Chiari type 1 diagnosed
Posted , 7 users are following.
Hi, I've just been diagnosed with chiari type 1 with syrinx after 21 mths of symptoms which were 1st treat as carpal tunnel progressing to possible disc herniation. My physio was actually the catalyst in my seeking other diagnosis as she didn't think my symptoms could fully be explained without MRI. Chiari presented along with syrinx at c5-c6. I've had MRI of head/neck/full spine recently and awaiting results. I feel symptoms are worsening re head pressure, clumsiness, neck pain, ear block and ringing. Just feel completely helpless
1 like, 58 replies
carolali j031017
Posted
Numbness and tingling in one arm along with wrist pain hence the carpal tunnel diagnosis. That progressed to a possible disk problem as pain progressed up my arm into my shoulder and neck. SAME WITH ME!
All other symptoms such as blocked ears DID HAVE BLOCKED EARS, blurred vision SAME W/ME, trouble swallowing SAME W/ ME and occasional numbness in legs couldn't be explained by a disk issue so physio recommended MRI SAME WITH ME BUT PHYSIO WOULD THROW ME INTO A FULL BODY MIGRAINE. Head pressure only started in September. On a daily basis the worst things are the neck pain and head pressure, and the constant feeling of being a bit drunk really! SAME W/ ME!
I can get up and go to work most of the time but driving really irritates everything and simple tasks like drying my hair and making beds etc are getting more difficult. ALL SAME W/ME! Hair styling and bending over is really a trigger.
When you say no travelling, is that due to no flying? Actually flying is the only form of travel I can do with the help of Dramamine.
j031017 carolali
Posted
I've been trying to get neurologists secretary for last couple days to chase MRI results so will keep you posted. Thanks again for advice
carolali j031017
Posted
j031017 carolali
Posted
Not exactly re fabric but I'm hyper sensitive re nerves, physio did a nerve test at the beginning on my arm and said she's never seen a quicker or more aggressive reaction. Im also sensitive to touch which made physio horrible in the beginning , she joked that I must have been strangled in a previous life because as soon as she touched my neck she could feel my whole body tense! I may however have to give my clothes away because I can no longer fit in them!
carolali j031017
Posted
Good morning
I want to give you my email address if it would be easier to communicate.
I'm now waiting to hear if I can do all the test you just did, my insurance is giving me a hard time.
Anyway, I will keep you posted as well. PS Imitrex 100 mg takes the neck, shoulder, head & back pain away. It's not a painkiller or addictive. It does something that helps blood circulation.
Moderator comment: I have removed the email address as we do not publish these in the forums. If users wish to exchange contact details please use the Private Message service.
j031017 carolali
Posted
Good evening! I hope you can get approval for further MRIS, I guess as much as we complain about the NHS we are still very lucky to have free healthcare. I got in touch with neurologist's secretary yesterday who said they didn't MRI results. She was able to say the report had been done the day after my MRI but had gone to some woman I have never even heard off! She is going to get hold of it and show to neurologist next week. What a waste of 5 weeks, if I hadn't chased it God knows when I would have heard. I'll google imitrex to see if it's available here. How are you feeling at the minute?
carolali j031017
Posted
Hi! I'm so glad you dug into it, I've been on the phone all day trying to get my insurance in touch with the Hospital. I now have to pay $3000 for the full spine MRI on Weds. BUT I HAVE TO DO IT. Are you also going to have a neurosurgeon look at the test too? My experience here in the states is that the neurosurgeons read the films better!
I'm ok today, always dizzy everyday but skipped the migraine, thank God. How is you day or night, don't know the time there
carolali
Posted
j031017 carolali
Posted
$3000?!!! That's insane, we are def very lucky to have NHS, slow or not. Waiting lists are ridiculously long, and communication is poor between GP and different departments with patients hence my MRI report being sent God knows where. The secretary said he is in surgery on Friday so perhaps he is a neurosurgeon. It's a bit different here in that we get referred to a certain dept and don't get to choose docs. But I'm still grateful we have a healthcare system at all. I think chiari is a mystery to them, there certainly doesn't seem anyone who specialises - my doc was honestly a bit flippant about it all and basically said surgery would be a very past resort and I just have to learn to manage it. It's 10.30pm here - pretty decent day. Some pressure but not too bad. Nerve pain in right wrist and elbow intense though.
carolali j031017
Posted
Ok so we'll keep in touch cause we can share what we r told. The neurosurgeon I'm trying to get in for an appointment specialises in chiari. I'll help u along if I can from what I learn. Feel good if u can ?
j031017 carolali
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Thank you. I noticed your email address was removed so cant email you directly and not sure how to private message Have you tried acupuncture? I had it a few times when physio thought headaches might be tension headaches and I'm going to give it another try. Will let you know how it goes.
carolali j031017
Posted
I guess they don't want a liability issue w members contacting other ways? I never tried acupuncture of any body therapy cause 15 years ago when I went for a massage I got sick couldn't walk for days. But everyone is different in what helps. My headaches r not tension, they r nausea slight headache, body numb & slurry words. I would say if u have tension headache then Advil or Excedrin would take that away. R u body aches bad?
j031017 carolali
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Im sure headaches aren't tension, my head just feels so pressurised all the time - I imagine from csf building up maybe. But when I had the acupuncture I was being treated for likely disk problem they thought headaches were due to me tensing my neck and shoulders. I still found it helpful in a way though so will try again with a better understanding of what is causing head pain this time. And body aches are awful, shoulders and thoracic area were constantly aching but as I said physio helps massively with that. Just soft tissue and exercises. If I'm not feeling too clumsy walking also helps with body aches
carolali j031017
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So exercise doesn't make u dizzy? Check into imitrex when u get in to the doc. It will release all aches at one time. It's not an addictive med. I'd be on disability if I didn't have it.
j031017 carolali
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I def will check that out thanks.
I don't really suffer from dizziness on a daily basis thank goodness, it's more a foggy feeling, a bit spaced out maybe? Hard to explain but I can still go for a walk which is great
carolali
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You're so lucky that walking is good for u. The people I know w CM that do well walking are so much stronger physically! How's ur support from family & friends?
j031017 carolali
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I def am beginning to sense I'm luckier than most at the minute.
To be honest only my husband and a few close friend's know about the CM, my family still think it's just a problem with my neck. I was waiting to get a clear picture from neurologist before I tell them. What about you? Do you have support?