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Old 04-24-2008, 10:29 PM   #1
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Unhappy Can you offer any information with Arnold Chiari Malformation/ Dandy Walker Variant?

Dear All,

I am a (generally) healthy 28 year old. have recently had a CT scan of my brain following a fall (faint) which involved me hitting my head very hard.

The doctor who commented on the scan noted 'congenital hypoplasia of the left cerebellar hemisphere and vermis'. Additionally, a 'midline cystic structure in the posterior fossa which appears to communicate with the fourth ventricle'. The report went on to say 'This is consistent with a dandy walker variant'.

From what i've read I find it difficult to believe these conditions are the same or that I have both, so, I'm a bit confused.

My GP has rather urgently referred me to a neurologist with his referral noting 'Arnold Chiari malformation'. I have 2 weeks till the appointment and whilst I am trying not to think too much about it, I like to know what I'm up for. It may be nothing but it may be something.

Firstly, I am wanting to know if anyone has been diagnosed with either condition, and if so, what is the process following the initial consult with the neurologist? (I assume an MRI will be the first step). I understand that this is perhaps a difficult question as there will be various forms and severity of each form.

I have tried researching on the net but only you can give the kind of information I am after.

Any assistance would be very much appreciated as this is proving to be a very difficult 2 weeks.

For those who are interested (sorry if this is boring), my symptoms:

As a child I did not crawl, i had difficulty walking and had to have a lot of physio to build strength. I could not balance, I had both eyes operated on, learning difficulties, motor coordination, bad spine (operated on twice recently).

Now, I have a terrible memory, headaches, intense head pain when standing up from sitting (or if I move too fast), very poor balance (I can just fall over - though generally stop myself before hitting anything), I misjudge corners (walk into walls occassionally)etc.

Sorry for the long drawn out rant.

Thanks
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Old 04-28-2008, 08:03 PM   #2
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Re: Can you offer any information with Arnold Chiari Malformation/ Dandy Walker Varia

Hi Doing my research~

I saw that your looking for some help and know how that feals, for sure. I was just diagnosed with chiari myself, after living with my symptoms for a very long time.

Bumping your head can exasperate symptoms in chiari. Not alot of doctors have an understanding of this condition and you may be told the chiari cant cause your symptoms.

I have been through 2 neurologists and have found my way to New York to the Chiari Institute for answers. There, I found out, I not only have Chiari, but also tethered cord syndrom which is pulling my brain downward. They did a cine MRI which measures the flow of cerebal fluid to the brain. I had a blockage behind my brainstem.

The Drs there said my 1st step is to release my cord. This hopefully will help my lower extremity issues. My next step will be decompression surgery. One step at a time.

I am 42 years old and have led a buisy healthy life. A few years ago, I started suffering with great fatigue, brain fog, numbness and tingling in my legs and poor concentration among other issues.

I then realized someting was wrong and began searching. I had an MRI then a lumbar puncture. The lumbar puncture was THE WORSE thing i could have done!! Truly, it excelerated my symptoms quickly. I now have severe headaches, neck pain, lower back pain, dificulty walking, numbness and burning in my face, vision problems, hearing problems plus so many more.

I hope you find a Dr who is knowledgable in Chiari to help you through this. If I can help, just shout out. Good luck!!~

Cindy

 
Old 04-29-2008, 01:35 AM   #3
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Re: Can you offer any information with Arnold Chiari Malformation/ Dandy Walker Varia

Hi Cindy,

Thanks so much for your reply. I am sitting pretty nervously waiting for this appointment. I have been trying to locate a knowledgable neurologist as It makes me nervous that this may be mis-diagnosed. It worres me more that they have seen two different conditions of the CT. Do you know if they have spotted something on a CT is it possible that something may turn out to be nothing or are these things quite clear on a CT?

Thanks so much again Cindy for taking the time to reply, it makes me feel less alone.

Cheers
Brooke
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Old 04-29-2008, 03:33 AM   #4
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Re: Can you offer any information with Arnold Chiari Malformation/ Dandy Walker Varia

HI brooke~

It is such a long frustrating wait and I feel for you because I've been there myself. But it will be here before you know it. Hang in there!!

My chiari was diagnosed from my MRI and with the MRI there is definately a descending toncil you can see. Just last week I went to TCI and had quite an elaberate cat scan done. This is where they look at the bone structure on the skull do see if its malformed.

