Hi Cathie and welcome to the Chiari forum.
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.
Hi and welcome to the Chiari forum.
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
Hi and welcome to the Chiari Forum.
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.
HEY CAN U GIVE ME A LIST OF DRS THAT R IN THE GRANITE CITY ILLINOIS AREA.
Sorry I do not have a list for Ill..or do I know about these drs, please research all drs b4 u go.
I will look and see who is posted, but again research them.
Dr. Merle Diamond, Diamond Headache Clinic Chicago, Illinois
Dr. George R. Cybulski
Wesley Pavilion Ste 930
250 E. Superior Street
Chicago, IL 60611
do mri lie or r they telling the truth do u kkow any dr in missouri that handle chairi
hello can u tell me if mri has ever lied about a condition
An MRI can not lie...however, depending on the strength of the machine and the slice/angle taken u can end up with diff "results".
I am not aware of a chiari Dr in Misouri, but will look at our list for u....all drs should be researched by ueself and be prepared to travel...we do not all have the chiari drs near us.
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.
HI Lea and welcome to the chiari forum.
Glad u r here, but not the reason that brought u.
We do have a series of Health Pages here on MedHelp....on the second page u will find one titled anti inflammitory foods.....
that along with things like tylenol to help reduce inflammation is about all u can do for chiari pain...not too many meds touch it.
Many also can /do have migraines in addition to the chiari HA's.
Make sure the dr is a true chiari specialist...many drs do not recognize chiari or that it can causse symptoms.
I hope we r able to help u find answers and support u in the way u need.
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.
Dr Bejjani is in Pittsburgh, PA.....I know several that have gone to him. I did hear him speak at a conference and was impressed.
I do not have first hand knowledge, but I do know he is considered a chiari specialist.
I believe his info may be on our chiari specialist thread or Health page of drs.
If u need ne help navigating please let me know .
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 so sorry ur daughter has this condition.
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 hope this is helpful
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! :)
Hi and welcome to the Chiari forum.
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 : )
Dr Bejjani does except our insurance! He is seeing my little one next week!! :-) I am so glad. Thanks for all of your help!