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Possible Diagnosis of Chiari
I am new to this forum. I had an MRI of the Cervical Spine and the results were C4 and C5 herniation pressing on the dura sac and cerebellar tonsils are passing into the foramen magnum. My family physician ordered the MRI after I requested it based on the symptoms I was having. What makes me angry is that he told me all I had was a C4 C5 herniation and mentioned nothing about the cerebellar tonsils. I finally thought to ask him for the actual copy of the MRI so I could read the impressions myself; read it home. I was not happy to say the least. He even sent me to a Neurologist for this balance problem I have been having for months and he saw the results of the MRI and did not even bother to address the findings at all; stated my constant rocking sensations/balance issues had nothing to do with the
abnormal MRI. He told me it was "unresolved labyrinthitis." I have not got an actual diagnosis yet. I am going to see a physician at a research/teaching hospital here in Belgium; I requested my family physician to at least send me to someone who can help me since he mismanaged my care.
Before the MRI, I was diagnosed with Meniere's, low hormone levels, anxiety, hyperventilation syndrome, ridiculous.
I am in Belgium and not sure if anyone can give me any help/advise since I am not in the USA as far as finding a specialist.
I am scared to death about this. My husband is very upset too.
abnormal MRI. He told me it was "unresolved labyrinthitis." I have not got an actual diagnosis yet. I am going to see a physician at a research/teaching hospital here in Belgium; I requested my family physician to at least send me to someone who can help me since he mismanaged my care.
Before the MRI, I was diagnosed with Meniere's, low hormone levels, anxiety, hyperventilation syndrome, ridiculous.
I am in Belgium and not sure if anyone can give me any help/advise since I am not in the USA as far as finding a specialist.
I am scared to death about this. My husband is very upset too.
COMMUNITY LEADER
Hi...what u want to know about LP's and chiari...it can be done...given the tech knows u may or do have chiari...if it is drawn to quickly it can aggravate the symptoms and actually pull on the tonsils. BUT if u have a tech that is advised and knows how to do these, it can be done safely for a chiarian or suspected chiarian.
Well do ask for copies of the MRI's and reports and the Barcelona, Spain location for chiari may be ur best bet.If u can forward the copies see how they dx u!!
Good luck with the results
"selma"
Well do ask for copies of the MRI's and reports and the Barcelona, Spain location for chiari may be ur best bet.If u can forward the copies see how they dx u!!
Good luck with the results
"selma"
No worries, I'm pretty sure I wrote a few books when I first got on here..
I don't have all the facts but my gut is telling me that a LP may not be a good thing with Chiari's because a lot of what we are dealing with is pressure from CSF flow. I think it depends on why you have it in the first place, some people can have their brain sink from a low level of CSF, so in that case you can see why it wouldn't be good to remove even more. I guess really only a NS that has assessed your CSF flow would really know.
When I was having problems with my eyes (floaters, flashes of light, seeing sparkles, double vision, ghost images) I went to an ophthalmologist and he told me my eye was perfectly healthy. I totally agree that the problems is more behing the eye due to the pressure than in it. However, as one of our members just posted, it can start to affect the health of your eye so you just have to keep on top of it.
I'm glad that you are fighting to not slip through the cracks..I did for awhile and my progression got a lot further than it had too. One mistake I did was to go back to my exercise routine (I didn't know I had Chiari) which included weight lifting and running. That is when things got a whole lot worse for me. So I would avoid any activity that would jar your neck or make you extend your neck until you get some answers!! I hope that you get the help you need soon!
I don't have all the facts but my gut is telling me that a LP may not be a good thing with Chiari's because a lot of what we are dealing with is pressure from CSF flow. I think it depends on why you have it in the first place, some people can have their brain sink from a low level of CSF, so in that case you can see why it wouldn't be good to remove even more. I guess really only a NS that has assessed your CSF flow would really know.
When I was having problems with my eyes (floaters, flashes of light, seeing sparkles, double vision, ghost images) I went to an ophthalmologist and he told me my eye was perfectly healthy. I totally agree that the problems is more behing the eye due to the pressure than in it. However, as one of our members just posted, it can start to affect the health of your eye so you just have to keep on top of it.
I'm glad that you are fighting to not slip through the cracks..I did for awhile and my progression got a lot further than it had too. One mistake I did was to go back to my exercise routine (I didn't know I had Chiari) which included weight lifting and running. That is when things got a whole lot worse for me. So I would avoid any activity that would jar your neck or make you extend your neck until you get some answers!! I hope that you get the help you need soon!
