New diagnosis, difficult to find help

I'm so happy to have found this forum. I was recently diagnosed with this chiari malformation and the way of diagnosis came in such a random way.
I've had migraines my entire life. I'm now 28 years old. Recently, in the last two years, the symptoms changed. I started to get this pressure in the back of my head and severe neck pain that basically rendered me disabled. I could not do anything because even taking steps to walk felt like my head was smashing into my spinal cord. Little did I know that this was literally what was happening! I had a headache last for 4 days once and I ended up going to the ER because I couldn't handle it anymore. The PA I saw said that I should probably see a neurologist and get a brain MRI since my migraine symptoms are changing.

Fast forward to the neurology appointment: The doctor just didn't seem to care nor did he even listen to half the things I said. I walked out of there with three prescriptions, an anti-inflammatory, a muscle relaxer, and a stupid anti-depressant. I was pretty upset because I truly felt like something was wrong and he just didn't care. I even literally said the words, "I feel like my head is smashing my spinal cord!"

Fast forward to this month, I'm seeing an ENT for problems related to my throat/lymph nodes and he orders an MRI of the soft tissue. I asked him if it would be ok  to check my spine too since I'm already having a soft tissue MRI. I told him about about my headaches and the neck pain I get that cripples me. He ended up agreeing to order both the soft tissue and the spine series. The results showed a 5mm herniation of the cerebellar tonsils and two herniated discs in between c5-c6 and c6-c7.
I am in shock because I feel like I tried to seek an answer for this and I was pumped full of drugs and sent away. But what bothers me the most is the only reason I found out I had this is because I went and got the radiology report myself. The ENT doctor never called me with the results, his medical assistant called me and read the report to me and only mentioned the disc problem. I'm kind of at a loss for what to do. I will be seeing a primary care doctor today for the first time since I don't have one. I missed a lot of school last semester because of this and the only reason why I survived this semester is because of the pain killers.
I'm in the Washington DC area. I am very open to any advice you all can give me on what to do next. I'm having such a hard time finding a doctor to take me seriously and I'm really growing weary of this doctor hopping that I have to do.
Thank you so much for reading!

[burdzmom]

hey there!

glad you found this forum too - everyone is very very helpful and honest! i had chiari decompression surgery in feb 2010. 11mm herniation. not fun. my whole deal is really super long and actually im not wanting to retype it ;) so maybe if your interested to hear my history - check out all of my rants. thats totally what they are.
so-i think you really super need to see a chiari specialist. this site has a list of doctors by state that someone previously dealt with or has personal knowledge of and comes highly reccomended as knowing what they are talking about.
so many posts on here are, unfortunately, similar to yours. Doctors not caring, blowing you off....and so on. I get where you are.  the one thing i can say is that knowledge is power. educate yourself about everything related to the chiari and what is personally going on with you. demand answers. dont leave wherever you are without them. i know this sounds fiesty - but as you'll learn - thats how i got mine. if you arent ontop of this condition and whats going on, it can get worse and cause even more severe things to happen. every chiari is different too. some people function with incredible herniations as if nothing is wrong at all......others are crippled by a 3mm herniation. it all depends on your body. from what i have gathered on here, not may doctors are anxious to do the decompression surgery unless alot of pre surgery criteria has been met. i think 5mm is the "typical" size herniation limit that doctors go by. meaning - they wont operate on anything less than 5mm.
this surgery is life changing. it is not a cure. many of us live with post operative stuff for a very long time after.  recovery is long. very long. 2 years long!  yup - alot of stuff is touch and shoved around in there, so your body pretty much freaks out and has to take time to heal. i am coming up on my year anniversary and (as you'll read) this completely changed my life. im still alive, here to see my little girls grow up and enjoy life. had i not had the surgery, "i was millimeters" from death" as one doctor put it - i dont know if i would be here now. no one knows really.
its alot of unknown too. since everyone is different. my take on doctors is that they will give you what the majority is. what the concensus of doctors is on meds, therapy, recovery, surgery . . . . everything. and you'll listen to them and take it as gospel. (they are doctors....brain doctors no less. why shouldnt we listen to them?!?!?)
Try not to get discouraged when one doctor doesnt know what hes talking about and blows you off. unfortunately - its all happened to me and there are so many stories on here about that too.
get a good doctor. one with good knowledge of the chiari - and surgical experience. i went to Hopkins for a follow up and i know the center there has phenomenal doctors and surgeons that are very good with chairi. some people on this board even go there or have surgery there.  If you are close to JH - try there! why mess with bullsh*t local doctors with no chiari knowledge?!?! if you gotta go - go with the best!

