Aa
Do I have Chiari...
I have been battling debilitating headaches, neck pain, numbness and tingling in extremities, vision impairment, (now legally blind in left eye), pseudo-seizures and more since 2000.
Initially, they found a Giant Sub-Arachnoid Cyst measuring 5cmX5cm and fenestrated it. Then a VP Shunt placement in 2003. The shunt began "over-shunting" within a few months and had to be removed at which point I contracted bacterial meningitis because my stitches were allowing CSF to seep out.
After I place a post a few days ago, a member suggested that I look into Chiari Malformation and after I looked up the symptoms, found that all but 3 applied.
I have 4 children and a wife and have been the sole means of support. I have had to take several leaves of absence from work due to my condition.
The numerous doctors I've seen have primarily diagnosed me with chronic migraines that cause pseudo seizures as a result of pain, but all agree that the cyst is "normal" in size and density and isn't causing the symptoms. They haven't offered any more than pills, pills and more pills.
Could this be Chiari? As strange as it sounds, it would be nice to have a real diagnosis instead of a bunch of "educated" guesses.
Any help is appreciated.
Initially, they found a Giant Sub-Arachnoid Cyst measuring 5cmX5cm and fenestrated it. Then a VP Shunt placement in 2003. The shunt began "over-shunting" within a few months and had to be removed at which point I contracted bacterial meningitis because my stitches were allowing CSF to seep out.
After I place a post a few days ago, a member suggested that I look into Chiari Malformation and after I looked up the symptoms, found that all but 3 applied.
I have 4 children and a wife and have been the sole means of support. I have had to take several leaves of absence from work due to my condition.
The numerous doctors I've seen have primarily diagnosed me with chronic migraines that cause pseudo seizures as a result of pain, but all agree that the cyst is "normal" in size and density and isn't causing the symptoms. They haven't offered any more than pills, pills and more pills.
Could this be Chiari? As strange as it sounds, it would be nice to have a real diagnosis instead of a bunch of "educated" guesses.
Any help is appreciated.
COMMUNITY LEADER
Hi Karen,
I can totally understand how u r feeling.....as for the MRI and the dr not seeing chiari, it is still possible to have chiari.....there is a realitivily new classification called chiari 0, not all drs recognize this type.
And even tho u do not have a herniation u can have symptoms.
Once u get to a chiari specialist u will know more of what is going on......and no, u r not crazy...I forget what I say sometimes.....and that full feeling u mentioned....after my surgery I told my DD that I felt clearer...like pulling thick lint off the dryer vent.....
and no, u r not crazy, I find myself repeating at times too......
I felt the same way and thought I was going to break the table I was on for my EMG....I don't think I want another one of those. ouch...and it scared me a bit too.
Keep in mine some of ur symptoms may be med induced.
....including ur lapes in memory....and no u r not crazy. : )
"selma"
I can totally understand how u r feeling.....as for the MRI and the dr not seeing chiari, it is still possible to have chiari.....there is a realitivily new classification called chiari 0, not all drs recognize this type.
And even tho u do not have a herniation u can have symptoms.
Once u get to a chiari specialist u will know more of what is going on......and no, u r not crazy...I forget what I say sometimes.....and that full feeling u mentioned....after my surgery I told my DD that I felt clearer...like pulling thick lint off the dryer vent.....
and no, u r not crazy, I find myself repeating at times too......
I felt the same way and thought I was going to break the table I was on for my EMG....I don't think I want another one of those. ouch...and it scared me a bit too.
Keep in mine some of ur symptoms may be med induced.
