New to Forum--Overwhelmed By Chiari

[mama2twobabies]

Hi.  I am a 25 year old married mother of 2.  My Chiari story is quite confusing and frustrating!  For 6 years now I have been treated for Complex Migraines.  My first Migraine episode was terrifying and I thought for sure I was having a stroke!  I lost my vision, my face became numb and sagging, my left arm became numb and lost function.  I seriously thought it was the end of the road for me!  Anyway, after undergoing a CT and  being told 100% it was absolutely Migraines, I rested a little easier.  However,  I found more side effects than relief from Migraine medications and have spent the last 6 years in and out of the doctor's office and ER with terrible Migraine episodes getting pain injections and different series of medications.  After my last Migraine episode that landed me in the ER about 2 months ago I had finally had enough.  I decided to go to a Neurologist (something, yes I should have done years ago, but with two kids I had put myself on the back burner).  The Neurologist agreed with my Primary Care Doctor and assured me that he did not think I was going to have a stroke or a tumor, but he did get an MRI with and without contrast.  After not hearing anything about my MRI for a month, I breathed a little easier because the MRI guy had told me "No news was good news".  When going in for my follow-up appointment with my Neurologist 3 weeks after my MRI I told him about the "No news is good news"  and his reply was, "Unless it was so bad they didn't want to tell you on the phone."  I was floored!  I have NEVER had a doctor who literally had my brain in his hands have such a gross bedside manner!  I continued with my appointment because, well I needed answers about my symptoms.  After telling him my symptoms, he did tell me that they did find something on my MRI, but he didn't even tell me that it had a name (Chiari Malformation I).  He only told me that my Cerebellar Tonsils were herniated.  Hello!  Tonsils in my Cerebellum?!  I didn't even know that we had tonsils in our brains!  So, I went home, did my own research.  Called my own neurosurgeon.  Got my MRI report sent over (the MRI report is where I first saw the words Chiari Malformation I in black and white) and I am meeting with Dr. Daniel Barrow at Emory in Atlanta on June 10th.  I have no idea what mm my herniation is, nothing.  All I know is is that I have had a CT and 2 MRI in the last 6 years and no one has caught this and I don't know how long I've had it.  Maybe I've had it since birth.  I've had no trauma like a car wreck.  Every day is a struggle for me.  I have terrible headaches, which yes, may still be Migraines, but who knows at this point.  I have numbness of my arms, hands, face, legs and feet with and without the headaches.  I have loss of vision, double vision, blurred vision and what I call "staying vision" where I see things for a moment after they are gone kind of like you see a camera flash for a while after a picture is taken.  I have trouble driving.  I have trouble finding words, trouble with my speech, my neck and back kill me, I can hardly sleep because I have terrible muscle pains in my body and toss and turn.  I have veritgo problems and terrible dizziness.  My head sometimes feels tight and like something is crawling on it under my scalp.  Some days I can't get out of bed.  It's taking a toll on my family, on my psychological well-being.  I went to doctors, these people with their degrees and are supposed to take care of me and they were supposed to take care of me and they didn't.  I'm overwhelmed.  Sorry.  I just wrote a novel!  If anyone has read this far, I thank you because you have listened more than my doctors have!  Does anyone know of Dr.  Barrow in Atlanta?  What should I ask for my first visit?  How do you get through the fact that this is in your brain and your brain controls everything?!!!

[Dawn1214]

Hello,
I am glad that you found your way to these forums. People here a very well informed and most have been there done that so this is the place to get information and support. I think we have all been where you are at one point in time some of may still be there. Chiari is still considered to be rare and there are not a lot of dr's out there that are experts or may even know what it is. There are others that may want to do surgery when the need is not there. So a chiari specialist is what you will need.

I am not familiar with Dr. Barrow but I'm sure other people will chime in if they know of him.

You will need a Cine MRI, and to be checked for a syrinx and tethered cord. I also had an ENG which will check your eyes and brain function as well as inner ear for the dizzyness.

Please make sure you find someone knowledgable to ensure you are getting the proper testing and recommendations. Keep us posted on what is going on and like I said everyone here is wonderful and will be here for your questions as you go through the process of finding out what can be done.

I would suggest you keep a copy of all tests you are getting done for your records.

Best Wishes to you
Dawn

[mama2twobabies]

Apparently Dr. Barrow is a specialist in Chiari.  Like I said, I didn't even know I had tonsils in my brain LOL.  Hopefully everything will start to make sense soon.  I will definately not rush into brain surgery.  Thanks for the warm welcome and hopefully I will get lots of useful information and get to the bottom of this soon.

[Dawn1214]

if he is a specialist then you are in good hands. i suppose they call them tonsils because they look like tonsils LOL...

Please do some reading on the subject so you will understand exactly what it is and what symptoms it causes.

Please do keep us updated and there is always someone here that knows the answers..

Best Wishes
Dawn

[Shane99]

I don't know Dr Barrows personally, but I have heard good things about him.

Cerebellar tonsils are the lower part of the cerebellum, so yes, people have tonsils in their brain :). In Chiari, the tonsil are under pressure from the skull and herniate. If the herniation gets to the point where it squeezes out beneath the skull into the spinal cord - lot's of bad things can happen.

When you find out more, let us know.

[mama2twobabies]

I also forgot in my long Chiari biography to mention that when the nurse at Dr. Barrow's office called me back to schedule my appointment she also mentioned that I had an archnoid cyst.  However she formed this conclusion by never having seen my latest MRI images and only having read my MRI report, which makes no mention of a cyst.  I've read it myself a million times.  Anyway.  I obviously am not a Neurologist or Neurosurgeon, but when they called to make the appointment they mentioned the cyst and also did not mention the Chiari.  Again, I only know about the Chiari because of the brief mention of it at my follow-up appointment and because I myself read my MRI report.

[ThePeachy1]

Ok first, deep breath, second, your totally not crazy, but it does help, I borrowed that one from Shane. Second. I have at one point or another had everything happen to me that you have. You found the right place honey.  You found a group of people that have been there and done that.  Your on the right road, and you need a specialist. My kids are 20, 17 and 8. I am lucky that they are older I feel for you darling. But hang in there and know that we are here for you. We understand, even when some trained doctors don't. There are doctors out there, you just have to find them and we have to do our part to raise awareness. Keep your strength and spirits up take care of yourself and know that you are thought of.  we are sending good thoughts your way .

[mama2twobabies]

I didn't put this page in my favorites and just tried to get back to the forum and couldn't remember the web address!  I've been here at least 10 times today!  I hate the memory problems this Chiari causes!  Adding to favorites now.  Thank goodness my husband showed me how to pull up my daily history.  Stupid, stupid brain!  AAAHHH!

[camdenalexander]

OK.. my husband had an MRI and they found a 7mm tonsil foreman magnum on his brain? In english terms what is it and how do you treat it?

He has migraines, loss of vision in one eye, memory problems, concentration, tiredness, weakness-mostly on left side, numb.  He can't work right now and the dr. os not sure when he will return.  Having a difficult time getting an appt to see neurosurgeon.  His neuro said that it was not that big and no one would operate on it.  he did say that it would continue to grow.  

Any suggestions for a dr. in Birmingam, Al

[selmaS]

Hi and welcome to the Chiari forum.

We do have a thread here of chiari specialists.....please research all drs to find one right for ur DH.

Most chiarians do need to travel to get to the right drs.

Treatment can be pain management and or surgery this decesion is made by the NS......and it depends on the symptoms ur DH has and CSF blockage.....

Has ur DH been checked for other chiari related conditions like a syrinx, tethered cord....???

Basically ur DH 's skull is too small to hold his cerebellum....and it gets forced out and down onto the spinal cord.....the part of the brain that gets forced out is called tonsils.....the herniation is measured- too many drs only look at the amount of herniation instead of the overcrowding and CSF blockage.

Yes, it can continue to grow and if surgery is offered again it depends on the individual surgeon as to how he will proceed.The size of the scar and type of patch even the type of surgery all depends on what the NS feels is the best way to go.

"selma"

[camdenalexander]

thanks for the info,  its all over whelming but the more i know the more i am able to care for my husband.  we should hear from the NS next week about an appt.
while we wait, my husbands head continues to pound and we are at the ER every 3-4 days!!!!!!!!!!

[mama2twobabies]

I would suggest finding another Neurologist or get the opinion of a Neurosurgeon on your own.  The mm of the herniation is not what determines if surgery is needed or not.  Your husband should get a cine MRI to determine if the flow of CSF (cerebral spinal fluid) is obstructed.  If the flow is obstructed, he would more than likely be a candidate for the surgery.  I'm 4 weeks out of surgery and my tonsils were only herniated about 8-9mm, which is not that severe, but my CSF was being compromised.  The surgery is not a cure for Chiari, as there is NO CURE, so the answers for Chiari aren't easy to come by.  I didn't have such a long wait as most people.  I had a diagnosis and surgery within a couple of months.  Just get as much information as you can and always keep in mind that surgery is not the answer all of the time.  I wish you luck, and keep us posted!