Is their such thing as mild chiari malformation. my husbands MRI just came back and said he has right sided assymetrical chiari malformation 7mm below. His Dr. does not seem to concern however his symptoms (constand ringing in right ear, weakness in limbs, shorterm memory loss, hands swelling, dizziness etc.) have all come about withing the last two months but slowing coming togeather over the past two years and progressively getting worse. Whata do I do.
There r many drs that will call Chiari mild or incidential.....there r other tests that should be done....such as is there restricted CSF flow, other chiari related conditions, like a syrinx, tethered cord...pusedotumor cerebri.
Most NS even if they r aware of chiari doesn't mean they r up to date on new proceedures , terminology or which symptoms can affect the patient.
Let us know where u live so we can help u locate a chiari specialist.....we do have a thread that lists chiari drs that the members here have used...please research all drs.
I hope u continue to share ur DH chiari experiences and continue to ask questions, and concerns.
Have the surgery it's going to get worse and can be irreversible. If you do some research of chiari, not forums or wiki's but medical literature it says people with more then 5mm are usually recommended surgery, have him get the surgery.
First I should tell you this. I was in acar accident in March of 1999. From that I started having severe headaches, than sleep prob;ems and more brain freeze headaches (ONLY in BACK of SKULL). I was recently diagnosed with Chiari Malformation type 1. Mine doen's go past the 5mm. It's more like 4mm I think. He wouldn't tell me exactly where just that is wasn't quite at the 5mm and he doesn't reccomend surgery. But, about 4 months ago I started having brain freeze headaches, ringing in ears almost constantly & I mean regularly, I have been losing my hearing for almost 2 years now (some days are better than others but it's not severe, just really annoying), I sometimes see spots, and my eyesight (but I do wear glasses but my prescrip. is fairly weak except for astigmatism), I have a sleep issue not related to accident or Fibromyalgia as well that I don't understand: it's like being waking up paralized and I can barely breathe but I look asleep. That sleep disorder I've had my whole life along with headaches, seeing spots/floaters, and the sleep thing that is NOT sleep Apnea. Can someone in my situation have just as severe and debilitating Chiari even though mine doesn't go as far down as it should for surgery? If so, would they they even do surgery if I wasn't past the 5mm? Also, Chiari has often times been misdiagnosed for Fibromyalgia and Chronic Fatigue Syndrome, something they say I have and I take a **** load of meds for. Surgery might get rid of the Fibro pain if it's not really fibro but the Chiari. I would like to talk to a specialist who really knows about Chiari & not the jerk who made feel he had no time for me during my appointment with him. You the really sad part is, if I really want the surgery on the Chiari and I have some moderate plus pain issues with my neck and he'll do that surgery too. But he said I should just accept that I'm getting older now (I'm turning 40 years old in August 2009) and I should just live with the pain no matter how debilitating it is. My mom was there also for support, she was shocked, especially since he would still do the surgeries. He said ringing in ears is not a Chiari thing and so on. So, I would love to find someone close to me that I can go to for a 2nd opinion.
Yes, this can all be ur chiari and related conditions.
Did u see a chiari specialist?...did u have a CINE MRI?.....thoracic, lumbar MRI's?
Even tho u do not fit the Chiari I textbook description with a herniation of 5 mm....it is possible that u have Chiari 0 and if u have a blockage and overcrowding like I did a specialist will deem u a surgical candidate. If this condition is left alone too long it can cause perm damage.
When was ur last brain MRI done?
If it was more than 6 months ago, u will need a new one......
there is a thread here with a list of chiari drs.
Do research on all drs u consider going to.
I am a 40 female and have been suffering from headaches, fatigue, etc. etc. for years. Was in a car accident in 2005 and since then the headaches, neck pain, numbness etc have gotten worse. I had a really weird episode in April, all of a sudden vision went blurry, numb on right side of head, tremendous amout of pressure in back of scull right arm numb and other things. Since then I have seen 2 nuerologist, Nuro-opthamologist and rhuemetologist ( sorry about spellings). So far I have been told I have optic nueritis, possible lupus and mild chairi 1 at 5.00-6.00mm. My ana and antidsdna have come back positive 3 times now. I cannot get rid of the headaches and more and more symptoms keep coming. I just am getting so frustrated and the doctors will not tell me anything and keep sending me to other doctors and more and more test. Any suggestions
We all can relate to ur frustration with ur dx and treatments that do not work.Unfortunatly most drs to not recognize chiari as a source of pain and symptoms and feel it is a normal condition some r born with.......this is y we on this forum stress u find a chiari specialist, not a NS that does treat chiari, but a dr that makes chiari the focus of his practice.
We have a thread with a list of chiari drs...look at it and research a few of the drs......u may find u need to travel to get to one, but most of us do.
We do have info in the Health Pages here on MedHelp.
I am a mother of two girls one 24 and the other 17. The older has had headaches since she was a small child. Labled as migraines. While at college headaches have reoccured and her GP did MRI's of the head and neck. These showed a 7mm herniation. He recommended acupuncture and chiropractic care. The youngest has never had headaches but developed one about 4 weeks ago that has persisted. She has had nausea, vomiting,neck pain,pain at the base of the skull that travels up and over the head,neck stiffness,dizziness,fatigue,loss of sensation in rt arm,fullness and swishing in ears,double vision,seeing black spots,photophobia and occ. sipkes on blood pressure. The opthalmologist said she has swollen and inflamed optic nerves in both eyes. Eye Dr. states not caues by migraines. I told our GP about oldest daughter being dx with Chiari and the 7mm herniation and he had the Mri's done. The radiologist dx. mild chiari. We wound up in ER and transferred to Cook's Children's Hosp where their radiologist said no chiari and that there was a slight sinus congestion in one sinus cavity and the Dr. there dx migraine. But, the longer she talked I had the feeling she was biased towards migraines her her husband and both daughters have migraines. We are waiting to see the neurosurgeons but have to wait until the 5th and the 9th of Nov. Meanwhile youngest has been unable to go to school because of pain and vision disturbances. Does anyone have any suggestions for pain relief. We have tried pain pills, anti-inflammatories, nausea medicines, steroids, ice packs, heat packs and antibiotics, nothing really seems to work.
