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1210493 tn?1527851309

Chiari symptoms “all in my head”???

I had an MRI of my brain w and w/o contrast.  Basically it was normal but the radiologist said slight herniation of cerebral tonsils but not sufficient enough to be determined a Chiari Malformation.  I looked it up as I had never heard of it but started experience headaches in the back of my head 5 years ago.  A year and a half ago I had a high speed rear end accident after which more and more symptoms began happening (side bar—-no lawsuit—-completely not relative.

I went to a Neurosurgeon who read my disc himself and said I only had a 3 mm herniation which I have read is considered normal, however my symptoms are just like what I have read about Chiari.  The NS suggested I get a second opinion.  I went to Penn Medicine which has a very good reputation.  I met with the NS and when he came in he was certain I needed surgery and that my symptoms were that of a Chiari.  The radiologist at Penn read my MRI and there were a few foci something about abnormal signal of white matter and hyperventricular (I don’t have my report in front of me) but there radiologist also read 3 mm of herniation.  I was then sent to One of Penn’s neurologists who thinks that my symptoms are all a manifestation from anxiety and depression.  I now go back to the NS, as of this moment surgery is still scheduled for 06/21/2018 and on the 15th all of the pre-admission tests and blood work.  

I feel very frustrated from my visit and I. Cried when the dr thought it was in my head—-I think primarily because I thought I found an answer.  If surgery won’t help I don’t want it but my gut tells me that it is from Chiari.  My neck cracks frequently, horrific back of head headaches, an enlarged optic nerve. Spasms, tremor, balance and memory issues.
3 Responses
Avatar universal
Hi there...I just read your post. My heart broke for you! TOO MANY Chiari patients are blown off by doctors who have NO CLUE about the disorder AT ALL!
I'm hoping you decide to move forward and have the decompression surgery done! The sooner the better!!
SIZE DOESN'T MATTER when it comes to the symptoms that you experience, in my opinion! I've been in your shoes...left countless doctor's offices frustrated & in tears!
Unfortunately, there aren't many Neurologists that specialize in Chiari. Therefore they dismiss it! It's taken me 9 years, multiple states & multiple Neurologists, but I FINALLY found one who knows about Chiari & treats patients who have it! She has helped me more in the past 9 months than all of the others put together!
I've had the decompression surgery in 2012. Unfortunately it was not done correctly & left me in pretty rough shape. I just had revision surgery 6 weeks ago. I'm healing...it's been a long road, but I always stay optimistic!!
Don't be afraid to ask the surgeon any questions you may have!!
I wish you all the best!
3 Comments
Thank you so much, I hope that you have had relief enough of your symptoms that the surgery was completely worth it.  I now have a return appt on the 5th of June to see the Neurosurgeon.  I still want to go through the surgery (I am a little vain---like my hair being shaved), and if I didn't feel with every fiber of my being something is very wrong and impacting my life extremely negatively, I would not do it.  I just hope the the NS will still do the surgery.  My mom has already booked a flight here for the surgery from WI (to Philly).  I am sorry that you had to have revision and my heart is with you for health.  Your kind words mean so much to me.  I have my friends but I feel only someone else with Chiari/severe symptoms can really empathize with me.  After 12 years at my job (in a chemical environment ---- manufacturing supplies for the Acrylic/Gel Nail field as well as industrial adhesives) my boss (owner) has noticed my memory changes.  I wish you all the best too, sincerely.
Thank you so much for the well wishes...they're greatly appreciated!
I have no regrets about having the surgery done! My only regret is my choice of Neurosurgeons! Had the surgeon that I just had do my revision, been the one to do my first surgery, I think I would've had a better outcome & probably wouldn't have needed the revision!
Another set back for me, was not having the surgery done sooner. Unfortunately, I founf myself unexpectedly without health insurance, after my TC release in 2009. It took me 3 years to get my disability approved & it went retroactively to 2009, which enabled me to get the medical attention that I desperately needed! Had I been able to have the surgery done sooner & chosen a better NS, I believe I would've had a better outcome! I'm still permanently disabled, but at least since my revision, I don't feel like I got hit in the back of the head with a baseball bat 24/7!!
I know how hard it can be to talk to others that don't have it, so they don't get it. I'm here if you need someone to chat with! I don't know if this site frowns upon exchanging info...but you can email me anytime if you'd like to correspond privately...***@****.
Again, wishing you all the best! I'm happy to hear your Mom is flying in...you're DEFINITELY going to need some help when you're released!:)
Sorry, not able to send email info to you! If you use social media at all, there are many Chiari groups you could choose from on Facebook & Instagram, that can offer you more information, connect with others who "get it" & you may also be able to find other Chiari specialists, Neurologists & Neurosurgeons! Hope this helps you as you continue your journey to feeling better!!
620923 tn?1452915648
COMMUNITY LEADER
Hi and welcome to the Chiari forum.

