Hi my name is Braylen. I’m 23 years old and last week got diagnosed with Chiari Type I with a syrinx in my spinal cord and scoliosis. Before last month I had never heard of Chiari so this is all very new to me terminology wise, but the symptoms however are not. Over the last year my headaches/migraines have been starting directly in the back of my head causing terrible pain, dizziness/double vision, numbness in arms and legs, terrible pain and aches down my spine and neck . More to name but sometimes the list seems to go on I’ve had 7 different mri’s trying to figure out what was going on and finally an Mri on my brain and neck confirmed it. Due to my symptoms and the syrinx my neurologist referred me to a surgeon that I have an appt with in March. Wondering how others learned to cope with this and not feel down and depressed all the time
Hi Braylen. I too am new to this chiari thing so like you I’m learning to cope with it. Most of us feel bad for a long time before we reach a diagnosis and then treatment options. The unknown is hard-I hope the neurosurgeon you are seeing in March will have some answers for you. I’m glad you have an appt soon. this site has been a huge resource for support and information. reading other people’s stories and being able to relate makes me feel like I’m not alone. I give myself permission to feel down sometimes because this is tough and it feel like a fight sometimes. Be kind to yourself on those days and know that the lows are temporary. keep us posted on how you are doing!
Hi Nikki thank you for the reply, you’re right I should give myself some time to feel down its been a long road for me and now that I’m on my 3rd doc I am getting some results and that’s always a plus. Really hoping for some help from the neurosurgeon. Thank you for reaching out. I don’t feel so alone now. When did you get diagnosed?
I was diagnosed about 3 weeks ago, then after reviewing the results of my cine mri last week he said that he doesn’t think my symptoms are caused by my chiari and isn’t even for sure that I have chiari …even tho my tonsils are 7 mm and I am dizzy, fatigued, poor balance, ringing in ears, pressure in head/neck. So I’m moving on to another dr whe I do physical al therapy for balance/dizziness.
Braylen, welcome. Chiari is a roller coaster ride, no charge! I understand why you are feeling down. Let yourself have that and move through it. Diagnosis is double edged. You now have a name and a direction to move with your symptoms. This could be a challenging diagnosis, though, because most doctors have a limited and outdated education with it. Pace yourself. Read and research heavily. Chiari may not be the only diagnosis in your future, there are “lurking” conditions that may explain other symptoms. You need to know your full Chiari situation before you decide on a treatment, or non-treatment. You are in good company- we get it! I’m going to attach a post I aebd to newly diagnosed chiarians…
There are common themes that come with Chiari as far as related conditions/ diagnosis. Not trying to overwhelm you with this, just want you to be informed.
Vitamin d deficiency (high daily doses of D3 can help with symptoms)
Magnesium deficiency (non-citrate magnesium daily)
Vitamin Bs deficiencies
Syringomyelia /syrinx- cyst within the spinal cord as a result of CSF hypertension/blocked or partially blocked CSF flow.
Ehlers Danlos syndrome- google the Brighton Critetia and the Beighton Criteria. This can cause cranial cervical instability. CCI further compresses and damages your spinal cord and has the same symptoms as Chiari. This should absolutely be ruled out. If you have EDS and CCI, get the decompression surgery done without correcting the CCI you may continue to have the same symptoms or worsening symptoms- a second surgery will be required. Finding a surgeon who screens for CCI is tough- not all Chiari surgeons have started screening for and treating CCI.
Dysautonomia- Dinet.org (this is a big one for anyone with brainstem issues!)
Tethered cord syndrome
Sleep apnea- dangerous, especially if Cranio cervical instability is involved
I am glad you found us,
Hi, and welcome to this great group of people that can support you through your journey!
There is so much good information that you can glean from people that have gone before you.
Don't hesitate to ask any questions that come to mind.
I have my good and bad days, and really, the bad days take more energy to deal with than the good. That said, I am trying to give my feelings the respect that they are due, and to not ignore them. ( my specialty)
One of the ways I cope, is to journal a few words, and for me, that is a pressure valve release. I love all types of music, and it helps to crank it up when the tinnitus is too loud.Doing research, helped me as well, but too much time on the computer can make HA worse .
If you have things you can still do, that interest you, don't give them up. Try not to let the diagnosis take over.(easier said than done at first)
Thank you all so much for the replies… My neurologist in tulsa found Chiari malformation I, a syrinx inside my spinal cord and scoliosis. Me and my fiancée are still trying to get used to the fact that I can’t be as active as I once was especially not at this point (used to play sports, dance, track & field , etc) but I’m slowly realizing that this is out of my hands… I didn’t ask for this. None of us did but we have to deal one way or another ya know? I just find myself getting harder on myself when I can’t do certain things or when my head feels like nothing but weight with intense pressure in the back of my head . Gonna take all yalls advice to be easier on myself and educated. We have been doing as much research as possible. Got an appt in March that I hope to find out about survey options . Thank you all so much. Hope we get to know own another better