hopefully i helped you out a bit. let me know if i can do anything else for ya.

in a while crocodile <3

jilian  

[jessica78203]

hello my name is Jessica
I have those exact discs herniated in my neck as well, although mine were the result of an accident. I get headaches and crazy pains as well.
Do you recall ever injuring your neck in any way?
The doctors doped me up on all kids of drugs as well and they only eleviate the pain temporarily.
The only thingI can suggest is to put hot or cold packs on your neck for like 15-30 minutes. It helps with the pain.
I hope the doctor you are going to be seeing helps you. You may want to ask him or her to send you to a ain management doctor. Thats where I was sent and it helped sooo much.
I hope you find some kind of relief.
Keep me updated ok :)

[Braintoobig]

Thank you ladies for your replies! First off, unfortunatly I'm all too familiar with being tossed around from doctor to doctor when they don't want to listen. I have endometriosis too and it took me forever, and a bunch of different doctors to finally find one to help me. I was really sad to see that this is yet, another thing that I'll have to fight for. I swear if you don't have cancer or diabetes these docs just don't want to be bothered!

To answer Jessica, I've had multiple head injuries and have injured my neck. So I'm pretty sure that's where my neck issues are from. Is Chiari connected to head injuries at all?
On top of all this I've been fighting off mono too! Mono is nasty! I've been sick for 3 months. This is how they found the chiari because they were checking out my swollen lymph nodes in my neck.
I've been to a dang neurologist for this! ugh that jerk! He just gave me antidepressants and told me to see him in a month. I'm not depressed! My head feels like it's smashing my spine!
I saw my primary care doc today with all of these results. Since this was discovered in a neck MRI, he's now ordering a brain MRI and referring me to a neurologist. I'm worried that this neurologist will just tell me it's not serious and be done with it. I guess one day at a time!

[jessica78203]

Well I hope you get the answers that you need.
My case is a little different because my lawyer is getting all these doctors together for me and they are finding these on their own. I initially didnt want to get a lawyer for the accident because I felt fine @ the time and felt I didnt need to go this far with the auto acident. but I am sooo glad I did get the lawyer because of the fact that my pain is intensifying and more diagnosis are coming up. in a way its good because I am getting the attention i need and I dont have to go looking for answers like you ladies do.
All in all we are going throught the same things and it feels good to have the support and someone to talk to :)

[pamk5]

Hello and welcome.  We are glad that you joined our little family but sorry you are sick.  What you are getting is what we call "the royal chiari runaround".  The best thing you can do is find a Chiari specialist it will save so much stress and frustration.  I went to several local NS's and NL's prior to going to a Chiari specialist and I tell you the validation that you dont have to prove your symptoms is so worth whatever travel you have to do.  Take my advice and those above, find a CM doc sooner then later. Otherwise "the runaround" will drive you nuts and the last thing we need is more stress.  

I was diagnosed after a high speed rearend collision to answer your questions about head injuries.  The way it was explained to me is that after head trauma your body looses the ability to compensate for the neurologic deficits caused by CM.   Trauma to your neck can definitely cause arthritis later in life which leads to all kinds of not so fun pain.  I have had whiplash injury 2 diff times and I have some of that now in addition to spondylosis and DDD.  Good luck to you and let us know if you have more questions.  

[selmaS]

Hi and welcome to the Chiari forum.

As u have been told many on the forum refer to the treatment we get from drs "the royal chiari runaround"...it is dismissive, and we r told to take meds and pushed away....the drs feel since u were born with this, it could not possibly be causing ur symptoms and do not even tell many of us that it was on the report.

It is considered an incidental finding.....please read the poem at the top if u haven't already...it explains a lot.


Drs that r not true chiari specialists go by the old school methods of dxing and  treatment...many r under the old guise that the herniation must be 5mm to be considered chiari when in fact it is the malformation of the skull that makes it chiari not the herniation...so regardless of the size, u can have symptoms and issues....I had lateral tonsils...in that one was 4mm and the other 6mm....I had surgery...and many true chiari specialists have done research and have coined the term chiari 0 for herniations under 5mm...and they do surgery...the issue is obstruction of CSF flow..and it needs to be restored....surgery is not a cure or a fix, just a means to slow progression and restore CSF flow.

Many of us do  have disk issues...and it is best to have ur full spine checked to rule out related issues like a syrinx, tethered cord....etc....