But your right. I would say an MRI should be the next step. Im not sure what your catscan read and what it means in medical terminology (The doctor who commented on the scan noted 'congenital hypoplasia of the left cerebellar hemisphere and vermis'. Additionally, a 'midline cystic structure in the posterior fossa which appears to communicate with the fourth ventricle'. The report went on to say 'This is consistent with a dandy walker variant'.)

Have you done any research on these statements? Do you know what they mean? I'm on my way to work or I'd start looking myself. I do know that the poserior fossa is where the malformation in chiari is. Did the report actually say Chiari or was this determined by your doctor? I am surprised because so many doctors don't even understand chiari.


Your symptoms do sound familiiar to me. The Chiari instite has forms on line with a questionaire they have you fill out. When I did this form, I realized all of the things that were going on that I was living with and just thought they were normal. It did help me see things more clearly.

One thing, Brooke, that has helped me cope with all of this is to realize that whatever will be will be. Hopefully for your sake, its nothing. But for me, I went into this whole thing with no blinders on and ready to except what ever they found. This is a difficult attitude but remember, it could be worse.


You take care of yourself and TRY to relax. Keep buisy to take your mind off the matter!! If I can help at all, don't hesitate!! I'm new to this and just learning myself but am here if you nead to vent!!

Cindy

 
Old 05-01-2008, 03:26 AM   #5
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Re: Can you offer any information with Arnold Chiari Malformation/ Dandy Walker Varia

Hi Cindy,

Thanks so much for your reply. I have good news..well better news anyway. I work in the spinal medicine department of a large hospital here in sydney. One of the specialists called the head of neurology and asked who specialised in Chiari, the specialist then called the chiari specialist and got me in next week.

In terms of the medical terminology, I have researched the terms but am trying not to look into it too much just to keep my mind of it for now. The GP and the diagnostition who did the CT both commented that Chiari was suspected, not confirmed. I guess because of this and because chiari doesnt appear to be diagnosed from a CT I'm trying to not think about it too much between now and next Friday. It's affecting my work however which is making me think perhaps I should do my reserach further to at least set my mind at ease a bit more.

I have looked at the Chiari institute website, but ill have another look for the questionnaire. I do know what you mean though Cindy, I too looked at the symptoms and thought, ive had all those for ages and can almost 100% put it down to stress or something else.

You're right and I try to tell myself that regardless of how I deal with this (diagnosis or not) next Friday is going to come around, it's how I get there and what I do from there that's important.

Thanks so much for your support Cindy, Im heading to that website..

Enjoy the rest of your week, i hope in your part of the wrold it's warmer than it is here in Sydney.

Cheers
Brooke
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Old 05-02-2008, 03:35 PM   #6
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Re: Can you offer any information with Arnold Chiari Malformation/ Dandy Walker Varia

Hi Brooke~

It does pay to be in the medical field, for sure!! You got in so quickly while alot of us wait months for an appointment!!

It sounds like your a bit calmer with this post and I'm glad to see that. Stress is something you definately need to avoid. It does us no good at all, just makes things worse. So keep up that great attitude!!

I hope you find answers soon and I'll be thinking of you. Please keep me posted on what you find out!!

By the way, my daughter and I have plans to visit Sidney when she graduates. Its her dream!! I joke around alot that we're going there, even if she has to push me in a wheelchair LOL

Take care~

Cindy

 
Old 05-02-2008, 11:26 PM   #7
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Re: Can you offer any information with Arnold Chiari Malformation/ Dandy Walker Varia

Hi Cindy,

It's great ot hear of people in other countried who'd like to come and visit our remote (big) island. Sydney's great, it's coming into Winter though and I dont like the cold, so i'm looking forward to spring already.

My mum and I sat down and went through my medical history today. I had problems from when i was a little tiny baby with my eyes, motor development, intellectual development etc. That way, I can hand that to the neurologist when we see him next week.

I am very lucky to be working in the field I am in, my office is with the medical specialists and so they are only to willing to help when something like this came up.

I will keep you up to date after next Friday, like I said, im going to try and get myself back on track with work and study commitments, I dropped my bundle a bit when I had the CT, so now I'm ready to focus on my life again and not this scan.

