Chiari type 1 diagnosed

You sound pretty isolated, it must be tough at times. I find when pressure is bad in my head though I'm better by myself - I find it hard to tolerate any kind of noise and am very cranky, hard to live with. Long term memory is great, maybe oddly so, but short term is terrible, really non existent. Was thinking back to our chat about sensitivity when I said I was sensitive to touch. My youngest daughter tried to tickle me tonight and it made me think - I have never been ticklish - it doesn't affect me at all, yet any real hands on it makes my skin crawl.

Just what u said about when ur head hurts it's better to be alone..that's just it. I'm in constant fog so if I'm not at work I'm recharging myself so it's ok to be alone. I do live in a cute little town so right out my door are stores, restaurants etc. Oh and the skin crawling thing is so creepy, Most fabric I can't wear! And short term memory is not there but long term is great. Do u have instant messager or Facebook? I wonder if we're allowed to share that on the site? How many

I'm not on Facebook or messenger....probably the only 38yr old in the world not but I'm not into it at all. The moderator said to private mesafew but can't see how to do it

Good for u! I just find it easier to type, my hand gets numb after a few words. On I'm or text I can use speak to type.

Just wanted to wish you luck for MRI today!

Aww that mean a lot to me that you remembered! Have you heard anything yet?  I'll touch base with you tomorrow....5 hours in the tunnel!

Good morning! I pasted out after 3 minutes in the MRI, I can't lie flat so I have to do it under general anesthesia.  This way I'll be helped with a breathing tube.  This is exhausting

How are you feeling?  Is it cold there? 

That's devastating for you, it seems nothing is straightforward, even trying to get answers. Do you know when you'll get it done?

I've been ok last couple days...neck and nerve pain and not sleeping but head pressure free which has been such a relief. It's about 3 °c right now, chilly and rainy. Cold weather always irritates the leg I had the DVT in so balance is more off than usual

Funny u should say that, the weather here is rainy muggy so for about 5 hours my head was so bad and couldn't walk. Nothing helps the barametric pressure pain. As for the MRI issue it is so important to me, I need answers. I'm so happy u have a few days off relief! It's such a gift when we have a good day!

Hi! How are you feeling? Just checking in to see how you are.

Hi there, just heading to bed - 11.20pm here. Neck and nerve pain still strong and very clumsy driving today so will need to keep a very close check on that. 3 days headache free-ish so am in good form. I'm coming to realise the head pressure is the worst symptom for me, I can manage all others easier than that. Still no word from neurology though, really expected to hear this week.

How are you?

I'm good, just thinking about excepting my limitations once I find out there's nothing they can do for be but treat the symptoms. I need to find a way to keep myself physically strong without triggering my head issues. I'm so glad u r headache free for a few days! I'm glad I have u to talk to! Sleep well.🙂

So headache returned today but still got 4 days grace. Physio tomorrow so will ask about acupuncture. Is walking a definite no-no for you? Have you got a date for your repeat MRI?

Hi,happy new year. Hope you're feeling ok. Just wanted to say I finally got MRI report from October - had to request as a data protection request and pay for it! It shows 8mm protusion, linear T2 hyperintense and T1 hypointense signal within c4-c5. Couple of septations within T1 sequences. Hemangiomas within T6 and L5. Cervical degenerative disc change, anterior osteophyte formation and posterior disc bulge at c5-c6. Linear signal change in cervical chord too prominent for hydromyelia so get to represent small syrinx.

All confusing without consultant explaining everything, but still waiting on appointment with chiari specialist. How are things with you?

Hi there! I've been on the facebook support group because there are so many people to chat with about Chiari.  I've learned soooooooooo much!  And WoW you have a few things to  take care of for sure. My MRIs came back with not much but chiari progression and scar tissue messing up my brain stem.  I was so lucky to get an apt with the Chiari specialist.  My new year so far is ok, but how are you feeling? How long do you have to wait to see the specialist?

HI there, glad to hear you've been finding some comfort among fellow sufferers and maybe some tips. Have you been to see the specialist? I'm not brilliant to be honest, head pressure making things difficult along with usual out of body feeling. Thoracic like a brick wall according to physio so trying different mobs to loosen up the area. Still waiting on appointment from neurosurgeon. ...good old NHS!

Sorry but meant to ask - do you know if 8mm is minor or otherwise? MRI report states mild but everything I've researched seems to say over 5mm is significant?

Hi

Do you have a had surgery??