Understanding my chiari situation.
Posted , 4 users are following.
Hi. I'm. 18 years old and am having a bit of a rough time.
I've been ill for about 2 years. Whilst it was recognised I was sick about a year ago, my symptoms were vague enough that at first it was thought they were the result of an anxiety disorder. A year of therapy and medication later, it's become clear this wasn't the case.
In the last 4 months I took a turn for the worse; both mentally and physically I was an absolute wreck. Today I'm 11 days away from seeing a neurologist for the first time, and though I had an MRI which was given the all clear a year and a half ago, I'm convinced I have an undiagnosed chiari malformation; I've read up on it and the presentation of my symptoms matches perfectly with the condition (yay). These symptoms are numerous and debilitating, none more so than the horrible sensations and pains I feel in my head, and the great mental discomfort that's come with it.
It's hell really. I have lots of fears about the unknowns of my condition (it's not even diagnosed yet!). This is almost just a way of helping me cope right now.
Is the condition progressive in that the longer it is left untreated, the more permanent damage could be done to me? Suffering is one thing, but the fear every day that goes by, my worsening symptoms are doing me irreversible damage, that's scary.
Secondly. My symptoms are worsening. I'm not sure how rapidly, but they are, most notably in the last few days. I've started getting an electric shock sensation in my head and body every time I blink. A pounding jolt with every movement of my eyes (now it jolts through my ear too 
), pins and needles in my arms and legs, I just want to know that I'm not in danger of serious complications in the wait for the appointment (that agonising wait).
It's like I can't possibly keep holding on for such a period of time with the way my symptoms are going, but if I can be better informed as to why they're happening and what the condition means for me, well it might just make this 11 days and the weeks to follow a little easier. Thanks for reading, and for any comments you make.
0 likes, 3 replies
Apple62 alexander24245
Posted
Hi there,
I had decompression surgery after
6 years of misdiagnosis. I'm 63 and had the surgery at 60. I found a neurosurgeon more knowledgeable than a neurologist. A lot of people have the surgery and return to their normal lives. Others continue to exhibit symptoms. You have a 50% chance of normalcy. At this point focus on relaxation and take life one day at a time. Request a cine MRI when u see the neurologist and go from there. I wish you the best.
Stable2309 alexander24245
Posted
Hi alexander24245
Sorry to read your story.
I identify with some of it, but bear in mind no one can treat Chiari, which is a bold, invasive and a wee bit traumatic without the actual proof you have chiari.
I started with headaches end of last year, but have no doubt in retrospect that it was already impacting me before then.
In Jan and then Feb things changed rapidly and I felt very very wrong, with panic attacks, anxiety, constant headaches, chronic fatigue and problems with understanding complex issues.
I was signed off work for anxiety, and underwent a course of CBT, cognitive behavioural therapy. I enjoyed the discussions, but constantly was asked how i felt, so they could give me coping strategies. When I wrote down what I felt it was clear that the primary sensations were headaches and tiredness, and shortly my mental health no longer was comprised.
My GP was magnificent and after a couple of weeks sent me for an MRI scan which indicated a +20mm herniation.
I saw a few specialist consultants, including a neurologist, who gave a me a diagnosis that I could not identify with as he said it was nothing to do with CM. But next two neuro surgeons were clear that it was CM, and surgery was booked.
I write this from my bed at home seven days after decompression surgery where NS admitted he had to lob off some of the tonsils to make space. It was painful, and will continue to be so for sometime.
I don't know if it's worked yet as it's too soon. In short term pressure headaches have been excruciating, and I remain positive it was the best (only) course of action I could take.
One friend sincerely suggested I practice transcendental meditation instead of surgery, but I was not convinced that was a meaningful option.
I have no doubt your condition needs an experienced person who is also a specialist in CM. Check websites to ensure they are, very best of luck in finding the right help for your condition.
Stable2309
b2wc97455 alexander24245
Posted
You have good respond here, my advice to you is..get decompress as soon as possible before getting nerve damage, but makse sure you have got the best NS..NS who done lots of decopression with a success rate..if you are in the UK go and call Ann Conroy Trust..also ..make sure you keep your GP/Neurologist update about your symptom, tell them if you are going to see them soon..how you feel..how your quality of life is null..they have duty to make sure each patient have their quality of LIfe..be firm but learn about your condition..share with them..ask them to help you..let them know that you are 100 percent rely on their support..and how thankful you are if they can get the operation as soon as possible..I hope this help you..while you are waiting..get magnesium, drink plenty of waters..listen to your body..take time..do not beat yourself up..do not try to make other happy..when you are young you might like to go out..but my suggestion is...just be careful..I blacked out one day..it is not worth it..look after yourself..topiramate help reducing dizzyness..but remember BE KIND TO YOURSELF