We just got a call today from the Neurologist, our 6 year old has Chiari. She asked if he has neck pains, and we said yea, so she said we have to go see a Neurosurgeon. I asked the Neurologist if this could be the reasons for his headaches he always gets and when he cries because his arms and legs hurt so bad he won't walk or carry anything. She said no. After reading up on all of this, she is so wrong, I am shocked! I hope to get better answers from the neurosurgeon. My son has had problems since he was 8 weeks old. He did not walk until he was 2 1/2 and did not use full sentences until almost 4 years of age. Now, he is in 1st grade and has been diagnosed with Autism, ADHD combined type, Anxiety Disorder with OCD tendencies, touretts (due to the tremors). He was sent in to get the MRI because in the last year he has had on top of all of this, conductive hearing loss, vision loss, and a regression in speech despite getting speech therapy. All of the symptoms that he has, concentration, memory, shaking, headaches,, hearing things (buzzing) I think now have been misdiagnosed. They have had him medicated since 3 years of age, and now, are removing him from medications. Has anyone else ever been misdiagnosed with so much and could Chiari in fact be the underlying cause of all of this?? I am sick to my stomach, but yet, glad they have figured something out because I thought I was going crazy! Any advice as to Specialists around me, or local support groups, etc, would be wonderful!
Welcome to the Chiari forum...glad to have u here, but so sorry for the reason u had to seek us out.
Many chiarians do have other conditions as well and the chiari may nor be responsible for everything going on with ur DS but many of them can be.
The buzzing is tinnitus I have that also, and I wouldn't be surprised if he also had chairi related conditions like a syrinx, tethered cord ro intercranial hypertension.
Please be sure that the NS u go to is in fact a chiari specialist.All NS's can treat this, but u want someone that has dedicated their practice to this condition to treat him.
There r many NS's that do not believe that chiari can cause these issues or ne issues for that matter and will dismiss it. Do not let this get u down, keep pushing.
We do have a list of chiari specialists here on MedHelp on our forum and our Health Pages....it is not a complete list, but one comprised of NS that members have been to and liked.Please research all drs u consider to see.
I am not sure where Russel, PA is I am in Allentown, PA.....I had to go to NY for a chairi specialist...I tried Philly....and Pittsburgh was too far. Let me know where u r if in western PA u may want to try Dr Bejjani.
I am near Jamestown New York, we have been going to Pittsburgh Children's Hospital so far but the call yesterday shocked us because we were told we wouldn't hear anything for a week. It took them 24 hours to call us and then, all that was said: Schedule an appointment with a neurosurgeon and let them know your son has Chiari with neck pain. They will be able to better direct any questions and do more tests. Have a good day! UGH
Where is Dr. Bejjani located?? I am in Western PA.
Hello Selma,A few weeks ago we heared that our daughter (5 years) has a chiari 1 malformation. (8.8 mm herniation).She had an MRI because she has had haedaches and vomitting. 3 haedaches in 10 weeks. The third time she had problems balancing the day before the haedache..The neurologist said that it was migraine, but he took an mri to be sure it wasn't something else (like a tumor.)So they found out she has a chiari 1. They sent me to a neuro-surgeon who told me he would operate. We asked a second opinion and the second surgeon told us not to operate.. It has been 8 weeks ago that she has had any symptoms..Tha second doctor told us also that it was posible she had migraine. (she always had pain on the left eyebrow).He would temporise it and take an mri once a year. He has taken an extra mri to see the liquid flew, and that was ok. There is no pressure and the flew is good. We are very worried, because we are affraid that something 'sudden' will happen. I don't know much about the disease, so Ihope you can help me.. If she has to be operated, I want to find the best specialist..Little problem is that we are from Belgium..But if the best doctor lives in the states, I'll come to the states.. I hope she doesn't needs operation...What do you think about my story?Greetings,Elke
I am not sure if it is affecting her quality of life....and from what I understand she does not have a blockage of her CSF flow. It is possible to have migraines and chiari HA's....
Children do rebound from this and most surgeries ...age is beneficial.....the older one gets the harder to bounce back.
There r several drs in the States that are pediatric chiari specialists......I also am aware of a chiari clinic in Barcelona , Spain......I am not aware of drs or chiari clinics in Belgium.
The best bet is to get as much info on chiari and see what the dr suggests...the symptoms from chiari can cycle.....and it could be ur DD is not in need of surgery at this time, but u r right to want to know whom u can go to if this changes.
And changes can happen very slowly or very quickly.....
If u have access to her MRI's u may want to forward them to a chiari dr in the states or another country that will review them and give u another opinion...some will do this for a fee, but u can get an idea if the thinking of her current dr matches.
I would suggest keeping a journal of ur DD's HA's and meals and activities to rule out other possible issues like food allergies and migraines.
