruction....for u Yes .

  So how long the herniation is is mute at this point. That magic number of 5mm herniation is an old way to determine chiari, a true chiari specialist will take note of the overcrowding even if the measurement is less then 5mm....some will not if the overcrowding is not present.

   This is the biggest problem as there is not a consistent criteria that is followed.  

     "selma"

  

[Milauran]

Hi Selma

Thanks for the info. There are no Ottawa doctors on the physicians list. Also the MRI report didn't say there wasn't any protrusion. It just didn't indicate if there was or what the measurement was.

[drewlevas]

I'm in Canada and my general doctor transfered me directly to a NS. I saw him within 3 months after my 2 MRI.

[selmaS]

  oops...forgot to add the link to the Drs list....love chiari brains...lol...

  http://www.medhelp.org/posts/Chiari-Malformation/CHIARI-DRS-LIST-CANADA/show/1270605

[selmaS]

  Hi and welcome to the Chiari forum.

I do believe u should be able to get a CINE MRI in Canada....where exactly, I can not say...but we do have a list of Drs for Canada that u can use to research Drs to find one that is a true chiari specialist.The list is not a referral, and not all Drs on it are chiari specialists, these are the names of the members Drs and if they were happy with the treatment they placed the name on the list.

  I have a question for u, it sounds like ur son may have a retroflexed odontoid by the fact it says " crowded foramen magnum, no measurement of protrusion." This indicates Chiari 0 and the crowded area is a big indication  it is the odontoid.....make sure u find a Dr that looks at that too!!

    If u can afford to bypass ur Drs in Canada to come to the US, all u would need is copies of the MRI to send to the Drs for review...some charge a nominal fee, some do it for free.

    "selma"