Living with Chiari

this blog is about living with chiari and my day to day struggles.. the aim of this blog is to help other chiari sufferers out there!

[@hollydavis5192]

Hi I just was diagnosed with Chiari. my pcp thought I was nuts. but I'm glad to hear I'm not alone. stay strong.

[@shelbythompsoon]

Same!

[@sharonmather5196]

My daughter has just been diagnosed with this about a hour ago. She didn't realise she had it because shes had it all her life it's become second nature to her. Thank you for sharing this with us x

[@shelbythompsoon]

Sharon Mather good luck!

[@deniseraffill5444]

So grateful for this video. Thanks for uploading. I’m seeing a neurologist tomorrow after an incidental finding of this for something else. How are you now? How was the surgery?

[@maelawver9592]

It makes me so emotional knowing someone else goes through the pain I go through. I'm 16 and was diagnosed with a Chiari at 12 but was told I outgrew it at 13 and was told there was a possibility that it would come back because of my cerebral tethers. It recently came back and my doctors are looking at doing brain surgery again and it's so hard to deal with. I hate that people have this

[@danielleparker6949]

Mae Lawver hello hun I’m so sorry it’s taken so long to reply, I got locked out of the account years ago and I’ve just been able to get into the account. You are so young. You are very strong, how are you coping? Xxx

[@shelbythompsoon]

Hi

[@shelbythompsoon]

Gosh, I found out at 22 (can’t recall) after I blacked out and was thrown in jail for dui . I didn’t remember it at all and I got a scan lol and they told me I’ve got it. I makes me emotional. I’ve been told I’m fine though. I had to like go to jail, and go into 12k debt and lots of other stuff. But I’m fine even though I’m got. I can live on with it. And I go with that. I think deciding on a decision lifts the heavy veil. Good luck. Mae. Does surgery bring you more enjoy or does none.

[@magicalindigoadult3838]

Yea I thought god knew how to make us

[@bhupatbhaikarmur7038]

@@danielleparker6949 mem chiari malformation surgery success full help me

[@koolpacific]

God bless you! ❤️

[@abalesky]

I was just diagnosed with this today by accident went in for an ear infection they gave me an mri and here we are. It explains my years with horrible headaches and now i have numbness in my hands. Im so nervous. Are r youbdealing

[@suzzanimalchannel1030]

abalesky I just got diagnosed today after an mri, I’m scared, how are u doing now?

[@sophie-pj1fm]

Same I was diagnosed after a Mri it's nice to meet somone else

[@Tenessee123]

I got diagnosed with this 7 years ago after a lot of back and forward trips to the hospital and then got an MRI and found out but after that my symptoms went away almost because I tried not to think about it and I have been fine until 3 weeks ago my symptoms have came back worse than ever and I’m extremely off balance at night and I have really bad headaches constantly...I’m waiting to see a neurologist to see where to go from here

[@Krookedeyezz]

@@Tenessee123 How are you now?

[@kah3773]

Hi Danielle, im also a chiarian from the Uk x

[@Monette7812]

Ive head headaches most of my life theb slowly hut surely more symptoms started. Now at the age of 44bI was finally diagnosed with Chiari Malformation so hooefully now I can get some sort of help for everything this disorder has caused me to have.

[@Cruzdeonnaify]

I like you I was just diagnosed with both of these. My arms hurts so bad everyday from the back of my neck all the way down to all of my fingertips just pain numbness. Like there's no blood flow getting to my arms my wrists my fingers and like there's a rubber band tied around my shoulder that's blocking the blood. And then if somebody comes and hits me with an asp baton really hard. That's what mine feels like both arms. It jumps daily to where the pain hurts worse at and my pinky and my ring finger, some days my thumb pointer and middle finger. Each set of finger are connected to the same nerves. My elbow will hurt and the fat part that is next to it will hurt when I squeeze that it runs up into the front part of my shoulder. I lose balance because my cerebellum doesn't communicate with my left leg. When I get up to walk it pretty much didn't get the memo so it takes me a minute to get up and get my footing. And I usually limp the first few feet. Thank you so much for your video

[@danielleparker6949]

Sorry you're suffering! :( you sound like you going through a terrible time. have you been decompressed? This video was like 5 years ago now and so much has changed.. I will do an update soon :) xx

[@shelbythompsoon]

I have this issue and I play guitar now to connect my mind to my finger tips. Learning music is therapy for this for sure. I recommend bass. It’s a deep sound and reward for the difficult task that’s learning a whole song

[@Cruzdeonnaify]

@@danielleparker6949 I did have a decompression of the cervical surgery about 8 weeks ago. Some symptoms have gone away, the pain in my arms and legs have not. All we can do is just wait. If still the same in 6 weeks going back in for another MRI. Until then Im on some really heavy pain meds.😵

[@bobbiesease108]

after 2 years of my surgery I'm still having alot of problems. like the past 2 days I've been having alot of head ackes neck pain and weaknesses on my left side.

