Sunday, 24 October 2010

Day 673 - Chiari Malformations

"In 1891, Austrian pathologist Hans von Chiari described certain hindbrain abnormalities as postmortem findings in infants; these came to be known as Chiari malformations.

Chiari malformations (CMs) are structural defects in the cerebellum, the part of the brain that controls balance. When the indented bony space at the lower rear of the skull is smaller than normal, the cerebellum and brainstem can be pushed downward. The resulting pressure on the cerebellum can block the flow of cerebrospinal fluid (the liquid that surrounds and protects the brain and spinal cord) and can cause a range of symptoms including dizziness, muscle weakness, numbness, vision problems, headache, and problems with balance and coordination.

There are three primary types of CM. The most common is Type I, which may not cause symptoms and is often found by accident during an examination for another condition. Type II (also called Arnold-Chiari malformation) is usually accompanied by a myelomeningocele-a form of spina bifida that occurs when the spinal canal and backbone do not close before birth, causing the spinal cord to protrude through an opening in the back. This can cause partial or complete paralysis below the spinal opening. Type III is the most serious form of CM, and causes severe neurological defects. Other conditions sometimes associated with CM include hydrocephalus, syringomyelia, and spinal curvature.

Medications may ease certain symptoms, such as pain, although many people with Type I are asymptomatic and do not know they have the condition. Many patients with the more severe types of CM and have surgery see a reduction in their symptoms and/or prolonged periods of relative stability, although paralysis is generally permanent. Surgery is the only treatment available to correct functional disturbances or halt the progression of damage to the central nervous system."

I recently had a comment on the Hemicrania Continua post from someone who has been diagnosed with Chiari malformation. Given that I do not yet have a post on this condition, I thought it would be interesting to write a few lines about it, especially as recently various people have mentioned that they are familiarizing themselves with new conditions via my blog. And I have to admit I find it fascinating, albeit at the same time very daunting, to learn how many different conditions have constant headache as one of their symptoms. It goes to show how complex and how intricately connected all parts of the human body are.

And I wonder how many other conditions exist with headache as a primary symptom, which modern medicine has not yet familiarised itself with.

Some of the websites I have read which detail the symptoms of Chiari state that at times an MRI is not sufficient, and that a CT scan can better detect any possible signs of the condition. I myself have had both, so can say I most probably do not have Chiari malformations. Yet again, something to tick off the ‘I most probably do not have this’ box.

As Christmas once again creeps up on us, I am approaching year two of my permanent headache. I feel I have made some progress since it started, albeit only in terms of being able to eliminate what it could not be. As to what is really is, I still do not have a clue. At times I sit back and wonder whether I should not be more worried about this wretched headache and about what it could possibly be, but it has got to a point where I simply push that thought to the back of my mind. I try and forget that I have had this miserable and mysterious headache for so long, this headache which has no doubt altered the course of my life and has put me on a life path that maybe I would not have followed. The only thought I can reassure myself with is that, as I have mentioned before, it has probably made me into a stronger person and enabled me to cope with a condition I previously would have thought I would never have been able to put up with.


  1. This comment has nothing to do with the post but I don't know how to send a message to the creator of the blog. I just found this blog at 04:30 in the morning being bored and unable to sleep due to pain. This is the first time in many months that I've searched the internet for things concerning a permanent headache. Mine started on 15 May 2008. After just reading a few posts from the blog I was close to laughing. This is one of the few times in the past two and a half years that I've had the vaguest feeling of normality, reading how someone was feeling similar symptoms and emotions. In all this time I've been to many doctors and have tried even more pills and treatments. My headache has consistently worsened since the start despite all efforts to treat it. I've been so comatose on opioids that my eyes couldn't even focus enough to read(I wrote the whole exam with only one eye open) but even then it didn't affect the intensity of my pain. I have only had two or three days without pain since the start, but that was on a ketamine infusion(might be worth trying, it works for some people), this affects your body so drastically that it needs to be administered in the ICU and at the point that I couldn't feel pain I could barely feel the existence of my body so it's not a long term solution for pain relief. It will be interesting to talk with you. Good luck with everything

  2. Hi Jurgen

    I am so sorry to hear you've also been suffering from such a horrid headache.. it's odd to think how many people are out there who have similar symptoms.. what do the docs think yours is, or are they just clueless? (not surprising of course)

    Hope the blog helps find a possible solution, I haven't quite found mine yet and it's nearly been 2 years. Good luck, stay in touch

  3. I have a silly question that don't really belong here, but I don't know where else to post it. At one point, you mentioned something about shoulder problems. Can I ask you what that was about? Sometimes things seemingly unrelated can prove important diagnostically.

    All the best.

  4. the shoulder incident happened a few years ago when playing squash - it was a minor dislocation which i had to see a chiropractor for. it eventually went away but a year later on holiday i was being slightly over-adventurous and jumped into a river off a 10 metre bridge; when i landed in the water the shoulder was back to how it had been after my squash game.. it's got a bit better since but it's certainly not 'normal'. i still find it quite uncomfortable to sleep on.

    i agree things seemingly unrelated can prove important diagnostically - when seeing the kinesiologist he has also been looking at my shoulder for possible links. did you have something specific in mind or someone you know who has had a similar incident?

  5. I have been reading your blog as I once again do a web search for hemicrania continua. I have had this type of headache for 25 yrs. I was misdiagnosed with migraines until I saw a headache specialist a yr ago who diagnosed me with HC or CPH. I have gone through 5 neuroligists and now the headache specialist has given up on me. I have tried every medication made for headaches. The Drs tell me there is nothing else to try. I had high hopes for indomethacin but alas just as everything else it worked a few wks then stopped. I don't mean to be discouraging but I am hopeless now! I have suffered for so many years with no help - not like I haven't tried but no Dr knows what to do with me. I have a 24/7 headache and at times they become so severe I have thought about just blowing my head off! I have also tried herbals with no relief. I fugure one day someone will find me dead from taking too much pain medicine trying to just stop or ease the pain. I have had 2 headache free days in the past 6 yrs. I hope someone finds a solution that will help all of us that suffer from these headaches. I am working on going to a second headache specialist but I do not have high hopes - I just feel like I should not give up on myself like all of the Drs have although I wonder if this won't just be a waste of my time too. I traveled 4 hrs to the last headache spec and will have to drive 5 hrs to this one because there are none locally for me. I certainly sympathize with you and everyone else who suffers from these headaches. Unless you have them you just don't understand .... When the pain gets so bad I just want to die and I feel so alone like no one understands but I guess there are people who do. Good luck to you I hope you don't have to suffer as many yrs as I have!

  6. I tried to comment on your latest post, and I'm not sure if it went through, since I wasn't signed in, but I do want to say -- don't give up. Take a break if you need to, but don't give up. I was diagnosed with Chiari 17 years ago and told it was asymptomatic and I just really needed a therapist. I've lived with this pain for nearly 25 years at this point, and it's only this year that I've found a true specialist who really knows what is going on with me. I've seen so many doctors up to this point, and had given up myself until I started to lose my vision and have other serious neurological symptoms.

    There is a doctor out there that can help you, but finding the right one, with the experience and expertise is key.

  7. Great post. Thank you for sharing this to us. Thank you so much.