Chiari Malformation?
 

My wife has been having many neurological issues over the past 3 years and we have seen several neurologists and it seems we have gotten nowhere. Lots of test, mri's, scans, eeg's emgs and we have no solid answer. She basically gets extremely fatigued to where she can barely walk, she has seizure like episodes, poor memory, speech and coordination problems. They have said it doesn't appear to be MS, epilepsy, lyme, or hashimoto's. However, I did read about Chiari malformations and have access to her MRI's and it looks like it may be possible, but the radiologists didn't mention it. I have attached the suspect MRI photo. Does this look like possible Chiari? Any neuroradiologists in the crowd?





http://i190.photobucket.com/albums/z...lk2/Chiari.jpg

chiari
 

need a different view

New Angles
 

Okay...here is a few shots from a different angle. Does this look like possible CM1?

Chiari Malformation
 

Hi, I am sorry, I am not a doctor. I wanted to tell you that my family has been through the same testing that your wife has been through. We live in Louisiana and my nephew has seen 3 doctors here and then we went to Houston. Houston is who diagnosed my nephew with Chiari. However, would not do anything until he had an "episode" (heart attack or stroke). He then went to North Shore Long Island Jewish in New York. The doctors there are amazing. My nephew was playing 3 days after his brain surgery and 2 days after his back surgery. My sister was just diagnosed yesterday with Chiari. My best advise to you is to email the doctors there and tell them your story. They will either email you back or give you phone call. I wish you the very best of luck.

Thanks
 

Thanks for the reply and I'm glad things are working out for your nephew...and I'm sorry about your sister. As you said, I think the key is to be proactive about getting results instead of waiting. I will look for a doctor where you mentioned maybe they can help. Thanks again!!:)

dr
 

There are other Chiari experts around the US . Where do you live ? Might be able to help you find one close toyour home. That other Xray you put up its hard to tell.

Currently live in eastern NC...very close to Raleigh. Duke and Univ of NC are both fairly close. Do you know of any experts near Raleigh? Thanks.

drs
 

Here is a map with suggested drs from Patients . Dr. Rosner in NC is good
http://www.chiariconnectioninternational.com/map.html

also :
NORTH CAROLINA
Dr. James Adelman
Neurologist
510 N. Elam Ave.
Greensboro, NC 27403
336.547.8000
Dr. Herbert Fuchs
Neurosurgeon
Duke University
Raleigh, NC
Dr. Robin Koeleveld
Wake Medical Center
Raleigh, NC

Also :
North Carolina Tim George - Neurosurgeon Duke Medical #3272
Durham, N.C. 27710 (919) 684-5013

Thanks
 

Thanks for the names. I will try to contact one close by and hope for the best. I'll let you know how it goes.

You should check out the fourm on b12 deficiency. That also causes the same kinds of symptoms.

chiari
 

that really doesnt look like Chiari 1 , poss chiari 0

Possible Chiari 1
 

I was wondering if any of you that have been diagnosed with Chiari, was it hard to get diagnosed? I was diagnosed with Migraines about 9 years ago, and all docs want to do is hand me a pill & tell me hopefully they will go away around retirement. To me, that is not an answer. I have been experiencing other symptoms lately too. The headaches I get don't seem like Migraines, they are more like pressure in the back of my head inbetween my ears, worse with bending over or straining. My hearing is muffled. My eye balls hurt (I know, sounds weird). The light hurts my eyes. I get dizzy spells, nausious out of the blue. My R eye brow sags. I have a hard time sleeping because I wakeup in pain. It literally hurts for my head to sit on my spine. I had a brain MRI 08/07 & the report said the cerebellar tonsils are 8mm below the foremun magnum thingy but do not meet the criteria for Chiari1. I have recently researched this Chiari & the symptoms I have are similar, also there seems to be some conflict in the criteria. Can anyone help please? Any input would be appreciated.

Umm...who told you that?? An idiot neurologist?? :rolleyes: An 8 mm herniation is significant!! Even a slight herniation of less than 5 mm (Chiari 0) can bring on severe symptoms for some patients. If you haven't yet, get your MRI checked out by a neurosurgeon who is well-versed in Chiari...and not all nsgs are. You can get a ref from the following sites:

www.WACMA.com
www.ASAP.org
www.chiarione.org
www.conquerchiari.org

Good luck!