....including ur lapes in memory....and no u r not crazy. : )
"selma"
Hey again,
To answer your question. I know as soon as he looked at it he said that I didn't have Chiari, which made me happy but still wondering what is going on. He did see something and told me that it could be a shadow, but while we were leaving he was already giving it to a nurse saying to get it to some Neurosurgen..fast. It is scaring me. I don't sleep and all I do it eat and pittle around doing anything I can. I am so driven. I love to work and I bet u are the same way. It just makes me feel alive.@ the EMG's they are only going to be in my arms and legs. I have had them in my arms twice. The very first time I did it..it shocked the blank out of me.Hey thanks again for trying to help me. We'll get there..I have to say one more thing...God has taken half my pain away. I am so greatful and I am so glad I found Him. I sure am chatty here lately too. Highstrung. Oh well, U take care...Karen
To answer your question. I know as soon as he looked at it he said that I didn't have Chiari, which made me happy but still wondering what is going on. He did see something and told me that it could be a shadow, but while we were leaving he was already giving it to a nurse saying to get it to some Neurosurgen..fast. It is scaring me. I don't sleep and all I do it eat and pittle around doing anything I can. I am so driven. I love to work and I bet u are the same way. It just makes me feel alive.@ the EMG's they are only going to be in my arms and legs. I have had them in my arms twice. The very first time I did it..it shocked the blank out of me.Hey thanks again for trying to help me. We'll get there..I have to say one more thing...God has taken half my pain away. I am so greatful and I am so glad I found Him. I sure am chatty here lately too. Highstrung. Oh well, U take care...Karen
Hey selmaS,
I am so sorry @ the last note. I hit post accidentally. I am doing some weird things here lately. Does that mean I am losing my mind.Me and my hubby had a debate over Zanax. HE Hates it. I can't convince him that it is the only thing I can take for my spasms and tremors, oh and anxiety and depression.I know it's add., but what do u do when u can't take flexeril for the muscle spasms.It evens relaxes the nerves long enough so I can at least get 2-4hrs.I here lately don't sleep over that a day. I literally am scared. I debated wether to start Cymbalta. I have had some samples right beside by bed for the longest in my drawer.I am spastic and energetic...I have always been driven.I think, I know I have short term memory lose...bad. I was so embarrased the other night in church. It was singing night and I requested a song, but I requested it again. I did it I think three different times my mom said. OH my dear Lord...I am crazy. Do u think? Have u heard of anyone else doing this. I wonder I have been feeling full in my head..like fluid or something was making my head feel sore and have spots that are very sensitive to the touch. I know this is ridiculas..The symptoms keep piling on me.Well, see what u can come up w/for me. I go back to see my Neuro.the 18th...I think. I don't know what I'd do w/out my hubby. He keeps me in line.
Hey, I am sorry I haven't even asked how u are doing. I hope u are well. We need u too.Hey..thanks..Karen
I am so sorry @ the last note. I hit post accidentally. I am doing some weird things here lately. Does that mean I am losing my mind.Me and my hubby had a debate over Zanax. HE Hates it. I can't convince him that it is the only thing I can take for my spasms and tremors, oh and anxiety and depression.I know it's add., but what do u do when u can't take flexeril for the muscle spasms.It evens relaxes the nerves long enough so I can at least get 2-4hrs.I here lately don't sleep over that a day. I literally am scared. I debated wether to start Cymbalta. I have had some samples right beside by bed for the longest in my drawer.I am spastic and energetic...I have always been driven.I think, I know I have short term memory lose...bad. I was so embarrased the other night in church. It was singing night and I requested a song, but I requested it again. I did it I think three different times my mom said. OH my dear Lord...I am crazy. Do u think? Have u heard of anyone else doing this. I wonder I have been feeling full in my head..like fluid or something was making my head feel sore and have spots that are very sensitive to the touch. I know this is ridiculas..The symptoms keep piling on me.Well, see what u can come up w/for me. I go back to see my Neuro.the 18th...I think. I don't know what I'd do w/out my hubby. He keeps me in line.
Hey, I am sorry I haven't even asked how u are doing. I hope u are well. We need u too.Hey..thanks..Karen
COMMUNITY LEADER
I am sure u feel much better knowing what is going on.Is ur dr a chiari specialist?