I was in a car accident, like most on this forum. It happened in June. I have had a history of migraines, extreme headaches in the back of my head and have taken all migraine meds known. I also have had miningitus as well about 3 years ago. Ever since this accident, I got an attorney( was other drivers fault.) I was advised by my attorney to get X-rays as well as an MRI. With the MRI it was discovered in the report that I have "Mild Chiari one malformation with C2/C3 segmentation abnormality. With 6mm of left cerebeller tonsillar ectopia and 45mm right cerebeller tonsillar ectopia. Mild Crowding at the foramen magnum". Not sure exactly what that means, but thats what is quoted on my Imaging report. My Health is deterating, I cannot work because of my headaches and my fatigue. I am really tired all the time. I run into things, and have counted. I have 23 bruises on my body. I have had short blackouts, and Numbness. I have seen a nuerologist which I see every 4 weeks. He gives me meds and changes them constantly. I feel like a guniea pig. He says that my chiari does not need to be operated on but he does not deal with chiari his specialty is eye surgery. He says I have PTSS from the accident which is crazy, it was not even a bad accident. I have a letter of protection from my attorney that pays for my medical bills but only certain doctors will take this So I am stuck with him. I have seen an orthopedic surgeon that says I should ask my Neuro all the questions, so I am being passed around to doctors that really have no idea what they are dealing with. I have done a lot of research and I know that my problems stem from my chiari but all the doctors act like it does not exsist. I have sent my MRI and concerns to many chiari specialists and one said I dont have it at all which is bogus, I have the scan and other doctors that have confirmed it. No one will see me because my lack of insurance so I am stuck. All I know is my quality of living is unexsistant and I cant deal with this much longer. I have actually become very depressed(I take meds) and have considered Suicide. And that is not me, I am just in a bad place right now, not being able to work and the frustration of dealing with my sickness. Does anyone have any advice or any suggestions? I am at rock bottom and really need some insight. I hate dealing with this when no one knows what I am handling. All input is appreciated! :)
To clarify, may I ask if the right tonsil is 4 to 5 mm?.....I am sure that is it, as it makes more sense to me...the herniation is asymetrical longer on one side than the other.....and the overcrowding is something true chairi drs look for as well as a CSF blockage...there is some other testing u need, along with a true chiari dr....
Insurance is a big issue too, depending on ur age and where u live u may be eligible for state assistance.There r also different orgs that assist chiarians get the medical help they need.
We r in the process of doing some research on this very topic...and will forward info as we find it.
Read the poem by Dr Oro if u haven't already...it gives hope that there r drs out there that do understand : )
We finally got into Pittsburgh Children's Hospital, neurosurgery dept, and the doctor said that our son has a very mild form of Chiari 1 .... 6mm. She said that there is no way it is the cause of his hearing loss, vision changes, and speech regression. She thinks it is more behavioral. She ordered further testing ; MRI of complete spine, over night sleep apnea test, and a swallowing/gag reflex test. She told us that Chirai only causes headaches and neck pains, and has never heard of paroxysmal rage and strongly believes that Chiari does not affect the behavior of a patient. How behavior can contribute to hearing loss, visual changes, and speech regression (slurs to the point you can't understand him now) is beyond me!
What should we do? Should we continue with the testing, or get in to see a different doctor immediately?? Please let me know what you think. I am going to look up Dr. Bejani and see if my son's insurance will be excepted. I just don't know if we should finish out with the testing of this doc first? Ugh... so frustrating.
Hi...I am so sorry, sounds like the drs there r not chiari specialists......Dr Bejanni is very well recommended.
The testing needs to be done one way or the other......and can take time to be set up....since u know the insurance covers with the dr u already saw...have the testing done...and ask for copies of all MRI's and the reports so when u do go for another opinion...u will have all the info u need.And see if Dr B works with ur insurance.
I know how frustrating this all can be....but u r getting things done, even if the drs do not agree with the chairi dx.Clinically chiari is dx at 5 mm and ur DS's is 6 mm so if that is mild in size only....mine was 4 mm on my right and 6 mm on my left....there is sooooo much more to look at than that,,,so keep pushing : )
Hi selma,, this is Jennie again,,,still wondering if I should be worried, or trying to find me a Chiari Specialist or not?
This time i'm going to type you my letter I got from my Neurologist,,concerning my MRI results... hope its ok.
Jennie's MRI of the brain was completed September 3rd/2009.It was reported as showingg some mild tonsillar ectopia. The cerebellar tonsils protruded through the formen magnum about 4.9 mm. I reviewed the films. There is no kinking of the CC junction and the formen magnum does not look excessively tight.
I cannot link this MRI finding to her duffuse symptoms. I certainly cannot link it to short-term memory or concentration difficulties. She had no signs of a meylopathy.
I have sent Jenny a copy of this letter to inform her of the mild tonsillar ectopia which has been longstanding and is of no clinical concern at this point.
No further neurological investigations are planned for now. There is no need for serial imaging or other neuroimagings at this juncture.
Selma,,,, and yet my headaches, nausea,,pain in the back of head and also in my back keep getting worse..
If you would,,, could you please help me to understand this letter I got from neurologist? Thankyou my dear,,,, Jennie
I can not say a chiari specialist will say u r a surgical candidate, but, I would like to know the advice came from one....I hope that makes sense.Just bcuz u have chairi does not make u a candidate for surgery.....but, a true chiari specialist will monitor u and if u have changes will deff take another look.
Overcrowding, which this dr does not feel u have and a CSF blockage r 2 of the main things besides quality of life.
It is a possibility that the dr u saw is not a chiari specialist and u may want a second opinion by one.
For shedding some light to help me to better understand.
When I seen my gp about the results, he told me t hat I had a tumor...with no explanation at all,,but the reason I"d went to him in the1st place was just for a refill of meds.I have to book an appt. for followup on the test results, in order for him to take t he time..thats just how he works,,, dah! But, all in all its not nice to tell your patient they have a tumor to begin with.
Funny thing,,,,about my symptoms.... I always write down my symptoms for drs., cause I forget so easy....anyways, the Neurologist told me to put away the list I had just started to read.. He said " I want to hear it from your mouth|"....I had taken my daughter with me,to show her how cruel he was,,,she could not believe how he treated me...I don't like him one bit..so I will be going to for a second opinion. I can't take this pain I get up the back of my skull,,my shoulder, then this certain spot on my rt. arm,,with tingles.
