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11950437 tn?1422342490

How do you handle a new diagnosis and the on and off pain in your head?

I recently had an MRI done on my head. These are the exact words that came to my inbox from my primary doctor, "Overall the MRI was good. There was something called Chiari Malformation, where part of the brain extends downward. This may be of no concern, but I would like you to see neurologist. Please call the office in 2-3 business days for the referral." Of course I am scared now but I know the next step is to get a referral to a neurologist and go from there. I've been having a pain in the back of my neck and part of the front of my head, so I've been trying to take it easy. Could anyone give me some advice on how to handle this new diagnosis and the on and off pain in your head? Thanks for any information!
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246139 tn?1424371973
I got distracted and forgot the rest of my comments.

I use a heating pad most often on the back of my head and neck. Lots of people like flexible ice packs, but I am allergic to ice.....LOL - no not really but I hate it. I hate being cold.

I also have a soft collar that I use when things are really bad and I have to find that sweet spot position where my head and neck are comfortable. They can be bought at a local drug store or medical supply company.

Find a good pillow that has all the right support in all the right places. I have yet to do this. Been searching for years. Right now I use a memory foam type pillow for my head, and then bunch half of my comforter up around my head, neck, and under my chin to keep my head in the proper position to sleep. I look completely ridiculous when I'm in bed.

Sleeping elevated might help if you have high pressure in your head. I have crainocervical instability as well as Chiari and find that I have to lay as flat as possible though, most of the time. There are only a few occasions where I just have to sit up. I don't get a lot of sleep if you can't tell. LOL

I find that - simply not moving my head makes me feel the best. My life is pitiful in that I have been reduced to a sedentary lifestyle.

Also, there is no cure for this. Surgery can help alleviate many symptoms, but is not always successful. I have not had my surgery yet but I was scheduled. My insurance is being a hag. My decision for surgery was due to my quality of life being horrible and my kids  calling me boring. LOL.

If you do not feel surgery is necessary, trying to find medications or exercises, and life style changes to reduce headache and pain is your best bet - though it can be hard to do. However, your first priority is to get that full spine MRI.
Helpful - 0
246139 tn?1424371973
Hi,
I would check out the list of doctors that specialize in Chiari. I agree with everyone else. Typically, a neurologist, general physician, and neurosurgeons are not up to date on the current diagnostic criteria and testing needed for Chiari. The evidence for symptomatic adult Chiari is very new, and not yet common knowledge among the general physician and radiologist community. Neurologist are among the first to usually say that the Chiari is of no significance. I hope the one you see has currently studied Chiari. It would be very helpful, but not likely.

I haven't found any medication that has really helped me. Massage has been the most helpful when symptoms are so bad that my neck, shoulder, and back muscles start to get tense. And when that happens, its a vicious cycle. It can make the headaches so much worse.

I think you should also really push for a FULL SPINE MRI and see if you can get a CINE MRI ordered. The size of you herniation does not matter. If your doctor says that your herniation is not big enough and will not order your tests, then you really need to find another doctor. There are people who have small herniations, but still develop a syrinx in their spinal cord. There are also other disorders that tend to play along with Chiari, so to speak, and cause a lot of confusion with diagnoses. Specifically look into ehlers-danlos.

Check out csfino.org and do a lot of research on Chiari before your appointments. This is VERY important. I don't know how I can stress enough that you can not expect the general physician population to know accurate details about Chiari. You will be able to pick up quickly when the physician starts talking to you about symptoms and treatment and will know if he has current information.

I am currently seeing Dr. B in New York for my Chiari. He is 8 hours away from me and is one of the few doctors in the USA who treat my combination of disorders.
Helpful - 0
9432311 tn?1432825085
Also, with seasonal colds, coughing will surely exacerbate any head pain that you have. I currently have a cough due to a cold and my October suggested Delsyn (over the counter cough suppressant), as well as drinking tea with honey. Other than avoiding coughing, try to get enough rest/sleep as headaches are so much worse when you are sleep deprived. I hope you find some relief.
Helpful - 0
620923 tn?1452915648
COMMUNITY LEADER

  Hi and welcome to the Chiari forum.

Everyone DX'd with Chiari may not be a surgical candidate, but a NS is whom you need to see once you have a DX .....it seems only NS's tend to focus on Chiari and be the specialists that understand it.....keeping in mind not all NS's are true Chiari specialists so do use our list of Drs to research them. Being in NY you are close to at least 2 of the top places to go.....TCI and Dr B.....

A true Chiari specialist will look for related conditions like Syrringomyeila (syrinx) and a MRI of each area of the spine is required since these can form any where in the spine....they are formed when there is an obstruction to CSF flow....surgery is done to restore flow and help slow progression of the syrinx (cyst that fills with the CSF fluid) with hopes the syrinx will either not form, or if already there not grow larger and possibly shrink.

AS I said there are several related conditions like ICP, POTS, Sleep apnea CCi, and Ehlers-Danlos....all of which can have an effect on how you recover should you be deemed a surgical candidate.

The pain in your head is due to many things....so we are told to avoid lifting our arms higher then shoulder height,no bending, lifting, pulling, or pushing....and no straining....as these can trigger the symptoms to flare. Weather can also cause the flare of symptoms....so try to relax....do not over do it (your body will let you know with pain).....

Next is know you are not alone....
Helpful - 0
Avatar universal
Hey there, I don't mean to worry you but it can be an issue so I would follow up with a NS ( nerosurgeon) or N quickly. They one time something like this needs a surgery, which can be fixed with surgery, is when you have a synrix which is for lack of a better explanation a bubble in your spinal cord. When I had my MRI my dr called me an hour after my MRI and said hey I'm you need brain surgery your scheduled this week to see him. So the urgency was there. Everyone on here has had all different experiences but my best advice is do your homework on a NS it could mean the difference between only have one surgery and having many
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