Monstrosity Posted July 28, 2012 Report Share Posted July 28, 2012 (edited) I'd like to hear your opinions on this video. Edited July 31, 2012 by corina Quote Link to comment Share on other sites More sharing options...
CarrieJessica Posted July 28, 2012 Report Share Posted July 28, 2012 watching now, it loaded for me! Quote Link to comment Share on other sites More sharing options...
CarrieJessica Posted July 29, 2012 Report Share Posted July 29, 2012 wow! I don't think it fits me but I sure hope this can help someone else! Quote Link to comment Share on other sites More sharing options...
POTLUCK Posted July 29, 2012 Report Share Posted July 29, 2012 Wow! Quote Link to comment Share on other sites More sharing options...
Monstrosity Posted July 29, 2012 Author Report Share Posted July 29, 2012 Good for that mom, she deserves a gold star! Looks like it loaded up fine for everyone.My only point for everyone to think about is most of us are not at our root issue. POTS/Dysautonomia is a collection of symptoms, not a true diagnosis. Or should I say no diagnosis code. My one neuro wont let me use either word in his office. With that said you can draw a line in the sand but feel you shouldnt when it comes to ones health. Why do some meds work for some people while others dont??? Most of us are not textbook cases and a lot Chiari patients arent either. Cleveland Clinic re-looked at my mri and said I had a 3mm drop and it was nothing to worry about. Most places say you need to have a 5mm drop to be considered a Chiari 1 Malformation. However its based on spinal fluid pressure flow and symptoms. I called NY Chiari Institute and long story short they saw an issue and wanted me to take the 9hr one way trip to them... I then talked to UPMC and they wont give me an answer but said I need a cineflow MRI w/wo contrast. I'm attempting to do so but insurance and lack of knowledge from dr's has made this a slow difficult process. Quote Link to comment Share on other sites More sharing options...
issie Posted July 29, 2012 Report Share Posted July 29, 2012 I have a cerebral tonsil drop too and they are not calling it chiari - but, there is a drop. Since trying the Diamox - which is supposed to help with fluid flow around the brain - I'm not having as many issues. (They are using this med for some with chiari.) But, I'm still not cured. It will be interesting to see what this years MRI shows - to see if there are any changes there or elsewhere.Montie, thanks for posting this and let us know how your search is going.Issie Quote Link to comment Share on other sites More sharing options...
yogini Posted July 29, 2012 Report Share Posted July 29, 2012 (edited) Great advice from this amazing mom. If you know something is wrong in your gut, don't listen to what everyone is saying, just keep pressing forawrd til you get answers. Edited July 30, 2012 by yogini Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted July 29, 2012 Report Share Posted July 29, 2012 Tell me again... a regular MRI should show something if chiari is an issue? Quote Link to comment Share on other sites More sharing options...
Monstrosity Posted July 29, 2012 Author Report Share Posted July 29, 2012 Issie thats interesting that drug is helping. Keep me updated on how you are doing with it. I will keep you informed as things develop. Yogini just as that mom had a gut feeling I do as well... You said it always follow your gut, always! Naomi a regular MRI should show a drop. However the drop is only part of what a true Chiari specialist will look for. They are also looking at the spinal fluid flow and pressure. I'm still doing research and if you want further videos look up Dr. Orro on youtube. I will post them when I have time. I also ordered a few books off Amazon.com that should be here this week. As I find out more I'll update this thread. Quote Link to comment Share on other sites More sharing options...
misstraci Posted July 30, 2012 Report Share Posted July 30, 2012 Wow, Great video, I'm so glad they figured out what was wrong with her and everything. It gives me hope and determination to figure this all out!!! Quote Link to comment Share on other sites More sharing options...
FarmerAmy Posted July 31, 2012 Report Share Posted July 31, 2012 Very interesting! Thanks for sharing! Some of the things in the video really resonated with me. I'm going to call the radiologist in the morning and ask some questions about the MRI I had a few months ago. Quote Link to comment Share on other sites More sharing options...
issie Posted August 1, 2012 Report Share Posted August 1, 2012 Update on the diamox - since you wanted an update Montie. Had to stop taking it last night. Have been having increasing chest pain and it got really bad last night. I think part of it was how acidic the med makes you and I couldn't get my alkalinity up. It seemed to help the pressure in the head. But, the over-all side effects weren't worth what benefits I got from it. I don't think it helped my POTS symptoms that much. So, will be interesting what you figure out about the chiari and what they do for it.Issie Quote Link to comment Share on other sites More sharing options...