I know something is very different,,, a diff pain then my fibro pains.
Is there a med a person can take for this? Most likely a pain med eh?
I have an appt. to go see my gp on Saturday afternoon..sure hope he can help out somehow...
I seen your pic of your incision,,, and wow! what a big one it is! I hope you're doing ok now dear 'selma'...our little angel in disguise..... What you do here for others is awesome,,,and I thankyou from the bottom of my heart...... Jen/
Well thanks again, but I feel we r each others angels here....I got sooooo much from the members here when I first came to the site...just passing it forward so to speak : )
Yeah,my incision was big bcuz they harvested skin from under my scalp for my patch.....so that is Y it is so long.
It is so sad that drs do not understand what their patients need from them besides their
medical knowledge and experience....bedside manor helps us feel confident in them much more than the paper they hang on their walls.....
Ur PCP should be able to set u up with a pain management dr.....anti inflammatory foods can be helpful as well as avoiding certain activities that can be triggers for our pains.
We got to go see Dr Bejjani today and your forum is so right! He was the best. He went over every mri and catscan our son has had. 2 years ago, our son had a 4mm Chiari, 3 months ago 5mm Chiari, and most recently now, 7mm Chiari. He does not do surgery on children, so he is contacting a pediatric neurosurgeon who he recommends tomorrow, and said he feels our son should have surgery due to the progression and all the other symptoms. Finally I know we are not nuts and that is thanks for all of your help and Dr Bejjani!! I also would HIGHLY recommend him to anyone that has symptoms, yet been told its impossible to be related to the Chiari! Our 6 year old.......almost 7, acts like he is 2. Sadly, he will always be developmentally delayed, but.. at least with the surgery, he has a chance of regaining his hearing, vision, and getting rid of his rage fits! Thank you again!
I hadn't seen these posts here before, and have been sitting here reading them all. It's amazing how insencitive some Dr's are. I also saw a Neurologist who didn't believe my chiari had anything to do with my symptoms, he also did something i've never seen before, before he did any testing he did all his paper work on his computer I sat there for over an hour like a dummy, everytime i asked a question he's reply "i don't know", he printed the letter to be forwarded to my pcp before did checked me out, amazing, so glad I went and saw a chiari specialist, at first we had decided to keep an eye on it and if I got worst then we'd consider the surgery, but in less then a week after my appointment all bets were off, my symptoms were so bad, having the surgery in 3 days. Having the craniectomy, leminectomy and then the grapht of the dura. He said that if I skip any of these during the surgery then I might have to go back and get it redone, rather have one surgery and hope all symptoms go away. My symptoms also didn't start until a car accident but reached it's peak when I was seeing a chiropractor for neck manipulations. I just saw a lot of people here mention not finding the right words, i've been doing this alot lately, mean to say something but something else comes out.
I have been diagnosed with 7mm Chiari. I have only had a CT and an MRI scan which led to this diagnosis. I have all the symptoms but mainly my memory is HORRIBLE, headaches, apnea.. spots in vision.. I also have curved posture that someone had mentioned could be connected. I need to find someone close to St. Louis Missouri.. we dont have the funds to travel far, although I wish I could go to CO! Could you help me?
Here is the link for the thread for the specialists that members here have been to...many of the chiari specialists have a location close to the offices and hospital they work out of for a means for patients and their families to stay at a more affordable price....plus, if u look at the thread for links there is a non profit org Angel Flights that will fly u to and from appointments and for surgery.
Hey, I am in Belgium too. I will be seeing a NS in Leuven on the 8th of March. I do not know the extent of his expertise with Chiari's yet. If he does, I will ask him if deals with pediatric cases or if he knows someone who does. I am in the same boat you are in except it is for myself and I am an adult. We might have to go back to America. There is some clinic in Spain, but I really don't know about that. I am not too happy with the Belgian physicians I have seen already. The Malformation was found by incident on a cervical MRI and my family physician didn't mention anything about it to me; I asked for the report and saw it for myself along with the images.
I have two daughters ages 6 and 10 who both have chiari type one malformation one has a 7mm and the other a 3mm. I hate whwne the doctors tell you the symptoms are from something else, that has happened to both of me daughters all the time. But yet they can never find anything wrong with them. It is very frustraighting and I have just kept on pushing the doctors untill something is done.
I live in a small town between Houston and Galveston, Texas. What gets me is my daughters are adopted and there is a doctor in Houston that specializes in Chiari Malformation and is even doing reaserch on children, but he dosen't take my insurance. It seems like the person that may hold many answers for me I cannot have my daughters seen by. Do you know of any good doctors in Houst or Galveston, Texas.
We do have a list of chiari specialists, but u also need a pediatric chiari specialist....not sure if the drs on the list r for peds or take ur insurance....u will have to research....and u may have to travel.
Also u may want to appeal ur insurance to cover the one u know about as there r none near u.....it may help to be able to see the dr.
I have had the same problems since both of my daughters where diagnosied. It seems like everything I read, reaserch and hear from other people and read online, it seems to be a common problem that the doctors always tell us it has nothing to do with the chiari it self. I have come to be a fighter for answers and for my children. I always tell the doctor what I have read, let them know where it is so they can educate themselves. It is a very common problem amung doctor who are not well educated about chiari malformation to tell us things like that. So you have to be your chid's advocate and fight for them.
Can chiari symptons come and go? My 16 year old son has had problems off and for about 4 years. Started out with dizzy spells, ataxia (loss his ability to walk unassisted), vision problems (double vision, couldn't read) and headaches. Lasted about 5 months. Seemed okay for awhile. Then started getting abdominal pain and a headache that lasted for over 2 1/2 months. That is when they told us about a "borderline chiari of 5mm". Neurologist told us it was a migraine and his symptoms did not fit chiari. Did okay for awhile and now again a headache (migraine behind the eyes), gets "hot" even when it is cold outside and headache is worse when coughing. This headache has been going on for about 6 weeks now. We are seeing an allergist and a new neurologist next week (not a chiari specialist). Dr. Oro is about 2 hours from here. Thinking that may be the way to go next. I just don't know quite what to do.