LIZARD :)

Well, went back to the NL to talk about the Chiari. He said I do have Chiari 1 but you never want to do anything about it untill it is at least a 3. I took my films with me, he looked at me & said I know that radiologist, he is very laid back but smart as hell, so I am not going to bother looking at your films. Now, how is that for great healthcare? I'm telling you I am really going to loose it soon. I am so frustrated with doctors. I did get a lead on a doc in Orlando, put in a call to him, still waiting to hear back. I need a doc that knows & treats Chiari. My NL said I have Migraine caused by Occipital Neuralgia. He put me on Xanax, .5 - 1MG 3 x's a day people. What the hell?!? He said if this doesn't work then I will have to get Cortisone shots in my neck. Yeah, whatever! I heard those can actually cause major nerve damage, plus I am not a fan of needles.:eek: Of course, this is all after he brought up 3 other meds I have already been on, and they didn't work. Hello, if we are running out of options, don't you think that maybe it could be something else?!?!?! If anyone has any information for me it would be greatly appreciated. I am at a loss. Has anyone else had lots of symptoms with a 8MM herniation?

Lizard - thank you for your reply. I appreciate it. God bless.:o

chiari
 

do you live in Jacksonville Florida ? There is a Chiari expert in Florida . Google Dr. BARTH GREEN

DFaulk,

I live in Raleigh as well. One group I would not suggested is Raleigh Neurology. They are not interested in their patients individually as they have way too many per neurologist and Nurse Practitioners.

I too am having the same symptoms as your wife. I have been to Duke and they are very good about getting things straightened out. If possible get in to see Dr. Strine at DUMC 1L. Here is his information:

Duke Clinics
(919) 668-7600
Dr. Strine’s Office # (919)-681-1608

Glenwood Ave/US-70 W - 4.5 mi
Left onto TW Alxander Dr. - 4.0 mi
Merge onto NC-147 N toward Durham - 7.6 mi
Exit 15A Elba St./Trent Dr. - 0.3 mi
Slight Left onto Trent Dr. Ramp - <0.1 mi
Slight Left onto Trent Drive

I live off of Glenwood Ave. so you may have to adjust the directions.

I too was having "seizures", so Dr. Strine sent me to see Dr. Radtke who is a specialist in "seizures, seizure like episodes". He is in the same department as Dr. Strine.

When you call to make the appt(if you call Duke)use the first number above. That is DUMC(Duke University Medical Clinic). That is where these two specialist practice. The office number is if you need prescription refills or need to talk to Dr. Strine personally.

They are very good specialist. All though I haven't gotten all my answers, I can tell you that they don't leave you in the dark. Dr. Radte even gives out his email address so that you can contact him with any concerns.

I hope this helps you. Best wishes to you and your wife.

Missy

I'm going to Orlando!!
 

Ok peps, I am going to Orlando! Someone recommended a doctor in orlando named Dr. William Lu, I go see him 10/25/07. He is experienced in Chiari and treatment, so I will pray he can help me.

Thanks to all!!
 

As an update we are scheduled to see Dr Paolo Bolognese, a Neurosurgen, of the Chiari Institute in Great Neck, NY. We submitted all of my wifes information, they reviewed it and have decided to see her based on everything we have said and submitted. It seems the Chiari Institute is on the leading edge of Chiari research, diagnosis, and treatment. I would recommend them to anyone who thinks that Chiari could be a possibility and are getting no support from their Neurologist. Just realize that most Neurologists rely on a Radiologists to review your films and make the diagnosis. The problem with this is that the Radiologists isn't familiar with your symptoms and is only looking at the midline of your MRI and looking for a minimum of 5mm herniation below the foramen magnum. Again, the problem with this is that the part of the cerebellum that herniates is generally the tonsil and they are not actually at the midline...they are both on the left and the right side of the midline. A Chiari Malformation can easily be missed by a normal Radiologists and Neurosurgeon that isn't familiar with the latest data on the diagnosis of this problem. I would venture to say that there are 1,000's of people out there suffering from this trearable condition with either no diagnosis or even worse...with the wrong diagnosis like MS or migraines and simply get a pill and are sent home.