I hope u feel better after ur nap.
"selma"
I hope u feel better after ur nap.
"selma"
I finally know what is plaguing me. I have reserched for so long, but have ever symptom of the syringomelia. The dr. hit on it to the other day. I am researching it now and don't feel to good @ it, but there is hope to not feeling so bad. I can't imagine what u have been going through. I got some more bad news today, but it has to do w/my teeth. I haven't been going to dentist to get them cleaned every 6mos.and that is my fault, but it was due to the pain I feel when they press down upon my neck.
I just woke up at the comp. w/my teeth pressing down upon my tongue...going to lye down and I will write back. My tongue feels werid and I have a splitting headache. I scare myself when I do that. I just don't get enough sleep. My hubby was out w/my son and friend swimming. I was out a total of 88 min. I will get back to you. Sorry for that. Thanks...Karen
I just woke up at the comp. w/my teeth pressing down upon my tongue...going to lye down and I will write back. My tongue feels werid and I have a splitting headache. I scare myself when I do that. I just don't get enough sleep. My hubby was out w/my son and friend swimming. I was out a total of 88 min. I will get back to you. Sorry for that. Thanks...Karen
COMMUNITY LEADER
Well, I had no idea what to expect and feel my pain threshold is big, but, the EMG was very uncomfortable for me.The Dr that conducted the test, kept saying he was sorry and was kind in the way he proceeded. I did get thru it , after all I do have chiari....lol....
As for this ball u r asking about, I have no Idea, but will see what I can find out...do u know the tech term for it?
I imagine with the plate u can no longer have an MRI?.....and I wish I had something more to tell you......
Do u have copies of all ur reports and tests?......just be prepared to be able to get a second opinion.....listen to ur gut when it comes to the dr u r seeing.
"selma"
As for this ball u r asking about, I have no Idea, but will see what I can find out...do u know the tech term for it?
I imagine with the plate u can no longer have an MRI?.....and I wish I had something more to tell you......
Do u have copies of all ur reports and tests?......just be prepared to be able to get a second opinion.....listen to ur gut when it comes to the dr u r seeing.
"selma"
Just had an EMG about a month and a half ago. Pleasant, no, but jump and hit the way... uhhh not even close to that bad. Don't sweat it. Just stay calm and force your body to stay relaxed during the procedure and it's not that bad. Not pleasant but not that bad.
Hey Selma,
I appreciate ur concern @ me. I recently went to a new dr.and he definately told me while in his office while looking at my MRI's that I didn't have Chiari and I was glad to hear that, but he did say that he did see something in my neck, but he seemed concerned I could see it in his eyes. He commented on seeing some dots in my cervical area, but said that it could be a shadow from my plates.I hope it's just a shadow, but that is exactly where I hurt all the time.I did notice as I was leaving he was getting my MRI's to someone fast to look at. I am so blessed. I am hoping it's not been to long. I have gone w/out ins. for 2yrs. and had to wait until I got ins. so now tests have been scheduled for Fri. OH...EMG..I hate those things..they said it was going to be in my arms and legs. My uncle told me that the dr.'s did his on his back. Can they do that?He told me that he jumped and hit the wall.. but he does exaggerate a little.That was what I was expecting...scared but in pain and would do. I believe this dr. will get to the bottom of it. I just think myself that I have perm. nerve damage from waiting so long. They are going to do a CT Scan...my first and I don't know why that the dr.'s who done my surgery didn't do one. They did every thing else, but Thoracic and that is where I was hit with the ESI. I jumped girl on the table like they use the paddles to revive someone and they were concerned cause they told me to sit up fast and got in my face and asked if my ears were ringin or did I have heavy breathing. I just know in my heart and my soul that something is back there. IT Pulsates right in the middle of my back just like a giant cut would and the pain is there...and sore. What do u think? Have u ever heard of people being injured that way?I really think I have a two-fold problem. I do have to say that I rededicated my life this past two wks. and half of my pain has gone. I am serious. The Lord is My Great Physician....:)
I am so happy now...it is unbelievable..I am still going to see what is going on. They talked to me @ putting a ball in w/medicine in it and it being connected to my spine. Is that a good idea? I don't know much @ it, I figured u had heard of it. I want to say something else while it is on my mind...I sure am glad for good people like u who help us people who are lost when it comes to health issues....Thank u Selma for being there for so many of us..GOD BLESS YOU!!!