Yes, chiari symptoms can and do cycle....come and go...can be tolerable and all of a sudden get worse.....
U want to know if he has a CSF blockage and overcrowding this is more important that the size of the herniation. Dr Oro is a really good dr, but I believe he only sees adults so depending on the age that he considers an adult...so do call and inquire and if they will not bcuz of age ask for a referral.
We r happy to have u join our little family here, so sorry for the reason u had to seek us out.
Trying to find out information about the accuracy of CT scans in finding chiaris. I have had two CT scans over past three years that said I have a possible chiari. Mri diagnosis was no but with increasing symptoms I am wondering if I am a chair zero. I don't understand why CT says possible and Mri says no- what is the major distinguishable differences. Thanks for any input.
The problem may be the person reading the films...and the slices taken, and the background knowledge of chiari of the radiologist....
Ask for copies of the MRI's and the reports and take them to a chiari specialist to get a more definitive answer.
Once u have a MRI of the brain w/wo contrast, they will also do one of the cervical spine, thoracic and lumbar....this will help rule out other chiari related conditions.
Let us know where u live to see if our thread may be beneficial to u...it is a place to start looking for drs names to research.
Hi I am 17 and was just diagnosed with ACM in May. I have had viral menengitus twice in the past 5 years and would had severe migraines when I had viral menengitus. I have a headache almost every day. Sometimes it is in the form of a dull annoying headache, some days a migraine, and the days I don't have a headache I get a short few minute headache but it is the worst pain I've ever experienced. I've been seeing the neurologist since March. She put me on Topimax, I lost over 20 pounds and was down to double digit numbers. When I went back to her in July she took me off the medicine and put me on something else. My chiari is currently at 6mm and she said it is not emergency until 7mm. However, she refered me to a neurosurgeon and I have my first visit in a week. I am very nervous that he will tell me the same thing my neurologist did and I will not have surgery and have to go off to college, as I am currently a senior, and live with these awful headaches.
I have a 15 year old daughter that has had severe pain in head and neck since a car accident 7 years ago. She has been diagnosed with chiari I and has seen many many drs. She has so many of the the symptoms that are listed from chiari. She is in pain almost always and misses more school then she goes. She wakes up and cant get her legs out of bed. She tells them to move but the dont. When she does get up she is so dizzy she cant stand or walk. She has tried so many medicinces and nothing helps with the pain. Any suggestions. She is so fusterated. Someone help with advise. I think I need to find a chiari specialist in arizona. Her ns is great but neuro dr just wants to cover the pain but not fix anything.
Hi, I was wondering if anyone knows of a Chiari specialist near Birmingham, AL? I have also been having problems and major pain for years. My MRI says low tonsils, but no one will tell me how many mm. Neuros don't seem too concerned.
We do have a list of drs, u do have to research the drs on the list....it is not meant as a referral, just a means to help u get started...that said, we do have a dr in the area u asked about and I have heard good things about him, but still do research to find if he is right for u!!!
Dr. Jerry Oakes
The size of the herniation is not the biggest concern, if u have a CSF obstruction and over crowding is more of an issue as well as ur symptoms.
The reason the neuro's do not seem concerned is they may not be well educated on chiari...true chiari specialists do their own research...other Drs get old out dated info in med school.....
I am in my sixties and had Chiari surgery in 2003 .
Recently moved to a small community near Houston. Does anyone have the name of a doctor here that is WELL versed on Chiari. Tired of going to doctors that don't know anything.
What other issues have u been having, symptoms along with a CSF obstruction and overcrowding is more important than the length of the herniation...yes, the herniation can be a problem, but it is usually bcuz of the width not the length.
SO ur symptoms r important as to what they r and how they are affecting u.
There are more tests that u should have....a brain MRI w/wo contrast, cervical spine, thoracic and lumbar spine MRI's...they need to rule out a syrinx which can be found newhere in the spine, some Drs only check the cervical spine. U also want to find out if u have overcrowding and a CSF obstruction, Disk issues, sleep apnea, tethered cord, ehlers-danlos, ICP.....
Finding a true chiari specialist to help guide u, is what I would suggest...not all NL and NS's are educated or experienced with how chiari affects us.
We do have a list of the members drs, the list is not a referral, but a means for u to start ur research for the right dr for u.
I just had an MRI of my c spine due to rapid eye movement, eye twitching, severe headaches, panick/anxiety attacks and fainting spells my MRI said that my cerebella tonsils were low that they weren't quite 5mm but we exactly 4.5mm my Dr. said that it was not a big deal that none of the symptoms i was having had nothing to do with that I had no idea about chiari till I asked for acopy of my MRI findings I ask to see a specialist but my Dr says that it is a normal malformation but I'm in constant pain I dnt know if it has anything to do with chiaroscuro but I can't ever find my thongs even if I just set it down I'm in so pain and feel like my head is going to mush do you have any advise for me
I live in Missouri and upon researching chose Dr Oro in Aurora Co.. The airplane ticket is usually around 100.00 if purchased a few weeks out. I do not believe you will find a chiari expert here as I did not. A plane ride is worth it considering the type of care we need. Check him out on the web:)
We do have a list of the members Drs for ur use to research Drs, there may not be ne listed in that area, but it does not mean there may not be a well informed Dr there ,....we r just not aware of it as yet.
Please use our list as a means to get ur research started, not a referral.