As I have posted before, I do not have a definitive diagnosis of Chiari yet, but I have some questions:
Can someone with suspected Chiari have a Lumbar Puncture?
Since September, I notice my vision has being blurry. I can still see things just not sharp. Sometimes I have pressure over the eyes from squinting. Lights in the stores,
bright lights, computer screens,etc. really make it bad. I am wearing reading glasses now and that helps alot. I am 43 and have been told in the past that I am slightly nearsighted but did not need corrective lenses yet. I am not sure if this is a symptom of Chiari's or middle age. I just had an eye exam in November and the Ophthalmologist
said my vision was great; he dilated the pupils and all. He stated it is not the eye itself but something behind the eye. After reading some of the postings about people having problems with the eyes, etc. I am freaked out. I do not want to lose my eyesight.
I do not want to become paranoid about every medical problem I have and blame it on Chiari's, but it hard not to at this point because I have not seen a NS yet; appointment in March. I am going to get another eye exam.
What makes it worse is that I live in Belgium and not in the States, though here you don't have to go to a specific physician because of insurance. I might have a time trying to find a physician who knows this condition and can help me. I know there are physicians in Switzerland and Spain, but money will be an issue. I just don't want to end up a "train wreck" by the time I find one. Can anyone recommend things I should be doing to help cope with my situation? Activities? Exercises? Diet? I am so afraid I am going to be in terrible shape by the time I find the right physician who can help be.
I am a nurse, but cannot believe I am a patient with something that few physicians understand or know. I have seen people like me fall between the cracks and get shuffled here and there; always felt bad I could not do anything for them but listen, so I have lived both sides of the fence so to speak. Think God I have a supportive husband; he has his moments but not often. I have been here since 6/09, got married in 9/09 and have been sick since 8/09.
Sorry so long-winded
Can someone with suspected Chiari have a Lumbar Puncture?
Since September, I notice my vision has being blurry. I can still see things just not sharp. Sometimes I have pressure over the eyes from squinting. Lights in the stores,
bright lights, computer screens,etc. really make it bad. I am wearing reading glasses now and that helps alot. I am 43 and have been told in the past that I am slightly nearsighted but did not need corrective lenses yet. I am not sure if this is a symptom of Chiari's or middle age. I just had an eye exam in November and the Ophthalmologist
said my vision was great; he dilated the pupils and all. He stated it is not the eye itself but something behind the eye. After reading some of the postings about people having problems with the eyes, etc. I am freaked out. I do not want to lose my eyesight.
I do not want to become paranoid about every medical problem I have and blame it on Chiari's, but it hard not to at this point because I have not seen a NS yet; appointment in March. I am going to get another eye exam.
What makes it worse is that I live in Belgium and not in the States, though here you don't have to go to a specific physician because of insurance. I might have a time trying to find a physician who knows this condition and can help me. I know there are physicians in Switzerland and Spain, but money will be an issue. I just don't want to end up a "train wreck" by the time I find one. Can anyone recommend things I should be doing to help cope with my situation? Activities? Exercises? Diet? I am so afraid I am going to be in terrible shape by the time I find the right physician who can help be.
I am a nurse, but cannot believe I am a patient with something that few physicians understand or know. I have seen people like me fall between the cracks and get shuffled here and there; always felt bad I could not do anything for them but listen, so I have lived both sides of the fence so to speak. Think God I have a supportive husband; he has his moments but not often. I have been here since 6/09, got married in 9/09 and have been sick since 8/09.
Sorry so long-winded
COMMUNITY LEADER
Well it is a Chiari institute....so u know they know about chiari.....
http://www.institutchiaribcn.com/eng/index.htm?gclid=CO-_3fa53J8CFRJinAodS1XdGQ
http://www.institutchiaribcn.com/eng/index.htm?gclid=CO-_3fa53J8CFRJinAodS1XdGQ
I don't know what the rules are there regarding Medical Records and getting copy's of same. I don't know much about the system there but here and in the UK if you have private insurance you can decide witch Consultant you see, If you go public you will see who ever is assigned to you.
It is hard enough having this DX without this Bureaucratic BS as well....
Ray
It is hard enough having this DX without this Bureaucratic BS as well....
Ray
I did see the physician in Spain. I might have to go there if there is no hope nearby.
My doctor dropped the ball with me too...and actually I have still not spoken to her since the surgery 5 weeks ago. No phone calls from her..nothing!! Unfortunately, she is my kids doctor too so I know sooner or later I need to face her, I am just gathering my strength. When I do, I am going to deal with both her and my NL, who both prefferred to try and make me feel crazy then to put the effort out to really find out what was wrong. It is so unfair that when we are in a scary, very weird place that not only do we have to deal with that but then we have to fight to get the health care we deserve!! It may sound like I'm out for revenge but really my intention is to try and make it so that they don't put someone else off like they did me.
