Diagnosed with Chiari Malformation I (24/7 lightheaded)

[Jake_Adams]

Hey everyone,

I'm 27 years old and I was just diagnosed with Chiari malformation type 1 with bad CSF blockage, I did a neck mri yesterday to rule out a syrinx, results not in yet.

My symptoms started 2 years ago where I had on and off extreme lightheaded/dizziness/pressure while exercising, eventually this became permanent 24/7 from the moment I wake up all day everyday.

In addition, I get headaches everyday all over my head but they get better or worse randomly, they are mostly constant pain around my eyes, however my biggest issue is the 24/7 lightheaded/out of it feeling.

Anybody felt like this before? Did surgery help?

Also what can I expect post surgery, and will I be able to go back to exercise and weight lift?

Thank you.

[selmaS]

  Hi and welcome to the Chiari forum.

You mentioned you had a cervical spine MRI to rule out a syrinx, BUT a syrinx can form anywhere in the spine so a thoracic and lumbar spine MRI need to be done as well.

Chiari symptoms cycle so they can come and go....and flare so we can have times where we are worse then others.

Most of us can relate to how you feel. as we all have similar symptoms and experiences with this condition as the ones you have mentioned.

Chiari also does not always come alone so you will need to rule out ALL related conditions not just Syringomyelia.....

I had surgery and yes, it did help me.....

I am almost 6.5 yrs post op and would not lift at this point post op as I know it could cause symptoms to return and I was never into lifting b4.

With Chiari most meds do not work....and if you also have EDS it makes using pain meds for surgery difficult too...so make sure you find a true Chiari specialist and rule out ALL related conditions.

[Jake_Adams]

Thank you selmaS for the lengthy response.

I'm being treated in the headache center in John Hopkins, I have done those MRIs and my doctor did not report any abnormalities there.

Disappointed to read that lifting is linked to the symptoms as it is a major part of my life.

Thanks again selmaS

[tattooer601]

Jake_Adams,
Reguarding symptoms,I'm sure everyone is different and symptoms progress at different times.
  For me,I was amazed to understand that the changing weather conditions GREATLY EFFECT my symptoms.
Weather changes of any kind ,for me per

[selmaS]

  Anything that can cause us to strain can cause symptoms to worsen...sorry....but I am sure you will be able to do some sort of lighter lifting once you have healed since it is something your body is accustomed to....but do not try to do it for some time as it could cause you to have set backs post op....and listen to your body as to what and when you can do things.....start slowly and a little at a time....we are all different as to how our body will respond to this surgery.

[Jake_Adams]

Also wanted to add that I tried everything Migraine related: medications, Botox, nerve blocks, IV infusion...etc.

Nothing helped