Aa
chiara
what to do??? i got the results that showed chiari malformation and also recommended further eval for white matter disease. after 4 years of pain, lymphadenathopy (swollen neck glands), glandular biopsies, etc etc, i thought we were FINALLY onto something.
The nuerologist just called she said the following:
Chiari malformation is normally a-sympotmatic and does not explain my swollen neck glands, extreme pain all over (especially neck, head, shoulders, back and extremities) nor does it explain the all over body severe itching.
She said nothing really needed to be done, but, I COULD consult with a surgeon specializing in CHIARI. Furthermore, she had nothing to say as to further evaluating the possibility of white matter disease, as recommended by the radiologist. She said I came to their office to find out if I have MS and that now with my MRI results I obviously DON'T and she blew me off more or less sending me BACK to my family physician for any further help.
WHAT am i gonna do now??? I am so tired of this run around. I have medicaide and wonder if that is a lot of the problem. Is there nothing wrong with me, nothing too bad really, its all in my head or its simply fibromyalgia????????????
so I am done with the MRI, it shows chiari I malformation in brain and spine w/wo contrast. it also shows appropriate sequences to be further evaluated for white matter disease??? WHAT DOES THIS MEAN TO ME? NOTHING APPARENTLY. omg. i cant stop crying since i got off the phone with her.
she also said I need to continue with the hematologist for further tests to rule out mass cell disease. (MASTOCYTOSIS?) WOWWWW....what is wrong with these doctors, why are they so uncaring and not helpful. not too mention, these health issues seem to be ruining my relationship with boyfriend (husband to be) or maybe i should say, FORMER husband to be at this point.
The nuerologist just called she said the following:
Chiari malformation is normally a-sympotmatic and does not explain my swollen neck glands, extreme pain all over (especially neck, head, shoulders, back and extremities) nor does it explain the all over body severe itching.
She said nothing really needed to be done, but, I COULD consult with a surgeon specializing in CHIARI. Furthermore, she had nothing to say as to further evaluating the possibility of white matter disease, as recommended by the radiologist. She said I came to their office to find out if I have MS and that now with my MRI results I obviously DON'T and she blew me off more or less sending me BACK to my family physician for any further help.
WHAT am i gonna do now??? I am so tired of this run around. I have medicaide and wonder if that is a lot of the problem. Is there nothing wrong with me, nothing too bad really, its all in my head or its simply fibromyalgia????????????
so I am done with the MRI, it shows chiari I malformation in brain and spine w/wo contrast. it also shows appropriate sequences to be further evaluated for white matter disease??? WHAT DOES THIS MEAN TO ME? NOTHING APPARENTLY. omg. i cant stop crying since i got off the phone with her.
she also said I need to continue with the hematologist for further tests to rule out mass cell disease. (MASTOCYTOSIS?) WOWWWW....what is wrong with these doctors, why are they so uncaring and not helpful. not too mention, these health issues seem to be ruining my relationship with boyfriend (husband to be) or maybe i should say, FORMER husband to be at this point.
COMMUNITY LEADER
SO glad ur BF is understanding and giving u the support u need.
Keep us posted on the chiari clinic in Miami...is that Dr Green??
"selma"
Keep us posted on the chiari clinic in Miami...is that Dr Green??
"selma"
thanks so much for all the GOOD advice. BF went with me to doctor appt and is now on board, he even sent my mri and report to a chiari clinic in miami and i am waiting for call on appt. they accept medicaide, we will see how this one goes.
I am so sorry u are going through this. I have found more uncaring docs than good ones. Don't give up. And don't let them cause doubt in yourself. You know yourself better than they do. Good luck. And think of this, if the guy you were suposed to marry doesn't stand by you through all of this, did u really want to be married to him? Maybe it is a blessing you are finding out where he stands now rather than years from now. Good luck.
thank you. how did you all become so smart? its like magic, i go on here crying, i come back and i leave smiling. you are both awesome. thank you cmoeller and selmaS . thank you. thank you so very much. off to the lab i go, again.... but at least now I WILL go. thank you.
