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Confused.Symptoms?How fast does Chiari Advance
I was diagnosed with Chiari when i was around 11, due to severe migraines. But was told to take 3-4 aleve when getting a migraine. We never really followed up with the neurologists until i was 17 and i started getting headaches again. I was re-diagnosed with Chiari, but was told that Chiari was not the cause of my migraines, eventhough it was used as the diagnosis of them. My family doctor put me on daily medicine for headaches but. told me to stop taking it when my headaches stopped occuring regularly. So i did, now headaches just kind of come and go. But i started working out daily running 3 miles a day or so. And then my upper back/neck area started tingling, almost a burning sensation. it would go down my arm. I went to the doctor he tried to give me a muscle relaxer, but i didnt want it because the hours of my job, i wouldnt be able to wake up and function properly. Since then ive gotten a new job, where the work is extremely repetitive. i can repeat the exact same motion up to 2500 times a night. and a lot of times it includes lifting 10-15lbs at a fast pace. I also look down, almost straining my neck. repeating this motion and my shoulder blade starts to get this burning or tingling sensation and it moves down to my elbow and into the last 3 fingers of my hand. I also get more like aching pains just as often in my left arm..and almost like needle pokes in the tips of my fingers. Ive not had an MRI is almost 4 years, How fast can Chiari Advance? and do you think these symptoms are due to Chiari and just being aggrivated by the repetitive nature of my job. Or would it be mainly my job.
Also, when i sleep on my back. I wake up with heacaches every time, and my arms usually fall asleep several times throughout the night. and my hand falls asleep all the time, even when i hold a phone up to my ear, or hold onto the steering wheel of a car. My neurologist said that i would most likely have to have surgery before im 30 because there was some type of pressure being applied to my brain stem. Im wanting to join the military and have lost 15 pounds..but i want to get this fixed before hand.
Also, when i sleep on my back. I wake up with heacaches every time, and my arms usually fall asleep several times throughout the night. and my hand falls asleep all the time, even when i hold a phone up to my ear, or hold onto the steering wheel of a car. My neurologist said that i would most likely have to have surgery before im 30 because there was some type of pressure being applied to my brain stem. Im wanting to join the military and have lost 15 pounds..but i want to get this fixed before hand.
COMMUNITY LEADER
Hi and welcome to the Chiari forum.
With Chiari, I would say yes this could indeed cause the symptoms to flare.....doing nething for extended periods of time can affect how u feel.
My DD use to perform with a local dance comp when she was younger and I had to find the right place in the audience to sit, if I was stage left on the far right and had to look left it would cause me issues, so I found being toward the middle or being stage right was better for me.(confusing with the stage directions as they r from on stage looking out)
Even in a movie theater if too close and u have to look up would bother my neck....
Hope that helps : )
What about holding a phone with your shoulder. could that bring on the symptoms if you have been doing this for a long time?
thank you all sooo much! =) this has all been so much help, lol ive informed a lot of family and friends of stuff that ive found on this site, and the people ive talked too. And their support is amazing.
COMMUNITY LEADER
Many of us have been thru that as well...too many Drs do not understand or know chiari and we get mis-dx'd and it is often suggested to be anxiety or all in our head, which is where the issue starts, but does not end.
Once u get to a true chiari specialist u will see a difference.
And I know how disappointed u r, I was an a huge fan of roller coasters too, and went dancing once a week...but as I got older certain things I loved doing, weren't as much fun bcuz of how I felt afterward....
I was unable to dance...and I knew something was wrong, Drs never found nething, I kept getting brushed off....I feel if I had been dx'd earlier I may not have as many residual issues now...I pushed forward to do too many things and that can do more harm then good....
Take it all one day at a time, find a chiari specialist or 2 and compare them...and go with the one u feel most comfortable...and do ur own research .
It is not a lost cause...I found several Drs that understand...read the poem by Dr O at the top of the forum.....http://www.medhelp.org/posts/Chiari-Malformation/So-I-Say-poem-by-Dr-John-Oro-a-Dr-that-truly-understands/show/1136687
"selma"
I actually had a 45 minute "initial care" call where they get all my info, they mailed me the materials so I could mail them back all my records and images, and then once they receive it all, you will get a call within 3-5 business days from them telling you what management care you need or if they want you to come in and discuss treatment options such as surgery.
Yes, and after I called them....they even mailed me mailing materials already paid for for my images and stuff to just return to them at no cost. So so far, it's cost me nothing. Definitely worth checking into.
That is actually A lot of help! Im in the process of trying to get an update mri. because its been so long. but im definitely going to look into it! Thank You So Much!!!
Casey, you are not far from Mayfield Chiari Center. I would suggest contacting them. Dr. Tew is reviewing my information and I feel more confident given his past experience that I'll get more help/better direction. Go to their website and look at their info. They do not take my insurance but are willing to look at all my medical records and scans/mris etc before even having to come down there. The consultation fee is $150 for me flat since Aetna won't pay. The consultation can actually be much higher but they told me they write it off for those that do not have the appropriate insurance. I asked them how or why they did that and they said that given so little resources for Chiari patients, they did not want to have to turn a patient away based on the fee so the maximum you would have to pay for a consultation is $150. Depending on what is said/done, I can then either go through them for surgery or go to another neurosurgeon who takes my insurance and knows about this type of surgery. I feel pretty confident I'm on the right track. Please check into it if you haven't already. I know it would be a 2-3 hour drive and I'm not sure what funds or resources you have available but they are willing to talk to you over the phone and have you send all your information to them. They then may ask you to either come into the office or if they feel they can give you treatment advice/options over the phone they will do that. Just a suggestion. Hope it helps.
it seems to be a fight to get anyone to look seriously at my chiari. i know how i was and how my body respond to certain things a year ago. and i know that the tingling and pain that ive been in isnt normal. definately not for an active 20 year old woman. i finally had to call my doctors office today and tell them that i needed an updated mri, and possibly an emg. and even told them the doctor needed to go do research on chiari otherwise i would have to find a doctor that is more understanding and willing to help. it seems like such a lost cause.
i am disappointed, just because i have been 2 years getting prepared to join. so my plans have to change completely. and ive been actively involved in 4wheeling, roller coasters..and most anything else on that list. and i can be the first to tell you, you may not realize there is a change. but i feel it every day now. ii was active in sports and always outdoors. and my job requires me to twist at my hips/waist. while reaching back and sliding about 14 pounds foward. 10 hours a night, all while my chin is basically attached to my chest... what kinda job would i even get that is somewhat chiari sensitive. i honestly have no idea. lol
COMMUNITY LEADER
It is not extreme if doing many of these activities affects how u feel...this list is one that shows which activities may trigger issues or flare up of symptoms in those dealing with them.
What many do not realize is just how participating in these activities can affect us even if we do not feel it...consider this, ur nerves r being affected, and it is thru ur nerves that u feel pain...if they r not working properly, it is possible u do not feel pain when u should.
Just another way to look at it.
That list seems pretty extreme, it almost seems as if one should lead a miserable life. Getting diagnosed with Chiari never stopped me from doing a lot of those things...my condition is most likely aggravated, though over the years I have not seen any change in symptoms. Then again, I haven't had an MRI in quite some time so I feel rather silly and am actually very scared to get my next one and hear the news.
My B12 levels are actually over the range. She said the range was up to 914 and I'm at 959. I am taking 400mg of magnesium per day now. This was what the dr told me to take back when I was taking migraine meds but he actually prescribed 800mg per day. Because vitamins etc tend to cause constipation, I found the magnesium can help relieve that problem. It's actually why I cut back. 400mg is ok. 800 caused me nausea and diahrea.
COMMUNITY LEADER
Talk to ur Dr about ur magnesium levels, if they r low no matter how much Vit D u take ur body can not absorb it, u need the magnesium as they work hand in hand.....
B12 is something u would also need.
"selma"
Gotcha. I just found out my Vitamin D levels are ridiculously low. Gee, no wonder I have "bone pain" and can't "breathe." Doctor calling in the prescription to get it taken care of. Before I did it for 10 weeks. This time they want me to do it for 20 weeks and get them checked again twice during this time to see if it's helping. I seem to be chronically anemic and vitamin D deficient.
An other thing with vitamines and other supplements. Always mention them to you doctor and pharmaciste to make sure that there is interaction with any of your other medications. Interactions can lead to complication, and complication can lead to death. Carefull with grapfruit juice too!
I'm not a specialist on vitamin nor a doctor, but there is so much stuff on the market that we are to be carefull. We should only take vitamine that are aproved by the healt official or your doctor and don't believe every naturaupractician or fad healt gouru on their miracles products, it's more for that it's there. But approved calcium and vitamine D are good for us if we are not overly strong on dairy product, I know I'm not!
Drew, another question...when you say caution on vitamins and supplements. Can you elaborate? I frequently have deficiencies and am wondering if supplements are bad for us or if you could elaborate on any info you have in that area. I don't want to be taking something or not taking something that could be detrimental or an issue for Chiari patients. I'll look online but if you have experience in this area, I would appreciate the input...from you or anyone who has knowledge on vitamins etc. Thanks!
After reading the list you supplied it is very disappointing of what we can no longer do. I did ride a motorcycle before my surgery. Traveled all over. I'm 16 mths post op and I did drive my motorcycle a few miles this past summer just to see how it would feel. My DH bought me a lighter helmet that is still DOT approved. It felt pretty good. Just wondering if this was the reason of not riding the weight of the helmet. I have a shield and didn't ride in the wind. I know it can be dangerous, I just don't want to stop every thing that I enjoy. The list was very helpful drewlas. I still don't lift anything over 10 pds and the straining you mentioned as you said can be dangerous. I wish you the best Casey788,, but I don't want to disappoint you neither but the military wouldn't be good for you in the long run. My son was in the military and it is very physicial. I had a physical job also before my surgery and it was suggested my my NS to quit. He said it would take 1 time to lift something wrong etc and I would be back into surgery. You have to do what is best for you. Just want to let you know we are here for you for support and understanding. We have all had to alter our lives because of Chairi. My heart goes out to you. Wish you the best.
Yes, I can attest to what Selma says regarding care at the VA. For the most part, general care I've rec'd at the VA has been great. For Chiari, they do not acknowledge or treat it. At least not in my case. They only treated me for migraines and the neuro said Chiari would not cause my issues. From what info I have gathered, even if they acknowledged it, they would only manage symptoms and would consider the surgery elective/not necessary as the more severe forms of Chiari likely would have been taken care of earlier in your life if you had any of the other forms.
COMMUNITY LEADER
Hi and welcome to the Chiari forum.
I see u got all the info from the members here...we do have that list of activities to avoid in our Health Pages and here is the link for those that may want to revisit it- http://www.medhelp.org/health_pages/Neurological%20Disorders/Activities-to-avoid-with-Chiari-and-Syringomyelia/show/986?cid=186
U will also get better care outside of the VA...just ask those trying to get care or even acknowledgement of the condition....
Life throws us curve balls and we have to be able to catch them and take a different path.....I hope u find answers and a new path.
"selma"
I do want to elaborate that there are people in the military with Chiari but can guarantee you 99.99% if not all were diagnosed after being in. It's a whole different ballgame depending on whether you were diagnosed before or after enlisting.
Unfortunately, I can tell you right now you will not be able to join the military. I was in and there is no physical way you can do this with the condition. The military is very strict on medical conditions and this is way up there on the major, non-waiver list. I absolutely do not want to sound negative or dissapoint or ruin your dreams. A lot of things can be waiverable with an individual evaluation but not this. I will also tell you because of the breathing issue, every time I was in "full battle rattle" I literally felt like I was being crushed and suffocated and at one point an ambulance was called within 5 mins of me being in full gear. Had they discovered I had this issue before I joined, I never would have been approved. You can always contact a recruiter or MEPS to verify but just didn't want to give you false hope. In basic alone, you will be hit in the head during pugil training, hand to hand combat etc. Not to mention 50 pound gear on your back and head while ruck marching and detail duty such as lifting heavy ammo boxes. I can tell you now that you would have to get a profile to not do these things were you to actually get in and your unit WOULD get to the point that they would dislike you very much for having to pick up your slack. Again, not trying to be negative, just wanted to give you a realistic view but definitely wishing you success in whatever route you take.
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