Chiari Online Support Group

Why I'm here

#1

Hi All.

I’m a pretty typical story I guess. About ten years ago I began experiencing head rushes (my own term) when laughing. The pain would spread from the back of my head/neck to the forehead in a stabbing and swift manner. It would go away fairly quickly though, so I attributed it (as did my general practitioner) to my blood pressure bottoming out. This past December my new primary care physician sent me for a lumbar puncture. She felt like the increased symptoms were actually idiopathic intracranial hypertension. After the MRI the Radiologist cancelled my lumbar puncture and informed me that I had cerebellar tonsillar ectopia (5mm).

Since that time things have progressed to daily torture. I wake up and have an episode (my neurologist’s term). I loose balance while walking. I can’t adjust the way I am sitting in the chair without wanting to chop off my own head. And don’t even get me started on how painful coughing is… I’ve tried four medicines so far - Topamax, Nortriptyline, Indomethacin, and (currently) Zonisamide. No relief.

The Neurosurgeon says I am not a candidate for decompression. The Neurologist says we’re just going to keep trying medicines until we find something that works, and we are crossing our fingers that we do. Meanwhile no one around me really understands what it feels like to not be able to grab my favorite shirt out of the dryer without tears of pain streaming down my face.

Same old story right?! Well that’s exactly why I’m here. To learn from you. To find hope in your triumph. To share our comparable struggles. I just don’t want to feel weird anymore.

Thanks for letting me join.

#2

Welcome!

I’m also a newbie but I feel your frustration. I hope you find relief enough to enjoy the simple things. I used to love roller coasters but I’m just happy to be able to bob in the ocean for a bit. And now I choose to dream of snorkeling instead of scuba which I’ll never do.

I hope you find some pain relief soon!

#3

I have very similar episodes. They don’t last long (at most a few minutes), but can be awful and happen repeatedly throughout the day. I can get them to quickly subside by laying down flat for a few minutes. It disrupts my day, but I am grateful to have a way to stop the pain. Medication was not helpful for me either.

I did have surgery, which has not eliminated the episodes, but made them significantly less severe and frequent. The other thing that I have found really helps overall is exercise. Although I can’t do anything that involves bending over or too much exertion, I do strength training once a week and cycle twice a week.

Hang in there. I hope you find some relief very soon!

#4

Thanks MsJ. I’m sorry about the rollercoasters. I guess I can be grateful I never really enjoyed those. Snorkeling sounds like fun. I hope you get to experience that soon!

#5

Thank you for the reply Tricia_e. It’s good to know I’m not alone. The short burst episodes often are difficult to explain to people, in particular non-sufferers.

Do you mind if I ask you whether you are happy or not you had the decompression surgery?

I walk at least once, but try to, twice a day. I have been overweight my whole life, but really have not had trouble becoming exhausted during my walks until recently. I’m hoping it’s a side effect of the new medicine we are trying (Zonisamide) and will go away soon.

Thanks again for the welcome and kind words!!

#6

The episodes are really hard to explain! I don’t think my neurosurgeon even really understands them. (I chose him based on his extensive experience treating chiari, not his ability to empathize.)

I am happy that I had surgery. While it has not been a perfect solution, I am vastly improved. Some symptoms have disappeared. Others are much improved. The days after surgery were really difficult, but it has been worth it.

I wish I had more helpful suggestions for you, but hope that the community here gives you some solace.

#7

Dear wahlvk,

From my experience, treating symptoms of Chiari’s with medication was a total exercise in futility! I went 10-years misdiagnosed - treating all the myriad of Chiari’s symptoms with DOZENS of different medications. My list of drugs is pages long! Like you, I got no relief whatsoever. (with the exception of the opiates. Opiates worked - but also made me addicted! I had to go through withdrawal nightmares after being on oxy for 9 months! I don’t recommend that!) :flushed:

Now I know why my medications never worked. With your Chiari’s, that ‘tonsil’ of 5mm is a plug stopping your Cerebral Spinal Fluid (CSF) from getting anywhere - so the medications aren’t making it to their destination (your brain) anyway. What baffles me is that neuro-docs just don’t seem to realize that a plug is a plug - just like a cork on a wine bottle. Doesn’t matter how long or short it is - it is still a plug! My tonsil was “only” 1mm - but it did massive damage because I waited 10+ years before getting the proper diagnosis. The longer you wait after Chiari symptoms show up - the greater the chance of permanent damage. (that’s what my neurosurgeon told me. He was a NS who does nothing but Chiari decompression surgery! The best Chiari NS EVER!) Even so, after decompression surgery, I still have permanent brain stem damage - all because I had waited too long. But still, I recovered 70% function from prior to surgery. For me, that was well worth it! :rofl:

A good Chiari’s NS is well worth his/her weight in gold!

#8

Thanks BethR. I wish I could find a good Chiari NS. My first NS was on the fence about whether or not to do a decompression. The second NS gave me a resounding no. But, oddly enough, neither requested a Cine MRI. Which as I learn myself up on everything seems like a reasonable test to request to see if my “minor” 5mm distension is plugging things up or not.