Remission periods?

[Alana4159]

Hi all, I am new to this site and was diagnosed with Chiari Malformation this week. I have suffered with lightheadedness for over 5 years and severe neck and shoulder tension. I get nerve tingling at times over the right side of my face. I stopped walking for exercise when the dizziness increased as did the pressure in the back of my head. It comes and goes - almost like it blocks then I feel flow. Like when your circulation cuts off then flows back. Sounds crazy. However I am concerned that I may have a repetitive strain problem in my neck and that my Chiari may not be causing the issue. Though I have been to every therapist over the years and it never stopped my dizziness. I have had two days of nearly no symptoms which is odd for me. I still have tingling at the base of my skull. Can you go through remission periods? Does anyone get worse in public places? I am booked for cine mri tonight so I guess that will answer the big question of whether or not I have blocked csf. Any activity makes me worse like vacuuming, gardening, walking etc. the symptoms don't come on straight away but then bang it hits me and I am crap for days. However, I don't have the coughing, sneezing problem. I notice when talking to people or laughing can sometimes bring on my dizziness too. Would appreciate your advice or similar experiences? Thanks for your support. Just scared of surgery as that has been the suggestion but not until my csf is confirmed.

[selmaS]

  B4 I had surgery I had no idea what was causing my issues....but post op I could begin to see what I no longer had to deal with to know it was the CSF obstruction.

Head position is important and one reason my Dr told me not to drive ....I had a partially retroflexed odontoid and the space was even more crowded as a result and position of the head  changed the location of the odontoid bone and my Drs felt I could continue to have drop attacks while in the car....

But talking I would hyperventilate and get really dizzy too.....

  Position  will not make Chiari worse but the symptoms can worsen.  

[Alana4159]

Hi Selma, did you ever feel like the issue was with your C1 or C2? Did your symptoms get worse with poor posture or head position? Just having problem when sitting like I am either causing the dizzy with head position or it is making the Chiari worse. Thoughts?

[selmaS]

  No worries....one of the best thing I found with this condition is the great people I have had the pleasure to meet....and we are not alone!!

Good luck with the CINE and let us know what you find out.

[Alana4159]

Thanks for your support and advice selmaS. I guess I will know for sure once the cine MRI is done. It is certainly frustrating, hard at times and great sometimes (not often though!).

[selmaS]

  Hi Alana4159 and welcome to the Chiari forum.

YES !! Chiari symptoms cycle so they can appear to come and go....they can also change...symptoms you had for a long time may leave and never come back only to discover a whole new set of symptoms.

Public places always got to me....for me it was not only the noise, but the lights (florescent) and all the people going every which way....too chaotic for me.....

Not sure if I am posting b4 your CINE  but do ask for a copy of the MRI and report.

When having a conversation I would hyper ventilate....so yes I felt dizzy ....we all experience this a bit differently....so not every one will feel the same way as you....but I  did have some of the same ones as you.

Make sure if surgery is discuss that your Dr has ruled out ALL related conditions FIRST as they can affect how you feel and heal post op.