Once u see a chiari dr u will see a big diff in the way u r treated.-here is a list of drs compiled by the members here....u do have to research the dr as this is not meant as a referral.http://www.medhelp.org/posts/Chiari-Malformation/LIST-OF-CHIARI-SPECIALISTS/show/1293483

We r happy to have u join us, but not happy for the reasons u had to seek us out.

"selma"

[jessica78203]

So can someone explain to me what exactly  Chiari Malformation is?
Is it something a person has and doesnt kno it and  triggered by injuries in the neck?
And what are the symptoms ... I'm wondering if I have this?

[Braintoobig]

I have a couple basic questions.
What do you all take for the pain?
Do you always feel symptoms of this or does it come and go?

[Braintoobig]

Oh and I was thinking about the whole spinal cord check thing. I have an extra lumbar vertebrae. In stead of L1-5 I have an L-6 too. It showed up on a random back xray after a snowboard injury. It has never bothered me so I just know its there. It has, however given me some pretty awesome back flexibility and I'm kinda tall. I'm not really flexible anywhere else outside a normal healthy adult but my back is super duper! lol

I will be getting a brain MRI tomorrow then seeing this neurologist I was referred to. If he doesn't take me seriously then I'll look for a chiari specialist. I would really like a spine MRI because I feel things sometimes, like shooting pains up and down my thoracic spine. It just spontaneously comes and goes. It's like I'm getting zapped. I sure hope he takes me seriously!
Thank you everyone for replying!

[Braintoobig]

Oh my God I just keep thinking about this! It explains so much! I remember when I used to take yoga and they would have you sit Indian style and then push your chin to your chest. I could never do this because it would cause this horrific electrical shock down my spine. I still can't do this to this day. It feels like my spine is being stretched too far and it will zap me!
I just keep thinking and thinking and I keep remembering this that could all be explained by this! Geez I can't believe this! All these years!

[thieb9]

I just sent you a pm, check your inbox

[Spaceystac]

That electrical shock sensation you describe is a definite sign of cord compression, and extra flexibility can be a sign of connective tissue disorders.    
You must keep fighting, you are young and strong and you must keep being you own advocate. No one cares about your health as much as you, so we are all forced to take the info into our own hands and search for the doctors who will help.
I am so with you feeling like you arnt sick enough to get some help, you were lucky you had mono in a way, that got you your mri.  Glad you found the forum, keep on posting!

[Braintoobig]

Wow thank you. That shock thing is so weird! I can flex pretty far backward with my back but as soon as I try to flex forward, forget it! ZAP!!!!!!!!!!!! AHHHH!!!! Tazer gun! LOL!

I'm absorbing all of this now. I'll keep fighting the good fight along with you all!

BTW, why does it seem like this is more common in women than men???

[selmaS]

Jessica...Chiari is the malformation of ur skull in the area which holds the cerebellum part of ur brain which consists of 2 tonsils.
This area gets overcrowded and forces the tonsils out on onto the brain stem.....the shape of the tonsils may cause a obstruction of CSF flow which in turn causes many of our symptoms.

Yes, it is possible to have this condition and be unaware of it...the reason I feel is we and our bodies compensate for the pains we feel and adjust...and consider what we feel when doing an activity to be "normal" as we have always had it.....

We do have a symptoms list in the Health Pages....however, the list is short as it only covers what most drs will recognize as chiari symptoms....we on the other hand have a manifesto of symptoms started as it is quite lengthy.


Briantoobig  - chiari symptoms do cycle, so yes they can appear to come and go.And we r prone to disk issues....many r normal aging issues, but we tend to get them earlier than most.

Many times an injury will trigger the symptoms to get worse to the extent that we have to pay more attention...most times pain meds will not touch these headaches....
it is a matter of avoiding what triggers the HA's and doing things in moderation to avoid the fatigue as well.

A neurologist(NL) will only do testing and may give u pain meds and or refer u to a Neurosurgeon(NS) ....it is very important that the NS u go to is in fact a chiari specialist and not just a NS that does chiari surgeries.


I am not sure y woman seem to have this more than men, but like ne health condition men r less likely to go to a dr where a woman will.....

"selma"

[Braintoobig]

Why is it that doctors hide this diagnosis from us? It shows up on the reports and they don't tell us??
The ENT I saw had no intentions of telling me about this even though I was symptomatic. Only by getting copies of the reports did I discover this. It seems to be the case with everyone here! Why would a doctor hide a diagnosis from us? Do they just pick and choose what they want to treat and then leave the stuff they are unfamiliar with alone?