Guest Alex Posted August 2, 2012 Report Share Posted August 2, 2012 Amazing story!If only all drs would be so knowledgeable and caring. We might know something is wrong, but if our cries for help fall on deaf ears what good does it do? Had an MRI of my head, everything checked out fine. Sorry if I sound negative - baaaad day today. Quote Link to comment Share on other sites More sharing options...
McBlonde Posted August 2, 2012 Report Share Posted August 2, 2012 Sorry you've had a bad day today, Alex! Quote Link to comment Share on other sites More sharing options...
Guest Alex Posted August 2, 2012 Report Share Posted August 2, 2012 Sorry you've had a bad day today, Alex!Thanks McBlonde, hoping for a less eventful rest of the week, maybe month. Best,Alex Quote Link to comment Share on other sites More sharing options...
comfortzone Posted August 2, 2012 Report Share Posted August 2, 2012 I am in awe of how the mom kept her emotions in check so thoroughly .... even toned voice - barely a tear - no anger or frustration even detectable by her inflection etc... Patient persistance - probably just the perfect God-created combo of mother and child - the child had probably no inkling of how freaked out the mom was to see her kid go from normal to a wheelchair with no discernable cause ... so the child could always keep hope.... and even if the mom did implode or explode with frustration the kiddo still saw the mom get back to patient persistance - moving ahead one day at a time toward a solution - believing there was one - and a cause of course. All of this during the teenage years ... with hormones gone wild ... just amazed at the 'calm' of the mom and kid.So it makes you wonder - if you have the EDS or connective tissue 'issue' ... and you have that high adrenergic state or orthostatic intolerance and some issues throughout life this way with blood pressure lability etc... How many of us are stopping our investigations too soon ... How many of us could find answers if we simply just didn't take 'no' for an answer. So the whole picture - tethered cord, cervical stenosis, the chiari malformation - are 'iffy' to catch at best - you can feel it's hopeless to pursue. You get someone saying no tethered cord - and you are like - well maybe it's occult and they just don't see it. Then the stenosis - some say you will be fine - others say you must get a fusion because of cord compression... then the chiari malformation - how many of us are atypical also and our tonsils seem to be exactly where they need to be - yet maybe we have an odontoid bone issue - or maybe we have problems with spinal fluid and how and where and why it travels and collects where it should or shouldn't or maybe how it should or shouldn't -It's very very frustrating because at this level of the game you are seeing the nations best doctors as it is! So you get these hi caliber people on board saying - 'no' this is the end of the line - there is no detectable 'weird' thing you have - everything is explained or ruled out... and you are banging your head against the wall saying - NO that's just not TRUE..... people just don't suddenly have a hard time walking, getting in and out of chairs etc... And one doctor says to get a fusion - and you are like why??? And they say or you'll end up in a wheel chair from cervical myelopathy - and the other huge experts say NO don't do it -- there is nothing wrong - your evoked potentials show there is no chance of myelopathy....It's beyond me what to do when in essence you still believe something is 'missed' or you'd not be complaining of these symptoms - yet you are basically pitting one expert against another - and you feel both are wrong and that something else yet needs to be uncovered ... it's a bit of a mess Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted August 3, 2012 Report Share Posted August 3, 2012 It's very very frustrating because at this level of the game you are seeing the nations best doctors as it is! So you get these hi caliber people on board saying - 'no' this is the end of the line - there is no detectable 'weird' thing you have - everything is explained or ruled out... and you are banging your head against the wall saying - NO that's just not TRUE..... people just don't suddenly have a hard time walking, getting in and out of chairs etc... And one doctor says to get a fusion - and you are like why??? And they say or you'll end up in a wheel chair from cervical myelopathy - and the other huge experts say NO don't do it -- there is nothing wrong - your evoked potentials show there is no chance of myelopathy....It's beyond me what to do when in essence you still believe something is 'missed' or you'd not be complaining of these symptoms - yet you are basically pitting one expert against another - and you feel both are wrong and that something else yet needs to be uncovered ... it's a bit of a messNowwhat! - YES - these are the exact dilemmas. You described it perfectly. Quote Link to comment Share on other sites More sharing options...
