Chiari Malformation help

[Moll-C]

Hi. Completely new to this tonight. Just looking for others who have Chiari Malformation. I had decompression surgery 6 years ago. I’m still not right. Feeling like there’s no light at the end of the tunnel... anyone else completely recovered from Chiari? Thanks in advance for any replies xx

[PRINNY66]

Hi moll sorry cant help as had no surgery,was diagnosed with syringomelia about 25 years ago,,,just saying hi to fellow suffer,,happy to message if it helps not many of us about

[Moll-C in reply to PRINNY66]

Hi aw I so glad to speak to someone who’s got Chiari! Thanks for replying to me. Do you mind me asking why haven’t you had the surgery? Xx

[PRINNY66 in reply to Moll-C]

Hi moll

long story why no surgery,,I've been out today in my wheelchair,,I only get out 2-3 times amonth,,if like to message some more maybe in the week when your free??

[Moll-C in reply to PRINNY66]

Aw yes that would be great! Just message me when your feeling able too. Hope you’ve had a nice day out today. Rest now (I know how tired you must be). Speak through the week

[James_BSF]

Good afternoon Moll-C,

We're really sorry to hear that you're still not feeling right since surgery.

Are you aware of our private Facebook group for people with Chiari? A link to the group is here - facebook.com/groups/ChiariG...

'Chiari Malformations Group - A Space For You' currently has almost 500 members who may be able to offer useful information.

Our website includes some personal stories from people with Chiari - brainandspine.org.uk/suppor...

The Brain & Spine Foundation also run a helpline for people affected by any neurological problem: The number to call is 0808 808 1000.

Thank you and I hope this has been of some use to you.

All the best

James Matejka

Digital Communications Officer

Brain & Spine Foundation

[Moll-C in reply to James_BSF]

Hi James I’m not on Facebook thank you so much for your message. Is there any other ways I can chat to the people in the group? Thank you

[James_BSF in reply to Moll-C]

Hi Moll-C,

Unfortunately our Chiari Facebook group is private so you would need to create an account and join the platform to engage with the members. Once your account is made it's very simple to join - you would be asked 3 questions so that I can approve your request. The link is here if you are interested in doing so - facebook.com/groups/ChiariG...

Because of the rareness of the condition, I am not aware of any other active online support groups for Chiarians. I have searched for one outside of Facebook but I had no luck I'm afraid.

Our helpline team may also be able to answer any questions you have regarding the condition.

Thank you and please let me know if there's any other way I can assist.

James

Digital Communications Officer

Brain & Spine Foundation

[Moll-C in reply to James_BSF]

Thank you so much James. I think I’ll sign up to Facebook as like you said there’s no other groups anywhere. It’s so hard to find anyone with Chiari. Thank you again I appreciate it

[Jenny1966]

Hi unfortunately there is no cure for chiari, decompression surgery is to help ease the symptoms

[Moll-C in reply to Jenny1966]

Hi Jenny yes I know there’s no cure for Chiari, I wanted to chat to someone who has Chiari.

[FrenchEmm]

Hi Moll

I am also newly diagnosed with a Chiari malformation so thought I would pop by and say hi!

Feel free to get in touch if you want to chat.

Emmanuelle

[Moll-C in reply to FrenchEmm]

Hi Emmanuelle. Thanks so much for your reply! I was diagnosed 2011 and had my operations 2012. How are you feeling since being newly diagnosed? Hope you are ok 😊

[FrenchEmm]

Hello Moll and nice to meet you!

I am ok but it has been a bit of a rollercoaster of a year!

I was diagnosed about 4 months ago (Chiari Type 1) at the same time as getting an aneurysm diagnosed so the combination of both is not helping!

The CM is giving me lots of weird head/Neck symptoms (headaches, neck pain, vertigo etc...) and every time something happens I have this worry it could be the aneurysm, so this makes it harder to accept/manage the symptoms.

I am having the aneurysm coiled in a month so I am hoping it will be easier to live with the Chiari once this worry is gone, so for now I am not thinking of having the decompression but we will see afterwards...

How was the surgery for you? did it help at all?

Hope you are ok!

Emmanuelle

[WINNY1]

Hi Moll-C

I had my decompression surgery 7 years ago and still have episodes. Technically they say everything is OK but there are many more days that it doesn't feel OK. I see a neurological physio once a month now to manage my head and neck pain, which helps but coping with the fatigue is a day to day battle. Feel free to ask any questions.

[Moll-C]

Ah hi Winny! Thanks for your reply. Aw sorry to hear your still having episodes. Can I ask how was you referred to see the physio? I’d love a bit of physio I always feel like my neck down to my shoulders are aching. Still don’t think my neck muscle is fully recovered from the surgery even though it’s been years. Hope you ok. Big hugs. X

[WINNY1 in reply to Moll-C]

Hi Moll-C

Thanks for the hugs xx 😊

My neurologist referred me originally, but I don’t think that you necessarily need a referral to go there, unfortunately it is private but after a course of intense physio, I now only go once every 4 weeks, still expensive but worth it. I have visited a few physios since my surgery, but these are far the best. If you send me a private message (I think you can do that on here?) 😊 then I can provide you with the details.

I find that very few specialists understand the post-surgery effects that can happen after decompression surgery, so it is good to have this forum and find people like yourself who understand that with Chiari, you have to live a different kind of normal 😊

Even though I am sure my friends would say that my different kind of normal is nothing to do with my surgery! 😉

Big hugs xx

[Fox1]

Hi moll, I’ve just found your post after googling our condition! I was only diagnosed with chiari 2017 after suffering really bad headaches. I’ve not had surgery as I’m not deemed bad enough symptom wise - I feel terrible most of the time but as people have never heard of chiari I don’t tend to mention it 😩, even family don’t seem to understand. I take prescription painkillers daily. Why do you still feel bad years after decompression surgery? I was hoping that when I can’t take it any more I could request the surgery and it would help. Hope you’re feeling ok, em x