Angelika_23 Posted November 17, 2007 Report Share Posted November 17, 2007 I sent my MRI's from 2005 and this year to Dr. Heffez in Wisconsin. He got back to me and said I definitely have Chiari, and also degenerative cervical discs. He said he cannot make any specific recommendations without me coming in for a clinical visit. Does anyone here have experience with Dr. Heffez?At my last visit a couple of weeks ago, my EP cardio told me that I DEFINITELY have POTS, but it is secondary to some other condition yet undiagnosed. Could the Chiari be it???I am so hopeful for some answers. I hope I am headed in the right direction now. Angela Quote Link to comment Share on other sites More sharing options...
stellakitty Posted November 17, 2007 Report Share Posted November 17, 2007 Sure can. We belong to this club, believe me, you don't want to be a member.Angie Quote Link to comment Share on other sites More sharing options...
MightyMouse Posted November 17, 2007 Report Share Posted November 17, 2007 Hiya, I've had 2 surgeries with Dr. Heffez--I found him to be cautious and professional. If you have more specific questions, please feel free to ask--or pm me. I'm not home at the moment, so don't be worried if it takes a day or so for me to reply.Nina Quote Link to comment Share on other sites More sharing options...
Angelika_23 Posted November 18, 2007 Author Report Share Posted November 18, 2007 Oh, and I forgot, I need to add mild scoliosis to my list of diagnoses. I read that is common in people with Chiari.Stellakitty, can I ask what symptoms you have do to the Chiari/degenerative cervical discs?Thanks,Angela Quote Link to comment Share on other sites More sharing options...
stellakitty Posted November 18, 2007 Report Share Posted November 18, 2007 Hi....This is Angie's daughter, Alexa (I'm the one with Chiari, dysautonomia, neck junk, EDS).... I have so many symptoms due to the chiari cervical stuff. We have determined that my disk issues are from Cervical instability/ cranial settling. We first found the bulging/ herniated disks when I was 16 (I'm now 18) and needless to say that's rather young to have disk degeneration. I have fairly severe Ehlers Danlos as well.Symptom wise I have had a SEVERE unrelenting headache at the base of my skull for almost seven years... It has not gotten below a 7/10 on the pain scale even with narcotics since the day it started. I also have severe pains throughout my body (neck, back, arms, legs).... As well as numbness and tingling. I cannot feel external pains from my neck down (ie if I stubb my toe, I don't notice until I look down and see my toenail is falling off). I have developed "drop foot" in my right leg/foot and can no longer move that leg from the knee down. My autonomic dysfunction is SEVERE... I can no longer sit up without passing out. My blood pressureranges from so low a pulse cannot be palpated, to above 250/150. My pulse can range from 30 to above 200. I have a ton of nausea and vomitting (presumbly from the high amount of pain coupled with my GI dysmotility). My GI tract DOES NOT move... You can touch my gut and feel "matter" up under my ribs... My pupils don't like to react to light. I fall due to loss of balance. Inaddition to passing out, I also have "drop attacks".... Basically on minute I'm fine and the next I'm one the floor with no idea of how I got there. My ears are always ringing. My eyes feel like they are going to pop out of my head. I can't pee at all. I have *very* slurred speech... I sound (and look) like I've had a stroke (I haven't... been checked out for that). I can't flex/extend my head/neck without passing out or feeling like I'm going to die.So basically on top of having a very screwed up ANS my CNS is also choosing to not function... These are just some of the symptoms that I have (meaning the ones that I deal with on a minute to minute basis...). I'm in a Miami J collar for the cranial settling for now.... I'm awaiting a cranio cervical fusion. From my experience with the decompression though, I wouldn't do it unless your qaulity of life is SEVERELY compromised or you are on a definate decline. Post op I contracted bacterial meningitis (along with about a million different kinds of staph) and ended up with a PICC fr 6 weeks to get abx. Now my neck issues are even worse because of the fact that they have to cut through the muscle to do the decompression... I had instability before surgery but now I HAVE to have the fusion (that we were trying to avoid). Of course I would do the decompression all over again as well... Before I got so sick again I had 3 glorious months where I was FUNCTIONAL.... Just be sure to weigh out ALL the pros and cons before going through with the surgery....Alexa Quote Link to comment Share on other sites More sharing options...