I also went to Uof P and got nowhere as the NS there told me it was "above him"...with no suggestions where to turn next.

So, what I can tell you is you need a true Chiari specialist...having the right Dr is key !

As to what is Chiari.....the herniation is not the determining factor if you have Chiari...Chiari is a malformation of the skull, the herniation is the result of that  malformation. That said, many Drs even true Chiari specialists do not consider a patient in need of surgical intervention with a herniation of less then 5mm's BUT if you present with symptoms and other related conditions they would not turn you away.

You will also need to have a CINE MRI to see if you have a CSF obstruction...if not, there is not much a NS can do to help since the surgery is done to restore CSF flow.

It is possible to have related conditions that could be the root of the symptoms you are experiencing.Having a well informed and experienced Dr, they will look for and rule ALL of these out.

If you need help locating Drs to research let me know what areas you want to look at.
7 Comments
Hi SelmaS... I just saw that email addresses are not to be given out on this site. I went back & saw that it was blocked out, thank you!!
Also... I received the email you sent me. Unfortunately, there was no way for me to reply to your questions! I would REALLY appreciate that if there is a way to respond, you would let me know...there are many things I would like to share with you privately! Thank you very much!!
thank you SelmaS, yes, right now I am confused and frustrated.  In case I need it, how can I get the list of Dr's?  I don't know what the NS will say now.  He came in the room so confidant that I needed surgery, scheduling it that day, to them reading my MRI and then being sent to what I feel is a neurologist with his head in the clouds.  How can he determine within 15 minutes of meeting me that this must be psychological.  I am put together, professional looking, not exaggerating or saying all of my symptoms came on suddenly, this has been getting worse for the past 5 years.  I have continued to work, etc.  I was just offended I guess.  If it were all in my head at least tell me what to do.  Years ago I had been diagnosed with an Essential Tremor and Occipital Neuralgia but as the years wore on more and more strange things began to happen.  Thank you for the support.
LittleBarb, you have to accept my friend request in order to be able to see PM's (private messages) from me
To tonyam78- let me know where you can travel to and where your INS will cover you to go....I can give you lists by state.
The thing is it is ALL in our head, just not the way they imply.....I was given meds for anxiety and issues  that were more pysch like...and I knew then as I know now, it is not   a mental health issue but can cause many of us to suffer from stress and anxiety since Drs do not listen or help us by treating.

As  for a NS that wants to do surgery, that is when they are paid the big bucks.....that is their main purpose is to do surgery....a NL will DX and decide what is needed....Plus, if the NS was not a true Chiari specialist you most likely would not like the post op outcome of a Dr that , one rush you into surgery and two the Dr did not check you for ALL related conditions as  they can cause post op set backs and issues.
Thank you.  I didn't really look at it like that, re: rushing me to surgery (when I was there---they said they had an opening a week and 2 days later, I said I had to give work more notice.  This is something interesting to ponder and a very good point.  So I live in the suburban Phila area.  I would go to NJ, NY, DE, WI, MN (I am from WI and my brother lives in MN).
I forgot to say I have Independence Blue Cross insurance, not sure where all it will cover.  I have a pretty decent plan, it is a PPO, personal choice.  Sorry--forgot that piece the first time).
Hi, I have been reading the comments here and saw that if there is no CSF blockage surgery cant be done. Can that change? Can it become blocked and what happens if you have respiratory obstruction? Can anything be done for that? That is pretty much the only symptom I really get. Oh man! I'm freaking out right now! I don't know what to do :(
Avatar universal
I would look into more forums. On surgeries, outcomes and successes. Surgery is so serious. Mine is almost at 9cm and never had surgery. Headaches are now uncommon for me.  Twice about 10 & then 3 yrs ago two diff surgeons told me surgery will not solve issue. (Cervicala  3-6 are very damaged) I’m on a no acid diet, no pain killers, walk and work out regularly. Eat protein 4 times day, no sugar protein w coconut milk, mango in am,  natural carbs, no sugars, some natural honey instead, cheat maybe 1x on wknd. I’ve beeb treated for sleep apnea and TMJ. TMJ was a large pain contributor (also interfered w my eye-site). I’ve leaned about proteins nerves, muscuskeletal, etc. Healthy colon makes a huge diff on headaches. Light dinners & staying hydrated makes a big diff. I rearely drink alcohol. If I do it’s wine fr Oregon or WA or draft beer. No preservatives, so bad for the brain.
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