Selma- when I do see my doctor I am going to print off the Chiari symptoms list and highlight it with the ones I have/had and I am going to show her that I did fit in a "box" after all!!
Selma- when I do see my doctor I am going to print off the Chiari symptoms list and highlight it with the ones I have/had and I am going to show her that I did fit in a "box" after all!!
COMMUNITY LEADER
The only place I know out side of the states is in Barcelona, Spain.....and I am with u as well......I pray u find drs that r well informed on chiari .
U may want to give the dr a link to the CSI episode I mentioned in another thread...those actors now know more than many drs.....lol.
I can totally understand ur frustration.
U may want to give the dr a link to the CSI episode I mentioned in another thread...those actors now know more than many drs.....lol.
I can totally understand ur frustration.
It was mentioned as an incidental finding on the report of the MRI of the cervical spine, but at least it was mentioned thank God.
I have an appointment March 8th in Leuven, Belgium. The hospital is the largest in Belgium/teaching hospital. I hope to God they can offer me some help. My family physician really "dropped the ball" with me. When I first started to see him and all the testing was coming back ok he had made the comment "I don't think you are crazy; we will find the answers." I thought to myself, "what a pig." That is when I took matters into my own hands and asked for the MRI of the cervical spine. I knew what ever was going on was "outside the box" of the norm. Took many physicians think "inside the box." When they can't find the answer they just think the patient is a "nutball" instead of leaping outside their "comfy box" and put some effort into getting the patient to someone who could have answers or figuring out the situation themselves. When I asked to be sent to Leuven, he had a little attitude when I picked up my referral papers from him. I thought to myself, "I hope he is taking this personal because it is." I am living miserable why he is taking my money for nothing driving home in his BMW to his million dollar home.
I have an appointment March 8th in Leuven, Belgium. The hospital is the largest in Belgium/teaching hospital. I hope to God they can offer me some help. My family physician really "dropped the ball" with me. When I first started to see him and all the testing was coming back ok he had made the comment "I don't think you are crazy; we will find the answers." I thought to myself, "what a pig." That is when I took matters into my own hands and asked for the MRI of the cervical spine. I knew what ever was going on was "outside the box" of the norm. Took many physicians think "inside the box." When they can't find the answer they just think the patient is a "nutball" instead of leaping outside their "comfy box" and put some effort into getting the patient to someone who could have answers or figuring out the situation themselves. When I asked to be sent to Leuven, he had a little attitude when I picked up my referral papers from him. I thought to myself, "I hope he is taking this personal because it is." I am living miserable why he is taking my money for nothing driving home in his BMW to his million dollar home.
COMMUNITY LEADER
U got that right the radiologist dismissed it...many do, and even if they mention it it is call an incidental finding.
And u did what many of us have done become ur own advocate and push for answers.....and teach teh drs we visit along the way!!
"selma"
And u did what many of us have done become ur own advocate and push for answers.....and teach teh drs we visit along the way!!
"selma"
Thank you for all your information and sharing your experiences; you all are so friendly on this site.
I actually diagnosed myself after I saw all the inner ear testing was clearing I thought this has to be something in the back of my head or spine. I requested my own MRI of the cervical spine after I was told there is nothing wrong because the MRI of the brain was clean. Thank God for my nursing background to at least have enough sense to order the MRI. I don't know why it did not show on the MRI of the brain unless that radiologist missed it or dismissed it.
I actually diagnosed myself after I saw all the inner ear testing was clearing I thought this has to be something in the back of my head or spine. I requested my own MRI of the cervical spine after I was told there is nothing wrong because the MRI of the brain was clean. Thank God for my nursing background to at least have enough sense to order the MRI. I don't know why it did not show on the MRI of the brain unless that radiologist missed it or dismissed it.
Just wanted to say..all the symptoms you mentioned.. the brain fog, vision disturbance, headaches, rocking sensations, squeezing at the back of your head when you laugh or cry...are ALL symptoms that I had when this first started. To me, this screams Chiari....I would definitely pursue it. As Selma said, mine wasn't pursued just on the size of herniation, it was because of the severity of the symptoms I had and my NS could see that there was very little room for the CSF to flow through. I've noticed many people have had different herniation sizes but that doesn't seem to dictate how bad the symptoms can be.