I'm planning on going to medical school and I would never imagine in a million years not telling a patient what they have. It makes no sense!

[hdavids]

That is a question I would like to know too LOL

As far as I know, here where I live Dr. seems to know little or nothing about this condition and therefor not giving me any info bcuz they don't know.

A PCP I talked to had never heard of Chiari or Syrinx!!!!  but my NL did know and dismissed it as not really causing my symptoms.. but I am lucky I think, he is changing his mind lol

Braintoobig: I hope you find a good NS that is willing to listen to you, if not find a specialized C&S dr. That saves you a lot of running around and stress. I took the advise they gave me here and sent all my stuff to TCI in the US.
Best thing ever that I accidentally found  this forum lol

best of luck :)

[Braintoobig]

That's just it though! Just because they don't know what it is doesn't mean they should just dismiss it as nothing!! No doctor knows everything! Geez what's wrong with these people??
It just boggles my mind!

[Braintoobig]

I was just telling a good friend about my diagnosis and he totally blew it off saying "oh I get cluster headaches. I know how you feel."
Um no, YOU DON'T know how this feels!!!

I'm getting kinda tired of people giving me this type of reaction. What's even worse about this friend is he's in PA school! I sure hope he doesn't blow off his patients like this!

I'm going to stop telling people. I'm tired of them telling me that they get headaches too, or migraines, or whatever. I know what migraines are, this is different!

GAH! sorry I'm just venting. I'm totally a noob to this whole chiari thing. I only got my diagnosis 3 days ago. I'm sure you all have dealt with this kind of crap already.   :(

[hdavids]

No need to say ur sorry, we do this all the time.. It is better to vent here where everyone knows exactly how you feel and can realte. were all fighting together :)

I don't have dx of chiari but I do have a syrinx, I have only a 1mm herniation of the tonsils and I have been told that it´s just fine no need to do anything, that is why I sent it to TCI I want to hear that from someone who is specialized in both C&S then I can be calmer :)

Not many of my friends understand what these headaches are like, but I guess I am lucky that my family takes it seriously and  are willing to do just about anything to find out what is going on

[hdavids]

Lol relate is what I meant... English is my second language so please forgive me if I sound sometimes out of it LOL  and sorry for any other typos or word that do not belong there hahaha :)  and please do laugh at this bcuz I do :D

[jessica78203]

I haven't been diagnosed with any of these, but I have a injury to my neck and get frequent almost migrainish headaches that are unexplained and I've been told that that is the source of my problem.

To:Braintoobig
Its good to get things off your mins and chest. At least you know you are talking to people who care and are going through simula situations if not the same. :)

To: hdavids
The sad thing is I have typos many times and english is my only language.... lol..... so feel free to laugh at my mistakes too :)

[sanukilady]

To braintoobig:  ENTs are fabulous.  My neurootologist at least led me in the right direction.   As for my NL, I can't tell if he knows about chiari malformation or not.  Another doctor in the practice snuck in the MRI for me while he wasn't there!  I'm used to practices giving me literature, but here, nothing.  Even my physical therapist gave me literature on chiari malformation!  I'm sending you a pm with some local 4-1-1.

[sanukilady]

Can anyone shed some light on this one?  I keep forgetting to ask my NS:  what exactly is a "chiari spine?"  The 8/10 spine MRI result read as such with the head being chiari, of course, but spine?  My spine feels...car accident 1 wk ago + flexibility-reducing PT regimen but...  I'd better not be getting a syrinx.  You better not be back there!  I'll sic my cats on you (like they'd listen)!
Argh:  I twist my back and get a headache, complete with numbness and dizziness.

I am never bored with chiari.

[selmaS]

Hi, with out knowing who wrote the report it is hard to pinpoint exactly what is meant...it is a broad meaning...it could refer to the brain stem being compromised, or, that u have mild scoliosis as a result, or other disk issues that chiarians r prone to...

Most NS do not read the reports, but read the MRI's...and decide for themselves ....these r opinions expressed by an individual and it is diff to read into what is meant with verbiage like that when it is not a typical term used to describe chiari or the spine as I have not been able to find nething remotely close...

U may have ship lash...if u were in a MVA did u report this to ur chiari dr?...this will affect u....

All ur muscles will twist and pull....

"selma"

[sanukilady]

Thanks.  I'll ask my NS what it is, but I can figure out what it probably is.  Likely it's the clivo-axial spine angle.  My NS explained what was going on in the MRI, but the report just said "chiari spine."  So, it looks like the same two things are wrong, but not more.