Hi, am new to here, but not to the joyous wonders of Chiari and Syringomyelia.
I am a 36 year old man from Wales in the UK, and was diagnosed on 24th December 2007, but symptoms were minimal back then and managed to function fairly normally until June 2013, where I began to develop a headache that has now lasted a total of nearly two years. I had decompression surgery in May 2014 to try and help alleviate these headaches, but after just two weeks post operation, they returned to a level equal to that before the surgery. I have many other symptoms with the headaches, such as extreme fatigue, daily nausea and sickness, muscle weakness and collapsing (especially left leg and arm), severe neck pain, difficulty swallowing etc., but these all take a back seat compared to the headaches that have severely impacted my day to day life.
Now from the preious paragraph, you could be forgiven thinking me a miserable, moaning git, and I'm sure my wife would agree with you, but I generally remain positive about the situation, and don't generally work well with pity, my philosophy on this is generally "it is what it is", but as I'm sure with everyone who suffers (and even those who are family members of those who suffer) realise that down days come and they affect you hard, just like having any debillitating condition.
I will start posting more, mainly as another shoulder to lean on (although my leg is liable to buckle ;)) and to post my experiences as they come around/passed.
Sorry to hear this. I haven't had surgery, and doubt I ever will. I sympathize with you about the headaches. I have them frequently, and for the most part can tolerate them with medicine, but they take their toll.
Welcome !!! We all can relate well. Funny, I was just thinking this afternoon how I may have about 2-3 days a month when I don't have some sort of headache. I would say that I had become quite resilient if it wasn't for the neck pain, the wierd pressure and popping stuff in my head and ears- It's like my head functions on it's own barometric pressure system. Off topic...If my head were a fish- I'd never be hungry. (That made me chuckle- only because I really enjoy fishing.) Fatigue, muscle weakness is both a literal and figurative pain in the neck. Sometimes I stop mid-swallow and I panic- because it's like I suddenly forgot how to do it. I have been learning what foods are worse for swallowing. I say No to milk duds and noodles... anything squishy-chewy and I feel physical fear of eating it. Know though- there is solidarity here! We are in it for life.
I have a syrinx, it collapsed pre surgery but fills and collapses with every scan I have had done over several years. Am checked out every 6 months with an MRI so am pretty much up on the leakage or refilling of the syrinx.
Nearly two years of continuous headaches is the killer for me. At best it feels like a terrible hangover headache, at worst I can't even leave bed and try to sleep it away (which happens too often these days). Surgery didn't help, but glad I tried as would try anything. The worst feeling of it all though is that people can't grasp this (not family and friends), and because there seems to be no physical signs externally from a far (sling, cast etc) people just brush over it and think never mind. I have broken my arm twice, snapped my ACL and torn muscles, and would honestly prefer to do any of those weekly rather than go through these headaches for the pain wise.
readingjunkie said:
That is awful I wish you felt better. I had a headache for a year straight. It was so very hard to function everyday.
Have you had any tests since the surgery? Are the doctors sure you don't have a syrinx or a CSF leak.
In it for life....almost like a prison sentence. I know there are many people out there much worse off than me with conditions/living conditions that I can't givbe myself too much self pity, but it is a depressing feeling when you relaise that this is life for the remainder of it.
I tend to stick more to liquids, never been a big fan of food, and being diabetic on top does not help with selections. As for the headaches, I can manage okay enough when they are mild for me (which is still quite painful in comparisson to the more "severe natural headaches" I used to have when younger), but when it hits the top end of the pain scale, I am useless, dribbling and slurring words, feels like being drunk without the joyous parts.
One thing I have noticed though, and this has always been since problems arised 7-8 years ago, when temperatuire changes throughout the day are dramatic (cold morn, to warm/mild day, back to cold) such as in spring and autumn, my head pain fluctuates to the point where I can near enough pass out. These are athe periods when I really suffer the most. When weather is stable, be it extremely cold or warm, then I have problems but nothing like that of when extremes are seen througt the day.
God I sound a right miserable git, haha. I'm not really, just having a bad few days (months/years haha).
amma71 said:
Welcome !!! We all can relate well. Funny, I was just thinking this afternoon how I may have about 2-3 days a month when I don't have some sort of headache. I would say that I had become quite resilient if it wasn't for the neck pain, the wierd pressure and popping stuff in my head and ears- It's like my head functions on it's own barometric pressure system. Off topic...If my head were a fish- I'd never be hungry. (That made me chuckle- only because I really enjoy fishing.) Fatigue, muscle weakness is both a literal and figurative pain in the neck. Sometimes I stop mid-swallow and I panic- because it's like I suddenly forgot how to do it. I have been learning what foods are worse for swallowing. I say No to milk duds and noodles... anything squishy-chewy and I feel physical fear of eating it. Know though- there is solidarity here! We are in it for life.