As for the gag reflex, it may be worth getting checked again. Honestly, when I found out I didn't have one I didn't really realize that I had a swallowing problem (amongst all the other symptoms). It have evolved so gradually over time and a lot that I was feeling (hoarsness, lump in throat) I still thought was due to being hypothyroid. After I found out, it just all came together.
Please tell your hubby that it does work out in the end, mine was scared too but after surgery I did see some improvements and we adjusted!! Take care!
As for the gag reflex, it may be worth getting checked again. Honestly, when I found out I didn't have one I didn't really realize that I had a swallowing problem (amongst all the other symptoms). It have evolved so gradually over time and a lot that I was feeling (hoarsness, lump in throat) I still thought was due to being hypothyroid. After I found out, it just all came together.
Please tell your hubby that it does work out in the end, mine was scared too but after surgery I did see some improvements and we adjusted!! Take care!
COMMUNITY LEADER
AS I mentioned b4 we all have varied issues and can be difficult to say what is deff from chiari, but the HA's that start at the base of the skull , neck pain and stiffness...that goes into the shoulders.
I had drop attacks...vision issues....numbness in my face hands and legs.I have bowel and bladder issues.Vertigo.....memory issues, cognitive issues.
http://www.medhelp.org/health_pages/Neurological-Disorders/List-Of-Chiari-Symptoms/show/1024?cid=186
I had drop attacks...vision issues....numbness in my face hands and legs.I have bowel and bladder issues.Vertigo.....memory issues, cognitive issues.
http://www.medhelp.org/health_pages/Neurological-Disorders/List-Of-Chiari-Symptoms/show/1024?cid=186
Thanks for the all the info you are providing. I am sorry for so many questions.
At this time is difficult for me to say if my cervical spine is causing all my woes or this Chiari Malformation noted on the MRI. Will you tell me some of the symptoms the Malformation can cause?
At this time is difficult for me to say if my cervical spine is causing all my woes or this Chiari Malformation noted on the MRI. Will you tell me some of the symptoms the Malformation can cause?
COMMUNITY LEADER
Hi...not sure where u read that a 10 mm herniation warrants surgery....I had surgery with a herniation of 6 mm.
Size does not dictate to who or when surgery is needed.many can have a 17mm herniation and no CSF blockage or symptoms.
So u do need to find a dr that knows chiari to get the right testing done....CINE MRI for looking at CSF flow, MRI's of the cervical spine, thoracic and lumbar.
In the brain MRI the drs should be looking at overcrowding as well as the CSF blockage, then they look at ur symptoms and quality of life.
There is must dispute over the list of activities to avoid pre and post surgery, many chiari drs will advise against these activities as a way to prevent further issues...some say go do what u want....in having the surgery and trying to get back to things I have been extremely slow being able to do simple things so I can not imagine going back to play sports or lifting heavy items ect.....I do know we r all different and many may be able to bounce back and do much more than my self...we all have to listen to our own bodies, but be very aware of what some of these things may do to a chiarian.
Size does not dictate to who or when surgery is needed.many can have a 17mm herniation and no CSF blockage or symptoms.
So u do need to find a dr that knows chiari to get the right testing done....CINE MRI for looking at CSF flow, MRI's of the cervical spine, thoracic and lumbar.
In the brain MRI the drs should be looking at overcrowding as well as the CSF blockage, then they look at ur symptoms and quality of life.
There is must dispute over the list of activities to avoid pre and post surgery, many chiari drs will advise against these activities as a way to prevent further issues...some say go do what u want....in having the surgery and trying to get back to things I have been extremely slow being able to do simple things so I can not imagine going back to play sports or lifting heavy items ect.....I do know we r all different and many may be able to bounce back and do much more than my self...we all have to listen to our own bodies, but be very aware of what some of these things may do to a chiarian.
I thought to myself, there is no way I have any of those diagnoses physicians have been trying to give me thus far. I am a nurse, so, I know when something does not sound correct in my gut; I may not have the answer, but I know when something is not right. Plus, the physicians I have seen have been very rude on top of being incompetent. My family physician right out lied by omitting the MRI mentioned a possible Arnold Chiari Malformation. I am keeping him in the background just in case I need another referral or something for flu or cold because that is all he is good for. Later, I will research for another PCP/family physician.
Secondly, I am American, so I am not too familar with the medical system here. My husband is Belgian, but he doesn't see a physician regularly.
Hopefully, it will get better.
Secondly, I am American, so I am not too familar with the medical system here. My husband is Belgian, but he doesn't see a physician regularly.
Hopefully, it will get better.
