A hello to all b/c I am new here :)

Welcome Greetings and Introductions
1

Hello to everyone. My name is Teri and I am brand new to this Chiari "stuff!" I found this support group with a Google search for "Chiari online support" last night and am SO GLAD I did! After reading through many posts, I feel relieved and not so "crazy" anymore.

I was just recently diagnosed with Chiari on Sept. 30, 2011. However I have been dealing with symptoms since November of 2001. At that time, I was a perfectly healthy 19 year old. I was extremely active, slim, slept well, and was very happy! :) Early in the month I was stopped at a red light waiting for it to turn when I was slammed into by a tow truck from behind. He was not paying attention at all and hit me at 35-40 mph. That is when all my problems began. I had no broken bones from the accident, "just" soft tissue damage. Within a year I was diagnosed with Fibromyalgia, Myofascial Pain Syndrome, and was in and out of doctor's offices to help with my pain. Nothing would work well. Some things would work for short periods of time and then I would plateau and things would disintegrate health-wise again.

So now here I am, almost 10 years later. I have since gotten married to the most wonderful, supportive husband I could ever have hoped for and we have two energetic little boys. They are great, but tire me out! Each year, my condition gets worse. Winter is terrible for me, I feel better on hot, stable weather days. This past year was especially bad: loss of vision at random times, hands going numb at random times, forgetting words, dropping things, severe pain and fatigue, loss of hearing when I turn my head to the right, etc. If it were not for a cousin stepping in in September and saying, "This sounds like Chiari, ask for an MRI" I would never have even known about this! Looking at the symptom list on this site, I can easily check off about 80% of the symptoms without a second thought. They have just been my life for the last decade!

My measurement is "small" according to the medical field, so every doctor I see has a different idea and actually there are a few who are fighting about whether or not I even have Chiari! Very frustrating!! (Measurement is 3-4 mm on both sides) And they are all strongly pushing me AWAY from surgery so far at all costs. They say it has bad outcomes and that since my symptoms are either NOT related to Chiari, or are "debatable" as to whether or not they are related, it shouldn't be an option I consider now. I won't lie: I am terrified of surgery but my symptoms are debilitating at times and I have two little boys to take care of...

Can anyone relate? Questions, comments, concerns, etc are all appreciated and I will read every one. :) Sorry this got long...I tried to "in a nutshell" it as best as I could. But 10 years is a lot of history!

I hope each and every one of you have a good day today, even though I know for people with Chiari, it is rare! Enjoy what you can! :)

Teri

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Hi Teri, I'm Melissa. I too became symptomatic following a traffic accident in 1991. However, I was not diagnosed until last year, in August. I believe that is often the case w/ Chiari. We are born with it, but it seems to rear it's ugly head following a traumatic event.

I'm curious, does your cousin have Chiari, also? The reason I ask is, my sister came to me about 6 years ago and told me the same thing. "You need to have an MRI. I know what you have now, because I have the same thing." Of course I couldn't have it for a number of years due to personal reasons, but sure enough at 44 I was diagnosed.

Now I've tried 3 times to leave this & it keeps disappearing so hopefully it will post this time. I'm copying it this time, just in case. =]

btw, where did you find the list of symptoms, I have not yet found that.

Good luck Teri. Keep looking for answers. That's why I'm here too, as all of us I'm sure. Keep positive & Be well.

Melissa

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Welcome Teri...

Glad you found us...

Now there was a while back .."THE 5mm Rule"....if the herniation was 5mm or more than it was a Chiari Malformation. Now research shows..size does not matter...the surgeon goes by Symptoms, MRI findings as well as a flow study..called a CINE MRI...Pronounced like Minnie..as in Mouse...LOL

Have you had a FULL spine MRI done??? this is done to see if there is a syrinx( fluid filled cyst on the spinal cord)...this is very important to have done b/c Chiari is the main reasons the syrinx developes....I may be wrong on the Chiari being 1 of the main reasons....but I do know it is a huge contributing factor.

Do you see the dr. again..or are you going to get another opinion??? NS(neurosurgeon)...??

Good luck and so nice to 'meet' you.

Peace,

Lori

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Hi Teri & Welcome!

