So many questions?!?

[Tharris85]

Hello everyone! Recently I had an MRI and was told It showed Chiari Malformation 1. I was not given anymore information as this was told to me over the phone from my Dr. except I have an appt. with the neurologist next week. My symptoms are headaches everyday and when I cough, sneeze, laugh, or strain to use the bathroom I get a "brain freeze". Also when I bend over or am upside down I get an instant horrible headache and back paid. I also have horrible balance, become dizzy easily, and have a tingling across the back of my shoulders that seem to be coming from my neck and when I work out my legs from the waist down become numb. My biggest symptom of all that has bothered me since as young as I can remember is just feeling foggy or distant in a way. It is so hard to explain and everyone looks at me like I am crazy when I try to. It happens daily and the only way I know how to explain it is like I am there, but not there and kinda like slow motion. Has anyone else had this? Also they never said if I also had syringomyelia but I do have muscle weakness and I sweat a lot but only under 1 armpit and I don't even have to be hot. I am also curious what the odds are that I will have to have surgery.  I know this is a lot but I just have so many unanswered questions that they left me with. Thanks!

[linnielou232]

So many of us have been down the road you are on right now.  It is flustrating, but you have found the right place for answer's and support and understanding.  I also on my journey of dx'd with Chairi felt as though I was crazy and started to think it.  My Dr had to write the word down because I was as you.  It "WHAT"?  It is complicated and surgery is not for every one.  I had the same issue with NS and not thinking my smptoms were even worth considering.  I did finally find a NS who listened and helped me understand.  My herination was at 6.5 and as you will also read on here from other's it's not the lenght that matter's but the width.  I had CSF blockage, so I was having the same signs as you are having.  I had surgery because that is what was best for me, but it is something you just don't go ahead with.  Get as much information as you can and I am happy to hear your seeing another NS.  I went to 3 other's before finding the one who helped me.  It is a long and sometimes scary journey, but realize you are now not alone and we are here to take this journey with you.
I wish you the best.
Linda :)

[zygy2]

So sorry to hear you are dealing with all of this!  The longer you hang out here the more of these stories you will hear... so many of us have been down that path and sometimes it is a very long frustrating path.  I had a nightmare NL and I went out of state to find someone to listen, eventually I got someone local and am pretty happy now but it was very upsetting and they did make you feel crazy!  I had the back of the head pain (cough headache) that I think you are calling brain freeze.  I could not laugh at all by the time I found real help, it had gotten so much worse.  The cough headache at least qualified me for the MRI.  You just have to keep pushing if you think it is worth it, I would not suggest the surgery and process to anyone though unless you find someone that is really a specialist and really knows what they are doing.  Don't let just anyone into your head just because they say they will do the surgery!  There can be lots of different complications and you want someone that will stick with you and follow through.  I have been working at this for over two years and am still dealing with things and I would be in trouble if I did not have a fantastic NS.  Good luck and keep fighting for the right person to listen!

[Tharris85]

Thank you everyone for your comments. I seen a neurologist today in my home town that my Dr. referred me too and he didn't even look at my MRI disk or anything. As soon as I walked and I stated that i had been told I had Chiari Malformation 6mm and he said "That is big enough to be anything that would cause you symptoms" ARE YOU KIDDING ME?? I was so upset I called my Dr. and they set me up for another appt with another neurologist for Monday and this Dr is about 2 hours away, but looking him up it doesn't say he specializes in Chiari so I am worried I will be dismissed again. Is 6mm not bad? Again I have horrible symptoms so I don't see how he could just dismiss me like this. Do you know of any Chiari specialist in the Indiana area or around Indianapolis?  

[selmaS]

  Hi and welcome to the Chiari forum.

U r deff not alone in how u r feeling ne more...there r so many here in this forum that can relate to how u feel and know how frustrating getting others to listen can be.

Getting the right Dt is key..so do look at the list of chiari drs we have in our Health pages ....they may not all be true chiari specialists but they did treat chiari successfully for a member here. So research all drs and see a few to compare to find the one right for u.

  "selma"

[irislita]

...run Around now.i ve never been checked for a syrinx for example which is a bad sign...well i do share ur symptoms too plus have a whole list more.

[irislita]

Hi glad u joined us.i tell u this forum is the best.the people are so supportive and can help u answering question a lot.i do havr to tell u,get a specialist who checks u for related issues.i have had surgery with a ns not specialized ns and do have the

[Rylanesmom]

Welcome to our group....sorry you are here.  You will hear over and over to make sure you are seeing a chiari specialist...it does make a HUGE difference.  None of us can tell you if you will be a surgery candidate and a true chiari specialist will do many tests before recommending for/against surgery.  Most of us have to travel to see a true chiari specialist.  I am 17 days post op currently.  Many of the symptoms we share.  You are not alone.  I am so thankful that I traveled to an expert.  Do your research...I was referred to a local NS and that was not good enough for me when discussing brain surgery.

[Tharris85]

I am so glad to finally get to talk to people that understands what I am going through. For the longest time everyone, including my parents, pretty much just blew me off and looked at me like I was crazy when I would explain my symptoms. I feel a sense of relief knowing I am not crazy. lol.. I can also relate to you saying losing your cell phone, keys, etc. I keep losing everything or i sit something down and mins later cannot remember where I put it. I haven't normally been like this and all of my symptoms, besides the fog, just started about 2 months ago. The only change I made was that I started college and am in my seconds semester so I don't know if that could have something to do with it. Again I know I just keep going on but this is all new to me and until now  I had no idea it even existed. I am from a very small town in Indiana and when my Dr. called to give me my results he didn't even say the work Chiari he spelt it because he didn't know how to.

[drewlevas]

Hi and welcome.

If you need to ask any question you are at the right place. This forum is a blessing. You can also come and rant or vent about how Chiari makes your life crazy. You'll always find someone to liesen to you.

And the fog and dizzyness must be my most anoying symptom to!

[kelly1432]

Hi and Welcome.
  Sorry to hear you are experiencing so many of the symptoms many of us here have.The fog u are referring to? Has often been called Chiari Fog  & is normal in the Chiari Community.
I am fairly new here myself,& do not have offical DX,but my (14yr)daughter does.
I would advise you first to take a look at the list of Chiari Doctors ,you can find on this forum. It is important you find a Dr.who specializes in Chiari. There are many helpful people here,with out them,I prob would have lost my mind. (along w/cell phone,car keys,&everything else I often forget from my own fog :) lol) I am sure you can find many answers here Good Luck on your Journey,Kelly