Monstrosity Posted August 3, 2012 Author Report Share Posted August 3, 2012 Next Friday I go for a cineflow mri with and without contrast. The Cleveland Clinic is doing it. I requested a large person MRI to cut back on the clastraphobia. Quote Link to comment Share on other sites More sharing options...
Monstrosity Posted August 3, 2012 Author Report Share Posted August 3, 2012 It's beyond me what to do when in essence you still believe something is 'missed' or you'd not be complaining of these symptoms - yet you are basically pitting one expert against another - and you feel both are wrong and that something else yet needs to be uncovered ... it's a bit of a messFollow your gut... Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted August 3, 2012 Report Share Posted August 3, 2012 Next Friday I go for a cineflow mri with and without contrast. The Cleveland Clinic is doing it. I requested a large person MRI to cut back on the clastraphobia.How did you get your Dr. to agree to do this test? This thread actually got me thinking and I called the Chiari Institute today, but was on hold for 30 minutes just waiting to speak to anyone. So I gave up and hung up. It says on their website to fill out a questionnaire and send it back to them and they'll be in touch. It's interesting because a lot of the symptoms they ask about on the questionnaire fit. I think it's a worthwhile thing for POTS people to look into. What exactly does the cineflow look at? Quote Link to comment Share on other sites More sharing options...
issie Posted August 4, 2012 Report Share Posted August 4, 2012 A head MRI isn't as bad as a full body one. You can at least move your fingers. Ha!Ha! But, I took a very mild sedative before I went and I was quite calm through the whole thing. Maybe get your doc to give you something that will calm you down. I also had them put a towel over my eyes and that helped too. Let us know how you do and what you find out.Issie Quote Link to comment Share on other sites More sharing options...
Monstrosity Posted August 5, 2012 Author Report Share Posted August 5, 2012 Next Friday I go for a cineflow mri with and without contrast. The Cleveland Clinic is doing it. I requested a large person MRI to cut back on the clastraphobia.How did you get your Dr. to agree to do this test? This thread actually got me thinking and I called the Chiari Institute today, but was on hold for 30 minutes just waiting to speak to anyone. So I gave up and hung up. It says on their website to fill out a questionnaire and send it back to them and they'll be in touch. It's interesting because a lot of the symptoms they ask about on the questionnaire fit. I think it's a worthwhile thing for POTS people to look into. What exactly does the cineflow look at?My family doc agreed to it. I could tell he wasnt following me at all when I stated my case. He admited that this is way over his head and asked what he could do for me. He agreed to order the MRI. My advice woulc be contact UPMC's Neuro Surgery Dept. Also Look up Dr. Oro in Colorado. I was on hold for a while with Chiari Institute but they were the ones who looked at my MRI and questionaire and said they saw an issue... Still I dont want an aggressive doc that is knife happy with surgery. IF I have Chiari I will be sure to have multiple opinions on whats best... Yes the questionaire is scary to the fact its describes a LOT of POTS symptoms. I'm not saying that everyone has this but its worth rulling out. I would highly recomend looking up the book Conquer Chiari and the website. Lots of good info... Remember follow your gut! Quote Link to comment Share on other sites More sharing options...
Angelika_23 Posted August 7, 2012 Report Share Posted August 7, 2012 I have been diagnosed with Chiari. This was at the beginning when we were trying to figure out what was going on with me in the beginning. I saw a neurosurgeon who wanted me to schedule surgery ASAP. I was very scared, so I saw another reputable neurosurgeon and he did some more testing and said absolutely not. After that, I felt I had to get another "tiebreaker" opinion. The third doctor gave a resounding "No" as well. I was relieved and sad. Relieved because that surgery is major and I was afraid, but sad because I wanted and needed answers and Chiari seemed to fit well. I am really glad I sought other opinions. I was told that surgery often doesn't work and has to be redone more than once. I would hate to have done that and get worse or not better. Quote Link to comment Share on other sites More sharing options...
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