Enjoy your week Cindy, I'll bve thinking of you. Once again, thanks so much for replying to my post, it means a lot to me.

Brooke
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Old 05-09-2008, 11:56 AM   #8
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Re: Can you offer any information with Arnold Chiari Malformation/ Dandy Walker Varia

Hi Brooke~

I've been thinking about you because today is the day you had your appointment, right? Just wondering how you made out!!

I hope you got some great news. Let me know!!

Take care

Cindy

 
Old 05-09-2008, 03:13 PM   #9
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Re: Can you offer any information with Arnold Chiari Malformation/ Dandy Walker Varia

Hi Cindy,

Thanks for thinking of me! Odd story: The neurosurgeon who specialises in Chiari has rooms for private patients and rooms of public patients (public patients dont have to pay for appointments, scans etc).

I was booked to see him yesetrday in his private rooms ($400 for appointment, $800 for MRI). The specialist that arranged the appointment for me managed to get me in to his public rooms next Wednesday so I dont have to pay for the appointment or the MRI (if he chooses to do one).

So, once again I have to wait. I think it's been a good thing in a way because I have completely settled and am hardly thinking about it now. How odd I know. I guess I just needed to process the possibility.

So, a few days to go. I have my appointment Wednesday morning at 10:30am so not far...again.

Thanks so much for thinking of me though Cindy, I will let you know as soon as I know what's going on.

Enjoy the rest of your week

Brooke
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2 x L5/S1 PLIF (2003/2005) for progressive spondylolisthesis

 
Old 05-10-2008, 06:00 AM   #10
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Re: Can you offer any information with Arnold Chiari Malformation/ Dandy Walker Varia

Hi Brooke~

Things definately work out, don't they!! It will be much better to wait the few extra days to save the expense. So thats a good thing.

You sound very content and ALOT less worried and I'm happy for you in that sense. Let me know the outcome of your visit and I'm sending my best wishes your way!!

Have a great weekend

Cindy

 
Old 05-14-2008, 03:10 AM   #11
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Re: Can you offer any information with Arnold Chiari Malformation/ Dandy Walker Varia

Hi Cindy,

I saw the specialist today. He wasn't too concerned about anything he saw but said it's not a dandy walker variant. He has ordered an MRI to have a better look at the suspected chiari. Also to look for arachnoid cysts and there appears to be a collection of CSF in a certain region that may/may not be contributing to the headaches/pressure.

Do you know when they do an MRI to assess the CSF flow do they have to inject anything or is just the scan?

Now here's the real question: I can wait 8 weeks in the public system and have the scan for free or have it next week and pay between $450 and $700. What would you do? My thoughts are to have the scan and be over and done with it. My dad says to wait the 8 weeks as it's not an emergency.

I think if I have to wait 8 more weeks (I will have started a new job and still have this in the back of my mind).

No idea what to do.
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Old 05-14-2008, 03:56 AM   #12
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Re: Can you offer any information with Arnold Chiari Malformation/ Dandy Walker Varia

Hi Brooke~

I know what it feels like to be playing the waiting game and its FRUSTRATING!! Each test, theres a wait then you have to wait for results, then they'll send you for another and another!! Thats just how this whole process is and I feel for what your going through!!

I'm like you. Rather than wait, I'd conncider self pay too. But what you really have to concider is can you aford this in your budget, realistically? It could get quite expensive if you take this route a few times. Its definately a personal decision but I also know how you feel as to wanting to KNOW!!

I am in the same boat right now with waiting. The dr's are going to do surgery because of my tethered cord (which goes along with chiari) but this condition causes bladder disturbances so I have to see a eurologist for a eurodynamics study which has taken me 3 weeks to get. I finally go tomorrow but I'll have to "wait" another week for the results THEN I can scedule the surgery. In all honesty, I've been on this waiting game for over a year now. Hopefully your healthcare system works faster than ours.

The other piece to all this that yes, CFS flow is a big factor. They have a test called a cine MRI which helps them see if the flow is blocked. On mine, you can see that theres little flow behind my brainstem. This is caused from the descending tonsils blocking the flow in that region. I have terrible headaches in the back of my head and its tender to even touch or wash my hair.

