Newly diagnosed with Chiari 1

[Deeza07]

I was just diagnosed Thursday last week with this condition, after having some funny vision issues. Only took 2 days from the vision issues to diagnosis for which I'm extremely grateful. My problem is, my doctor knows nothing about it and I can't get in to see a neurosurgeon for another 5 weeks. I have my CT report here but I have no idea on how to decipher it, and I was hoping someone might be able to help me out.

"The cerebellar tonsils are extremely low lying, such that they extend down to the level of the posterior arch of C1 vertebra."

It then went on to say there was nothing else going on within my brain, as the initial test was looking for other abnormalities.

I'm just unsure as to what this means - I don't know how low the tonsils are hanging, or how low is too low.

Please someone help! I'm not a patient person!

[selmaS]

  Take this however u will, u want a true Chiari specialist not a NS that has done a few of these surgeries...as a specialist is more informed on related conditions and much more experienced.

This can make a huge difference in the care u receive and how u recover, or if u have set backs.

Something to consider.....I went out of state as I saw that it was a specialist I needed....it was well worth it.

[Deeza07]

Yep, in half. I broke both knobbly bits on either side clean off. A plate and 9 screws later and I'm good as new. Sort of!

I've just had an MRI of brain and cervical spine. Bloods ruled out anything else other than influenza A and B.

Just today on my lunch break, I found a surgeon who is experienced in chiari surgeries, so I'm seeing him on Thursday. Considering it took me 2 days of research and phone calls to find him, I hope he's good! He's not a chiari specialist, but I couldn't find any at all in my state.

[selmaS]

  Ouch, in half?  ....ouch....I had a fall and I needed surgery on my knee and ankle as a result...not broken tho I tore the meniscus in my knee....and the ankle was a botched surgery from yrs earlier and needed to be corrected so  PT for the knee was possible.

Have u had more then one MRI? U will need a brain, cervical , thoracic and lumbar spine MRI along with a CINE MRI....and then blood labs and rule out related conditions....it is a lot I know and over whelming, but worth finding out all b4 u consider surgery as many of the issues/conditions can  affect how u feel and heal post op.

[Deeza07]

Thanks for that. Yes, I've had an MRI but the report wasn't ready when I went back to my doctor, so it was done verbally over the phone.

Symptoms include blank spots in vision on and off, constant headache, migraine, constant sore neck, balance/vertigo problems, general irritability, numb/tingling arms and/or fingers.....

Since getting the diagnosis, I've realised it does explain a lot of problems I've been having for years. Even possibly the fact that I somehow managed to fall on my driveway and snap my ankle in half.

[selmaS]

  Hi and welcome to the Chiari forum.

We do have a very small list of Drs in Australia....as with our other lists, u should research ALL Drs and visit a few compare them to find the right one for u.

Also keep in mind u will require more testing to see how ur Chiari is affecting u, the length of the herniation is not as important as if it is  creating an obstruction of CSF....knowing how it is affecting ur overall health and what related conditions u have are all needed b4 u consider surgery.

Here is a link to the thread of Drs in ur country....u may have to travel to get to one as this list is not really a list...it is a few that we have , if u come across not on this list please add them to it for others that come after u.

http://www.medhelp.org/posts/Chiari-Malformation/CHIARI-DRS-LIST-Australia/show/1314732

[LisaRiu]

Hi and welcome to the community.

You have come to a great place for information about Chiari and it's related disorders. There are many people here who have had diagnosis of Chiari malformation and in need of good info. Unfortunately, we hope that the professionals dealing with us are well informed too, but sadly this is not always the case. Even some neurosurgeons are not up to date with it.
May I ask what other symptoms you are experiencing? You said that you've had a CT scan, but have you had an MRI yet? Also you will need an MRI of the full spine too to rule out a syrinx as this is something that some of us have too. There are many other things that you should be checked for too, such as CFS blockage, Elhers Danlos...
I was diagnosed with CM & Syrinx in 2009. I have not had surgery, but being monitored by a neurologist who knows of CM but is not a specialist. It is very important to find a NS that is a specialist in CM, especially if you need to have surgery, but generally, it depends on other symptoms and whether there is a blockage. I suffered for years before I finally got my diagnosis and even then, it is an uphill battle to get any understanding from the professionals that are not up to date on CM. I am currently awaiting a referral to a Rheumatologist for problems i have with my joints......problems i've had for years but my gp never had enough time to really look at. Not being believed is also a problem i have encountered too.
I hope you find a good CM specialist who can give you all the answers to your questions. CM is a life changing diagnosis and you should try to find out as much as possible about it in order to understand why it affects us in the way it does. Also, get copies of all your scans and reports too. Selma is a fountain of great information & knowledge and I'm sure she will make contact here soon.
Lisa

[frankie_rush]

Good Morning Dee,

Patient is a viture.  Since it is 5 weeks and that is the only one.  It will be best to wait and see him.  I know it will be hard but it is worth it to make sure you get it right.  This is one you do not want to rush.  Chiari will teach patients,  cause you are better to do it nice and easy than fast as you can.