My daughter is 19 and has suffered from headaches for years, since elementary school. At that time they weren't severe, but within the last few years they have become Migraines, with ringing in ears, vision issues, numbness and tingling of her hands, dizziness and nausea. The first time we saw a doctor they said it could be her intake of caffeine, taking too much ibuprofen (which she took because of the headaches) or possibly allergies. Well after continual headaches they finally did an MRI. She has now been diagnosed with Chiari 1 with 4mm herniation. The Neurologist prescribed her Nortriptyline to be taken daily, which she's been on for 3 months, but continues to have the Migraines. Now the physician is recommending Topamax. After reading the side effects I don't know if I want her taking this. Has anyone else been recommended these meds and if so what were your results? Any other meds recommended for others that seemed to work. I think I'll be looking into taking her to Dr. Frim in Chicago or Dr. Todd Alexander since we're in that area. Any thoughts?
Getting ut DD to a chiari specialist is the best way to go, and Dr Frim is a good chiari Dr, but I believe he only works with pediatrics....I could be wrong so do call and ask.
Topamax is a med I am currently on, and it is awful the first 2 weeks until u adjust, but I am post op...I was on many meds b4 surgery and nothing touched the pain I had ....
Many Drs may not take her herniation seriously as most need to see a 5mm herniation or larger for them to feel it could cause symptoms.....
I am here to tell u it is not the size or length of the herniation but the width, which they do not measure, that can cause the obstruction of CSF flow....
Ask about a CINE MRI, and MRI's of her thoracic, and lumbar spine rule out all related conditions, and know that surgery is not a cure or fix, and that with surgery there r risks, and it is possible to feel worse post op......
Take ur time and research Drs and all that goes with it and make sure she is tested for all related conditions b4 u decide on nething.
I am 40 now and I had my first brain surgery about 5 years ago. Now I went for my second bran surgery and surgery is the only option to have to get rid of these symptoms. I suggest that you see your family doctor and he/she will refer you to see a Neurologist on wherever you are located near. It taks longer to recovery from the first surgery and kids are too young to get this and I have been diagnosiseed with this conidtion in 2007 before I went into surgery... It's only comfortable and sore when you have staples or clips in, but it feels good when it's been removed. You'll have to suffered without pain medications and let it take its course to heal. I was born with condition, but never caught it until five years ago in my late adulthood.
i am a 20 year old female that was dx with chiari 1 malformation two weeks ago. the neurosurgeon told me i have a 6mm herniation and that its mild and nothing to worry about. there is a problem, i have been in constant pain for over 2 years now. i am in college and its getting harder to be in school and concentrate. i been having memory loss, SEVERE headaches (every day), numbness and tingling in my right side. tremors and my balance is deteriorating. these do not seem "remarkable" ( his words) enough to do anything about. im beyond frustrated, i will be applying to medical school soon and the rate im going there is no way o can live my life feeling this helpless. i know wanting brain surgery is not a normal thing but i have tried every medication they could think of. they have given me anti-depressants, muscle relaxants, everything and im the same way. Help
First the surgery is not always the answer, u r at the beginning of testing and need more...next is the CINE MRI to see if u have a CSF obstruction, this many times is the cause of the symptoms u r dealing with, Med schools do not prepare Drs on how this affects us, and they all use their own opinion as to what is mild, and when they use terms like that they r referring to the size of herniation, not how u r feeling...so it is very frustrating.
U also need a true chiari specialist, one that is well experienced and informed on how chiari can and does affect us no matter the size of the herniation,
Plus, u do have to look to all related conditions and issues as they play a big role in how u feel and if u have surgery how u heal post op.
Do use the list of Drs we have posted to research Drs to find the right one for u. Know that u r not alone in this bumpy and very frustrating journey. : )
Sounds like you know what your talking about. Unfortunatley I don't. My son is 6yrs. and has had headaches for about 2 months. Had MRI got report:Prominent downward displacement of the Cerebellar tonsils below the foramen magnum consistant with Chari I Malformation. The Cerebellar tonsil are inferiorly displaced be as much as 15mm and syrinx is identified. We are seeing neurosurgeon on Wednesday. I have know idea what to expect. Worried... Is surgery a possibility? What questions to ask?
I was afraid that surgery could be a possiblity. we are seeing the chief of pediatric neuro surgey. I haven't looked up what the surgery details but I will. We tried to keep an open mind about this but I had to get the MRI file to take with us and looked at the report. I do have some medical back ground and could tell with the wording that it may not be just an incidental finding. I just don't want to be caught off guard. One more question is the syrnx always present or does it come and go? he has always been my healthy little baseball player. I just want him to be able to return to what he loves with no complications.
Keep in mind a good NS is not always the best choice, u want a NS that specializes in Chiari...not a NS that does a few chiari surgeries...it does make a huge difference.
Sorry, with Chiari it is life altering, and physical things life football, baseball and soccer may be too much for those with this condition, and best to find something else...surgery is not a fix or a cure, if the Dr says it is run the other way.
A syrinx once formed is there and may continue to grow and cause more disruptions, if left untreated for too long a syrinx can cause perm nerve damage.
Having the surgery should allow the syrinx to shrink....some may shrink faster then others, some may shrink only to return later.....
I understand ur concerns and what u want ur child to experience but, I am sure he has had pain while playing and thinks it is "normal".....
I pray all goes well and u get the answers u need.