[@conniepine8642]

I have it. Was diagnosed around8 years ago

[@jericgallardo9474]

my son also diagnosed chiri 1. how to know if he need surgery? He has no headache but he has double vision.

[@danielleparker6949]

Jeric Gallardo hello hun, I’m sorry it’s taken so long to reply,, i got locked out of my account years ago and I’ve just got on. I’m sorry you are going through this, sometimes it’s harder for the people watching. Everybody is different to be honest. In my non medical opinion, would be how does he cope? Is he suffering so much he cannot cope? If he can cope then I would hold off on the surgery unless he’s got a syrinx on the spine causing issues? How is he now? Xxx

[@bhupatbhaikarmur7038]

@@danielleparker6949 mem living with chiari problem

[@billieeyelashhh4613]

I'm 12 years old and i was diagnosed with Chiari about 3 years ago. It is a challenge.

[@michelleballes4763]

how are you now and did you do surgery?

[@danielleparker6949]

Michelle Balles hello I’m sorry I never replied, I got locked out of my account. I did have multiple surgeries, all non planned of course lol. In terms of head pains I don’t get any which is so thankful, I very rarely get chiari head pain, once in blue moon I’ve got a cold or something? But I have syrinxes which unfortunately caused me a lot of issues, so it caused me a lot of damage to the neck which caused left sided weakness n pain but over the years I have managed to cope :) xx

[@bumblebee500]

Also A chiari sufferer... Also from uk If you ever want to chat im hear xxx

[@danielleparker6949]

Bumble Bee thanks hun, same here if you wanna chat. I can’t believe this was 3/4 years ago. When I did this, I was in a dark place mentally and it really helped. I’m much better now. I’m going to do an up to date blog soon. How are you? When were you diagnosed? Xxx

[@bumblebee500]

Hey I was diagnosed in 2015 after I had my first baby. My nans surname is parker I wonder if we long distant relatives, Im from kent uk. I feel exactly how you describe. Daiily struggles with paralysis and vertigo. I have syringomyelia too quite severe paralysed my right side and I also had a destruction of my bone in my shoulder called charcot shoulder linked with the syrinx in my spine. I hope you are well I loved your videos. I wanted to do one but Im a bit shy for that lol xxxx

[@chronic_chiari_warrior7481]

I have CM-1. I've had surgery 3 years ago... I still have a lot of pain,numbness,headaches,etc... I have Syringomyelia/Syrinx... I have Hydrocephalus (Water on the brain) too.. What can I do for pain relief? I've tried a lot of stuff.. Heat/ice/ect. I get dizzy/light headed... And nauseous.. Nothing helps. Light hurts. please! I'm looking for tips.

[@danielleparker6949]

Alex Cooper hi hun im sorry to hear you’re struggling. What kind of pain do you suffer with? Is the pain in your arms, neck, legs ?? Xxx

[@chronic_chiari_warrior7481]

@@danielleparker6949 its mainly headaches... And Back pain(mainly lower...) Leg pain(right, but can be both) & leg numbness, and lastly I get dizziness quite a lot (like if I bend over and stand up too fast). I'm 3 years Post-Op. I'm trying my best to not use pain meds... But I will if it's bad... It took for ever for the diagnosis to come through... It was on a MRI scan in '09 and I had surgery in '15. So it was there for like 6 years.... And The symptoms (dizzy spells/syncope,nausea/vomiting, and headaches) were getting more frequent. We finally got another scan, and found the Chiari... In 2015, April I had decompression surgery. I'm not 100% symptom free but they aren't as bad now... 3 years later.

[@bhupatbhaikarmur7038]

My chiari malformation muscle problem patient help me

[@BargainBeautyAmy]

I also have acm just subbed you

[@shelbythompsoon]

Subbed you, acm2

[@logantroutman481]

I was diagnosed when I was 4 I am 14 now

[@shelbythompsoon]

Logan Troutman 🤣🤣🤣😇

[@johncultz882]

I have the same thing can u get disability for this ?

[@danielleparker6949]

Hello! do you mean DLA and ESA, i think the new system is PIP.. but you can get it, i have it for a few years. i hope youre okay :)