I do not know how large the herniation is; the MRI made no mention of the size. I have read if it is 10mm or more and/or you are having symptoms surgery is warranted. All the physicians that have seen the report made no big deal about that; more concerned with the cervical spine herniation into the dura sac. All I know is that I know nothing about Arnold Chiari Malformations. I am a nurse, but never have taken care of a patient with this. I am noticing even the physicians don't know very much. I felt as soon as I saw that MRI report that it was a death sentence; terrible diagnosis to have, but from reading the posts in this forum I am better understanding you can live with this and do ok if I indeed have this. My husband is freaking out!
No one has checked my gag reflex lately. I have not been having any problems with swallowing. I eat very well. I have been having alot of headaches, periods of brain fog, fatigue, fuzzy vision at times and constant bobbing/rocking sensation even when I am not moving. If I laugh or cry hard enough the back of head feels like it is being squeezed and won't release right away. I have had this for a long time though; years.
Hopefully, when I see this next physician he will be the one. I am going to the largest hospital in Belgium. I might have to go to another country in the end; Netherlands, France or Germany. I will see.
Hopefully, when I see this next physician he will be the one. I am going to the largest hospital in Belgium. I might have to go to another country in the end; Netherlands, France or Germany. I will see.
Hi, Like you I was sent down the road of Menears, BPPV and other inner ear DX. I was eventual DX with Chiari, Syringomyelia and other congenital spinal cord problems. It is very frustrating trying to find Doctors who will listen providing they actually know what Chiari is.
Find a Neurosurgeon who is experienced in Chiari, know your condition so that you can deal with doctors and know when they are not being honest with you.
Stay positive.
Ray
Find a Neurosurgeon who is experienced in Chiari, know your condition so that you can deal with doctors and know when they are not being honest with you.
Stay positive.
Ray
Welcome!
Good for you for asking for the MRI copies!! It was my saving grace in the end. My NL didn't even bother to MENTION the chiari malformation just basically handed me back to my family doctor with a suggestion that it was stress/anxiety. Lucky for me, I found the right NS who had an open mind and I showed him my pics and he saw the herniation right away. I know I've said this a lot lately on this forum but has anyone checked your gag reflex?? This was what sealed the deal for me, I had no gag reflex and didn't even know it!! It was proof that I had cranial nerve damage.
I know it is incredibly frustrating but you just have to keep pushing for the care you deserve and ingnore anyone who is just trying to pass you off...you will find the right doctor...it's just a matter of time. Have faith in yourself, that was something that I lacked in from time to time and almost wanted to believe I was crazy. I wish I could give you a referral but I'm in Canada!!
We are all here to help, anytime!!
Good for you for asking for the MRI copies!! It was my saving grace in the end. My NL didn't even bother to MENTION the chiari malformation just basically handed me back to my family doctor with a suggestion that it was stress/anxiety. Lucky for me, I found the right NS who had an open mind and I showed him my pics and he saw the herniation right away. I know I've said this a lot lately on this forum but has anyone checked your gag reflex?? This was what sealed the deal for me, I had no gag reflex and didn't even know it!! It was proof that I had cranial nerve damage.
I know it is incredibly frustrating but you just have to keep pushing for the care you deserve and ingnore anyone who is just trying to pass you off...you will find the right doctor...it's just a matter of time. Have faith in yourself, that was something that I lacked in from time to time and almost wanted to believe I was crazy. I wish I could give you a referral but I'm in Canada!!
We are all here to help, anytime!!
COMMUNITY LEADER
Hi and welcome to the Chiari forum.
I see u r active in the Neuro forum......and I know from some of ur own posts iu know that not all drs r well informed in all areas. Even if it is their filed like Neuro...Chiari is a separate specialty and u need a dr that specializes in that area of related conditions.
Many drs depending on how far into the foramen magnum ur tonsils were herniated will consider it an incidental finding not worth repeating.
Do u know how large ur herniation is?...If it is under 5 mm many drs and radiologists dismiss it...
Many of us have gone yrs looking for answers....and we r willing to share our experiences and support.
Happy to add u to our little family here, but sorry the reason u had to seek us out.
"selma"
I see u r active in the Neuro forum......and I know from some of ur own posts iu know that not all drs r well informed in all areas. Even if it is their filed like Neuro...Chiari is a separate specialty and u need a dr that specializes in that area of related conditions.
Many drs depending on how far into the foramen magnum ur tonsils were herniated will consider it an incidental finding not worth repeating.
Do u know how large ur herniation is?...If it is under 5 mm many drs and radiologists dismiss it...
Many of us have gone yrs looking for answers....and we r willing to share our experiences and support.
Happy to add u to our little family here, but sorry the reason u had to seek us out.
"selma"
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