Welcome to Chiari Blog
Wed, 09/09/2009 - 09:52 | 
Chris 
Hello and welcome! If you want to know more about Chiari Malformation (kee-ahh-ree) and Syringomyelia (see-ring-oh-my-eehlia), then please feel free to browse through the menu's and read through the posts.
To navigate around the site easily, use the menu items up at the top by left clicking them. Once you have read a post, either use your browers "back" button, the menu button or the "Home" button on the site to take you back to the home page.
You will find other links to other items that maybe of interest at the bottom of most posts.
If you are a visitor, please think about signing up as a user. NO information is collected about you at all, not even your email address. This just enables the site to show your name when you are on line. This also enables you to post comments and join in the polls from time to time.
I have had to add into the signing up process a little security script which asks you to type in a series of letters and numbers. This is to stop those moronic attempts by bots and hackers to gain access and then comment spam or post malicious blog entries that are not only annoying but spoil the whole experience.
The process is just to confirm to the blog that the person trying to access is indeed a real person searching for information. I do hope that it spoil your enjoyment or put you off signing up.
If you would like to register at the site to receive newsletters and regular updates, then please fill in the form at the bottom of the page. Again, NO information will be retained about you apart from your name and email address so that we can send you out the emails. None of your details will be shared with anyone else or passed on. It is not my intention to subject any of our members to the current levels of spam currently going around the internet. All of your emails will be Chiari related.
Thank you very much for visiting us, and hope that you find the information in here of use.
Please also read the medical disclaimer at the foot of the page.
If you choose to Subscribe, then you will be entered into our free draw for 2 weeks accommodation in Lanzarote in 2010. Please see the attached post for more details.
Other links that you may find interesting:
My Own Story
Does Chiari and Syringomyelia affect everyone in the same way?
Chiari and Syringomyelia Symptoms
Glossary
Win 2 weeks free accomodation in Lanzarote!
Hi Chris, as you may be aware I am new to you blog site and not very computer literate and have speech activation so am really just trying to find my way around. I really need some advise as am suffering at the mo and not quite sure whats happening to me.
was diagnosed with type 2 chiari 1997 when I lost my sight overnight in (R) eye. They told me it had nothing to do with chiari, then lost sight in (L) eye 2003. this last 6 months I have been having really weird symptoms of vertigo, earache,more sight disruptions, pressure in eyes and head and was wondering if these sound familiar.. Also cant stand bright lights or loud noises. Sounds daft don't it being blind and partially deaf to have these goings on. seeing a Neurosurgeon at Queens Med in Nottingham and going for pre op next week for trapped nerve in vertebrae the considering decompression op and carpel tunnel. Not sure whats happening to me and very scared
wend
Hiya Wend! lovely to meet you and thank you for visiting the blog.
Gosh, I really don't know where to start, other than I can try and help as much as I can.
I really am not medically trained, nor do I have any experience with type 2 chiari, although your symptoms do have lots of similarities with Chiari type 1.
I can understand you being scared at the moment with everything that you have going on. I must admit, that even in my position, I was also once at that stage, thinking how scary the whole situation was, but then I found a great neurosurgeon, I replaced my scared head with a more practical one and have thankfully come out of it in a lot better position.
Everyone goes through the scary moments, but thankfully in my experience they do not last too long. I think its the anticipation more than anything, and the uncertainty that some GP's leave us with as they are not fully clued up. I do hope that you can manage to work through the scary period that you are in, and am sure that your visit to the Neurosurgeon at Queens will help you to do that. my first visit to my Neurosurgeon had that effect on me to be honest.
Let me address your symptoms as far as I can.
Personally I have had very few sight symptoms, although have had a few visual tunnels if I lay in bed in the dark using my mobile phone to surf the net when the insomnia kicks in.
