Guest Julia59 Posted January 27, 2005 Report Share Posted January 27, 2005 Hi everyone,I'm back from my neurological appointment. The resident neuro was really nice and smiled a lot and took all my information seriously. The attending Neurologist was focused---but not a smiley face kind of guy. He is doubting that I have significant chiari warrenting surgery. I told him I agree----that i'm not worried about the chiari, but I am worried about the cervical/cranial junction and the instability in the area, and also told him my concern with the retroflex odontoid---aka tilted C1 putting pressure on brain stem.He said he didn't doubt that I had cervical/cranial instability and all the other issue's with my cervical spine--herniated disks included. He is just questioning the Chiari due to the minimal herniation. He did not disagree with the small posterior fossa----(basically chiari 0).I told him i'm very symptomatic and told him I literally feel the instability----he also agreed---and said he would follow my progress with that. The interesting thing he said is that I had two vertebral arteries resting on the brain stem---putting pressure on it. He said that alone could cause me to have many problems including my POTS symptoms. He ordered a MRI---and an MRA to look at the arteries on Feb 8th. Then I will see him on April 4th, and from there I will be scheduled to see another neurosurgeon for a third unbiased opinion.I told him the neurosurgeon won't take me seriously---and then I told him about the first one I saw in Toledo. He said they all different in opinions. He said he would have ordered surgery based on what he saw from those same MRI's. He saw all my past MRI's except from the one's at the Chiari Institute. Those are the one's that showed the blocked CSF flow on the posterior side. He said he would look at those later. I told him I want the upper cervical spine included in the MRI-MRA. HE added that on----because of the cervical/cranial instability.That is all I know for now. I'm in quite a bit of pain due in the cervical/cranial area---and also the lower portion of my cervical spine. the EDS probably plays a big role in the whole mess.The investigation goes on. Julie :0) Quote Link to comment Share on other sites More sharing options...
Guest tearose Posted January 27, 2005 Report Share Posted January 27, 2005 Hi Julie! Glad the appointment went as well as it did. You don't need the warm fuzzies as much as the professional knowledge and help anyway, right? I am amazed at how well versed you have had to become on this chiari process. I guess since I haven't needed to learn about it, I have no information. Is this what causes your dysautonomia or is it in addition to your dysautonomia or is it a form of dysautonomia?Well, I am sorry you have to wait till April for another opinion but you are doing a lot in the meantime. Hope all becomes clear by April!best regards, tearose Quote Link to comment Share on other sites More sharing options...
Guest Julia59 Posted January 28, 2005 Report Share Posted January 28, 2005 Thanks so much Tearose,WE don't know for sure what caused my POTS-dysautonomia---but I will say most of my physicians think the EDS first--then the unstable spine---then the POTS.Julie :0) Quote Link to comment Share on other sites More sharing options...
Ernie Posted January 28, 2005 Report Share Posted January 28, 2005 Hi Julia,Wow, I am really impressed with your fluency on medical terminology! I am glad that your appointment went reasonably well. Take care,Ernie Quote Link to comment Share on other sites More sharing options...
MightyMouse Posted January 28, 2005 Report Share Posted January 28, 2005 Julia, sounds like a good start! Nina Quote Link to comment Share on other sites More sharing options...
Guest Julia59 Posted January 28, 2005 Report Share Posted January 28, 2005 Thanks---but I don't think I am that well versed in med-terminology. I just learned a lot from reading. I did take a medical terminology class---but a lot of the terminology that I learned had no mention of any of this kind of stuff.How about pancreatocholelithiasis---aka---> (abnormal condition of a gall stone in route through the bile duct to the pancreas)---might be spelled wrong---but Emily just had a cholecystectomy---removal of gall bladder--- Julie :0) Quote Link to comment Share on other sites More sharing options...
Guest tearose Posted January 28, 2005 Report Share Posted January 28, 2005 Julie, all I can say to that is supercalifragilistexpialidocius! Quote Link to comment Share on other sites More sharing options...
calypso Posted January 28, 2005 Report Share Posted January 28, 2005 Julie,Glad you found a neuro with a clue. That's definitely a good thing. Hope he takes good care of you.Amy Quote Link to comment Share on other sites More sharing options...
mindylee1 Posted January 28, 2005 Report Share Posted January 28, 2005 Julie, Glad to hear your appt went well. It's so good to see that you take such an active role in understanding and researching your condition. Lets face it sometimes we need to keep those doctors in line and let them know that we are smart cookies too! Best wishesMindy Quote Link to comment Share on other sites More sharing options...
Guest Julia59 Posted January 28, 2005 Report Share Posted January 28, 2005 I was debating on weather or not I sould e-mail Dr. Bolognese about my neuro appointment------or should I let sleeping dogs lie?Dr. Bolognese is an expert in this field of chiari---cervical/cranial instability---ect. I truly believe he is being honest with my about my diagnosis, but this neurologist I saw thinks he over diagnosed my chiari. I know he agreed with the rest of the diagnosis-but he seemed to think there was more to the picture.Julie :0) Quote Link to comment Share on other sites More sharing options...
Guest tearose Posted January 28, 2005 Report Share Posted January 28, 2005 Be cordial and ask your questions!!! Just as I am sure you would say...just say "please let me know at your earliest convenience since this information is different than what you saw and I have confidence in your opinion..." and thank him very much!Do not hesitate to ask, you will always wonder if you don't hear his opinion to this new neuro opinion. You want to decide who you really trust and believe so I say confront the issue!just my style, good luck! tearose Quote Link to comment Share on other sites More sharing options...
Guest Julia59 Posted January 28, 2005 Report Share Posted January 28, 2005 Thank you Tearose, you are so nice and so eloquent with your words. I have always been a bit awkward with my words. But on a more positive note, I seem to have an ability to write many (business type) letters on various subjects like (dysautonomia), (environmental issues), and (lack of medical knowledge on ANS dysfunction) ect., and actually get them answered. But an answer is one thing----ACTION is another----so I keep trying. Thanks to all of you who have supported me through these difficult time's. Sometimes I feel a little on the wimpy side. Mentally this has been hard---but my visit with Ken Davis-psychologist has helped me a great deal.He basically confirmed that I was on the right track and said I was organized and knew what I was doing. I just need a little more confidence on my abilities---and not second guess myself.Wishing good days ahead for all of you!Julie :0) Quote Link to comment Share on other sites More sharing options...
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