Aa
Official Diagnosis
Hello Everyone,
I have had a very long and interesting day but, it is with bittersweet feelings that I sit here in my living room with my children, that I saw to all of you... I am an official member of the Chiari Family.
It starts this morning with my initial appointment at the neurologists office. I am fairly pleased with the referral my PCP gave me. He is no specialist but, he is fairly knowledgable in Chiari, has terrific bedside manner and seems generally concerned about his patients and their needs.
I went in explaining all of my symptoms and he tells me "It sounds to me like you have Chronis Tension Headaches." He then asked me a bunch of questions, Did a good 15 minute eye exam including using that eye scope that looks behind the eyes and showed me how to properly measure my pupil size. We went over the file from my MRI in 2003 that states that I have finding for Chiari. He then asked about the CT scan I had back in February of this year. He popped it in and was very thorough with explaining what I was seeing on my scan. He said in general my CT looked great, except that he could tell based on my scan that my cerebellum does in-fact sit lower than the average person. With this and the results from my MRI in 2003 and my symptoms he says, Yes I do in-fact have Chiari One. However, he wants to start things off slowly. He said that although my symptoms may be scary, they can in-fact be cause by Chiari in some way. He mentioned that even though my headaches are not "typical" Chiari, they can still be caused by it. Because of my job and, the fact that I have small children, he wants to start slow and small because he doesn't want me to go through anything that may be unnecessary. He's literally starting from the bottom, with everyday over the counter Aleve(sp?). He wants me to take it for a full month. If within that month my symptoms are not controlled (he did states that some symptoms may not fully go away, however they can be controlled and dulled)then to call him and he will set up an MRI w/ Brainstem and a CINE. If I need those done, once the results come back he said he will give me a referral to a specialist (most likely Dr.Oro since we are very close to him) and he will prescribe me something for pain until my visit with the specialist. He said at this point, if everything is tolerable, he does not want to order tests or shove pill down my throat if its not needed because co-pays can be high and he doesn't want to put me on anything that may have side effects that will conflict with my job until its necessary. He seems confident and does have experience with Chiari patients so, I am happy to stick with him for the time being.
Later on in the day, I spoke with my mom. From which, I come to find out that she too has Chiari and I never knew it! Not only this but, she has Chiari Two AND has had both procedures done. I knew of one that was done about 15 years ago but, I always assumed it was do to a car accident she was in. According to her, when she was around my age she found herself in and out of the ER and doctor's offices (and now that I think about it, I do remember going to a lot of doctors with her). She said she felt miserable and didn't know what was wrong. She finally found a neurologist who did and MRI and found that she had a severe herniation (She lost all of her record in a move and does not remember how far it was but, she knows she had brain stem tissue as well.) At the time they found a neurosurgeon who was familiar with Chiari and did the decompression surgery shortly after her diagnosis (I now remember a few days where I did not see her). She went relatively symptom free for a long time until about 15 years ago when she was having vertigo, headaches and a rushing sound in her years. Turned out she had a blockage and needed to have it drained and had a shunt placed (this is the one I knew of but, thought was do to a car accident we were in a month prior). I honestly never noticed a scar on her neck prior to this either. About 2 years ago she had to have the shunt replaced. I found ALL of this out today. She was diagnosed with Fibromyalgia last year (Which my grandmother also has) and I found out from my grandmother that she has mild Scoliosis, just as I do.
It's a lot to take in and it's a very bittersweet feeling. I'm very happy to have a diagnosis but, I'm still in that confused swirling information state.
I have had a very long and interesting day but, it is with bittersweet feelings that I sit here in my living room with my children, that I saw to all of you... I am an official member of the Chiari Family.
It starts this morning with my initial appointment at the neurologists office. I am fairly pleased with the referral my PCP gave me. He is no specialist but, he is fairly knowledgable in Chiari, has terrific bedside manner and seems generally concerned about his patients and their needs.
I went in explaining all of my symptoms and he tells me "It sounds to me like you have Chronis Tension Headaches." He then asked me a bunch of questions, Did a good 15 minute eye exam including using that eye scope that looks behind the eyes and showed me how to properly measure my pupil size. We went over the file from my MRI in 2003 that states that I have finding for Chiari. He then asked about the CT scan I had back in February of this year. He popped it in and was very thorough with explaining what I was seeing on my scan. He said in general my CT looked great, except that he could tell based on my scan that my cerebellum does in-fact sit lower than the average person. With this and the results from my MRI in 2003 and my symptoms he says, Yes I do in-fact have Chiari One. However, he wants to start things off slowly. He said that although my symptoms may be scary, they can in-fact be cause by Chiari in some way. He mentioned that even though my headaches are not "typical" Chiari, they can still be caused by it. Because of my job and, the fact that I have small children, he wants to start slow and small because he doesn't want me to go through anything that may be unnecessary. He's literally starting from the bottom, with everyday over the counter Aleve(sp?). He wants me to take it for a full month. If within that month my symptoms are not controlled (he did states that some symptoms may not fully go away, however they can be controlled and dulled)then to call him and he will set up an MRI w/ Brainstem and a CINE. If I need those done, once the results come back he said he will give me a referral to a specialist (most likely Dr.Oro since we are very close to him) and he will prescribe me something for pain until my visit with the specialist. He said at this point, if everything is tolerable, he does not want to order tests or shove pill down my throat if its not needed because co-pays can be high and he doesn't want to put me on anything that may have side effects that will conflict with my job until its necessary. He seems confident and does have experience with Chiari patients so, I am happy to stick with him for the time being.