To everyone out there with unexplained problem...DO NOT sit and wait for a doctor to do what is right for you. 99% of the doctors out there are looking for the easy answer to a difficult problem and quickly become frustrated when they can't actually diagnose you and will quickly leave you behind and not return phone calls. Use the internet if needed and find a specialist who truly cares and is willing to stray slightly from the mainstream and actually listens to you.

Hello I live in western NC and was just diagnosed will chiari I malformation. I have had severe headaches for 10 years and my drs would say oh its tension headaches or no its a migrain. I knew they were wrong. I had a gut feeling there was something seriously wrong with me. There are so much more than just a headache. I also have the vision of a 50-60 yr old and I am 27. I struggle sometimes with opening things like my sons sippy cup. my arms and legs go to sleep for no reason. I am waiting to hear from the brain dr. to find out when I talk to a neuosurgeon. She said they may not do the surgery. I am pretty bummed at the moment thinking that is what they will say. For so long I had know idea what was wrong with me. Now I know and I know the surgery will more than likely fix it and I am worried they will tell me no. I don't want to go the rest of my life takeing meds everyday. These headaches have goten alot worse in the last year to where I am having them 3-5 days aweek and somedays like today they last for several days. The pain is getting worse too. I am so tired of this I just want it to stop. The thought hit me last night what are the chances my son has this acm? Also what are the chances of passing it to you children in general. Does this mean no more kids for us? If any has any information to share I would greatly appreciate it. I don't know alot about this or the stats. Thanks and God bless.

dfaulk, ebean - I was just wondering if there were any updates re: wife and your own conditions.

M

Ebean - I totally feel you. I also have been dealing with my headaches for nearly 10 years. Docs told me it's migraine, you have too much stress, suck it up it's not that bad, it's all in your head. Well, guess what, my MRI said 8mm herniation! I also have more than just headaches. I am going to a Neurosurgeon Thursday to see if they can help. I know how you are feeling! All I want is to be capable of being the Mother & Wife & Daughter & Friend I want to be. My symptoms physically stop me from doing so much. I can't even play catch with my boys because bending over to pickup the ball makes me dizzy & gives me the pressurized headache. Just remember, even if they say no to the surgery, there are other docs out there. You may need to travel to find one, but I'm sure it would be worth it. I'll let you know in a few days, I live in Jacksonville, Fl and am going to Orlando. I couldn't find any docs experienced here in Jax. Hang in there, I know it is hard and I know there are times you just want to give up because you have been dealing with this for so long and so many times you have had to go back to square one. But we cannot giveup hope. I will pray for you.

I am going to a surgeon in Charlotte on Monday. His name is Dr. Asher. I hope he agrees with me and says lets do the surgery! I am still trying to find all the information I can on Chiari and this I think is the longest week of my life. Please keep me in your mind and prayers. Pray I get this surgery I am so tired of this and I am ready for it to be over. I will keep you posted on how things go Monday. Good luck to everyone and you are all in my prayers.

I picked up a copy of my MRI Friday and read the report. I still don't know what alot of this means. My main concern is that I won't be a candidate for the surgery. One thing I read that did sound firmiliar was that my tonsils were distended 10mm. Can anyone give me an idea where that is on the scale of chiari? Would you think someone with that would get the surgery? Man I am sucha worry wart. I am going to see the surgeon tomorrow and I just can't wait. I was wondering if anyone had an update on their situation. I would love to hear how things are going and what others are going through. Its nice to know Im not the only one.

drs
 

Dr. Micheal Rosner is the Chiari expert in NC

http://www.cfids.org/archives/1999/1999-3-article03.asp

I have good news. I went to see Dr. Asher in Charlotte yesterday. He didn't offer any other option other than surgery. We have already gotten it scheduled for November 27th. I am so excited and feel as though a huge weight has been lifted. I was worried he wouldn't do the surgery and I was going to have to deal with this forever. I would love to hear from anyone who has had this surgery done before. Hope everyone is doing well and you are all in my prayers. I hope you find peace and rest soon.

Prayers for you all!!!
 