COMMUNITY LEADER
HI...
sorry u r still having issues with drs and ur boyfriend this is adding to ur stress , which u do not need.
All I can continue to stress is to try to get to a chiari dr to help determine what is going on and how chiari is affecting u.Once u do that things may calm down stress wise and ur boyfriend may have a better understanding of ir all too (take him to ur dr visits)
Hang in there
"selma"
sorry u r still having issues with drs and ur boyfriend this is adding to ur stress , which u do not need.
All I can continue to stress is to try to get to a chiari dr to help determine what is going on and how chiari is affecting u.Once u do that things may calm down stress wise and ur boyfriend may have a better understanding of ir all too (take him to ur dr visits)
Hang in there
"selma"
OH I am soo sorry that you are having to deal with all this....It is so frustrating and completely unfair.
My first piece of advice to give you is an important one...get a NEW NL and get to see a NS as soon as you can!!!!!!!
I was told all the same stuff by my NL and when my NS gave me a totally different opinion, I asked him how two drs could have such different ideas. He told me that Chiari is not in a NL's field as it is a surgical problem so that NL do NOT KNOW ENOUGH about it. To save yourself even more grief, when you go to a NS try and find someone who is knowledgeable in Chiari so that you don't have to deal with more ignorance. Again, I would find a new NL to deal with the white matter disease b/c obviously this one doesn't want to do anything for you.
DO NOT give up...I have and had all the symptoms you mentioned plus a long list of more (as I am sure you do) and it has been caused by Chiari...some of it effects of and some of it damage caused by being left way too long. It is normal to break down and give yourself a few days to get over the feeling of hopelessness...I have been there so many times myself...but then you need to pick yourself up and advocate for yourself once again. I remember the feeling of having all these things going on and not being able to get a dr to believe you and it was the absolutely worst feeling in the world.
I am sorry if you do not have the support from your boyfriend that you need to have...he will need to get on board with this as it is a life long condition and you will need someone who can support you and who understands.
Again, I am so sorry that you have to go through this but the bright side of it is that I have seen many people in your position (including myself) and in the end they find the right NS and they get the help they need.
Keep fighting...and I pray that you get the help you need xx
Carolyn
My first piece of advice to give you is an important one...get a NEW NL and get to see a NS as soon as you can!!!!!!!
I was told all the same stuff by my NL and when my NS gave me a totally different opinion, I asked him how two drs could have such different ideas. He told me that Chiari is not in a NL's field as it is a surgical problem so that NL do NOT KNOW ENOUGH about it. To save yourself even more grief, when you go to a NS try and find someone who is knowledgeable in Chiari so that you don't have to deal with more ignorance. Again, I would find a new NL to deal with the white matter disease b/c obviously this one doesn't want to do anything for you.
DO NOT give up...I have and had all the symptoms you mentioned plus a long list of more (as I am sure you do) and it has been caused by Chiari...some of it effects of and some of it damage caused by being left way too long. It is normal to break down and give yourself a few days to get over the feeling of hopelessness...I have been there so many times myself...but then you need to pick yourself up and advocate for yourself once again. I remember the feeling of having all these things going on and not being able to get a dr to believe you and it was the absolutely worst feeling in the world.
I am sorry if you do not have the support from your boyfriend that you need to have...he will need to get on board with this as it is a life long condition and you will need someone who can support you and who understands.
Again, I am so sorry that you have to go through this but the bright side of it is that I have seen many people in your position (including myself) and in the end they find the right NS and they get the help they need.
Keep fighting...and I pray that you get the help you need xx
Carolyn
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For myself and Selma (I believe) it all comes from taking this long hard road ourselves...and wanting to spare others as much as we can.
I didn't find this forum until after surgery and I remember b4 feeling so alone...that totally changed once I found this site.
Anytime you need a boost to get you going...we are here for you!
Carolyn