Later on in the day, I spoke with my mom. From which, I come to find out that she too has Chiari and I never knew it! Not only this but, she has Chiari Two AND has had both procedures done. I knew of one that was done about 15 years ago but, I always assumed it was do to a car accident she was in. According to her, when she was around my age she found herself in and out of the ER and doctor's offices (and now that I think about it, I do remember going to a lot of doctors with her). She said she felt miserable and didn't know what was wrong. She finally found a neurologist who did and MRI and found that she had a severe herniation (She lost all of her record in a move and does not remember how far it was but, she knows she had brain stem tissue as well.) At the time they found a neurosurgeon who was familiar with Chiari and did the decompression surgery shortly after her diagnosis (I now remember a few days where I did not see her). She went relatively symptom free for a long time until about 15 years ago when she was having vertigo, headaches and a rushing sound in her years. Turned out she had a blockage and needed to have it drained and had a shunt placed (this is the one I knew of but, thought was do to a car accident we were in a month prior). I honestly never noticed a scar on her neck prior to this either. About 2 years ago she had to have the shunt replaced. I found ALL of this out today. She was diagnosed with Fibromyalgia last year (Which my grandmother also has) and I found out from my grandmother that she has mild Scoliosis, just as I do.
It's a lot to take in and it's a very bittersweet feeling. I'm very happy to have a diagnosis but, I'm still in that confused swirling information state.
hi welcome to the forum.
I also strongly believe that there must have been someone in our ancestors if not parents atleast grand parents or some one before them .
Probably they were asymptotic.dont know
.. but I always feel that should have been some genetic connection some factor which has been carried on.
as far as i know and you also might be aware that here is no verdict yet on chiari being carried on .genetically.Probably they would find out after years of reasearch .
fibromyalgia/ chronic fatigue syndrome are often the wrong dx of chiari and or related conditions .some times scliosis also might be .
I also strongly believe that there must have been someone in our ancestors if not parents atleast grand parents or some one before them .
Probably they were asymptotic.dont know
.. but I always feel that should have been some genetic connection some factor which has been carried on.
as far as i know and you also might be aware that here is no verdict yet on chiari being carried on .genetically.Probably they would find out after years of reasearch .
fibromyalgia/ chronic fatigue syndrome are often the wrong dx of chiari and or related conditions .some times scliosis also might be .
COMMUNITY LEADER
I would also come to the same conclusion, but testing is the only way to know for sure.
Fibro is often mis-DX'd when it could be EDS.
My reasoning behind thinking she has it is because she has Scoliosis and Fibromyalgia and my grandpa said she use to get headaches when she was younger
COMMUNITY LEADER
I am sure it is possible....I am sure my dad's mom had it as well....just speculation as she passed many yrs ago....so no way to check....
The more testing our families get the better chance to possibly figure out why some of us get this while others do not.
COMMUNITY LEADER
So u r support for each other....weird how things work out...but again it seems to be for ur advantage at this point to have someone so close to share how things are going....
I really feel my dad also has it, but he refuses to be tested....everything fits, but he will not agree to move forward, so I do not have that connection or confirmation.....
She's been telling me a lot about her experience in the months before she was diagnosed. Its comforting because its very similar to me. She knows little about the condition though because no one ever fully explained it to her so, Ive been going back and forth explaining things to her
COMMUNITY LEADER
It is sad, that we can only get comfort from those that also had to go thru this....but they are the only ones that truly understand....and it may be lucky for u that u have someone so close to ask, but sad that 2 from one family have had to deal with this.
I am sure ur mom will be some of ur best support <3
Thank You Selma. I just feel lucky mine form is not as severe as my mothers and that I was lucky to find a neurologist her has experience with CM right off the bat. My mom says that right before she was diagnosed she ran around frantic like I did for a few months... In and out of the ER and doctors just like me. In an eerie way, its kind of comforting to know that she went through the same thing.
COMMUNITY LEADER
Hi,,,so sorry u got the official DX and have so much to take in.....it can be over whelming for sure ..especially to find out about family that also have it.
Keep in mind many times we get a DX of fibro when it can actually be Ehlers-Danlos.....and many with EDS also have mild scoliosis too.
Sorry to have to say welcome to the club.
Have an Answer?
You are reading content posted in the Chiari Malformation Community
Find out how beta-blocker eye drops show promising results for acute migraine relief.
In this special Missouri Medicine report, doctors examine advances in diagnosis and treatment of this devastating and costly neurodegenerative disease.
Here are 12 simple – and fun! – ways to boost your brainpower.
Discover some of the causes of dizziness and how to treat it.
Discover the common causes of headaches and how to treat headache pain.
Two of the largest studies on Alzheimer’s have yielded new clues about the disease
