Chiari Online Support Group

Being treated for migraines as neurologists says 6mm Chiari isn't a true Chiari

I found out a couple of weeks ago that my neurologist found a 6mm Chiari on my MRI I had done two years ago and it was 6mm. No one bothered to tell me this until the nurse mentioned it over the phone when I was talking to her about how debilitating my headaches are becoming. They did another MRI last week and today the nurse told me the neurologist compared it to my last one and since it’s still 6mm it’s not a true Chiari. What? So I’ve been being treated for migraines for two years now. I’ve tried every triptan, beta blocker, topamax, Botox injections, etc. I have headaches daily. They are behind my eyes, across my forehead, at the back of my head and neck and even in my temples and jaws. They are miserable. I also have dizzy spells where I can just be sitting and I almost pass/black out. I get real shaky for no reason. I get chronic fatigue to where I can’t get out of bed some days and on the days I do get out of bed I have to force myself. I’m only working 12 hours a week and sometimes those hours are from my bed on my laptop. I have an appointment with my neurologist on Wednesday. The nurse said he wants to hospitalize me for a couple of days so I can be put on some type of IV fluids for migraines. That’s not going to help the pain in the back of my head and neck and these dizzy spells. My neurologist won’t even prescribe pain meds. I’m about to lose my mind. Has anyone else had these symptoms with migraines or Chiari or both? What helped relieve your symptoms? Meds? Surgery?

I know it sounds crazy when you're in pain and suffering but if they are offering you a couple of days hospital then I'd be inclined to take it. It is a great opportunity for them to monitor you and see for themselves how your pain is affecting you and if it doesn't respond to the migraine treatment then that in itself will help inform the next stage of your treatment.

Good luck for your appointment.

Migraines are pretty easily distinguished from other types of headaches. For anytype of chiari to be symptomatic is rare. BUT the hospitalization will help sort it out. Without a syrinx and given the size of your "not true chiari" the type of symptoms you are describing probably are something else. BUT its going to take some work to be sure and get some answers hang in there its tough..........

I’d take the few days in hospital but speaking as someone who has both hemiplegic migraine and chiari if the neurologist doesn’t come up with a proactive treatment plan I’d shop around for a different neurologist, it took me years to find a doctor that looked at my history, examined me but most importantly LISTENED to how rotten it was on a daily basis and came up with a plan. You don’t owe your neurologist anything, you’re a human being who lives in constant pain, not a case study. So if he doesn’t make a plan look around for someone that listens to you. I really hope you feel better soon, you deserve a life, remember that if there’s no plan get another opinion. The only way I can describe a bad migraine is my mind goes into a blind panic because the pain is so excruciating that for a second I think I have meningitis again. If you need a chat or you need to vent feel free to mail me. I hope things work out!

I did suffer migraines before my op. Following it they came back with avenges. Mir showed only a paeudomenigocell, so I was referred to a neurologist. Pain is very similar to what u describe, pain behind eye but all over right side of head with different levels of pain, from moderate to excutiating, pain in shoulder and down arm, with a heaviness and the worst part the base of skull pain. I also had r pupil dilation. The neurologist conferees with my neuro surgeon and I had an optic nerve block, started on lmotrogine and indomethoxin for when it’s a t its height. Ask to be referred to. Neurologist for symptom control. I’m far fe better but I am able to get out a little. It’s been a nightmare from finish but I am slowly getting there. Sorry I can’t be anymore positive xx

First I disagree with your doctor and I had a doctor tell me that at 8 mm. One persons symptoms at 6 or 8 may be greater than a persons at 10 mm. Symptoms are important. My neuron doctor does something he calls a cocktail it is a combo of mess while you are closely monitored in the hospital for a few days of morphine, Benadryl and one other sorry can’t remember but after that it completely will stop the cycle of head aches.
The problem is often times your chiari can cause many symptoms that can move you to a migraine then into a cycle of headaches it’s miserable! Unfortunately surgery normally doesn’t cure headaches! I would recommend more opinions about your condion. Keep a log of your symptoms. I also go got massage yo help combat headaches…it’s a lifetime of treatment just to survive honestly. Hang in there…but find a doctor who will listen!

Hi my name is Mel, I think you should get a second opinion. I also recommend you find a doctor that

specializes in treating Chiari, not just a surgeon. Because, you may have something else besides the Chiari.

Now that some of the laws have changed on prescription

drugs is hard to get pain meds. You will also need to find yourself a pain management clinic. The only way your going

to get pain medication is after brain surgery. I have Chiari 1 and also Tethered spinal Cord and recently had my

second brain surgery in June an Tethered Cord surgery in July. The first surgeon removed too much of my skull

so the new surgeon had to rebuild my skull before he could even open up my dura. My doctor did an exploratory

procedure and found more problems that did not show up on the MRI. He also happened to notice a shadow at the

base of my spine which turned out to be Tethered. People with Chiari often have more than one problem but we all

suffer the massive head pain at the base of the skull. However not all of us share the same symptoms.

Hope this helped you understand a little more about Chiari.

Melissa

Great reply Mel! It’s difficult to find doctors in my area that "treat chiari. There are many to cut open the skull but when symptoms return they are at a loss!

My chiari is 1.4cm & I have symptoms like crazy. My neuro said chiari is a chiari & some people have the smallest of one & could still have the worst symptoms. I think its all on how your body handles it. I get severe migraines especially on the right side which besides chiari is occipital neuralgia & can be debilitating at times. I currently see a pain dr that prescribes me hydrocodone & a topical cream but some days I think he doesn’t believe how much pain I’m in cuz every specialist I see says they can’t find anything. I currently get tremors but just enough for me to notice. Maybe the hospital stay will help them see how much pain you are in & start the process of finding a treatment that works for you. I look on here to see what others are taking & what might help. I hope you able to find & get the help you need :pray: :two_hearts: