HELP NOT SURE IF ANYONE LISTING TO US

[Cathie9696]

My Husband is 37 and has been sick recently symptoms ( ringing in the r ear, unstable gait, fatigue, limbs feel heavy and weak, short term memory loss, sensitivity to cold in hands)  He has also been diagnosed with depression and ADHD.  He has also had headaches usually in the front of the head.  These symptoms that he is having have been coming on one at a time over a period of 2 years except for the depression and ADHD, Headaches.  I finally became and advocate after he went to the ER two weeks ago and he couldn't take it anymore,  His statement was I know that something is wrong in my head.  He had an MRI showed nothing and then they did another with more slices and contrast and it showed mild asymetrical Chiari 1 malforamtion 7mm below the fogeman.  The Dr. has sent him back to work where he works with heavy equipment and I am not getting any answers because the word MILD was used.  Is their such thing as MILD Chiari 1?  He has had many different test to rule out many other things blood, CT's ect and everything but the MRI came out ok.  Where do we go from here and if he does have chiari 1 what should I do I feel like giving up and that noone believes or will listen.  I also understand that you should not have an LP with this and they are considering doing this won't that hurt him because of the CSF level?  We are both looking for some guidance.  
Thank you
HELP

[selmaS]

One answer I found in understanding the term mild chiari is that most NS look at the herniation...not the overcrowding or the CSF flow which is what causes the issues....so the dr sees a herniation of 4 or even 5 mm they saw it's mild......u can have a herniation of 9 mm and if there is not over crowding or CSF blockage most likely there r no symptoms...but it should be watched and the person warned to avoid things that could trigger it to bcome more symptomatic.

U need to find a chiari specialist to get to the right treatment.

[Devin215]

Hi Cathie,
I can relate to you and your husbands frustration. I was recently diagnosed about 2 months ago after searching for answers since I was 9. I would get REALLY BAD headaches and up until recently, I started to stutter, I would get twitching in my face and finally in March all I did was sit up from the couch and crack my neck and got a super bad headache, the worst I ever had, I pretty much blacked out I couldnt bend over I pretty much almost couldnt walk so I got rushed to the Emergency room....2 doctors said my MRI was fine of my head....Finally I refered myself to a Neurologist who looked at the same MRI the other 2 doctors did and he found my "Mild" Chiari Malformation....My herniation is 4-6mm from what they tell me....I don't understand how it is "Mild" with all the symptoms I have...All I can say is don't give up and don't take no for an answer. My NS refused to do a full MRI of my spine so I went around him to my normal doctor, Explained the situation and got my full MRI of my thoracic, lumbar, and cervical spine and I will be seeing my neurologist today who found my Chiari to go over that. Basically just cover all your bases no matter what you have to do. Some doctors just pass the buck because they either don't know what they are doing or are too lazy to do the footwork. Unfortunately sometimes we have to do it just to get an answer and be heard....Keep your head up and don't give up.

[selmaS]

u r right about the LP...it can cause the herniation to grow......

Tetehered cord or TC...is where the spinal cord attaches to the spinal column and pulls down on the brain stem....most with TC will have an abnormally long brain stem.
It causes bowel and bladder issues....numbness of the extremities.....head aches and if u didn't already have chiari it could cause it to form. Once the TC is released it can reattach.....it can be caused by an injury or from scar tissue from a surgery...and it can be congential.

To know if ur DH has ne other related conditions his complete spine should be MRI'd...TC is found in the lumbar....a syrinx can be in the cervical. thoracic or lumbar spine.

Please look at the Health pages...there is a link in the welcome at the top of the page or to the left of the screen see the icon.

"selma"

[Cathie9696]

I have talked to the neurosurgeon today and they are meeting with  my husband again on thursday and going over his MRI he is also suppose to have an lumbar puncture that day, but after doing some research it say that people with Chiari should not have this procedure.  Is this true?  I am trying to stay really calm for him.  I'm just trying to be his advocate its just that I don't understand when someone who is not feeling well and have these symptoms and the Mri comes back saying Chiari 1 malformation that they are not interested in seeing him right away and allow him to go back to work.

I'm glad that I found this forum and all of you.  their is just so much information.  I even started to make a list of questions to ask the Dr.'s  Thank you all for all the support and help.  Ido have one more question thou what MRI do you need  to find out if you have a tetherd cord. and what is a tethered cord.  He did have a MRI of the brain and cervical spine with and without contrast.

Thanks again everyone

[chiarilinz]

It is very frustrating, I had doctor after doctor tell me it wasn't mine. I was diagnosed at 14. I had drop attacks. Massive migranes, depression, I would sleep ALL the time, black outs, memory loss. And finally when diagnosed in 2000 they said there was nothing they could do but manage the headaches and depression. So thats what we did for years. Finally in 2007 in got unbearable and I couldn't beat it any longer. It went for almost 2 months until I finally found a doctor who did the decomp surgeries for Chiari patients. He had horrible bedside manner and I wasn't very impressed with him, but at the time, I would take what I could get.  My Chiari was 8.5 mm. I've had multiples since. And right now I can't find another doctor to treat me because my other one basically said he did all he could do. Don't give up hope though. He knows there is something wrong. We all did. And we've all heard that we're crazy and our symptoms are over the top. They're not. Support him. There's a doctor out there thats right for him. If you really think it's Chiari, and you can't find any other explanation and they can't either, don't take no for an answer. I don't really think there is ANYTHING mild about ACM. From my personal experience. Take it from a zipperhead.

[ThePeachy1]

Hi Cathie and welcome, I am also new, and I can totally hear the panic in your posts.  I know that you are very worried about your husband and his condition but only a truly and I mean truly trained medical proffessional can really answer all your worries. There are some super smart people on here, and some really wonderful people and some people that have been thru things that I can't believe. 1 thing we all have in common, we all knew something was wrong, and we all met Dr's who want to either play it down, ignore it, blame it on something else or bascially act like we are crazy.  I still havent found a wonderful Dr, but there are people on here that have, and they are out there, you might want to check the listing in this forum of specialist in Chiari.  Speaking as a person with Chiari, I know that my husband appearing, calm cool and collected has brought me extreme comfort,  I know in fact that he has secretly freaked smooth out many times, practically ripping apart Dr's behind my back, but he always maintains this calm, and has never ever gave me a pity trip.  In fact I was lounging around quiet a bit today because I overdid it yesturday fully knowning I would pay today. He called home to check on me and said, hey honey just called to make sure your resting that brain of yours. LOL. Duh.  Yes it is super duper frustrating, there is nothing worse than having a loved one in pain and suffering and there is nothing you can do about it, so do what you can, help find him a really good Dr, be his advocate, make him smile and let him be strong when he can and lean on you when he needs to.  Hang in there, and best wishes to your husband.

[selmaS]

No worries...just don't want u to feel ignored...we can at times be a bit slow to reply.

I am glad u feel like this is a good place for u to come...I have found the same for myself.

Please feel free to PM(private message) me or post ne question u may have.

"selma"

[Cathie9696]

Hi thank you for inviting me in.  I didn't mean to write the post twice.  This is the first time for me and it was a little confusing.  I've done some reading in the support group it is filled with so much information.  I started to research some more.

This seems to be the right place. Thank you again

[selmaS]

HI...I answered ur other post....I hope U will have patience as we all have this condition and r not always on top of answering the posts as quickly as we would like.

This is a great group for support!!

"selma"