New to Chiari

[Lola410]

Well, not so new... have struggled with the brain pain, right hand occasionally tingly with the HA for last 17years.  But 5 months ago everything changed. I have felt 2 drinks in: balance off, vision squiggles, increased nausea/vomiting, slurring speech and forgetting words. I also started having heart issues and have been on monitor and meds for palpitations and tachycardia. I feel like a noose is around my neck and my voice has become hoarse. I can not drive and can not handle too much stimuli. So, I feel like I can not do anything. I have just taken leave of absence from work and trying figure all this out. I just found out I have 5mm chiari with reduced flow/no flow posterior.  No syrinx. Now, I have to decide if surgery is worth it!  Do these symptoms seem in line with chiari and are they helped after decompression? Doctors are not really helpful with chiari and NL said none of these have to do with chiari bc I have had it my whole life. NS said probably the balance and nausea are related and may be helpful. Doesn't seem like a lot to go on when one thinks of such a major surgery. Any wisdom out there would be greatly appreciated!

[selmaS]

Hi and welcome to the Chiari forum.

It is important to know what testing you have had so far....obviously an MRI of the brain or cervical spine....how about a thoracic and lumbar spine MRI and a CINE MRI?
Then testing for related conditions? You said no syrinx, but if you have not had a full spine MRI you can not really say that for sure since a syrinx can form anywhere in the spine .
And as for the Dr that said you had it since birth and your symptoms could not be from Chiari is not informed on how Chiari may and does affect us.....since we had it from birth we are not aware of our symptoms as we consider how we feel to be "normal"....then when the condition flares for what ever reason we take notice....and we never consider all of what we feel to all be related......once we connect the dots we can finally see just how long we have been affected by this condition.
I was DX'd at age 48 and at 49 had surgery.....that was in "09...and I am so glad I had it....my symptoms did get a bit more severe since I was having drop attacks and one fall caused injuries that required surgery to repair....I have not had any drop attacks since surgery.

This surgery is not a fix or cure for the condition and may not relieve all or any of your symptoms....this is why it is important to know what all is going on with you ...many related conditions have the same if not similar symptoms.

Since you have heart issues you may have POTS which is a related condition.....

I also had a raspy voice and found it difficult to sing, my voice would just disappear .....I also could not wear necklace's or turtle neck sweaters....it felt like I was being choked....

The overwhelming sensation with too much stimuli is still an issue for me and I no longer drive.....and it is hard to get use to relying on others to get around when you were able to do so much for yourself for so long.....even riding in a car can be too much at times....my depth perception is off so, it looks too close for comfort much of the time......

All in all I am glad I had surgery as I am doing better now then I was prior to surgery.....and it did take a few years to see all the benefits of this surgery....I am a slow healer due to also having EDS which is a related condition to Chiari.....

You will want to ask a true Chiari specialist if  1- you are a surgical candidate and 2- what benefits they expect you will have.
We are all different and will respond differently to this surgery....and what other health conditions you may have will directly affect your recovery so make sure ALL testing and conditions are done to rule them out before you consider surgery,