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New diagnosis, difficult to find help
I'm so happy to have found this forum. I was recently diagnosed with this chiari malformation and the way of diagnosis came in such a random way.
I've had migraines my entire life. I'm now 28 years old. Recently, in the last two years, the symptoms changed. I started to get this pressure in the back of my head and severe neck pain that basically rendered me disabled. I could not do anything because even taking steps to walk felt like my head was smashing into my spinal cord. Little did I know that this was literally what was happening! I had a headache last for 4 days once and I ended up going to the ER because I couldn't handle it anymore. The PA I saw said that I should probably see a neurologist and get a brain MRI since my migraine symptoms are changing.
Fast forward to the neurology appointment: The doctor just didn't seem to care nor did he even listen to half the things I said. I walked out of there with three prescriptions, an anti-inflammatory, a muscle relaxer, and a stupid anti-depressant. I was pretty upset because I truly felt like something was wrong and he just didn't care. I even literally said the words, "I feel like my head is smashing my spinal cord!"
Fast forward to this month, I'm seeing an ENT for problems related to my throat/lymph nodes and he orders an MRI of the soft tissue. I asked him if it would be ok to check my spine too since I'm already having a soft tissue MRI. I told him about about my headaches and the neck pain I get that cripples me. He ended up agreeing to order both the soft tissue and the spine series. The results showed a 5mm herniation of the cerebellar tonsils and two herniated discs in between c5-c6 and c6-c7.
I am in shock because I feel like I tried to seek an answer for this and I was pumped full of drugs and sent away. But what bothers me the most is the only reason I found out I had this is because I went and got the radiology report myself. The ENT doctor never called me with the results, his medical assistant called me and read the report to me and only mentioned the disc problem. I'm kind of at a loss for what to do. I will be seeing a primary care doctor today for the first time since I don't have one. I missed a lot of school last semester because of this and the only reason why I survived this semester is because of the pain killers.
I'm in the Washington DC area. I am very open to any advice you all can give me on what to do next. I'm having such a hard time finding a doctor to take me seriously and I'm really growing weary of this doctor hopping that I have to do.
Thank you so much for reading!
I've had migraines my entire life. I'm now 28 years old. Recently, in the last two years, the symptoms changed. I started to get this pressure in the back of my head and severe neck pain that basically rendered me disabled. I could not do anything because even taking steps to walk felt like my head was smashing into my spinal cord. Little did I know that this was literally what was happening! I had a headache last for 4 days once and I ended up going to the ER because I couldn't handle it anymore. The PA I saw said that I should probably see a neurologist and get a brain MRI since my migraine symptoms are changing.
Fast forward to the neurology appointment: The doctor just didn't seem to care nor did he even listen to half the things I said. I walked out of there with three prescriptions, an anti-inflammatory, a muscle relaxer, and a stupid anti-depressant. I was pretty upset because I truly felt like something was wrong and he just didn't care. I even literally said the words, "I feel like my head is smashing my spinal cord!"
Fast forward to this month, I'm seeing an ENT for problems related to my throat/lymph nodes and he orders an MRI of the soft tissue. I asked him if it would be ok to check my spine too since I'm already having a soft tissue MRI. I told him about about my headaches and the neck pain I get that cripples me. He ended up agreeing to order both the soft tissue and the spine series. The results showed a 5mm herniation of the cerebellar tonsils and two herniated discs in between c5-c6 and c6-c7.
I am in shock because I feel like I tried to seek an answer for this and I was pumped full of drugs and sent away. But what bothers me the most is the only reason I found out I had this is because I went and got the radiology report myself. The ENT doctor never called me with the results, his medical assistant called me and read the report to me and only mentioned the disc problem. I'm kind of at a loss for what to do. I will be seeing a primary care doctor today for the first time since I don't have one. I missed a lot of school last semester because of this and the only reason why I survived this semester is because of the pain killers.
I'm in the Washington DC area. I am very open to any advice you all can give me on what to do next. I'm having such a hard time finding a doctor to take me seriously and I'm really growing weary of this doctor hopping that I have to do.
Thank you so much for reading!
No need to say ur sorry, we do this all the time.. It is better to vent here where everyone knows exactly how you feel and can realte. were all fighting together :)
I don't have dx of chiari but I do have a syrinx, I have only a 1mm herniation of the tonsils and I have been told that it´s just fine no need to do anything, that is why I sent it to TCI I want to hear that from someone who is specialized in both C&S then I can be calmer :)
Not many of my friends understand what these headaches are like, but I guess I am lucky that my family takes it seriously and are willing to do just about anything to find out what is going on
I don't have dx of chiari but I do have a syrinx, I have only a 1mm herniation of the tonsils and I have been told that it´s just fine no need to do anything, that is why I sent it to TCI I want to hear that from someone who is specialized in both C&S then I can be calmer :)
Not many of my friends understand what these headaches are like, but I guess I am lucky that my family takes it seriously and are willing to do just about anything to find out what is going on
I was just telling a good friend about my diagnosis and he totally blew it off saying "oh I get cluster headaches. I know how you feel."
Um no, YOU DON'T know how this feels!!!
I'm getting kinda tired of people giving me this type of reaction. What's even worse about this friend is he's in PA school! I sure hope he doesn't blow off his patients like this!
I'm going to stop telling people. I'm tired of them telling me that they get headaches too, or migraines, or whatever. I know what migraines are, this is different!
