Just need to vent.....I had my apt with the NS at Dartmouth....It was awful. Another arrogant NS. I am so angry. Another NS telling me there is nothing wrong with me!!! Unbelievable! As I would ? things it was obvious he didn't like it. He reviewed a couple of my films with me. When he looked at the brain MRI he made sure to say I don't have chiari....so I ?d about crowding. it was very clear he's NOT a chiari specialist. I asked him if he deals with chiari...to which he said "Be very careful with chiari....people that have even the slightest chiari will say all their problems stem from that and it's just not so" Very clear he's not a chiari specialist huh??? Oh how I wish he could experience just 1 day in our body!!! He basically didn't hear a word I said and just told me that there is nothing that he could even conceptualize that could explain all my sx (HMMMM...chiari or any of the other conditions often seen with chiari??!!) He told me I've now seen 4 NS so I should pretty much stop seeing surgeons b/c I could end up with surgery I don't need (hmmm...like the 5 I had this year?) Nobody can quite grasp how I've had all these surgeries but still all the sx - maybe b/c they did surgery on the wrong area! He also went on to pretty much disagree with the last NS that did my last neck fusion who had told me the first NS did a bad job and he was gonna "fix" it - this guy claims the 1st one was done just fine and fused fine....so pretty much telling me the last fusion was not needed.
He didn't care that I was frustrated about how limited I am and made me feel like he thought I was totally lying. He did the typical half-ass neuro exam on me that he claims I passed. I'm at a complete loss for what to do. It's bad enough he claims I have nothing wrong but the arrogance that went with it was infuriating. I hate being spoken to in a condescending tone. I'm not an idiot.
I don't even know if I can put weight in seeing Dr Heilman at Tufts...is he even a true chiari specialist like the ones at the chiari centers? It seems like the chiari centers are the only places that do the comprehensive testing for tethered cord, ehlers-danlos, cervical instability, retroflexed odontoid etc.... Do these other Drs do that stuff? I now have to wait another full month to see Dr Heilman.....if he blows me off I'm stuck again.
Sorry for ranting.....I shouldn't be shocked...really didn't expect this guy to help me but I guess his arrogance really ticked me off and threw me into a downward spiral again. So sick of feeling judged and not believed. and this jerk actually said that every possible test under the sun has been done for me. Hmmm...really? Haven't had a cine-MRI...but then again maybe only a true chiari specialist would know how important that is!
He also refused to even look at the PT eval or believe that he did an eval of the alar and apical ligaments that hold the odontoid to the occipital. When I told him the PT evaluated things as unstable he snickered. I said "just like every other Dr...google search it, it's a real test for those ligments," to which he replied "you can call anything a test it doesn't mean it's valid."
Then re: my face and lips etc going numb...he claims that the "circuit" for that area isn't anywhere near my neck area, it's higher up in the brain. REALLY? Correct me if I'm wrong but I thought that the lower cranial nerves can contribute to numbness in the face etc.... so, I don't think this guy even knows what he's talking about.
Guess I gotta chalk it up to another useless apt. and keep pressing on.
I 'm not sure what it is with drs, I think if it is something they don't understand or have much knowledge about, they can't bear to say that to a patient let alone to themselves. I don't even think they realize how they are marginalizing us and our symptoms. I have a collection of tests with objective data that points to all sorts of symptoms known to be associated with CM, Basilar Invagination, Atlanto-Occipital Assimilation, all of which are seen on multiple imaging studies, but I had more than one doctor tell me my symptoms are not from those things (because they do not see anything that is restricting CSF flow). We have to live in our bodies and our symptoms are real, I wish we didn't have to deal with doctors who marginalize us because they don't know what to do.
Oh Di, another NS with a god complex. I went to see my NS and he asked me..."where is your husband?" Like I'm an idiot and need my husband to interpret for me. That really pissed me off. Then he said to me..."if you were a member of my family I would feel really sorry for you." What??!! And goes on to tell me that he "fixed" what he said he would and that was that. Needless to say, I have not see that NS again.
The statement that really gets me going is..."you are a very COMPLICATED case". Yes, I know. I could go on forever! Ranting is good and it makes you feel better. Rant away, I'm totally sympathetic! Terri
Sorry to hear that you're having the same run around. So what do we do? How do we convince doctors that this is all very real and debilitating? I have a retroflexed odontoid, incomplete c-1, wear and tear of c1-2, and laxity of the alar and apical ligaments.....they can't tell me that this stuff doesn't contribute to my sx! I really do wish they could experience a day in our bodies - they might think twice before they are so callous! Sure wish they taught empathy in med school. Guess it can't be taught :( Good luck to you!
painintheneck said:
Hi Di,
I 'm not sure what it is with drs, I think if it is something they don't understand or have much knowledge about, they can't bear to say that to a patient let alone to themselves. I don't even think they realize how they are marginalizing us and our symptoms. I have a collection of tests with objective data that points to all sorts of symptoms known to be associated with CM, Basilar Invagination, Atlanto-Occipital Assimilation, all of which are seen on multiple imaging studies, but I had more than one doctor tell me my symptoms are not from those things (because they do not see anything that is restricting CSF flow). We have to live in our bodies and our symptoms are real, I wish we didn't have to deal with doctors who marginalize us because they don't know what to do.
OMG, it doesn't matter where in the brain the message starts if the pathway is messed up, right!? I'm sorry doctors are treating you like this, i know how it feels :\ ...and I'll never forget it. He was right about how patients can blame everything on their Chiari, but that's why most of us have been tested for everything else it could possibly be before coming to that conclusion. I'm sorry if you've already showed me but have you uploaded any of your MRI's?
Yeah, I actually sent them directly to you when we were talking about it before. There's the issue with the retroflexed odontoid and then the brain MRI shows a lot of crowding and no space between the cerebellum and brainstem....if you don't have still I'll try to find and repost.
Hope you're doing well..thanks
Di
Bill Zern said:
OMG, it doesn't matter where in the brain the message starts if the pathway is messed up, right!? I'm sorry doctors are treating you like this, i know how it feels :\ ...and I'll never forget it. He was right about how patients can blame everything on their Chiari, but that's why most of us have been tested for everything else it could possibly be before coming to that conclusion. I'm sorry if you've already showed me but have you uploaded any of your MRI's?
OMG, it doesn't matter where in the brain the message starts if the pathway is messed up, right!? I'm sorry doctors are treating you like this, i know how it feels :\ ...and I'll never forget it. He was right about how patients can blame everything on their Chiari, but that's why most of us have been tested for everything else it could possibly be before coming to that conclusion. I'm sorry if you've already showed me but have you uploaded any of your MRI's?
OMG, it doesn't matter where in the brain the message starts if the pathway is messed up, right!? I'm sorry doctors are treating you like this, i know how it feels :\ ...and I'll never forget it. He was right about how patients can blame everything on their Chiari, but that's why most of us have been tested for everything else it could possibly be before coming to that conclusion. I'm sorry if you've already showed me but have you uploaded any of your MRI's?
