Very Scared and Depressed...

[star42]

I've had random headaches mostly starting at the age of 18 (I'm 33 now) but they would go away minutes after taking Tylenol so it was never a big deal. Two yrs ago I was under a lot of stress and started having various symptoms (acid reflux, muscle spasms that only lasted a week, minor TMJ due to grinding at night) etc. Then, one year ago out of nowhere I started feeling a deep pounding pulse and vibration in my chest. After a couple of weeks I started feeling the pulse in my head, neck and back. Sometimes I'd only feel it in one place at a time and months later it was a constant 24/7 thing with a couple of "breaks" in between. I couldn't tell if the pulse sensation was the result of a head or chest (heart) problem.

After seeing multiple doctors and specialists they all said I probably had some kind of anxiety disorder. A neurologist had me take an MRI which showed a Chiari 1 malformation. He said based on my symptoms and history he didn't think it was the cause for my symptoms but had me do another MRI to check for a syrinx. The results showed that I didn't have one.

I went to the headache center 4 months ago and they concluded that I have a form of a migraine and don't think the chiari 1 is a concern right now but requested a second MRI with contrast this time to check for low pressure and other abnormalities? In the meantime the doctor gave me a low dose of amitriptyline to take for 3 months. I took it for 1 month and felt so much better. I recall sitting down one day and saying to myself "wow, the funny feeling in my head is just about gone." I even started to forget about how anxious I once was searching desperately on the Internet to self diagnose myself. All of that had disappeared when taking the amitriptyline. The problem was that I started gaining weight fast so I stopped. After a few weeks the pulsating feeling and nervousness/anxiety came back.

I had the MRI w contrast this week. My doctor just called and said everything came back fine but of course the chiari 1 is unchanged. I don't know why but I was hoping that it was some kind of error or that they were going to say the chiari is "borderline" or mild. When I asked the size she said 11mm herniation and I could barely hold back the tears. She said there is nothing to worry about "for now" but I can't stop crying. I keep thinking of the potential for paralysis, brain surgery, etc.

I'm so depressed and scared. I have 3 small children. Is there anyone who knows someone with a 11mm herniation that was able to live a normal life? I don't experience any real pain aside from on/off facial pain in my cheeks and teeth especially when I grind at night. I don't have any pain in my neck or body. I just have the uncomfortable sensation of a pounding pulse in my head and chest (like my heart is thumping in my chest causing me to feel it elsewhere). Can't stop crying over here and I'm sure my anxiety and OCD issues aren't helping.

[redkim]

Sorry you are having to go through this.  You're not alone!  A lot of doctors say it's nothing to worry about that is also what mine said. Four years later and several visits I decided to pursue Chiari as the cause of my symptoms and had brain surgery 1.5 years ago.  I am pleased with the results.  My herniation was 9.5 with crowding (although I didn't have a flow study).  I also have other conditions, which stress me out at times.  I have cried twice in the last week about the frustration of it all.  I decided to have surgery to hopefully stop the progression.  You will need to see a specialist to discuss your particular case.

Chiari is life altering, you will have to change some of your habits.  That is something different for everyone.  I still work FT, figure skate 1-2 times a week, take art classes.  Sometimes I have to take breaks between these things when I over do it.  You have to listen to YOUR body.  People will be able to make certain general recommendations thought, like don't see a Chiropracter, wear suportive shoes, etc.

This is a great place for answer and support.  Now is the time for your to advocate for yourself and learn as much as you can.  Unfortunetly you will have a hard time with doctors, not knowing what it is, how to treat it.  People here can help and offer advice on that.

[selmaS]

Hi and welcome to the Chiari forum.

First let me say, that 11mm may be large in chiari herniations, but size is not the end all to make a decision with chiari.

Someone with a much smaller herniation could have more symptoms than someone with a  19mm herniation .

I suggest u find a true chiari dr to be eval-ed...get a mouth guard to help with the grinding of ur teeth....once u get to a chiari dr, they will do further testing to look for a CSF blockage and overcrowding as these two issues along with symptoms and quality of life are what the drs look at for determining surgical candidates.

This is a life altering condition...and surgery is not a fix or a cure, and u run high risks having surgery.,..so it is a big decision.Surgery is done to slow progression, which means open up the CSF flow to avoid the formation of a syrinx...which u do not have yet..which is good.

Try to relax and do look at our list of drs and research them.

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

We r happy to have u join our little family here, but not happy as to the reason that brought u here.

"selma"

[ChiariWolf]

Hello my new friend,

Like others here... I don't like how we've come to meet, but it's my pleasure to be here for you. That being said selma has given you the best advise anyone could. No matter how difficult, stay calm. That calm spirit is what will help your children and help you. Easier said than done you may think??? You are correct, but not impossible.

19 ruptured vertebrea, fused in my lower back, both legs gone, nerve damage in a few areas due to the ruptures, chiari surgery almost a year ago and now a previously operated on arachnoid cyst that is growing again causing  increasing problems... yes my dear one I know pain as my best friend. But I also, like you have children... what legacy shall I a mere man pass on to my children???? Let them remember the pain? No for it is mine not theirs... thus I choose to do everything in my power to provide them with a calm and mild spirit to follow. Easy, again no it's not. But anyone of us with a working mind can find ways to force ourselves to focus away from what is going on. When the subcranial headaches take over, well then it's time to ask for forgiveness as we can't focus away from the pain and or frustration. The rest of the time though find a hobby... be it with your children or on your own find something you enjoy that can help your mind to focus on something besides how you feel.