Sorry to hear of your little man. I have a7 year old boy, and it would break my heart to know he was strugling with this. You have the best answers from Selma. as she is our mother hen that knows all ....I don;t mean that sarecastically either. I can't make you feel better excpet to say, we know how this goes and how hard it can be, but Selma is right, seeing achiari specialist is key,. My NS is a pediaatric NS that specializes in Chiari malformations so if you have it, whether adult or child...he will treat you. I am not sure where you are located but he is an amazing and understanding, and compassionate NS....and that is rare to find. Most of them are prettty cut and dry. Agfain, sorry for the reason you are here, but happy to welcome you and your little man to our community :)
Thank you for your support. I'm now realizing what can be in store for us. Its so wierd because right now he seems just fine. Since the MRI and the Dr. put him on antibiotics for a sinus infect. he seems so much better. However a few here and there headaches but not like before. Its almost a false since that everything is fine and there is no problem. That's why its hard to wrap my head around this but i just don't want to caught off guard with what the dr. may say on Wednesday. i don't want to break down crying. depending on what he says sugery no surgery problem no problem I want to be prepared regardless. However, I am scared because what of what i am learning. I don't want to be one of those people that get on the internet and look things up to invite worry in to my life. You know the saying that to much education can be a henderance. talk to your dr first before you start worring. you know some people tell you not even to look stuff up because you will always get the worse case secnerios. then you will be worring for nothing. I just think learning everything is good but keep in mind that your dr will know whats best for your case.
Hi .I understand where you are coming from with the too much knowledge thing, however....not in the case of CHIARI. All TOO MANT DR'S pretend and give you the idea that they are well informed on it, when in fact they are not. I tell you this from experience. I saw a NS who originally gave me the false idea that he was well informed, and I was so anxious to go with my DH and father to show them who I found...only to find out he really knew alot less than myself. Wow...and that was at my surgery consult. Everyone here told me to beware and to learn as much as possible because with chiari you have to be your own advocate, or your childs in this case. It really is sad the amount of Dr s (NS's) who will tell you that your child needs surgery just for the money of it. What I am trying to say is you can't learn too much with Chiari and it's related conditions and a specialist is so important and really makes a world of difference, especially with a child. You need to be educated so much because that is the only way you will know if the NS really knows his stuff. Any NS can perform the surgery, but the level of knowledhe required to truely treat someone with it is extensive. In my case....my MRI did not show that my tonsils were actually wrapped around my brainstem, making my surgery even more risky than a normal PFD. Because I saw a specialist and didn't rush , thanks to the advice from people here....my NS was able to handle this complication....which was a huge one !!! Just make sure and learn as much as possible...and don't put off his symptoms as no big deal.I am sure you only have his best interest at heart, he is your son. So many of us learn much later in life that things we thought were normal like our head rushing pain from bending over was normal. Because we had never known any diffferent. When I found out I had chiari and started to do the research I couldn't believe that I had lived my whole life with symptoms and didn't know because you thinks it is normal as a child. Ask as many questions as you can, and make sure the NS spends time with you. A great NS, is one who will take their time ...even if the appt. runs 45 minutes to an hour. My first appt with my NS was at least 45 minutes and he event took the time to explain to my kids one by one in their own age range what was going on and what the surgery was and what it would do. Best wishes to you and your son, and please remember that in this case you MUST learn and have knowledge.
Rahe is right, and I don't think you'd find anyone here who would say too much education is a hindrance. Maybe 20 yr from now, recognition & treatment of Chiari will be much better than now, but who has time to wait? This is why it's emphasized over & over to get a true Chiari specialist.
I went to the head of the NS dept at my state's major teaching hospital, and he told me that I didn't have a Chiari malformation, and that my 20+ symptoms were "no big deal". (they were to me!). Fortunately I already had a great NS that I trusted, otherwise I'd still be suffering.
If you can't handle TMI, maybe you can find an advocate who can help you sort through it all? I know it's particularly difficult not to worry when it's your own child. My DD is a pediatric NP, and she says that kids make the best patients--they don't worry!
hey thanks. everything you said i agree. I checked on this site about the NS we have been sent to and he is considered a specialist in Chiari. He was on the list. Jerry Oakes at UAB in Birmingham. That is why I'm here. To get as much info as possible. I have a friend that went on a forum regarding her daughters diag. of something completly different and got alot out of it personaly, emotionaly and knowledge. Since you don't hear alot about this diag. I felt I needed to talk to people who know about and could give good advice as well as an out let where others may not understand your feelings. Thank you to all who have responded. I am not afraid of knowledge just scared of the unknown.
A word of caution, not all on our list r true Chiari specialists, but have successfully treated it...please use the list we post to research Drs do not assume they r all specialists as the list is not posted as a referral.
I do know that Drs name, and have heard good things in the past, but educate urself and see if this is a good fit for u and ur DS.
I know he is I just wanted to make sure about ur statement he was on the list, and I know the list has the statement that not all may be true specialists, and I did not want someone reading this to take that away....
It is so important to research the drs, meet a few and compare those of the same caliber as finding the right dr id key.
I had ct scan (w and wo contrast), for headaches and double vision and dizziness and probs with balance. I have occasionally experienced little problems with fine motor skills, high pitch ringing in ears, and a few other symptoms that may or may not be related. My doctor said she doesnt know anything about chiari I (which is what ct report said was probleme. Report also recommends mri.) My question is this: I dont have insurance (to speak of... It ONLY covers office visits and some lab work) Is this a condition that I can ignore? I cant afford treatment (currrently unemployed and therefore no real insurance). I had to scrape and scrounge just to get the ct scan, because that isnt covered either. SO is this really something I can not worry about. I did go to doc because of dizziness and balance issues.
Until u have further testing there is no way to say u can post pone treatment...I deff would have the testing to see just how ur Chiari is affecting ur overall health...so u have a CSF obstruction etc.....
If ins is an issue look into the clinical trials....we do have a link, just use the search this community to find other threads on the topic.
I have a chiari and my son was just diagnosed with one last week. Both are 5mm. Our doctor doesn't believe they cause real issies, but we both suffer terribly. I would like help findjng a specialist in bay area California if anyone has resources. Tha ks so much. My quality of life is crap and I feel really alone. Gia
I am so sorry both u and ur DS have to deal with these issues....