I appreciate ur concern @ me. I recently went to a new dr.and he definately told me while in his office while looking at my MRI's that I didn't have Chiari and I was glad to hear that, but he did say that he did see something in my neck, but he seemed concerned I could see it in his eyes. He commented on seeing some dots in my cervical area, but said that it could be a shadow from my plates.I hope it's just a shadow, but that is exactly where I hurt all the time.I did notice as I was leaving he was getting my MRI's to someone fast to look at. I am so blessed. I am hoping it's not been to long. I have gone w/out ins. for 2yrs. and had to wait until I got ins. so now tests have been scheduled for Fri. OH...EMG..I hate those things..they said it was going to be in my arms and legs. My uncle told me that the dr.'s did his on his back. Can they do that?He told me that he jumped and hit the wall.. but he does exaggerate a little.That was what I was expecting...scared but in pain and would do. I believe this dr. will get to the bottom of it. I just think myself that I have perm. nerve damage from waiting so long. They are going to do a CT Scan...my first and I don't know why that the dr.'s who done my surgery didn't do one. They did every thing else, but Thoracic and that is where I was hit with the ESI. I jumped girl on the table like they use the paddles to revive someone and they were concerned cause they told me to sit up fast and got in my face and asked if my ears were ringin or did I have heavy breathing. I just know in my heart and my soul that something is back there. IT Pulsates right in the middle of my back just like a giant cut would and the pain is there...and sore. What do u think? Have u ever heard of people being injured that way?I really think I have a two-fold problem. I do have to say that I rededicated my life this past two wks. and half of my pain has gone. I am serious. The Lord is My Great Physician....:)
I am so happy now...it is unbelievable..I am still going to see what is going on. They talked to me @ putting a ball in w/medicine in it and it being connected to my spine. Is that a good idea? I don't know much @ it, I figured u had heard of it. I want to say something else while it is on my mind...I sure am glad for good people like u who help us people who are lost when it comes to health issues....Thank u Selma for being there for so many of us..GOD BLESS YOU!!!
COMMUNITY LEADER
Hi Karen,
Since u had a MVA I am sur u have had MRI's along with the surgeries u already had...may I ask when was the last MRI u did have and was it of ur brain?
Now with the plates I am sure u can no longer have an MRI......
If u can get all ur original copies of ur MRI's and the reports u may be able to send them for a second opinion.There is a possibility u might have a condition called syringomyelia it can develope as a result of a trauma such as what u describe in ur accident.
U deff want to get a dx to see if u may have chiari or a chiari related condition.U may also want to be checked for pusedotumor cerebri......
I pray u can find answers.
"selma"
Since u had a MVA I am sur u have had MRI's along with the surgeries u already had...may I ask when was the last MRI u did have and was it of ur brain?
Now with the plates I am sure u can no longer have an MRI......
If u can get all ur original copies of ur MRI's and the reports u may be able to send them for a second opinion.There is a possibility u might have a condition called syringomyelia it can develope as a result of a trauma such as what u describe in ur accident.
U deff want to get a dx to see if u may have chiari or a chiari related condition.U may also want to be checked for pusedotumor cerebri......
I pray u can find answers.
