Update with a couple of questions

[Kennedyhanau]

Hello again everyone, I posted several weeks ago asking about a connection with Chiari and EDS. I have since been to a very good neurosurgeon who confirmed my CM diagnosis. Unfortunately, I forgot several things that I wanted to ask him so, I thought. I would come here and ask since everyone seems very knowledgeable.  Firstly, does anyone else have facial tics/spasms? I have had them since I was about 7 years old. My entire family would yell at me and tell me to "stop your twitching!"  Rude...I know, but at that point I had no known health conditions. I've been embarrassed by my tics for many years now. I catch people staring at me in public, but I can't help it. I can only control them for several minutes at a time. It's mostly the right side of my face including my eye, cheek and mouth.  Oddly enough, this is the side of my head that hurts when I get one of my crappy Chiari headaches. The second question is, does anyone have extreme ear pain with their headaches? I'm been to too many md's to count with my ear.  Every time I am told that there is either nothing wrong with my ear, or that they suspect I have mastoiditis which is an infection in the bone behind the ear.  I laughed at the last guy and told him that if that was the case then it had been infected for 20 years now. You would think in all that time that someone would have performed an MRI and caught the CM, but apparently no one has taken me seriously.  Also, I should note that it's the right ear...same side as the twitches...I have read that the CM can be compressing a facial nerve that's located at the brain stem, but I've yet to find any info on anyone that actually has this problem.  I have never openly discussed my facial tics/twitches with anyone...not even my husband because it's such a source if embarrassment for me.   I have had a couple of children inquire about it, but it always tell them that it's something I can't control and leave it at that.  It seems that the twitches get worse if I'm tired or stressed. I am so sorry to be so long winded, but I really want to know if there's anyone out there like me.  It's gotten to a point where I don't go I to public unless it's absolutely necessary.  I was tortured throughout school due to this problem, and as an adult I figure I can control where I go so that I don't have to constantly worry if someone is staring at me. It causes tons of anxiety and depression because I feel like a huge freak. Any information would be greatly appreciated. Thanks in advance

[AKC_75]

i cannot help you with all your other questions but I will say that MANY times when I have a migraine it will make my ears hurt, most of the time it is my right ear but it can be the left too...or even both at times.

[selmaS]

  Be sure to ask what he means by if u need a patch....if he is planning not to open the dura to be less invasive...look for a different Dr....this type of procedure tends to not last and most end up having to be decompressed again and the next surgery the dura is opened....

  I did answer ur other thread too....

[Kennedyhanau]

The md explained at the first appointment how the surgery works and even asked me if I would consider having it, and if I thought my headaches were severe enough to consider it. He did say that if I needed the patch that it would be harvested from my own scalp because he feels that it's the best thing to do since it is my own tissue. Honestly, he didn't give me much time to ask questions. It felt like a speed round on a game show and my memory really *****. I couldn't remember all that I wanted to ask. Next time though, I am taking a written list in to give him so that we can address all of my fears, concerns and questions ☺️

[selmaS]

  I know what u mean, I love them as well....I went on them all the time....lol...

  Hmmm mayb u can go to a diff Dr to get the EDS DX so u know which type u are and if u will want a dura patch harvested from ur own tissue instead of a bovine, cadaver or synthetic one.....

I can understand ur Dr wanting to know how ur Chiari is affecting u, and that is important, but knowing if u have related conditions is just as important.

[Kennedyhanau]

They haven't tested for EDS yet, although I did mention a family history of it.  My neice has a severe case and my brother is a carrier.  I really suspect that I probably have it because of all the joint pain I have, along with being "double jointed".  I also bruise super easily and my primary doc can find no reason why that should be happening. Right now, the NS is only concerned with finding out the extent of the compression, and whether or not I will need surgery.  As for the roller coasters, I think I may just have my husband go with our son and I will just stay home. If I don't, I know that I will end up on one with him because I absolutely love them and I know it will be hard to resist :)

[selmaS]

  To go on a roller coaster is hard to say,u may get one whopping HA or u could loose ur balance once getting off, it throws u around....u may want to opt to not go on it....I went on many not knowing I had Chiari and each time I felt worse when I got off....so I knew something was up....I am sure there will be others that can go on the roller coaster with him,....go on rides that will not throw u around.,,,,,,

But what happens and how u feel will depend on how ur Chiari is affecting u....and until u have the CINE there is no way to know for sure...do u also have Ehlers-Danlos?

[Kennedyhanau]

Hi Sema. Yes, I have many disc issues...ddd, ruptures and bulges.  It's good to know that all the emotional stuff I'm dealing with isn't because I'm crazy.  I've noticed that my anxiety goes through the roof right before or after a headache comes on. My tics are pretty constant. Sometimes they go away for a few hours after I get some sleep, but these days sleep is a fleeting thing. I try my best to get proper rest, but lately I have been averaging four to five hours per night and some nights I don't sleep at all.  I wasn't so sure about the NS I was referred to at first because his website mentioned nothing about CM, but he turned out to be quite well informed. He told me that he has had many CM patients who have opted for surgery and are doing quite well. He actually told me on the very first visit that I may need surgery, but that he will leave it up to me unless my Cine MRI comes back with a bad result.  His nurse says that I will have the results by next Friday and that we will go from there.  One last question...what negative things could happen if I were to ride a roller coaster?? I'm asking because my sons little league team is planning an end of season trip to six flags and it is going to stink to go and not be able to do anything.  Thanks for your reply, I do appreciate it very much ☺️

[selmaS]

  Hi....yes I remember u had some disk issues as well...many of us do.

Oh so u will be having a CINE MRI...that is great !

I had facial ticks ...had people say I was winking or looking at them with one eye???....lol....I had no idea at the time...but the twitching at my left eye, all my issues were on my left....mine would come and go...sounds like urs are more constant.Yup, mine were worse when I was over tired....stressed....

Speaking of stressed Chiari can and will cause u to feel more emotions including stress, anxiety etc....

I hope u found a Dr well informed and experienced with Chiari and related conditions....

Good Luck on Sat with ur MRI !!

[Kennedyhanau]

Let me add that I am scheduled for a complete brain MRI to check how much compression there is and how much CFS flow I have.  I go this Saturday, May 31 to have that done.