I am also pretty new to this site, and recently diagnosed after a FULL Summer of doing activities I now know I shouldn't have been. I have had the "main" symptoms for so long that headaches/neck pain, fatigue and memory issues are just normal life for me. When the new stuff started like pain/pressure in my ears, ringing, vertigo when I change positions, pain and numb tingle in my arms I went to the ER. That's were I found out I had this and have had it since birth evidently. My fun Summer caused everything to get worse. I am now wondering the same thing as you because most of the new symptoms are now gone again. My Dr's so far have said there is no need for surgery, that it would only make things worse for me in the end. However, I am going to Dr Oro in a couple weeks (a specialist for Chiari) and I was told he is very pro surgery. I'm scared and nervous. How do you make the decision? Is it really a decision at all? My kids, mother, business and partner depend on me for so much. I wish I had an answer for you. I just hope it helps to know that you aren't alone with this one. LOL If you figure it out first please let us know. =]

Mar

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Symptom list is on the discussion page at the top, along with questions that you should ask your doctor etc.

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Thanks everyone for your responses, "hellos/welcomes" and personal experiences. :)

To answer a few questions: I have had a MRI of my head, as well as full thorasic and lumbar MRI's to look for syrinx and tethered cord. Neither of those two things were seen anywhere in my scans. I do have mild disc bulging and some fissures in a few of my discs, but I am thinking that is likely from my car accident. I have sent the MRI images of my head to Dr. Heffez at the Chiari Center in Milwaukee. According to them, yes I do have Chiari and they would like to see me. Unfortunately they do not take my insurance and I don't have an extra $100,000 laying around to pay for everything.

Yes, my cousin was diagnosed with Chiari this past spring and went through the surgery in June of 2011. She is symptom free now and has no restrictions. Her case is probably the "best case scenario" I can find thus far. It's remarkable! Because of the "probable" genetic link, and my symptoms, she recommended I get tested. After reading some info on Chiari, I was on board with the MRI as well, since it was describing me completely! (My scary side note on this: My 4 year old has been having "bizarre symptoms" for about a year now that no doctor can diagnose. They are all on the Chiari symptoms list and now I am scared that my "baby" has this too! Do I go the same route to check a 4 year old for Chiari? How scary is it for the kids? Anyone have experience with little guys and treatment?)

Nothing more is scheduled for me. My back scans were "clear" and none of my doctors here recommend surgery. So as for the next step: I guess currently just live with it?!?! Not really sure...

Question: We have a family trip planned in 3 weeks. "Papa" is taking the boys to Disney. Mom and dad get to tag along. ;) We are driving because we cannot afford airfare and I am, frankly, afraid to fly with this and cabin pressure. But we are driving west and will be staying one night in Utah, with about 7200 altitude. Am I going to have major headaches? (Anyone with travel Chiari experience, your help is greatly appreciated!)

Thanks again to everyone. You have been very helpful and welcoming! :)

Teri

PS: Any info on other Chiari specialists/centers would be appreciated as well. I know there is one in Colorado, and another on the east coast somewhere? Anyone been to a place they loved (or hated) and have reviews they would like to share?

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welcome teri,

thankyou for sharing with us,

we all thought we were crazy before being DIANOSED, but you arnt and neither are we,

im glad you have a name to it

joelene

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Teri, first of all want to say welcome to you! And to answer your question about altitude…that is how my symptoms became worse. I was on vacation in S. Carolina, driving in the mountains. My head felt like it was going to explode from pressure, and my left eye went blurry. So bad I couldn’t see anything. I had severe pain in the back of my eyes. I came home and went straight to my dr. She sent me to opthamologist who said I had narrow angle glaucoma. Had laser surgery for that and the symptoms were still there. My eye dr did MRI and he diagnosed me with chiari. He then sent me to NS. I am having surgery this Friday. My symptoms did go away about a week ago, thought I didn’t need surgery. But I have had bronchitis for 3 weeks and the coughing brought them all back and with a vengance! So…to answer your question, yes altitude can cause you to be symptomatic. Marlena I believe had a similar problem when she went on vacation. I hope this helps. I know it’s not good news especially going on vaca. Im not sure if there is anything you can do to prevent it. Maybe try motion sickness pills? Good luck to you! Hopefully you wont have any symptoms and can enjoy your trip!

