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Arnold Chiari?
Hi I was looking at my MRI and noticed something didn't look right to me with my cerebellum, It looked like it curved into my spinal canal. I have had terrible occipital headaches along with lots of pressure constantly at the base of my skull. I have gone to my FP several times for the headaches. I have had a headache for 6 days straight now. Tried Motrin, Lortab, heat, ice, went to dr got a shot of Toradol, mederol dose pack steroids, and maxalt to try if nothing else helped today. Still no relief. Seems to bother me more when I get up. I am attaching mri photo. I was just wondering if it looked like a Tonsil herniation to anyone else or was it just me. The radiologist did not mention it at all in my report. Any suggestions and comments would be appreciated. Also have had some mental fogginess and ringing in ears almost all the time. Have been a little clumsy also.
COMMUNITY LEADER
I am glad I am able to offer u some support.....and thanks for asking I am doing a bit better, I think I have another reaction to a med they put me on...I am getting hives,.it seems to always be something...huh?
I went thru a few Drs close to home and even traveled to the next big city Philadelphia and that Dr was supposed to be a chiari specialist...nope....some list it , just to get the work and $$ but do not do the research a true chiari specialist does or have the experience they do, so u will find it well worth it to get their opinion.
Keep in mind not all with chiari r surgical candidates.
How are you feeling? Hope you are doing better.
I went NS Friday and he told me he didn't see anything on my MRI that looked even close to Chiari. He thinks I have occipital neuralia and is referring me to a pain specialists to get injecion. UGH!!! So, I have taken upon myself to fill out the information sheets for Chiari Institue and have faxed them my info. Hopefully they can do something. I will travel where ever I need to to get this addressed appropriately. I actually have some famiy inPittsfield Mass. so it would be nice to visit them as well. No one around Oklahoma seems to want to hear what I am saying.
Again, Thanks Selma for your support. You are a woderful advocate on here. You are helping me more than you probably know!!:-)
I went NS Friday and he told me he didn't see anything on my MRI that looked even close to Chiari. He thinks I have occipital neuralia and is referring me to a pain specialists to get injecion. UGH!!! So, I have taken upon myself to fill out the information sheets for Chiari Institue and have faxed them my info. Hopefully they can do something. I will travel where ever I need to to get this addressed appropriately. I actually have some famiy inPittsfield Mass. so it would be nice to visit them as well. No one around Oklahoma seems to want to hear what I am saying.
Again, Thanks Selma for your support. You are a woderful advocate on here. You are helping me more than you probably know!!:-)
COMMUNITY LEADER
Well I am not all that surprised as I have heard he likes to see those with herniations larger than 5 mm's...I do not understand that except that it is a way to reduce the # of patients he does have to deal with...as u and we all know that there r more of us then there r chiari drs.
Keep pushing, as there r Drs , chiari specialists that will help regardless of the herniation size, they look to how it is affecting u.
I heard back from Dr. Oro office today. They told me that I had Tonsillar ectopia and that I needed follow up with neuro. Which I have an appt with a NS here in Oklahoma tomorrow. That is all they could tell me. They said they had contacted my pcp and spoke with them so hopefully we can get this fixed. I am still having headaches and dizziness, ringing in ears, foggy thinking. Anyway wanted to let you know what I found out.
I heard from Dr. Oro's office today and they said that they received my MRI and the gentleman that called said he reviewed it and was putting it on Dr. Oro's desk today and that I should hear from him on Monday. Hopefully get some answers and help.
COMMUNITY LEADER
Well I will tell u , U R NOT CRAZY !! Like I said we all feel just like u do, and it is hard bcuz we can feel so isolated when the Drs do not listen or offer help.
Chiari specialists r out there, we just have to travel to get to them....
Thank you Selma. I really needed some encouragement. I know Dr. Oro is a very busy man and am just grateful to be able to have him look at my MRI. If it is Chiari then he will tell me. That will be a huge relief to have confirmation of why I have been feeling like I have been feeling. I didn't even know what Chiari was or had heard of it until I saw my cervical mri and it looked odd. So i googled cerebellum going down into spinal canal because that is what i saw. That is when I read about Chiari and Wow did it open my eyes to a lot. I will start searching for another NS in case I need one. Dr. Oro was the closest specialist to where I live and he is 9 hours away so Ill try him first. Again I know you are not a Dr but you have great knowledge and experience with this and I value your opinion. Thank you for the support. I know I am not imagining what I am seeing or feeling so it is nice to have someone else tell you you are not crazy!!!!!!
COMMUNITY LEADER
Hi, it is not if the tonsils r below the foramen magnum but if it is creating an obstruction of CSF and it looks like it may be doing just that. U may have what some NS's refer to as Chiari 0 as the herniation is less then 5mm, but like I said that has no bearing on if u have symptoms or not.
I also noticed what looks like some compression to ur brain stem....ur tonsils look more like a cork....
Keep in mind I am not a Dr....
And I would suggest a CINE MRI...a thoracic and lumbar MRI, and testing for ehlers-danlos, and ICP...
Try to relax so many of us have been given the "Royal Chiari Runaround" and u r not alone.....do not rush to get a Dr that wants to do surgery, look for a Dr that is willing to take the time to rule all relates issues out so u have a better chance to heal.
