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
Hi! I'm sorry your not feeling well, but you're not alone at all. It does take a while for u to get some answers but sounds like u are in good hands. Those test u just had should give u some answers. I had decompression in 2012 and now getting symptoms back. Dr is sending me for what u just had. Let us me know what they find! Hang in there, and research a lot! Good luck 🙂
j031017 carolali
Posted
Thanks so much for your reply, my neurologist seems to be very much against surgery as in his words it is at times unsuccessful. My worry is the symptoms are very much progressing. The head pressure constant, my ears are always blocked. Physio is really helping with back and shoulder pain but won't touch neck as she isn't familiat with chiari. Will be chasing up results asap
carolali j031017
Posted
I'm there too, going in for surgery again doesn't make sense if the symtoms will come back anyway. So I'm searching for symtoms relief. My head pressure is causing me nausea, right side of body numb, tripping, gagging if I fall asleep on my back. I got an adjustable bed which is very helpful for head pressure relief what u get up. Cm patient r extremely sensitive to load noises, bright lights, cold or too hot weather and vision blurriness . Do u mind telling me ur age and sex? Im 55 female and dealing w this for years so maybe I can give u ideas that will help dealing with symtoms.
j031017 carolali
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I'm 38 female. Finding it hard to come to terms with the fact that this is it now, that it's just a matter of managing. You're right about the loud noise and sensitivity to light, I hadn't connected that to chiari - just thought I was odd! I'm office based too so finding it very to stay at work. Did you find the surgery helped at all?
carolali j031017
Posted
Good morning
I do know that every person with Chiari experiences different effects from it. My Cousin, your age, never has symptoms unless she sneezes, coughs, and the bowel movement strain (that's how she found out). However, she lives a very active life. I did find the surgery helpful in some ways such as, the tiredness and aches went away. The first 2 years were enjoyable, however, slowly the symptoms came back. I decided to deal with each symptom so I could continue enjoying my work which is marketing and sitting most of the day. Here's what I do to combat each symptom:
Nausea & dissiness: (Dramamine)
Headache w aura: (Imetrix medicine from Neurologist)
Balance problems: (adjustable bed or lay books under the mattress where your head is)
Pressure issues back of head: (I cut my hair short so I didn't need to touch it)
Cold Weather: (Wear a scarf around your head)
Hot weather: (don't go outside if the sun is intense)
Numb hands: (use 2 mouse at the computer 1 on right & 1 on left)
Don't bend head down or up to much, raise reading material straight at eye level
Straighten legs so they can make up for the weakness in the upper body (I use "Leg Magic"
Google it, its about $40 but boy is it amazing!
I do know a local women here who finally after 4 surgeries is living a very enjoyable life. So don't freak out, you will tackle this condition I promise you. But know that your lifestyle will have to change/tweaked and acceptance is important. How's your support group, Family, friends?
j031017 carolali
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Thanks so much for your tips and advice - neurologist advice was to continue as normal which is easy to say when you aren't living in a constant fog and can no longer hang washing out without stopping for a break! Do you mind me asking where you are from? I live in Northern Ireland so along with a smaller pool of specialists and good old NHS waiting lists I don't have much choice for 2nd opinions. I'm sorry that surgery wasn't altogether successful for you.
cakal76334 carolali
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This woman which you know ..after 4 surgeries..did she had syrinx ?
b2wc97455 j031017
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j031017 b2wc97455
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My initial MRI report stated mild crowding of the spinal chord, and hydromyelia which was unlikely to be sympomatic so I believe the neurologist is assuming I'm being dramatic about the symptoms I do have. Everything I read about a syrinx concerns syringomelia rather than hydromyelia so it's difficult to get info. He also said the syrinx was modest so they would just keep an eye on it. I do have to say that from reading other posts my case seems much milder at present - no black outs and I can still live a mostly normal life...for now. I feel awful for those whose symptoms are unbearable
b2wc97455 j031017
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j031017 b2wc97455
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It's fantastic that your surgery was successful!
b2wc97455 j031017
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I think because I listen to what my neurologist and neurosurgeon advice me to do..taking easy..we are now different..you can't do as normal people do..unable to do any strain/ load...taking supplements such as magnesium, eating healthy ...sleep well..walking daily...listening to your body..just all the sensible thing to do
carolali j031017
Posted
Well said! I am praying that the Chiari specialist here in Florida will see me. He will be the 3rd neurosurgeon looking at my MRIs with and without contrast. Not to leave out my hospital stay when the hospital neurosurgeon found it first. I think what I have now is the nerve damage, leaking cfs flow, slurred speech, blacking out, which are a bit different from my symptoms before the operation. One neurosurgeon's nurse told me it might be my scare tissue crowding my cfs flow. Anyway this is why we do need to keep searching for the best doc with the best answers. What state are you in? Is there barometric changes a lot?
j031017 carolali
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I'm in Northern Ireland, options seem very limited here compared to the States. Your symptoms sound dreadful. Do you have a syrinx as well?
carolali j031017
Posted
carolali
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Oh my days are not dreadful, I don't want to scare you, I just want you to know that lifestyle change is necessary. I've accepted my life, ok this sucks, No traveling, no partying, no late nights, uncertainty if I can follow thru with plans, list goes on. BUT everyone is different and CM goes in remission too. Mine got worse because I was in a fender bender which shifted the brain stem.
j031017 carolali
Posted
Initially I had 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. That was in January this year. All other symptoms such as blocked ears, blurred vision, trouble swallowing, and occasional numbness in legs couldn't be explained by a disk issue so physio recommended MRI. She has been fantastic. The awful 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! 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. When you say no travelling, is that due to no flying?