Hi this is the first post i have seen from the UK, I too am having a recuurances of symptoms and often feel completely alone as no one really understands what a chiari headache is like and the fatigue.... I can spend a day in bed at the weekend recovering from working all week and family don't understand, I do live alone but the kids, grandkids want so much of my time at the weekend and all I want to do is sleep, or even just lie down because I can't keep my head up anymore
I have been lucky in the fact mist my family understands, my wife has been excellent. It did take me having surgery for my parents and my side of the family to grasp the nature of what I have.
The problem lies for me with the condition causing internal problwns, and has no visual stimuli to others, and thus people who have not gone through something similar cannot really understand it. I take it like how people view depression, “can’t see it, does it exist?” attitude.
I wish I could give advice on how to help people understand, but found myself often banging my head against a wall, and thus lost friendship because of people not understanding I am unable to do the things I was able to do so prior the symptoms showing. The only thing I could suggest is to point them at forums like these, and tell them to read other people’s stories on how they are affected and hopefully they can pick up on this.
Sorry it has been a struggle for you to this point.
Hi, and welcome. I can relate to much of what you're experiencing. I have Chiari with a syrinx. Decompression surgery 12 years ago. My left side is largely effected . . . neck, arm, back pain and weakness. Trouble swallowing, fatigue, etc. All of those symptoms are with me all day every day. Other symptoms tend to come and go. Like headaches. My headaches don't tend to last as long as yours. Typically days or weeks, rather than months or years. Although all the symptoms that come and go are lasting for longer periods of time than they used to.
I too, generally approach this with a "it is what it is" attitude. I don't really like talking about it, but I do find this support group helpful. Inevitably, there are going to be good days and bad days. And, as much as we don't want it to effect the people we love, it does.
Hang in there, and think positive, positive, positive!
It is nice to see someone from the UK ....I am from Newcastle and have had many holiday in Wales with my partner and daughter.
What size hernia do you have? I have 'only' a 5mm one and have had numerous scans over the last 10 years, but cannot find a Neurologist to take me seriously. Like you , initially I could function well until the last year really. Constant pressure headache at back of head, 'head bouncing' severe balance issues / dizzy and have now started to fall over. I ended up in A & E last week after blacking out when coughing...
I try not to be a miserable git and try to see the funny side at times, I look like an old drunk when walking...I wish I could wear a huge sign saying 'I am not drunk'!!
This site is fab, the stories and people are so inspiring.
9mm but my neurosurgeon cared more for the symptoms than the size of hernia. I was placed with a specialist on chiari from the start so have been lucky that way. I had a lot of problems with various GPs though before diagnosis, and even after, who have no idea of the crap it causes. Hope you can find someone who eventually listens.
I didn't get to read through all the replies to your post and do not know is anyone spoke about Botox injections. I was diagnosed with Chiari Malformation stage 1 and had decompression surgery in June of 2002. Surgery did not help relieve my headaches. A few years after, I found a headache clinic and started on Botox injections. After a year, we found that if I had the injestions every 3 months, my headaches were gone. In 2010, I needed to have brain surgery for an aneurysm behind my left eye. We stopped the injections for the surgery and haven't had then since. I am still headache free to this date. I hope this helps you or anyone else that reads this reply.
I am not decompressed but I have to tell you I've had excellent results with a product called Cefaly. It's like a tens unit for your forehead that you use every day as a preventative. I STOPPED having migraines. It requires a script for your doctor and comes from Belgium. Costs around $250-300. Just an option to think about.
Hi there, I am sorry to hear about your situation I hope you feeling better each day, but that scare me though..as i am new and diagnosed waiting for surgery..did you regret you had surgery?..do you feel worse after the operation?
Our syptoms are extremely similar but after surgery I did get a couple new ones too…vertigo and depending on the day dizziness in the extreme. I am also much more weather pressure hypersensitive. BUT just so you know other systoms did improve. Alot of the tingling in my extremities has either eased up or stopped I no longer have momentary blindness I no longer have a constant pressure headache. Now after surgery we have to learn to live with the damage done.
Hi Michelled, were you think you made the right choice by having that operation though? what kind of damage did the neuro surgeon done to your system (CNS)