Dr Oro is a good place to send ur MRI, but if ur herniation is not 5mm or larger he will not see u...so be advised and research another Dr....as I said I am not a Dr so I am not sure , but I am not sure ur herniation is 5 mm.
That does not mean u do not need help, it just means he is one person and can only handle so much and this was his way to cut back on the demand for his time.
I pray he sees what I do and takes u neway....but be prepared to try another NS.
So I got my brain MRI report and radiologist says it is normal. I have sent copy of MRI on disc to Dr. Oro to review. They should recieve them today. I am so frustrated. I need answers. I have had a headache for 2 1/2 weeks now. The intensity of headache changes but never completely goes away. Lots of pressure and dizziness. Started having trouble with low and high blood pressures. I have put 2 pics of my mri up on my photos. I need some reassurance that I am not just crazy!!! Does it look like the cerebellar tonsils are below foramen magnum to you? I would greatly appreciate your opinion and realize it is just that but you have been on the chiari merry go round andare very informed about it. Im stressed about it. Thank you for listening.
COMMUNITY LEADER
Hi...well, first of all u should not be lifting something that heavy, that will cause u to have a HA, plus many of us do have issues with the florescent lights in the store which add to the issues.
We r to avoid bending ...water is usually on the bottom shelves so u have to bend, We r not to lift either....so u did 2 things in one fell swoop.
Take someone with u to do the bending and lifting so u do not have to do it.
Hope u feel better today.
So I ended up going to the ER Wed for my headache. I had the headache for 10 days at this point. Tues night went to walmart and picked up a 30 pack of bottled water and instantly throbbing in my head and felt like it was going to explode. I got very dizzy and felt drunk. I could not finish my grocery shopping. The next day was terrible. I do not normally have high blood pressure but when I was being triaged in ER my bp was 177/102. I really felt like my head was gonna blow out in the back. I had pain and pressure behind my left eye as well. I could not focus, dizzy, couldnt concentrate, hands shaking terribly. It scared me. They started IV and gave me some meds not even sure what it was. Made me where I could hardly lift my arms but just took a little edge off the pain. Later gave me another dose and did help my pain some but never completely took pain away. The lowest it got was about a 4.
I cant look up or down I get dizzy and feel pressure in base of skull. ringing in my ears is terrible. I also noticed when dr asked me to follow his pen i had trouble keeping up with it. It really scared me.
I cant look up or down I get dizzy and feel pressure in base of skull. ringing in my ears is terrible. I also noticed when dr asked me to follow his pen i had trouble keeping up with it. It really scared me.
So I called Dr. Oro's office and they gave me the info I needed to send my mri and have him look at them. The only thing is my mri is of cerivcal spine ahd they want one of the brain. My FP is scheduling me an MRI of the brain and then I am sending a copy to Dr. Oro to review. It does cost $75 for him to look at them but I feel it is well worth the money to get an opinion from a chiari specialist. Thank you so much for that info!
Thank you so much and I will keep you updated. I love this site and the encouragement and information you can get here.
My FP is going to set me up with a consult with a NS to review my mri. I am so glad she is listening to me and my concerns. I feel blessed!! I will keep u guys informed as I find out! Thanks for your support!! Means so much!!!
Hey there, my name is Dana, I am 32 with chiari. Goin on second surgery and dr oro is my ns. For his opinion just fax or mail him your info and test results. It does not cost anything. If he sees reason to see you, they will call you deffinatly. It is best to have a specialist. Sorry I can't help with mris but I don't know a whole lot about reading them lol. Hope we can help you here and keep us updated. Nice to meet you, so sorry its due to chiari. Stay strong and fight for answers, do not give up. Most drs make us think we are crazy. Diff drs made me thinkk I was crazy for 8 years.
I have posted some more photos on my profile page of my MRI facing the other way! Still looks like some herniation on that side also, but value your opinion.
COMMUNITY LEADER
Hi...oh most deff...a fall, a MVA or a hard cough can trigger it so being pistol whipped most deff could. That must have been so scary.
Well ice never worked for me, heat was better...we all try and see what works best for us....
Make sure u let ur Drs know about the pistol whipping as it is good info for them to have.
You mentioned getting copies to a chiari specialist. There are non in Oklahoma that treat adults. How do I go about doing this? I know there is a good Dr in Colorado Dr. Oro that is about 9 hours away. I don't want to go to just anyone.
Thank you!!! It is nice to know I am not just seeing things and being over paranoid!! I just want to figure out what is wrong with me as I know something is not right. The headaches are really starting to get me down. I'm frustrated and just dont want to hurt anymore.
I do not remember them mentioning a thethered cord. I forgotten about a time my house was broke into and I was pistol whipped and was hit in the side of my head pretty hard several times. Hard enough I saw stars and fell to the floor. I thought I had been shot. Could this have triggered it also? That was back in 2004. I have had headaches for years but they were not as often as they are now. I am getting 3-4 a week. Of course this one I have now I have had for 6 days. I am very frustrated as nothing seems to help. A hard ice pack with lots of pressure to the base and back of my skull helps more than anything but does not get rid of it.
Based on this one picture i would say that there is definitely an issue here, you are right! The herniation is definitely obvious. The flow of CSF is pretty well understood by professionals and I'm fairly certain there is supposed to be a space for flow between the cerebellum and the brain stem... from this picture it looks like the 2 are touching so that's obviously not good either. That's all i got. much love and good luck<3
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