I say 'diagnosed' but the neurologist didn't act like it was a big deal to have this. Admittedly, maybe my case is minor (3.6mm), but the headaches are very REAL and have altered my lifestyle and abilities.
I started getting daily headaches on December 2,2013. This was new and confusing because these were different type of headache that I have ever gotten, and I really was not one to have a headache EVERY SINGLE DAY. At first I thought it was sinus related, but a CT scan of the sinuses came back negative.
Then the headaches got much worse: pressure in my head all the time but especially when bending over (trying to do housework is just awful...never did I realize just how much I bend over to pick things up!), pressure and pain when going from squatting to standing or sitting to standing, coughing, straining...even at one point talking loud and laughing made my head feel like it could explode! I kind of describe it as the WORST most painful head rush ever experienced....x100. Sometimes even laying down didn't help. I thought I was dying....brain tumor? aneurysm? something horrible.
So I got a second CT scan, this time of brain and arteries. No tumors, aneurysms, or hemorrhages. Praise God! But still had no answers, so I went to a neurologist. He said I had an Arnold Chiari malformation, explained what it was, showed it to me on my scan, and said I was probably born with it and was just now seeing some symptoms.
He started me on Indomethacin (anyone ever tried it?). It's a medicine that supposedly helps exertion type headaches. So I'm trying it to see if it brings me any relief.
Anyway, would love to hear back from anyone! I am glad this group is here. It's helpful to read other people's experiences and advice. :)
MrsN, glad you found us. Glad you got a diagnosis too- it helps to have a name to it, and you can empower yourself with knowledge. Many of us have struggled to get a diagnosis and continue to struggle to get to a true Chiari specialist. A common misconception with medical professionals is that the size of herniation is telling of the “severity” of the Chiari. It is not, size does not matter. A large herniation may be asymptomatic and a small herniation may cause severe, life altering symptoms.
If you want to consider surgery as an option please take the time to find a true Chiari specialist.
There are common themes that come with Chiari as far as related conditions/ diagnosis. Not trying to overwhelm you with this, just want you to be informed.
Vitamin d deficiency
Magnesium deficiency
Ehlers Danlos syndrome- can cause cranial cervical instability. CCI further compresses and damages your spinal cord and has the same symptoms as Chiari. This should absolutely be ruled out. If you have EDS and CCI, get the decompression surgery done, but continue to have the same symptoms or worsening symptoms- a second surgery will be required.
Hi, welcome. I was going to say the same thing. I had to eventually beg a surgeon to measure my herniation because not one of them I met with cared. They knew my condition and knew my symptoms. So the only thing I would like to add to that is that you must find out if you have a syrinx. And again, don’t let any doctor tell you that would be related to how herniated you are. Again, not true. You absolutely need MRIs of your spine to know exactly what you are dealing with. You are dealing with a much more serious issue if indeed there is a syrinx and most of us would say there isn’t much of a choice with surgery either. A syrinx only gets larger and will damage the spinal cord. Best wishes - Tracy Jessica
Hi Mrs N. God bless you. I too was diagnosed about a year ago after an accident and it was shocking to know I had Chiari malformation all my life but the painful symptoms didn’t come out till after the accident (trauma).
You probably want to find a good neurosurgeon with Chiari experience who really understands and cares, not a neurologist. A neurologist will try to medicate you and send you to pain management. Very limited and they wasted my time drugging me.
I agree with the other women it has nothing to do with the size, it has to do with your existing symptoms. The most important thing right now is to try and get a Cine Mri (video of spinal fluid flow) which would determine whether or not you have a blockage of the CSF flow. My pain and symptoms have only gotten worse in the past year and once we did the cine MRI it determined I had a blockage on the right side of my brain to my spine of the csf fluid. This can cause more problems, pressure, pain etc. My neurosurgeon only has me on advil and sometimes Tylenol. Chiari is a “structural” problem and of course good nutrition always helps but if not corrected in the long run we can develop more neurological and physical side effects/damage. We also run a risk of getting a syrinx, which is a pocket or cyst of csf and can cause more complications.
My husband and I have done a lot of research from doctors, to locations, to procedures, attended lectures, you name it. We’ve been waiting on God for his direction. Right now my right arm/side gets numb, I get a lot of spasms throughout my body, tingling, ringing of ears, tightness in throat, muscle weakness, fatigue, forgetful, and the pressure is always there it just depends on the day.
Dont do any chiro work on your neck, dangerous.