"selma"
Please help me, I am a single mother of two boys and I can't do anything anymore. I have always been driven and now can't even pick something up off the floor. I had a ruptured petrusion and titanium plates(C5-C6)(Feb.'06) and I don't know what ABCD mean(I have had two docs(one Chiro and other pain management) told me that I either didn't even need the surgery and the other told me that I NEEDED IT OUT... I am literally suffering and don't know what to do. I lost my ins. for over a yr. and now my cond. has worsened(now have medicaid). My symptoms are as follows:I have neck and back pain, my legs burn and have muscles that have just indented(depleted)(my right leg right under my knee has a place that burns so badly and is gone, it's like a band that is wrapping around my leg,so scary),I get eletric shocks just touching anything anywhere(it's not like touching something after friction, it's electric like a socket),I am closing one eye and I have caught myself and my mom saw me do it while I was talking to her and I didn't even know it, I drop everything because I have severe muscle weakness,I have to lay in bed just @ all day and elevate my legs to where they can get some relief, but still I wiggle and squirm due to pain( esp. under knees and down my calf muscle),I feel as though my head is full of liquid sometime( headache is strange, it will hit me and just go, then come back again( never done this in my life),sometimes it hits me in the temples...really scary,I have been diagnosed w/Spinal Stenosis, Cervicalgia,spondylosis, I just went in to have my neck repaired from a car accident I had back in '95 where my head hit the top of the roof of car and I guess pushed everything down and now I have all this...oh, they left a T3-T4 compressed fractured vertebrea in my neck and it hurts there so badly..what is happening to me..I actually feel like I could be dying or something. MY KIDS NEED ME..now more than ever. I have an eleven yr. old and a seventeen yr., both boys. One is always there to help me, but the other has no choice...he lives w/his dad(we were dv. '94 and he was sexuallly abused by his step-mother, but she has an uncle as a county judge(do you think that had anything to do w/it? I was not found to be unfit or unstable..the judge sent the determination in mail..hmmmm..and he was an honor roll student and a good kid..now I haven't seen him since xmas. I have talked to him just a couple of times..I am sure this gives me a tremendous amount of stress, but the LORD is helping me w/that. I don't believe for one second that this is causing all of this. I have had 8 MRI's and they can't see behind my plates in neck and they see arthritis in my L's.
I am sorry I had so much to say, but it is all true...GOD knows,I am not lying @ it..why would I, I have worked all my life and love it. I am going to get there and if you put it into GOD's hands..He will get you to where you want to be or at least give you info to how to fix it..it's all a matter of faith...I sure hope all of you get better and you will be in my prayers...Karen ***@****
I am sorry I had so much to say, but it is all true...GOD knows,I am not lying @ it..why would I, I have worked all my life and love it. I am going to get there and if you put it into GOD's hands..He will get you to where you want to be or at least give you info to how to fix it..it's all a matter of faith...I sure hope all of you get better and you will be in my prayers...Karen ***@****
Thank you for your advice. I called my neurosurgeon at UCSF and asked him to look at some old MRI's that I had done pre-/post craniotomy and am waiting for a return call from him.
I'm also still waiting for the appt. at Stanford, which I've been waiting for since February 8 of this year.
I'll fly anywhere necessary to be properly diagnosed and treated. I just want my life back.
I'm also still waiting for the appt. at Stanford, which I've been waiting for since February 8 of this year.
I'll fly anywhere necessary to be properly diagnosed and treated. I just want my life back.
Are you saying that you had no measurable herniation of the tonsils into the spinal cord?
What were your symptoms?
What were your symptoms?
Chiari is diagnosed with an MRI, hopefully you have one in the area that has the MRI in CINE, it give much better view. Some Neurologist and neurosurgeons do not recoginze Chiari 1 unless it has a cerebellum tonsil 5mm or longer, however it you do have one that is diagnosed as 'no symptomatic, minimal, etc.' beware! The Chiari Institute in NY considers its Chiari if there is a blockage of the cerebrial fluid and i am one of the 00mg and have all the symptoms, i went to 7 neurologists and or neurosureons and was told mine was not causing the symptoms though i had them all. My neurolgists in Houston then sent me to NY and I saw the experts (about 7 in the US that are exclusively working with Chiari related spine condtions) They were able to find something that all the others missed, my cerebellum tonsil was wrapped around the brain stem! My 00mg Chiari is not the nice kind. I flew from Texas to NY. If you have Chiari its a great place to go, they not only treat you but the educate on the condition so you can speak with future doctors you see. Chiari is often missed even though they have the MRI because of the old 50s diagnosis of what it is. Dr. M of The Chiari Institute redefined it in the late 1990 its on their web site. You will interesting reading there. Mine was misdiagnosed for over 20 years.