It is diff to locate Chiari specialists near home and some may have to travel to get to one...we do have a list of Drs that members here have been to and liked, it does not mean all Drs on the list r true Chiari specialists u need to research all the Drs on the list as it is also not meant as a referral.
Please feel free to share some of ur symptoms with us as we can share what we did to help with them...and know u r not alone : )
Hi. My son's Chiari Type 1 is 7mm. His symptoms started 12 years ago at age 13, but no one would listen. He had dizziness, vision problems that have gotten progressively worse...blind spots, flashing, and now balance issues that doctors attribute to silent migraines. We have been to several optho and neural opthomologists. I suggested we go to a neurologist, who diagnosed the Chiari. They are all in lala land. No one suggested anything, and we are talking Stanford!!!! They all said his eyes were fine, but suggested nothing,... didn't even say that may be he should see a nuerologist,...and I can see time is of the essence. Does anyone know of a doctor in Northern California? They all seem to be in the mid-west or east coast. No one really seems to understand the whole gamut of symptoms except the people suffering. How many people have it. Wjere did this Dr. Di of the Cleveland Clinic go?
I know, it does not matter how BIG the name of the hospital if they r not doing research in Chiari they will not be of help to u....and too many fall for the BIG name thinking that is the best place to go, and usually it is not.
It is like u have a foreign car with transmission issues...do u go to a well know chain that does repairs, or to the local mechanic that specializes in foreign transmissions?
We do have a list of Drs in the Health Pages and also listed here as a thread.....the list may not all be true chiari specialists, but it is a place to start with ur research.,....and be advised u may have to travel to get to one as u may not find one close to home....and it is well worth it to travel then continue with Drs that do not have a clue.
Dr Di left for "health" reasons...or so I read somewhere, I am not really sure of what really happened as so many stories went around, but suffice it to say he is no longer practicing.... There r other Drs at CC, and inbtwn Ohio and CA....there is a Dr Frim in Chicago, and Dr Menzes in Iowa, and Dr Oro in CO, -http://www.medhelp.org/health_pages/Neurological-Disorders/DOCTORS-LIST-FOR-CHIARI-SYRINGOMYELIA/show/1062?cid=186
Be advised this list is not a referral, just a means to help u research Drs.
Hi Everyone! I have a syrinx at T2-T7 that causes joint pain sensitive skin...(sunburn like )headaches and a lot of other symptoms. My neurologist suggested I get a cream that was originally designed to treat a lady who had a tumor in her face and when she had it removed she suffered from severe nerve pain that was unbearable. The cream has an agent in it that makes it quickly go deep into the tissue and gives lasting relief. You apply it 2 times a day and it has made a remarkable difference in my quality of life. Bobby Orr the hockey player endorsed it and from what I heard help fund the research for it. Their are a variety of types LivRelief for pain LiveRelief for nerve pain etc. if you guys are like me I figured I'll try anything !!!!!! once. I was amazed at the results. I hope this will help some of you get by day to day as it has me. LivRelief is sold at shoppers drug mart and quite a few other mainstream drug stores. Good luck everyone Capebretongal
So I too have been doing loads of research. In 2011 by accident when I had MRI for shoulder and neck, it was found I have Chiari 1 as well cerabellum tonsils 4mm-7mm. I was only told needed surgery for the tear never heard mention of Chiari. 1 mth ago went to a new MD for headaches, she read MRI told me what it said, sent me to NS, he ordered new MRI, went in today was told I have "borderline Chiari, wants me to come back to see his partner associate for 2nd opinion as he believes I could go w/out surgery. My syptoms since I was 14, (now 43) daily, chronic headaches, never a cold always right to phenomia,many migraines (keep Imitrex with me) bad neck pain, arms and legs always numb, horrible sleep apnea. Went to Chiropractors, allergists, pain clinics, you name it. Any one know of a DR that is in Michigan ( I live between Grand rapids and Lansing). I know ME and know there is more going on and want a chance at a better life and to get off all these various pain meds.
Not all of us will have a Dr well experienced in Chiari close to home....
We do have a list of Drs other members here have been to and liked it is here for u to use as a tool to research them, it is NOT a referral or endorsement.
Please find the list in the health Pages- http://www.medhelp.org/health_pages/list?cid=186
The DX of borderline Chiari is just hogwash, as u said u know U and u know u do not feel right....keep pushing to get answers and getting the right Dr is key.
I know this might be late but just in case it's not and you are still looking or to help anyone else, there is a wonderful Neurosurgeon Dr in Springfield Missouri who treats and specializes in Chiari. His name is Dr Sami Khoshyomn
I got an MRI in 2008 that showed I was born with Arnold Chiari Malformation 1. Since 1994 my doctors simply believed I had a pinched nerve (tingling/numbess in right hand). I was going to have surgery but lost my job in 2009 and haven't had health insurance since. Lately, it seems the numbness has gotten worse. I've woken up sometimes to discover that my hand is numb to the point of being unresponsive. Sometimes it takes a few minutes of "willing" my hand to move in order for my feeling and dexterity to return. Has anyone experienced anything like this?
I forgot to mention that there is a well respected Dr in the Baltimore, MD area that does clinical studies and will do testing and surgery at no cost to u again if u qualify for the the current study going on.....
We do have an older thread with a link to check what they are looking for in the next study.
My son is 37yr old and has just been diagnosed with Chiari 1 with a tail of 4.6cm.He has all the classical symptoms and is getting worse. The neurosurgeon here has done mostly children and teenagers. He is willing to do the surgery but he has not done adults. We are looking for someone in Oregon area that has done allot of Chiari 1 surgeries for adults. Does anyone have any idea who?
No, they did an MRI and found it when he went to the hospital ER for passing out and headache with high b/p and very low heart rate.
Since then he has seen neurologist , did EEG, and now a neurosurgeon.
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