Try this organization: www.csfinfo.org
They have a lot of resources. I met the rep in Florida, attended lecture in UM. They’re wonderful.
I pray God leads you in the right direction, you get your answers, have peace and know you’re not alone.
Feel free to call me anytime!!
God bless you. Jozy 561-■■■■■■■■
PS. Most doctors and specialists will minimize or ignore your condition because they are not familiar nor knowledgeable with Chiari. Always ask what they know about it first. In fact, my husband and I kept pointing at the MRIs what is Chiari what is this and no one could give us answers. I went to at least 20 doctors, i left in tears each time and none of them, from neurologists to name it, they could not help me with answers on Chiari until I found a good neurosurgeon who understood and cared.
So sadly, yes to what Jozy said. Educate yourself as much as possible. I sat through countless appointments where the neuro would not only mispronounce words like chiari and syrinx, but they would say things that just didn’t make sense. One neurologist stared at my MRI, mispronounced words and then asked me if I had this “syrinx” in my brain. I mean the guy was that bad, he couldn’t even recognize that there was something large growing in my spine! If I didn’t know better, I wouldn’t know what to believe! You absolutely want to educate yourself as much as you can. It will greatly help in general and with finding a doctor! - Tracy Jessica
I’m so sorry MrsN to hijack your discussion, b ut as for the other post from Jozy (which I only just saw) you really ought to find both a qualified neurologist and neurosurgeon (just my opinion of course). Most neurosurgeons will not treat you unless you make the decision to have surgery. I think you should sort through them, find one you trust, but ultimately you will need a neurologist if you are not getting surgery. Either way, You will eventually need a good neurologist. A surgeon will only treat you for so long after surgery. Some of us really need medication, but it sounds like a bad experience if you, Jozy, felt you didn’t want or need medication and you were not listened to. - Tracy Jessica
Hmm ... perhaps I should have asked more questions when I was diagnosed! Didn't know about the deficiencies!
Being diagnosed did explain away alot of things ... one thing - - why migraine medication was never effective for my headaches after the age of 40!
It's been since November 2011 since my diagnosis - - due to insurance issues (not approving anything) I've not had any surgery and have just learned to deal with the headaches.
Worst part is nobody understands why I can be out of sorts so often (i.e. headaches that I refuse to complain about - - but obviously affect my performance at work). To the best of my knowledge, it's not considered a disability - - so I can't even claim ADA status!
Oh ... as for neurologist - - went to a specialist....referred all pain management back to my local neurologist. Local MD doesn't believe the Chiari malformation can cause frequent headaches, will not prescribe anything - - just wants to do more testing. Really? Almost two years ... and I just get more depressed!
Mrs N., you have come to the right place for lots of advice and help. We have all either been where you are or know someone with Chiari. For me it's my son who was born with Chiari & Syrinx. I will urge you to seek a Neurosurgeon who specializes in Chiari and can run more tests for you and talk with you about options. Good luck!
I can’t really offer any advice as I was only diagnosed on 28th April this year. I can however relate to the symptoms, I’ve had a headache now for 4 weeks I think, norhing is taking it away. My balance and concentration and out of sorts too plus I’ve had permanent tinnitus which is,driving me mad!
You have come to the right place, it’s a friendly helpful place to be x x x
Thank you all for your replies. Can I ask....will my symptoms continue to get worse with time, or is it different with everyone? My husband keeps asking throughout the day if I have a headache, and finally I replied, "honey, I will probably have a headache every day for the rest of my life. " which is sad to think about. Will I ever feel better or normal again?
Mrs.N, as others have said welcome. I was diagnosed last summer after an auto accident triggered symptoms. I can confirm that size has nothing to do with symptoms. Mine is over 13mm yet i have "mild" symptoms compared to most people on here. Even made me feel guilty at first. However, because of two syrinx my neuro and I have agreed to have the surgery this summer. I'm young and my work is slow in the summer so I'd rather just get it done. I did have to see two other neuros, in addition to GP and orthos, before I found one I trust. Best of luck, Sylvia
Mrs N, its hard to say if they will get better or worse. Usually without actually fixing the problem like surgery, symptoms will continue or get worse. My son for instance had symptoms that became worse everyday. He had no other options than surgery or the Chiari and symptoms caused would have killed him. Unless the Chiari is fixed, all other treatments are basically a bandaid. They may help alleviate symptoms but are not a cure all. The surgery isn't even a cure all but at least it attempts to fix the malformation. Some people see great success with surgery and others do not. I am 110% glad he had the surgeries because he now a normal functioning little boy. He has some side effects but they pale in comparison to before surgery complications!
