Chiari Malformation Community
im new to all this
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This patient support community is for discussions relating to Chiari Malformation and Living with Chiari Malformation.

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im new to all this

I too have chiari malformation I was diagnosed three weeks ago after having shoulder and neck pain for almost 2 years. The pain i suffer daily is so intense and i am allergic to so many medications that i cant take only a few pain killers but the doctor wants me to see the neurologist before he gives drugs. I am not due to go to the nero until the 7th of February. i would like to discuss a list of my symptoms and see what some of you could help with.
its started out over a long period of time. i used to get migraines all the time and the dr kept telling me it was from my periods. after having my kids and a hysterectomy at the age of 24 still migraines. my dr gave me many drugs and never a test.
I just stopped caring. I dealt with the headaches on my own stopped all the drugs because nothing helped. then thanksgiving 2 years ago i was out mud bogging with friends and hurt my neck and shoulder. I dealt with it but the pain persisted. so i finally went to the dr after 8 weeks of NSaid's i was still in so much pain sent me for a mri of just my rotators cuff event though i explained my pain to be in my neck and down my spine and into the lower underneath of my shoulder. Came back with being totally negative. and then the pain started getting worse only on my left side i started with numbness down my arm then pain then my hand clenching. He was convinced it was a nerve. i had enough. something had to be happening for this to be occurring. so i went and found a different family dr. immediately he noticed something was wrong i had weakness and numbness in my arm and face by then. he sent me to physical therapy which i couldnt handle and then tried relaxing techniques. and after about 5 weeks of no change except getting more and more pain and now dizziness and nausea and this pain that feels like someone i slowly pulling on the underneath of my neck he gave up sent me for complete mri with and without contrast and ct scans. I went in for a check up after my fiances heart surgery for the dr to say i have the wrong number for you and i needed to see you so glad your here. i was like um no we are here for him. next thing you know he says i found something wrong and its not looking so good. he diagnosed me with the chiari malformation and wanted me to get to a neurosurgeon immediately my insurance now wants me to go to neurologist first. But in the mean time he sent me to a medical rehab dr to do and emg to see what nerve damage i have since my arm and hand wont function proper she told me that i am am at 12mm below where it should be and some of my two blood levels are very wrong. does anyone know what these two levels are and what does 12mm mean?

I am very new and sorry i was long with it but i have so many new symptoms lately that its so hard to keep up. i have even been blacking out.
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620923_tn?1413427272
Hi and welcome to the Chiari forum.

First, I have no idea what mudd bogging is, but I am sure it is something that would be added to the list of activities to avoid.....

I also wonder if  u might have Ehlers-Danlos since u have sensitivity to meds.....

The 12 mm is the size of ur herniation .....too many drs put too much stock in the size of the herniation...what is more important is an obstruction to CSF flow and  overcrowding and shape of the tonsils......

I have a pic in my profile that can explain this to u......http://www.medhelp.org/user_photos/show/178385?personal_page_id=197028&photo_collection_id=1369

U deff need to get to a true chiari specialist.....u need more testing to rule things out like a syrinx, tethered cord, ehlers-danlos,sleep apnea, a CSF blockage and overcrowding......

We have  a list a drs compiled from our members....these were their drs, and the list is just that a list and a starting point, not a referral.....http://www.medhelp.org/posts/Chiari-Malformation/LIST-OF-CHIARI-SPECIALISTS/show/1293483
Please do research to find the right dr for u.

We r happy to have u join us, but not happy for the reasons that bring u.

"selma"
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1570846_tn?1295833227
i have a friend that had surgery for her Chiari and I really really liked her dr i am trying to get in with him.. my dr referred me to a dr i have heard nothing but bad about. ok there were two things the dr. metioned which he looked for in the blood and said they were abnormal and went with the chiari.. anyone know what the heck i am talking about
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620923_tn?1413427272
Sorry, not sure what u mean.....

May I ask is ur friends dr on our list?...we r always looking for drs to be added if they r not on and they r good : )
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1570846_tn?1295833227
no his name is dr gerald schell
989-799-8712
Saginaw Mi

he has a website too
www.svns.com


and thanks for your help i was really unsure what they were talking about.. i know the women i went to that i am not liking at all wants to run all these blood test checking estrogen levels and crap. i had a hysterectomy over 5 years ago not sure why they are running estrogen and progesterone tests
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620923_tn?1413427272
Well some with chiari can also have an issue with the pituitary gland which can have an affect on hormones...in fact I went into menopause early...so, it may be y they r checking.

Plus, we can have auto immune issues, like Hashimoto's thyroiditis...which can have an affect on hormones and  adrenals.....

And then there r those that r just into overkill on tests...lol...

.....so ask, it is a way to find out ...as well as always ask about getting copies of all tests and MRI's as it helps if u need a second opinion to have all ur info on hand.

"selma"
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1570846_tn?1295833227
Thank you very much. i am so new to this and just anticipating my neuro appointment. i wrote down all my symptoms and new ones as they arise and all my questions? you are very kind people here and i am sad of the reason we had to meet but very glad to know there are others out there besides me. Today has turned out to be one of those days i feel like i have no strength and i feel so useless. not sure if thats gonna change. i seem to be getting worse and just so tired out. i go to to school 4 days a week and care for the kids and do girl scouts and take my fiance to all his appointments when i can because he has a heart condition and now my dad is ill again. starting to wonder if ill ever catch a break. i know my body is in desperate need. my memory loss is getting so much worse too.
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620923_tn?1413427272
Just keep in mind that stress and how much u do can affect how u feel...chiari symptoms do cycle...so, try to rest inbtwn when u can...and avoid somethings that r not as important...we have to learn to say NO...in order to be able to do more or what we want.....

Moderation is key...listen to ur body....and rest as much as u can : )

"selma"
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1435895_tn?1304294841
I cant say much more than the ladies about have.  Except to reinforce the importance of finding a Chiari specialist.  Having your symptoms and all you are going thru validated is a refreshing experience.  I too have come close to blacking out many times mine is related to low BP and rapid heart rate which comes with POTS and NMH.  Do you have issues with your BP?  I am also very sensitive to medications and have a list of allergies a mile long.  Seems all this goes with the Chiari.  I too am not sure what blood tests they may be doing.  I honestly have gotten to the point I am sick of tests cause it all comes back to CM being the issue.  So if we know that why keep having more tests with the same result?  

Welcome and I am glad you have joined our little family.

Pam
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1570846_tn?1295833227
I have low blood pressure always have it was 94 over 60 last week.. my normal is way below 110/80 so idk no one has ever said anything but i also went to a really stupid doctor for many years. i have only been with the new dr not even a year and he has already proven so much to me by answering me finally what all my pain is. i am waiting til monday i am trying to get a sooner appointment put a call in thursday they said i should here by monday. but tentative date is feb 7... i agree i am just really starting all the tests. i had my mri's and ct's and that is how my Chiari was found. now its on to all the blood and rest of the tests. cant wait to see a neuro i have so much to ask..
so far as i said all i know is i have it and my number is 12mm so from here i hope we can find a way to try and lighten up on my symptoms and pains. I am hoping. i have never been a praying type but i am now thats for sure i do it daily and through out the day. i hope its not to late to start now.

thank you all for the warm welcome its much appreciated this is all alot to take in. and today has been one of those days i just didnt want to get out of bed the pain was high and im so worn out.. hoping everyone else is feeling well and doing good.
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