New to community; so many questions; SORRY so long.

Hi everyone! I joined this community because I am feeling pretty down and out over the symptoms I experience. I'm thinking if I can connect to people with similar experiences it may make me feel more normal and possibly get some insight.  Briefly about me and my illness; ok, maybe not SO brief.. :o)  

About 2 years ago, life was pretty great...I was happy; in great shape; single; 26 years old; and living on my own.  Slowly my vision started feeling funky and I couldn't lay on my stomach any longer or a horrible "whooshing" would occur in my ears and I could hear my heartbeat in my ears.  Then things snowballed.  My vision went from needing glasses for distances to what seemed almost 20/20 (weird, I thought) and the "whoosing" was getting worse and when it occurred now it was accompanied with a bizarre tightness in my head (I describe it like a "pully" system that extends from behind my eyes to the inner part of my ears to the back of my head and it's like someone is pulling down which simultaneously causes all three of these points to feel tight and uncomfortable) that becomes WAY worse when I exert myself in certain ways (walking up inclines; stairs; pushing things; laughing or coughing really hard; etc.). I would get flashes of light on the outskirts of my vision and there always seemed to be a constant invisible movement over things. Finally after like 6 months, I went to eye doctor to say my prescription changed and he was alarmed at how rapidly my eyes improved. He sent me for blood tests with my Primary to rule things out and they came back fine.  He saw me again in his office after only about 2 weeks and my eyes had changed once again and he noticed how my optic nerves were swollen and my eyes "bulgy." He referred me to an ophthalmologist who thought it was a brain tumor (he was surprised I was a rare person to get 20/20 vision - most people with my condition get blurred or double vision).  I went to the ER and they ruled out tumor (MRI) but did a spinal tap and found my opening pressure at 50 (they did perform it with me sitting up which later I read is not valid that I should have been lying on my side).  They called it Pseudotumor Cerebri (diagnosed in June 2010) and put me on 1500 mg's of Acetazolamide. By this point I had gained a ton of weight (like 45lbs) from becoming increasingly more inactive and depressed - all I did to comfort myself was eat.  So at this point, I also fit the profile of a person with just PTC.  Then when I was at my Primary they gave me a copy of my LP findings and it also caught the tail end of the MRI report and in it the radiologist stated I had a 6.5mm herniation or ectopic cerebellar tonsil that was consistent with Arnold Chiari Malformation. When I researched it and brought it up to my neurologist he dismissed it and said "no" that it wouldn't cause an increased inter-cranial pressure like I have...but that was almost a year ago and the meds although they help have not caused it to go away; I've lost some of the weight but not close to all of it; I still have symptoms and in the past year even more.  I get facial numbness that is bilateral and goes across my forehead, nose and top of my cheeks and will last for upwards of an hour or two.  I constantly get numb or tingly fingers and toes.  Worse I get this shortness of breath feeling and almost like palpitations of my heart...the other day when I finally got to work and I felt particularly bad I checked my heart rate (I work at a hospital) and it was like 140.  I am in the middle of a sinus thing so that might have made it worse (the MRI also found I have chronic sinusitis with retention cysts in my cheeks).

Thanks SO much for letting me vent.  I never let on how much things bug me but lately it's been so annoying.  Living everyday with a variation of symptoms is not a nice way to live.  I'm afraid I'm always going to have to live with feeling "funky."  I rarely say anything to people b/c I don't think they can grasp how it feels or how much is "imagined."  I go back to the ophthalmologist soon so he can recheck my swollen nerves (I've been a couple times this year and every time they are still swollen).  I am starting to feel so anxious all the time and sometimes wonder if what I feel in terms of fast heart rate, etc. is real or just from anxiety.  UGH.  Help.  So at wit's end.            

[*Stormy*]

Hello and welcome to the forum,

The first thing I want to say is a lot of your symptoms are exactly like I experienced myself with the onset of Chiari!! The whooshing sound and not being able to lie on your stomach totally resonate with me...it's funny that is something that I forgot about till now.

The heart rate issue you mentioned, I had too.  I believe wholeheartedly that this was a Chiari issue as that is one of the things that have got MUCH better since the surgery.

I'm sure you have read through other posts and know what I am going to say but....get yourself to a NS that specializes in Chiari!! Those are definitely Chiari symptoms and of course, it does cause a high ICP!!! I can't believe a NL told you any different, I would change NL's if I was you. In fact, I would even bother with an NL. My NL didn't even tell me about my herniation on the MRI and the radiologist didn't comment on it either. So I went another 6 months getting worse and worse with no dx in sight. If I hadn't gone on my own and saw a NS...who knows it I would have got a dx and had the surgery? So again, start looking for a good NS, here is a list that may help you out. It has been put together by members here of Drs they have tried and liked.

http://www.medhelp.org/posts/Chiari-Malformation/LIST-OF-CHIARI-SPECIALISTS/show/1293483

Also, check out the Health pages (tab at the top right) and that will give you a lot more information about Chiari and some ideas on what to ask. The most important thing I have learned in my journey (dx Sept 09) is to inform yourself as much as possible on this condition. Know what questions you want to ask!

One more thing, you mentioned weight gain and I am wondering if you have had your thyroid checked? I gained a bit of weight too when I started feeling unwell and I thought it was caused by the same reasons. But after the surgery, I had my thyroid checked (I'm hypo) and my medication needed to be adjusted, once it was, I dropped all the weight (with some dieting help). Also, the speeding heart can be related to Hashimotos (autoimmune thyroid).... I have found a lot of us Chiarians have thyroid problems too.

Finally, don't feel badly about venting...that is what we are here for!! So just let it all out!! We will try and help you as much as we can :)

Carolyn

[trdofbeingtrd]

Something from what I read that seems like a possibility is silent migraines. You can ask your doctor about it, see if that might help. Some but not all of the things you mentioned sounds like what I went through. When I was 14 I went through some of those things, and when tests came back, it was not a brain tumor like they told me it could be. I found out later that week that it was silent migraines.

Please keep us posted.

[pamk5]

Hello and welcome!  I cant add alot to what Carolyn as said but agree that you need to find a Chiari specialist.  Gather your scans and reports and do this soon.  There may be help for you.  I also have issues with rapid heart rate and was diagnosed with POTS which the cardiologist said was due to my brain stem being "pinched". I also have issues with shortness of breath  You need to have additional test and it is concerning that your optic is swollen for an extended period of time.  Carolyn has given you the link of doctors that other members have used and liked.  This is a good place to start.  Most of us have been told by a doctor that doesnt understand Chiari that it cant be causing our symptoms.  Dont take this as a final word.  I urge you to get another opinion.  All of us have some similiar symptoms depending what exactly is being compressed so dont ever believe it is all in your head.  

I havent had surgery yet but am waiting on a date.  Again, welcome!  I hope you find the support and answers that you need.  Keep us posted!

Pam