low laying brain tonsels

[IamMel]

Hello,
I am very comforted to find this site. Since last week I have been in the emergency room 3 times.  I have had cat scans, mri's, and eeg's not to mention lots of blood work.  Within in the last week I have had 3 episodes of complete right side paralysis (kind of like a stroke). and my left leg loosing control from my knee down.  At first they thought I was having migranes because I first went into the E.R. with a horrible 3 day head/neck ache and they thought the other symptoms could be a migrane variant.  Now with the continous symptoms and because all other test were fine my neurologist pointed out today that my brain tonsels were indicated to be low on my previous mri, but he didn't think that this could be causing these symptoms.  But since the eeg came back normal he is recomending me to the area neurosurgeon to check out chiari.  He was very reluctant to tell me this.  I am very confused/scared.  Can Chiari symptoms just pop up like this.  I am teacher, and was already told not to come back to work until my episodes stop, but my doctor can't give an answer if they will stop.  Meanwhile I wait around for the next episode to come and am very frustrated on how this is affecting my teaching and being a mother of twins.  I can't get in to see the neuro seurgon for two weeks.  Besides the episodes I also have extreme neck pain.  My family is very frustrated and beleive that I don't have this and the Dr; doesn't know what he is talking about.  Do you think Chiari might be a possiblity and if so have you heard of Mayo clinic.  I live a couple of hours away and wonder if I should go that route.  Thanks for listening to me babble on, I appreciate any advice you have for me.
Take care all.
Mel

[StormyNights]

Not sure anyone really knows why symptoms start, and if you ask several docs that question you could very likely get different answers from every one of them. As for mine, I think they started progressing rapidly after a particularly nasty fall I took outside of my house that gave me a pretty good head snap. Others will tell you that theirs started after an auto accident, and still more will tell you that they had absolutely no trauma when their symptoms kicked in. Everyone's body is different. Wish I could give you a better answer than that, but realize that while we all have different causes, we do all understand and we will be here for you.

Stormy

[not_all_tonsils_are_in_your_throat]

My daughter suffers from Chiari, has had on un-successful decompression and we are waiting for an appointment at Mayo.  We have been to 4 other Neurosurgeons, all with similar responses (the first surgery was too conservative") Since we stated the new quest for treatment the Chiari Institute has come under fire for negligence (hate to hear that, they were supposed to be amongst the "best")  we are going to make our choice Mayo based on the US best hospital ratings putting Mayo at number 1 for Neurosurg.  If you have to deal with it a second time you sure want to have a better chance of getting it right.....    right?

Anyway, as far as symptoms...they can be mild to severe depending on the weather (barometric pressure) and if she has done anything strenuous or tiresome... hang in there, life will get better, it always looks bad when you are feeling the worse.

Remember... Doctors "practice medicine"  they are human and don't have all the solutions.  But t is worth the extra time to find out everything you can about anyone who is going to be messing with the grey matter .

[jyojlynn]

I can really sympathize with the problems you are having - as can most of us on this site!  There are a lot of weird symptoms to Chiari, but my NS told me that Chiari had NO symptoms.  I was really in a lot of dispare for quite a while last fall and winter, but am doing a bit better now.  I too have pain in my neck and shoulders, so I know that intense pressure feeling.  Hang in there and listen to what your body is telling you. I hope your pain gets better!

[Sarah_Marie]

I am so sorry to hear about your problems. I can really sympathize with you. I have been having the same problems. I was diagnosed in the beginning of April. My problem just started about 2 years ago. I can remember being younger and having headaches every once in a while, but after I had my daughter is when my syptoms really exacerbated. I began going to the doctors for headaches and back pain that were both relentless and severe. I was also told they were migraines, and put on migraine treatments, but none of them worked for me. I was also told by the doctors, once they figured out the malformation, that they were not causing the problems that i am having. My best advice to you, which is what i recieved from this group, is find someone that specializes in this malformation. They are going to be the only ones that can really help explain your symptoms and things to you. I have wasted so much money going to doctors that can't tell me anything. I dont know if this helps you, I hope it may. I will pray for you, and keep you in my thoughts. I know what you're going through, and sometimes it helps just to talk to someone that knows how you feel. If you ever need anything I am just a click away!! God bless you, and keep you safe. I hope you have a pain free day!!

Sarah

[angie343]

Hello and I am sorry to hear what your going thru. As a parent of a 20 yr old that was just diagnoised with Chiari and tethered cord syndrome ( those two usually go hand in hand) I completely understand what your going thru. My child was perfectly fine during her infant, toddler and childhood years. Until about two years ago her left leg went completely numb and she had a lot of lower back pain. We went to so many doc but they could not find a diagnose. She went thru a lot of pain without any answers only wrong diagnose. We found out that unless the doctors speclize in Chiari malformation your symtoms may go misdiagnosed.
Try going to the Chiari Institute in Great Neck NY they will help you as they have helped my daughter.
Yes, the symtoms vary and even subside for a few and come back stronger and with different symtoms too. My daughter had surgery for her tethered cord and has had some complications after her surgery but she is doing fine. Her Chiari started acting up about three weeks ago with terrible headaches and stiff, pulling neck and her shoulders hurt too  so the Nuerologist put her on migraine meds. That has helped her migraines.
The nuerosurgeon told her depending on how bad her symtoms are they may need to do another surgery at top of her back behind her neck area. We pray it that that won't be the case but with this birth defect it is like ticking time bomb. Sorry for saying that but it can get very fustrating cause you just don't know when the day will come when the symtoms become unbearable, and from what I have read up on with all this some surgeries require other surgeries, blood patches etc...
Keep strong and pray to your god for support it helps. Best of luck to you and your family god bless.

[selmaS]

Hi Mel,

We all tend to have diff symptoms.....no two of us have the same symptoms.And by going by my own symptoms they do tend to cycle and change.

This forum is a great place for support.....ask ur Hubby to pop on and just read some of the threads to understand what it is like with this condition.

Make sure u get checked for chiari related conditions and a CSF blockage.Most drs including NS understand how this condition can and does affect those that have it.

Since u r in Rochester , U may want to look into The Chiari Insitute in Great Neck, NY.

If nething google their web site it has alot of info that may help to get ur family to understand including video's.We also have Health Pages here on MedHelp that can also aid in educating them.

If u just need to talk....we r here! : )

"selma"

[IamMel]

Thank you for responding.  I did read about a Chiari success story from Mayo Clinic in Rochester.  I was hoping to go there since Madison is further away.  However I still have very little support.  Parents and husband think I am overreacting and that the local dr's are overdiagnosing me with chiari.  Does anybody have burning neck and shoulder pain.  I have been taking ibuprophen, but it hasn't been working.  Any other suggestions.  I have stopped taking my migrane medication because I think that might have been causing my right body paralysis, and left leg loss.
Thanks
Mel

[selmaS]

Hi Mel...as another person with chiari I can relate to how frustrating it is to get to the right drs and get someone to understand what is going on. I also wonder what caused my symptoms to worsen....I have had issues on and off most of my life...but things got worse and I am not sure y.

So, yes it can happen...y it happened to u I can not say just as I do not know y mine changed.

I am not aware of ne chiari specialists at the Mayo clinic.....u do have a chiari clinic of WI in ur neck of the woods...u might try that for more info.

"selma"