MrsN said:
Thank you all for your replies. Can I ask....will my symptoms continue to get worse with time, or is it different with everyone? My husband keeps asking throughout the day if I have a headache, and finally I replied, "honey, I will probably have a headache every day for the rest of my life. " which is sad to think about. Will I ever feel better or normal again?
I was diagnosed 1 year ago following a car accident. Other than back pain related to my Syrinx, I did not have any other symptoms on a daily bases. I did experience some nausea, headaches intermittently. About 8 weeks ago for no reason known, I developed daily migraines, dizziness and nausea. I went to my neuro surgeon and he advised I have the decompression surgery. I have had no other testing, imaging or interventions besides, MRI's and medication. When and why symptoms flare up, there is no definitive answer unfortunately. Good luck to you :)
Kristy, sounds like we have similar histories. Did you and the doctor talk about conditions getting worse after the surgery? I'm afraid that I"m "lucky" now to just have headaches and occasional nausea and that life after surgery could be worse. Sylvia
It's okay, I understand what everyone is saying. :) Surgery IS a very scary thought. I am just wondering if it's common for this condition and symptoms to get worse, wondering if it's a progressively debilitating condition. I'm sure it's probably different for everyone. I need to do more research.
I will say...this medicine I'm taking does help the exertion-type headaches. They are not completely gone, but I can function throughout my day now.
Thanks for all the replies! It helps to hear everyone's stories. (I need to look up what Syrinx is!)
MrsN, it is my opinion that if Chiari symptoms are active they will not tend to improve overtime, but will either stay the same or tend to increase in severity or new symptoms. I have absolutely had periods of a less severe headache and nausea, don’t get me wrong, some weeks are better than others. I have read that one member experienced a total arrest of their symptoms after changing diet and ridding their household of chemicals and toxins. It also makes sense to me that a persons symptoms could “plateau” if there is no new trauma or a developing syrinx. It’s truly different for each person. I know this is not hard and fast info, but with Chiari we know so little I don’t think there are very many hard and fast rules.
Also, I think that it’s ok for a person to wonder if they are taking a risk with surgery. I can relate, really. I know there is room for improvement as far as my symptoms go, but is it bad enough to take a risk that I may have worse symptoms when all is said and done? The statistics I read online regarding decompression surgery generally say that most people will have “significant improvement or improvement,” some will experience no change, and some will become worse. This is subjective and made even harder to measure because each surgeon has different “success” rates, and there are SO many different ways for the surgery to be performed. Some people have other surgical issues (CCI or spinal stenosis for eg)that are not corrected and cause a perfectly good decompression to “fail.”
Mrs N and Kristy, you have to remember that the Chiari Malformation is a Malformation..it is not meant to be that way. The syrinx is also not meant to be on the spinal cord. You all are having these symptoms because the bottom portion of your brain is not sitting where it should be putting pressure on your head, neck and spinal column. The syrinx is a mass of fluid that has collected on the spinal cord causing pressure. Both of these cause all of your symptoms. The Chiari blocks the flow of CS fluid which then causes the syrinx. Here is a good link which is not too wordy but explains Chiari and Syrinx with pictures. So when you ask yourself why this new symptom or why is it worse, it's because of the malformation and or syrinx compressing many different areas of your body and all the nerves and muscles being compressed or affected by it. It's only natural that it could get worse with time. I know it's scary, believe me I know. I about fell off the chair when I was told about my son. Hope this helps! http://www.mayfieldchiaricenter.com/chiari_surgery.php
Im aware of what causes the symptoms. What I meant was there is no known reason why symptoms flare up after they have been dormant. I apologize if my comment was misleading or confusing to anyone. Have a nice day all :)
We do seem to have similar stories. I have heard of quite a few like ours which is interesting. My neurosurgeon did not mention things getting worse after surgery. He did tell me that in the very best of hands the fossa decompression has a 1/4 failure rate (failure as in symtoms are not alleviated). We can only hope for the best. Also in the case of the syrinx, the surgery will hopefully aid in the draining of the syrinx, but can also prevent it from growing, which is wonderful if you ask me ;) Kristy said:
Toni
Im aware of what causes the symptoms. What I meant was there is no known reason why symptoms flare up after they have been dormant. I apologize if my comment was misleading or confusing to anyone. Have a nice day all :)