Then with that factitious calmness go after a Dr who really understands Chiari. Please know also, you are safe here. We do understand the frustration you've described and more. We even know the feeling of freedom and utter relief when you do find a 'real' Dr who understands what is going on.

Sometimes I tend to babble... sorry if I did here. Just know your words stung my heart, I feel for you and your children. But there is hope, don't give up.

Wolf

[stephanie_C]

I am so sorry that you feel so scared and alone. I am a single mom of a 2 and half year old. I had my chiari surgery almost two months ago. It was the best decision I've made. I am back to work full time and I feel great. A close friend of mine was also diagnosed with chiari several years ago and she has never had any chiari symptoms. She had the MRI for other reasons. So it is VERY important that you try to find a real chiari specialist to go over all your test and symptoms very carefully to help you figure out if that is what is causing your problems. There are lots of us who deal with this on a daily basis, some have a lot of trouble, some are just mild and others will never even know they have a CM.

Good luck and my thoughts are with you and your children.
Stephanie

[*Stormy*]

Hello

I just wanted to tell you that when I first noticed something was wrong with me it started with this funny feeling in my chest and a pulsing in my head, lower throat and in my chest. I also had some weakness down my right side and I was extremely worried about my heart. Like you, I had some anxiety issues in the past..so when my heart came out fine, they started to tell me it was all anxiety. I listened to them and didn't push further and my symptoms kept progressing. So what I am saying is DON'T let them push the Chiari aside..I am 100% sure that is what was causing the pulsing...I don't get it nearly to the degree I used to. It is a hard battle to fight but keep looking until you find the right NS and ignore what anyone else has to say. If you had the right Dr they would be taking it more seriously than they are!!

I have 3 children too and it is/was very scary for them and for me...but I found out what was wrong, had the surgery and now I am on the path to healing. Kids are resilient and they made it thought and in a way it brought our whole family closer. So hang in there, keep fighting the fight and know that we will always be here to support you!!

Take care,
Carolyn

[dkdean]

Just sending positive, calming thoughts your way...this is definitely a journey full of an astounding mix (of CRAZY!) of symptoms.  I found I felt much better when I felt heard (by a NS who specializes in Chiari) that I did have CM and it was causing my symptoms...it allowed me to 'move on' and not question each and every minute symptoms.  At this point, there isn't anything I can do to change the symptoms,...I've done what I can to not cause more symptoms (ie. high-impact stuff), and I enjoy the silliness of my kids, take time to snuggle, and stop to smell the roses (or just a nice fresh breeze).  I figure at 32 years old most people don't get a perspective 'boost'--and I am really trying to take things as they come.  "It is what it is" is my quote of choice.

I also have a really big glass of wine each night and try to relax.  Not easy and I know the stress and wondering and questionning are abundant (esp in the beginning)--but, I am getting to a better place with it and the symptoms--they don't scare me as much now.

And, my kids (son esp--age 5) know that sometimes mommy's brain isn't working quite right and we may need to stay home (ie not driving) and snuggle...it's all okay and the kids do adapt to the changes.

Good luck.  Got to babbling here as the kids play in the yard :-)

[LisaM46]

Hi Star42,

I was just dx in May of this year with CM, and I also have an 11mm herniation.  I am 46, and mom of two teens.  I also have bone spurs and degenerating disks in my neck, and my neck has lost it's natural curve (dx in April this year).  I also have mitral valve prolapse, and have gone through the palpitations and "extra thumps" that have scared me in the past.  (My dad didn't live to see 60 - heart attack.)  Anyway, I've been through the anxiety with the heart & chest pains, and made myself worse over it.  For me, seeing a highly recommended cardiologist, getting the workup, and allowing myself to believe I made a good dr. choice, I made myself put my trust in him, which allowed me to relax over the heart issue (for the most part ;).  I still get palpitations & thumpies, but not to the extent I did when I was allowing myself to fixate and worry - it's just an ugly cycle.  The more you worry, the more chest pains, irregularities you seem to get.  I did take a beta blocker for a while which calmed the palpitations & my nerves until I could relax about it.

When I was first dx with CM, I was scared too, and I still have those moments.  I've certainly had my times where I've cried because of fear of the unknown, along with the pain.  Especially before my first NS visit a few days ago.  (I even had a nightmare where a dr. told me I had brain cancer & three years to live, ugh!)  But, I try to remember what my new NS's assistant told me - It's not life-threatening.  The other thing for me - as long as it isn't cancer, and I get to continue to be a mom to my kids, the gloves are off, baby.  It's ok to be scared now & then, but look - you have all of us other chiarians to commiserate with!

As to 11mm & a "normal life"?  Outside of what I previously thought were random "whatever" symptoms that couldn't really mean anything, my life was pretty "normal" until this January.  This year seems like someone put me in an alternate universe, and I can't get back!  I'm not sure what my NS will recommend yet, because I have to go in for new MRI's.  So, what do we do?  Enjoy your babies, get yourself a doctor you can trust, try to not worry too much, and don't over-do it.  Do you have a Chiari specialist yet?

Lisa