GAH! sorry I'm just venting. I'm totally a noob to this whole chiari thing. I only got my diagnosis 3 days ago. I'm sure you all have dealt with this kind of crap already. :(
Um no, YOU DON'T know how this feels!!!
I'm getting kinda tired of people giving me this type of reaction. What's even worse about this friend is he's in PA school! I sure hope he doesn't blow off his patients like this!
I'm going to stop telling people. I'm tired of them telling me that they get headaches too, or migraines, or whatever. I know what migraines are, this is different!
GAH! sorry I'm just venting. I'm totally a noob to this whole chiari thing. I only got my diagnosis 3 days ago. I'm sure you all have dealt with this kind of crap already. :(
That's just it though! Just because they don't know what it is doesn't mean they should just dismiss it as nothing!! No doctor knows everything! Geez what's wrong with these people??
It just boggles my mind!
It just boggles my mind!
That is a question I would like to know too LOL
As far as I know, here where I live Dr. seems to know little or nothing about this condition and therefor not giving me any info bcuz they don't know.
A PCP I talked to had never heard of Chiari or Syrinx!!!! but my NL did know and dismissed it as not really causing my symptoms.. but I am lucky I think, he is changing his mind lol
Braintoobig: I hope you find a good NS that is willing to listen to you, if not find a specialized C&S dr. That saves you a lot of running around and stress. I took the advise they gave me here and sent all my stuff to TCI in the US.
Best thing ever that I accidentally found this forum lol
best of luck :)
As far as I know, here where I live Dr. seems to know little or nothing about this condition and therefor not giving me any info bcuz they don't know.
A PCP I talked to had never heard of Chiari or Syrinx!!!! but my NL did know and dismissed it as not really causing my symptoms.. but I am lucky I think, he is changing his mind lol
Braintoobig: I hope you find a good NS that is willing to listen to you, if not find a specialized C&S dr. That saves you a lot of running around and stress. I took the advise they gave me here and sent all my stuff to TCI in the US.
Best thing ever that I accidentally found this forum lol
best of luck :)
Why is it that doctors hide this diagnosis from us? It shows up on the reports and they don't tell us??
The ENT I saw had no intentions of telling me about this even though I was symptomatic. Only by getting copies of the reports did I discover this. It seems to be the case with everyone here! Why would a doctor hide a diagnosis from us? Do they just pick and choose what they want to treat and then leave the stuff they are unfamiliar with alone?
I'm planning on going to medical school and I would never imagine in a million years not telling a patient what they have. It makes no sense!
The ENT I saw had no intentions of telling me about this even though I was symptomatic. Only by getting copies of the reports did I discover this. It seems to be the case with everyone here! Why would a doctor hide a diagnosis from us? Do they just pick and choose what they want to treat and then leave the stuff they are unfamiliar with alone?
I'm planning on going to medical school and I would never imagine in a million years not telling a patient what they have. It makes no sense!
COMMUNITY LEADER
Jessica...Chiari is the malformation of ur skull in the area which holds the cerebellum part of ur brain which consists of 2 tonsils.
This area gets overcrowded and forces the tonsils out on onto the brain stem.....the shape of the tonsils may cause a obstruction of CSF flow which in turn causes many of our symptoms.
Yes, it is possible to have this condition and be unaware of it...the reason I feel is we and our bodies compensate for the pains we feel and adjust...and consider what we feel when doing an activity to be "normal" as we have always had it.....
We do have a symptoms list in the Health Pages....however, the list is short as it only covers what most drs will recognize as chiari symptoms....we on the other hand have a manifesto of symptoms started as it is quite lengthy.
Briantoobig - chiari symptoms do cycle, so yes they can appear to come and go.And we r prone to disk issues....many r normal aging issues, but we tend to get them earlier than most.
Many times an injury will trigger the symptoms to get worse to the extent that we have to pay more attention...most times pain meds will not touch these headaches....
it is a matter of avoiding what triggers the HA's and doing things in moderation to avoid the fatigue as well.
A neurologist(NL) will only do testing and may give u pain meds and or refer u to a Neurosurgeon(NS) ....it is very important that the NS u go to is in fact a chiari specialist and not just a NS that does chiari surgeries.
I am not sure y woman seem to have this more than men, but like ne health condition men r less likely to go to a dr where a woman will.....
"selma"
This area gets overcrowded and forces the tonsils out on onto the brain stem.....the shape of the tonsils may cause a obstruction of CSF flow which in turn causes many of our symptoms.
Yes, it is possible to have this condition and be unaware of it...the reason I feel is we and our bodies compensate for the pains we feel and adjust...and consider what we feel when doing an activity to be "normal" as we have always had it.....
We do have a symptoms list in the Health Pages....however, the list is short as it only covers what most drs will recognize as chiari symptoms....we on the other hand have a manifesto of symptoms started as it is quite lengthy.
Briantoobig - chiari symptoms do cycle, so yes they can appear to come and go.And we r prone to disk issues....many r normal aging issues, but we tend to get them earlier than most.
Many times an injury will trigger the symptoms to get worse to the extent that we have to pay more attention...most times pain meds will not touch these headaches....
it is a matter of avoiding what triggers the HA's and doing things in moderation to avoid the fatigue as well.
A neurologist(NL) will only do testing and may give u pain meds and or refer u to a Neurosurgeon(NS) ....it is very important that the NS u go to is in fact a chiari specialist and not just a NS that does chiari surgeries.
I am not sure y woman seem to have this more than men, but like ne health condition men r less likely to go to a dr where a woman will.....
"selma"
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