I have however heard of friends with Chiari type 1 that have had temporary loss of site in one eye. I do know that Chiari can have that effect, but as you may be aware everyones symptoms can be so very different due to the differing levels of pressure on particular nerves and levels of nerve damage that it can cause. most of them have also reported floaters and flashing in the eyes at times.
Vertigo and balance issues seems quite common in a lot of people as the cerebellar is the part of the brain that controls things like that. I have had earache and fluid in my ears that has not been cured by taking 3 lots of antibiotics on the bounce, yet cleared on its own after about 5 weeks.
Pressure in the eyes and head, yes that is a definite common symptom also. Do you get the headache that is also so common?
You really are going through it at the moment, but can see that you have treatment lined up, therefore are definitely pointed in the right way.
With reference to carpal tunnel, I do know that there are definite similarities with Chiari symptoms / syringomyelia symptoms that can present themselves in the same way as carpal tunnel. I have two relatives who had carpal tunnel surgery, and had the same symptoms as I did with regards to loss of mobility and dexterity. So it might be worth double checking that diagnosis on the face of it, just to be sure its the correct one.
The only thing I can add is that I know of lots of positive success stories regarding decompression surgery, and that chiari need not have an awful prognosis any more. My own decompression surgery has been an absolute success in that my chiari will not progress. Unfortunately I have a lot of residual nerve damage from my syrinx which has added to the complications.
Other than the above, there is very little that I feel that I can help with, other than offering you my support, and a promise that I will look farther into Chiari type 2 this evening myself, and look for a group similar to those that I belong to that may be able to offer more practical advice for you.
My understanding is that the two conditions are very similar with regards to symptoms, yet the surgical procedure to treat the condition is different in that the tethered cord needs to be addressed first, as this is the mechanic behind dragging down the spinal cord et al rather than there being a herniation due to the malformation of the posterior fossa.
I really do hope that this helps a little.
I will send over my mobile number my email if that's ok? If you need to ask any questions and would prefer to speak or even text if you have that functionality available, then I would be more than happy to talk with you that way. I can be a good listener at times, and would love to pay back the time that so many others spent with me doing just the same when I needed it most.
Apologies for rambling on a little.
Thank you so much for getting in touch Wendy.
Speak soon and take care.
Chris
Thanks for this Chris, I am really glad I found your site as with all I expect they feel a bit alienated as no one seems to know much about our condition. I collapsed last May and was rushed into local hospital, they were going to give me a lumba punture but my hubby told them about my Chiari and they had never heared of it so they said they was going to GOOGLE it!!Not got much faith in hospitals at the moment but glad to have someone to talk to about how I am feeling
cheers
wend
Absolutely no problems at all, and no need for thanks either. It does me a lot of good doing this blog, it helps me think things through and get them clear in my mind. It also enables me to research Chiari a little easier too as I learn so much from other people that I meet. The big bonus is also that I meet amazing people just like you, and am proud to say that I have a large collection of friends online who all understand each other and between each other we all share a strong and common bond.
Chiari, or rather Syringomyelia has stopped me from returning to the work that I used to do. I can no longer drive 40,000 miles a year to make sales presentations and administer coaching and training sessions - However I have found that I can use the skills that I have learned from web site building and now have 2 projects which will possibly turn out to be far more lucrative than my previous career. The benefit is, is that I can now work from home and I will be my own boss.
Great things sometimes come from a run of bad luck.
I am so glad that you found the blog too, you are an inspiration and really hope that your surgery brings with it a lot of new hope.
Keep in touch, and remember if hubby needs any help too, then the blog is here for him too.
There's actually a really good forum connected with Chiari, however all of the members suffer with Chiari 1. I am sure you would benefit from becoming a member and joining in. They are a great bunch of people from a wide ranging back ground, at different stages of diagnosis and treatment. Above all, they are all very supportive and have got bags of energy which is only surpassed by their ability to offer support and advice naturally.
http://www.chiari.co.uk/chat
Hope to see you there?
TC
Chris