Maybe you can ask about the cine MRI. This is a very helpful test. As far as injecting contrast for the MRI, I only had that when they thought I had MS. One I had the chiari diagnosis, they gave me a catscan where they injected dye to see all my vessels in my head and neck.

The one test that can truly help you with the Chiari diagnosis or to rule it out will be the MRI. I think you should decide for yourself what decision is best for you Brooke. Let me know what you decide to to.

Any questions, just let me know!!

Take care

Cindy

 
Old 05-20-2008, 04:23 AM   #13
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Re: Can you offer any information with Arnold Chiari Malformation/ Dandy Walker Varia

Hi Cindy,

So sorry it has taken me so long to reply. One of my patients passed away last week and I have had a tough week dealing with it. She was only 17.

I had my MRI tonight. There was just no way I could wait the 8 weeks (and even then potentially have to wait longer if any emergencies came up). It didnt cost as much as I expected, still not nice but could've been worse.

I feel better now because hopefully it's something I can cross off my list. The less stress the better. It took an hour to do the scan and besides being way to loud was uneventful.

I will pick up the scans and reports Thursday morning and I guess I will have a better idea then what is going on. I see the neurologist again in June 11. I am a lot more relaxed, probably because he was so relaxed. I guess they deal with far greater emergencies and he knows when he sees a scan whether it is or is not a concern.

I will let you know how I go once Ive gotten the report. Thanks so much for listening Cindy, I have very much appreciated your support, you're the only person who understands truly how frightening this has been and I really really appreciate you.

Enjoy your week
Brooke
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Old 05-21-2008, 05:44 AM   #14
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Re: Can you offer any information with Arnold Chiari Malformation/ Dandy Walker Varia

Hi Brooke~

I'm so sorry to hear about your patient. Thats such a young age to have lost her. Right now with all thats been going on is even moreso for you, I'm sure. I hope you can get your spirits up!! Try not to stress because it just adds to our problems. Keeping buisy helps. But take care of YOU!!

I'm glad you decided to go with having the MRI sooner than later. I would have done the same but didn't want to say that because sometimes people financial issues are a big problem and didn't want to encourage a debt you couldn't afford. I'm going to New york for treatment instead of staying local and having better coverage with my insurance but the expenses are the last thing I want to worry about. My health comes 1st and yours should too!!

At least now, its done!! And there was really nothing to it, was there? Loud it is though, for sure!! I'm a bit cloustrophobic so I go in with my eyes closed and wont open them until they pull me out!! LOL

When you pick up the MRI, you can view it on your computer. I did and I could definately see the chiari and descendent tonsils. I can't send any links here but if you do some searching of an MRI of with Chiari and a normal brain, you can see the differance between the 2. The cerrebellam on a normal brain sits up nice and high, kindof straight across. With chiari, the tonsils sit low and if you use a ruler, it will slant down. Did I confuse you? Sorry!!

I'm glad your not feeling stressed about this. Maybe for your sake its nothing and i hope thats what you find out. But even if it is, its something you can live with. Its not cancer, i always say. It could be worse.

I have a 16 year old daughter and yesterday when she was getting ready for school, she told me she is just dealing with so much stress. Our state MCAS testing for high school is this week so I thought this was why she was feeling stressed. So I asked her why and she said "i'm so worried about you mom"

I hugged her and told her that things happen in life for a reason. I had been a single mom of 3 for many years and worked worked worked and didn't have time to slow down and just enjoy my family. Finances came 1st, family was second unfortunately because I only had me. Now that I've been diagnosed with chiari, life has forced me to slow down and initially, I was a mess myself. I now have given up my job and am focusing on my health and I have found my reason. Now I can just focus the next few years with my teen daughter, and just be a Mom!! What more could i ask for in life!! I look at it as a blessing. Sounds strange but I have missed out on so much over the years. Now I'll have the time to spend with them when they need me!!

Please keep me posted Brooke!! And I'm always glad to be here for you. Its a lonely world when we are going through the what ifs in life. Our family and friends just don't get that in sucks us in and we think of it all the time. We need to get things out and be supported when the rest of the world is just carrying on as normal. thats why these boards can be a life saver!!

Any time you need someone to talk to, I'm here!! I got alot of time on my hands now and I'm just glad I can help!!

I'm wishing you good wishes on the 11th!!

Take care

Cindy

 
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