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Hi Teri! Welcome!

I went see Dr. Heffez also. He suggested surgery. I chose to get a second opinion by Dr Menezes. He also suggested I have surgery. I am schedule for decompression Nov 14 th. Most of us here have basically had the medical community and family think we are nuts. Lol. We all understand each other here. I wish you the best of luck. Send me a message anytime n

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Hello again Teri! Kay1990 is correct on my issues while traveling. I'm not sure if it was the altitude, but when I came home from vacation is when my symptoms went haywire. I'm still not back to my normal (or what I now consider normal for what we have), but I am doing better. If it helps, my headaches and pain didn't get worse while I was on vacation though. I still had a very enjoyable trip. I am honestly nervous about my upcoming trip to see Dr. Oro in Colorado because I'm afraid when I come back I will get worse again since I have to go through the altitude changes. I too am afraid of flying because of the cabin pressure so we are driving out. I do know from recent trips that a soft neck brace helped with my headaches from the jostling in the car. I couldn't wear it the whole time but it helped take some of the pain away during the ride. I hope this helps!

((Hugs))

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thanks for sharing your story. We all seem to have pretty much the same strugels and it is noce to know you are not alone. Good luck and i look forward to talking to you more.

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Very nice to "meet" you Christine and glad to have a fellow "just waiting" companion. :) I relate to your sentence on "hang ups about my medical treatment..." as a lot of doctors think I am nuts b/c I would rather treat naturally than with a drug, if I can help it! (I realize that there is also a time and place for medicine, but I am very cautious and I do a lot of research before I "ok" taking something.)

Anyways, I'm glad you said hello and I think we may become good Chiari allies! ;)

~Teri


Christine H. said:

Welcome Teri!!!!

So glad you're here sharing your story with us! I too am just living with it, even though it frequently gets me down. The symptoms rotate in and rotate out and that does make it hard to deal with psychologically. And yes Chiari can be very debilitating at times. I've had it my whole life, but was recently diagnosed in March. At first I was relieved to know what was causing me all of these problems my whole life. When I found this site, I was more than thrilled to join others in dealing with my new discovery. However, I soon had mixed feelings. One being, after all these years of searching for answers and a cause, I learned there's no cure. Secondly, I wondered what the surgery was for if it wasn't a cure. I quickly learned that surgery was just out of neccessity to preserve my quality of life. Thirdly, I realized that symptoms would therefore rotate in and out and continue to be a pain in the butt for me. On the other hand, at least I have support here and can at least gather a file to present to any doctor who cares to read it. I can now say, "I have Chiari" and I don't have to beat around the bush as to why I have certain hang ups about my medical treatment (like allergies/aversions to medications, symptoms, etc.). Because most doctors don't believe it causes all these symptoms, I realized that knowing what I have is just as vague and mysterious as it was my whole life. That part hasn't changed at all. I can't quite understand why there are not set standards for us and why we have to go from doctor to doctor to doctor to receive appropriate treatment, even if it's just a kind, caring professional who will listen and work with us as best they can. Well that makes two of us just living it and just waiting.......

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I have flown to NZ from England and back and also more recently to Germany and back without any problems with altitude and pressure but I guess it depends on the individual person. But then again I don’t really suffer from bad headaches, just have a range of other symptoms. It would be a shame to let your worries spoil your holiday as you may not be affected at all. Perhaps this doesn’t help, but try to stay positive.

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Staying positive is very good advise. :slight_smile: Last year, before I know about my Chiari, we traveled through the mountains and I got really sick. I never had before that trip though…So I am nervous this time. But I’m still going and I’m going to have fun with my kiddo’s as best I can! :slight_smile:



Serenata said:

I have flown to NZ from England and back and also more recently to Germany and back without any problems with altitude and pressure but I guess it depends on the individual person. But then again I don't really suffer from bad headaches, just have a range of other symptoms. It would be a shame to let your worries spoil your holiday as you may not be affected at all. Perhaps this doesn't help, but try to stay positive.