Connect
Living with Syringomyelia
I have been a member of Connect for a couple of years. I am hoping to connect with others that are living with Syringomyelia. Hoping to share experiences. I was diagnosed with both Chiari Malformation and Syringomyelia. I follow the Brain and Nervous System page for Chiari, but would really like to connect with individuals living with Syringomyelia. I haven’t found a discussion on Connect regarding this. So lets start the discussion.........
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1 ReactionSee note below. I somehow messed up when replying. 🙂
Anybody here with Chiari and Syringomyelia?
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1 ReactionHello @razzle50 and welcome to Mayo Clinic Connect. I understand you are looking to connect with members who have experience with Chiari and Syringomyelia.
Because of your desire to find others with one or both conditions, I have moved your post into an existing discussion on "Living with Syringomyelia" where you will actually find members like @nancy82415 who have shared having both and may be able to connect with you to share more.
In the meantime, I've found another discussion on Chiari that I want to share with you as a resource mainly, as it is a bit older.
-Chiari Malformation type 1:
https://connect.mayoclinic.org/discussion/chiari-malformation-type-1-20782d/
Have you been diagnosed with both Chiari and Syringomyelia recently?
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2 ReactionsHi @razzle50. Have you recently been diagnosed? You can find my journey with both Chiari and Syringomyelia within the link that @amandajro provided. I would love to hear your story.
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1 Reactionno have not I have had this for many many years I am the adminstrator for the Iowa group on facebook
I was diagnosed 5 yrs ago. I am in my 50s. I will assume that you are around my age or so as you describe having Chiari and Syringomyelia for many many years. So my question is how does the aging process affect this condition.
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1 ReactionYes I have both just found out in August of 2019. I had chiari decompression surgery in September 2019 it’s been over a year since surgery and recent MRIs show the syrinx pictured above has shrank some, however the main issue for me continues to be pain! I have horrific back pain, and trying to find pain management that actually works is proving fruitless. Have you or anyone else found any medication or treatment that actually helped your back pain?
My twenty-something daughter was just told the MRI showed spinal syrinx.
Other issues in her health history:
Anaphylaxis, IGg verified allergies to gluten, dairy, eggs, soy, yeast; airborne spores, molds, grasses...; allergic to penicillin, allergic to whatever is used in vaccines.
Gets rashes in sunlight in late spring, summer
Has lost 2 teeth to spontaneous nerve death
Loss of hearing in one ear due to inflammation
history of fainting- no heart issues on examination
history of ruptured ovarian cysts
asthma
severe iron deficiency - undergoing series of IV iron infusions
sensitive to heat, runs hot
Inflammation seems to be a huge issue.
Has health partners via her current insurance
would like to see her at Mayo in Rochester
Advice?
adding - soon to meet to discuss celiac disease diagnosed from blood draws preceding MRIs for neuro symptoms.