I have Chiari l. It's not severe but it showed up very easily on both brain and cervical spine MRI's. It sounds like you have probably had MRI's considering the problems you have had. You could ask you neuro to review the films for the malformation.
I went to the doctor in january because of dizziness, blackouts and neck pain. I was then diagnosed with a Chiari type 1 Malformation and found out that it has been the cause of years of back pain as well. I cannot sit or stand for to long without dealing with numbness and pins and needles in my legs. The headaches get so bad some days that it hurts to open my eyes.
I think that if you believe this is a possiblility then you need to locate a neurolist/neurosurgon in your area that knows about chiari. If it could be an answer to all your questions then my vote is to try and find out!!
Good luck to you!!
I think that if you believe this is a possiblility then you need to locate a neurolist/neurosurgon in your area that knows about chiari. If it could be an answer to all your questions then my vote is to try and find out!!
Good luck to you!!
I too am having confusing sypmtoms. Started with pain in neck, right shoulder and tingling in right hand. Doc said I had a pinch nerve in neck, MRI showed slight bulge C5/C6 and spurring @ C6/C7. Saw neurosurgeon yesterday, said the spine looked good. However, I have had a spreading of numbness throughout my body. Neck, lips, nose, head, face, mouth, gums, forehead and scalp are all completely numb. Original numbness to lips and chin spread to entire head within 5 days. Started on right, spread to both.
General loss in feeling to entire body, worse on right side, but present on both. Today my feet are numb. Hands are going too.
PCP thinks I am allergic to Lyrica prescribed for pinched nerve and has me slowly going off of it. I am hoping he is right, but symptoms are very bizarre.
Any ideas????
General loss in feeling to entire body, worse on right side, but present on both. Today my feet are numb. Hands are going too.
PCP thinks I am allergic to Lyrica prescribed for pinched nerve and has me slowly going off of it. I am hoping he is right, but symptoms are very bizarre.
Any ideas????
I was diagnosed with Chiari 1 Malformation just in May. I am just learning about it. I have a lot of symptoms headaches, tingling, speach problems, I feel alot like my head is very full, forgetfulness and more. I saw a neurologist who found my Chiari and was not sure what to say so she sent me to another one for second opionion. He basically said my symptoms where not from Chiari. He wanted to send me to have physical theropy and a test where they find out like your IQ. I decided maybe I needed a neuro-surgeon. I saw a neuro-surgeon who basically said there is nothing he would do because I do not have conpression or syrnix, but I have so many symptoms that worry me due to functioning daily. So I feel I am left in limbo again. I don't know what to do at this point. I am having a hard time finding someone who cares about my pains. But, I am hanging in there and I am thinking about going to another Surgeon to see if I can't get some kind of help somewhere. I did find out you have to see a neuro surgeon not a neurologist. Hope I helped in some way. Just hang in there. You do need an MRI to determine if it is Chiari.
I have almost all on the list too . The only way your going to find out , is ask your pcp for a Mri of your head and neck . He should do it , your paying him . Then find a chiari expert and they are allover the US . I can help you find one. Alot of Drs dont know this diease very well . They will check you fo rsyringomyelia too . the 2 usually go hand in hand . Roz
ps and Migranes are almost everytime misdiax and it turns of chiari .
ps and Migranes are almost everytime misdiax and it turns of chiari .
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
