Cognitive affection of Chiari

Symptoms and Treatments
1

Hallo all,

I am happy to be included in this forum.

I have been suffering from a Chiari condition for many years. 2015, I underwent a surgery.
This month, I visited a doctors again who told me that the surgery had not been successful and that he would strongly recommend another surgery.

There are of course many questions to ask on my end to all of you.

However, what I am most interested in is the fact that the last doctor told that there is no cognitive affection of Chiari whatsoever. But I can feel quite a lot of cognitive affection. First of all, I am not really able to study words by heart, neither am I able to follow properly what other people say or express things in a proper way. In short: I am feeling that my daily interaction with other people is strongly affected (by a cognitive disability which I would relate to my Chiari condition).

What are you experiences in this respect?

2

Hey @Nina35,
Hey Nina this is Merl from modsupport.

Here is a part of the theory, the OLD theory.
Years ago the medical fraternity thought certain regions of the brain controlled certain functions. The cerebellum was said to control movement and function and that was it’s only role. Now, I say ‘old theory’ because it has now been proven to be wrong. It’s now known the differing regions work in collaboration to make movement possible and not solely the cerebellum by itself.

With Chiari the cerebellum drops, hence the idea only motor function is affected. I think that sometimes chiari patients do have motor function issues and it’s often identified as the primary symptom. But for some the changes can be slow to progress, so it’s not as easily identified or symptoms are simply labelled as idiosyncratic behaviours. Actions or behaviours that you can look back at and think “well, maybe that’s related…” (I have LOTS of those :rofl: ) The problem I have found is that some symptoms don’t seem to follow a set pattern or the ‘usual’ pattern. And I get told “it’s unrelated…” and by itself, it maybe unrelated BUT when you add all of those individual ‘oddball symptoms’ together, sometimes a pattern can emerge.

When the cerebellum drops it can alter the flow of cerebral spinal fluid around the brain and the flow of blood within the brain. This simply must have some effect. I know some dr’s can be very convincing that this is not the case, but as a patient, for me, there is an effect. For many years prior to a true diagnosis, I was told there was nothing wrong. Seems I was imagining it all. I just had a problem concentrating, seemingly. And then it was hypochondria, I was thinking it was worse than it was. But it was all VERY real for me.

Merl from the Modsupport Team

3

Dear Merl,

Your answer is really awesome! It is a truly “objective” and “factual” one.

This, first of all, because we have to acknowledge that Chiari is (still) a rare condition and so far it has not yet been strongly scientifically explored. That is why a doctor should always say “it seems not (yet) likely that there is a cognitive affection” instead of “there is certainly no cognitive affection”

There are not only many questions on my end, related to my condition and my situation, but also some decisions I have to make. First of all that decision whether I should undergo a second surgery, as suggested by the doctor.

What do you recommend is the best process now? Should I just post some more of my questions?
I have to say that I am pretty dire straits as I have just now given birth to a baby.
So one of my question would be whether Chiari would to heritable, although this has been categorically denied by the doctors.

Moreover: After my delivery, I learned that I should have informed the doctors in advance about my Chiari condition and that if I had chosen a spinal anesthesia, it could have had severe negative effects. Fortunately, the delivery went well, although a bit pre-term.

4

Hey @Nina35,
The first thing I need to say here is that I am NOT a Doctor, I’m merely a patient, so I can’t give you any recommendation for the ‘best process’. When it comes to neurology or neurosurgery every situation varies, which makes planning very much up to the surgeon and their approach.

My first surgery was to ‘fix’ my issue… …only, it didn’t fix it at all and set of a cascade of issues, which, over the years, has required multiple neurosurgeries and it’s still not anything like “Fixed”. One thing I have found is that for every opinion of the best option, you can find another surgeon who has a completely differing opinion, which only makes the process of decision making even harder. I have also found that specialists like to often give us ‘Yes/No’ type answers, but the reality is that we’re humans and we all have our own make up. What may have minimal impact for one individual patient can have an overwhelming effect on another. It’s all variable, so giving concrete ‘Yes/No’ answers IMHO is wrong. And here’s why I say that:

My initial surgery was an emergency, so I didn’t really have much say. But after, when things didn’t improve, I went looking for answers and 2nd opinions. Some medicos were ‘Ohh, I wouldn’t have done THAT…’ (being the first surgery, which started it all). I was only presented with one option, surgery, so to hear there was other options was shocking. After lots of thoughts of ‘if only I knew…’ type scenarios, I came to the conclusion that at that time and in that place, the surgeon saved my life. If he hadn’t operated, I’d either be dead or severely disabled. This why I often say to others “Could things be better? Hell Yes. But then by the same accord, Could things be worse? And again the answer is Yes”.

My advise would be to investigate EVERY option. What are the plus/minus for each? Why? Then you have to weigh it up for yourself and your situation. My daughter is big enough and old enough to look after herself :rofl: You have a young child to consider. You’re a (younger)female, I’m an (older) male and I think we take differing views on what we, as individuals, need and see as a priority.

Please do post your questions, others maybe able to relate too, to give you a differing perspective.

Merl from the Modsupport Team