So glad that some of you all have had good fortune to find good neuro-surgeons. I had Chiari surgery done in June of 2000. I've posted about the road there, and a little about the experiance after. I can remember what its like waiting for that surgery date *shivers*. The biggest piece of advice I can offer, is to make sure you have a good strong support system in place, especially for the first few weeks post op. That recommendation isnt just for the patients, but for spouses and those all important kiddos as well.

Even a successful Chiari result is stressful for the first month, especially.

God Bless you all!!!

Group Hug!!!!

:grouphug:

Dawn

Hello
 

I do not think it as CM1.

New Chiari diagnosis
 

My son was hit in the head with a baseball last week and has a concussion. He had a CT scan the day it happened and we were told that it was normal. He is still having headaches, dizziness and nausea. He had an MRI yesterday. This afternoon the neurologist called to tell me that he has Chiari. We have an appointment with the neurologist tomorrow afternoon. I am trying to do research but am getting overwhelmed. Can anyone suggest the questions that I should be asking?

try - **

i would do as much research as you possibly can and ask every possible question you can think of - take some paper and pen and write things down aswell - dont be affraid to ask!

good luck - i hope it goes well!

Its hard to tell but possible.
 

Hey, I am going to preface this by saying I am not a doctor but I just recently went through the whole "MRI" thing where my doctor sat down and explained my MRI's and pointed out the actual Chiari. I would say it is kind of hard to see by these MRI's but it seems like she might have a slight Chiari. What my neurologist said is if you draw a straight line from the bottom of one side of the skull to the other, if anything hangs below that line, it could be chiari. Of course, the best thing to do is go to another doctor and get another opinion. Hope this helps!

That's me...
 

"She basically gets extremely fatigued to where she can barely walk, she has seizure like episodes, poor memory, speech and coordination problems..."

They tested me for MS and lots of other things too and found nothing for 7 years. I have a chiari type 1 and syringomyelia. See a neurologist until they figure out what it is that's going on.

Tell your wife, I know how she feels. Those were my symptoms. Not "seizures" but points when outta nowhere my eyes would cross to where I couldn't see and they would shake...I'd go ghostly white, then red faced...cold sweats...my muscles quivered...I couldn't walk or stand...lost ALL sense of equilibrium...sick to my stomach...slurred speech...poor hearing...absolutely no sense of pain except that my head hurt so bad...and I have the speech problems, coordination issues, and some really hardcore memory stuff.

From the symptoms, I would think have chiari checked for. I'm not a doctor, though, I can't diagnose. As a last thought, if it IS chiari...the decompression surgery isn't that bad. I had it...put me out of commission for about a week and a half...after three days, I could do things, just tired and really stiff. But it helped EXCEPTIONALLY. I might have a "seizure episode" about once every 5 or 6 months when before it was at least once a week. And my coordination has gotten better and I just FEEL better. So if that's what it is, have the surgery. It's so much better than before.

Anything else I can answer, please ask.

Good luck and God bless.

I looked at the MRI
 

I am a doctor of Chiropractic who also has C1M and am looking for answers. I looked at all of the views of the MRI and would say that there IS what we would consider "crowding" at the foramen magnum ( the hole in the base of the skull). She probably also had this MRI laying supine, right? Well what happens when she is standing with the weight of the brain pushing downward? Go to the Mayo clinic website and look up Chiari 1 Malformation, and diagnosis, it will tell you exactly what studies are needed to confirm the diagnosis. There is a very good Chiari Center in Aurora Colorado as well.
Good luck to you and your wife!
Cseegers

Mayo Clinic is not the place to go for Chiari . There are many Chiari specialist all over the Us . where do you live so that we may help you find the right dr.

we too are looking for a dr in louisiana for my 15yr old, but no luck. What clinic in houston actually helped your nephew.

not a doc but looks like slight chiari compared to my daughters 6mm; we are in same boat, desperately searching for chiari specialist in florida, we live in sarasota, and my daughter has already been to all childrens in st. pete; to no avail! i cant believe we came home with continued pain; and no recommendations for chiari specialist; they recommended narcotics as the next step for my 14 yr. old. I will continue to search for a chiari specialist; anyone out there from florida? we are our children's advocates...
good luck to you.