Mrs. Burschman Posted November 18, 2007 Report Share Posted November 18, 2007 Wow, Alexa, that sounds terrible!Thanks for posting. We all like as many opinions as we can get!Some back and visit us!Amy Quote Link to comment Share on other sites More sharing options...
ajw4790 Posted November 19, 2007 Report Share Posted November 19, 2007 Sorry, I don't know much about Chiari. But, it sounds like they two may be related.I had been wondering how easy it is to diagnose Chiari from an MRI? Does it take a specialized neurologist, or would most be able to notice and diagnose it? Just curious, because as far as I know the only neuro. who looked at mine was convinced there was nothing wrong with me, so was curious how easy it would be to miss? I think she was mainly looking for MS signs at that time anyways... Do radiologists normally catch it?Thanks! Quote Link to comment Share on other sites More sharing options...
stellakitty Posted November 19, 2007 Report Share Posted November 19, 2007 Sorry, I don't know much about Chiari. But, it sounds like they two may be related.I had been wondering how easy it is to diagnose Chiari from an MRI? Does it take a specialized neurologist, or would most be able to notice and diagnose it? Just curious, because as far as I know the only neuro. who looked at mine was convinced there was nothing wrong with me, so was curious how easy it would be to miss? I think she was mainly looking for MS signs at that time anyways... Do radiologists normally catch it?Thanks!It depends on how obvious the herniation is... Mine was not caught by radiology. However when we showed the films to my pcp before sending them to the nsgshe said that looks like it right there. Typically you have to send your MRIs out to someone who specializes in chiari and related disorders. Not to mention alot of doctors don't believe that chiari can cause symptoms (in truth, there are alot of people walking around with CM asymptomatic... it's when the CM blocks off CSF flow, and causes brainstem compression that there are issues). Quote Link to comment Share on other sites More sharing options...
Rachel Posted November 20, 2007 Report Share Posted November 20, 2007 StellaKitty,How exactly do you go about getting your MRI images to the right specialst? Do you have to make an appointment? Need a referral? Can you just send them in the mail? I've had an MRI because of suspected chiari, but the report was "non remarkable." But I've often wondered how much the radiologist knew about chiari. I've heard too many stories about undiagnosed chiari, despite MRI's clearly showing the condition. I've never talked with the radiologist who looked at my scans, but I did speak with my neurologist. She looked at the images and said that "it wasn't pointy" and so I didn't have chiari. Well, that's not a very technical definition or reason! It's always left me slightly unsettled. Rachel Quote Link to comment Share on other sites More sharing options...
Mrs. Burschman Posted November 20, 2007 Report Share Posted November 20, 2007 She looked at the images and said that "it wasn't pointy" and so I didn't have chiari.Wow. That's about the least scientific thing I've ever heard from a doc!I had a brain MRI, but I think they were just looking for signs of MS. That was all clear. You have to wonder, though. Was mine "pointy"?Amy Quote Link to comment Share on other sites More sharing options...
Angelika_23 Posted November 20, 2007 Author Report Share Posted November 20, 2007 My report said "Beaked configuration of the cerebellar tonsils with mild inferior displacement of the cerebellar tonsils. Findings are consistent with Chiari I malformation."I guess mine were pointy?Angela Quote Link to comment Share on other sites More sharing options...
ajw4790 Posted November 20, 2007 Report Share Posted November 20, 2007 Thanks for the info!!!I continue to crack up on the scientific use of "it wasn't pointy"! That is very impressive dr. lingo! I have to say "beaked" is also an interesting term, although probably more appropriate than pointy! Quote Link to comment Share on other sites More sharing options...
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