Hey,
This is my first time posting, not quite sure what to expect.
I was diagnosed with Chiari in April after 12 months of headaches, balance issues and fatigue to name a few. I have seen a neurosurgeon who has decided I need surgery to be done later in the year.
The last couple of weeks, my mood has slipped and I'm struggling with the constant pain, exhaustion and symptoms. I feel really lonely, although I have a good support network, as no one really understands what I'm going through. I'm beginning to hate myself for not being able to do things and be the person I was.
Does anyone have any advice or experiences on how to deal with this?
Thanks
Hi, I'm pleased you have support, but as you say unless you have this it's hard to understand what and how scary this can be. I had decompression surgery 20 mth ago and I suffered all what your going through for years, it was discovered by my spinal consultant by accident , so it's good your diagnosis has been found at least you know what's causing everything. Accepting it is hard but you have to be positive, some have much better quality of life after surgery. And some it just prevents things getting worse. I still have trouble with slight pressure head aches and dizziness but take med for that. I'm able to work and have good and bad days. The surgery isn't pleasant, you have probably read the posts, and all recovery are different. Not everyone posts good news on here, it's more for support and reassurance, and understanding what your going through. But your not alone and any time you want to talk about your condition, myself and others are here for support hun x
Hi,
I was diagnosed last May after nearly 2 years of symptoms. My GP thought I had MS so I was actually pleased to have Chiari instead!
I finally had surgery on December the 10th last year. It's nowhere near as bad as some people say. For me the worst thing was getting infections in my wound but that doesn't happen to everyone! I was up 11 hours after surgery showering, washing my hair and walking up and down stairs (the physios were a tough lot!) I wasn't sick once and was up and about again really quickly. Everyone is different, but don't be scared.
Yes, it's tough feeling crappy with headaches - I now walk with a stick and have lots more symptoms than before my surgery. BUT I feel that it's important not to let Chiari define me at all. See your GP about your low mood, take advice and meds if necessary and prepare to fight it. Here if you need me!
Clare xxx
I have to say I have people that love me and is there for me but I feel like more of a burden then anything I go through my ups and downs and then days like today where I rather end everything and cry and cry cause I'm also always thinking of how I use to be and I'll never be the same ...but then I have good days and I never Caan tell of the good out ways the bad but through the headaches ,weird babbling ,the falling over for no reason and the falling asleep where ever I try to just think of my husband and what it would do to him so try to think of something that makes u happy by the way I already had my decompression a over a year ago....
Hi Cakegeek I'm sorry to hear of your diagnosis. I'm still waiting to be seen, I've 3mm chiari and suffer daily headaches and fatigue, balance problems, concentration and vision problems since a fall on ice three and a half years ago. It's been one constant battle to get a diagnosis, and an expensive trip to London to get an upright MRI coz the NHS scans did not show anything. The NHS are now referring me to non surgical spinal injuries and they will confer with neurosurgeons from there if needs be. It is a lonely illness because we still appear normal to uneducated individuals. Yet our social life is limited. No more noisy pubs or parties, no more lifting anything slightly heavy, no more brisk walks, plenty of rest, loss of drivers licence, loss of job, loss of home. But there are plenty of us and we understand what you are going through. There will always be someone on here to talk to.
I'm great full for this site I must say everything u just described happens to others not just me I lost my job my drivers license I'm no longer able to dance and hear loud music like I use to . the doctors made me feel like I make everything in my head and I know now I'm not alone thank u
Thanks for your responses, it certainly helps to know there are people out there who understand. X
Thank you Melanieheather we just need to support each other. That's all we can do for now. This illness is under publicised, our Doctors and Neurologists need educating. Take care and keep strong Xx
There are, but understand everyone on here is different , some suffer worse symptoms and some are better after surgery than others hun. You look after yourself plenty rest after surgery is a must.
I totally agree with you Karen, I don't think there's enough support , and after care when you have surgery too. As family's haven't got the person they used to have so it's a strain on them too.
Hi Cakegeek,
How old are you if you don't mind me asking?
By reading the posts on here it seems that the younger you are, the quicker you'll recover from surgery. I'm 60 but had my op over 20 years ago. I still drive, dance (much to the annoyance of my grown up sons) walk 2 dogs daily and generally enjoy life. Although I had to stop working after the op, this was because my hands deteriorated too much to carry on. This didn't stop me from writing a book and having it published and inventing my own product with Patent granted. I went through the lonely stage too and still feel that way sometimes but there will always be something out there to challenge you! You'll find that although you can't go back to being how you used to be, there are ways to move forward. I do all the things like you probably do eg - I get really grouchy with the head pain - I sleep when exhausted even if it's 11 in the morning and I swear a lot when I constantly drop things. If it starts to really get to you, come on here and shout all you want, someone will be here to understand.
Hi
I'm 31. Reading your post is very positive, think I need to accept what is happening, although it's easier said that done, and like you say find a way to move forward.
I'll definitely be on here screaming and shouting.
Thanks
Hi Julia, I'm quite astounded that you had your operation 20 years ago. So glad to hear you now lead an active lifestyle but if Chiari operations were being performed then, I can't quite understand why there is so little publicity about it nowadays or why the majority of the medical profession are ignorant about it. Are you headache free now. Xx
Sorry Helen but can I ask how bad were you to warrant your operation as I understand you have to be pretty desperate. And in what way did the operation help you? Xx
That's why I'm doing the walk for chiari sept. 17 I'm going Milwaukee Wisconsin I live in chicago but they don't have one here I'm doing it to raise the money so we can help to pay for more research to be done and to get it noticed that this is a real life changing disability
I haven't heard of anything like that in the UK, it seems to be more known about in the US.
I was extremely lucky Karen. My GP had just finished training when I presented him with a hand problem. He'd only seen it once before in med school and sent me straight away for an mri scan for suspected chari. I was pregnant at the time! I had very bad head pains, so bad that I was reduced to tears for days on end. I think my op was one of the first 5 performed in the uk. I have Syringomyelia so still have the spinal Syrinx (Cyst in Spinal Cord), Muscle Weakness, arachnoid cyst in brain etc; but the head pains have improved a great deal, I still get them sometimes though. When I was first diagnosed I couldn't find anyone else with the same condition and it was only recently I found this site. What a blessing to be able to talk to you all! There is certainly a lack of medical knowledge about the condition. My GP is the only one that is happy to see me in our surgery, all the other docters are frightened by the condition and really don't know how to treat me.
Not everywhere in the USA just some states but I know it is under conquerChiari.com it was on my Facebook link and signed up
Julia you give us hope, as I was wondering how things would be in the future , and having you on here is proof that you can still get on with life. I have developed dupuytrens cartractur in the hand and have disc out in my back, but I'm managing to do partime work only few hrs. But it makes me feel bit more positive after reading your post. Thank you x
Well done Melanieheather for taking on the challenge. Best wishes to you for the future walk. Xx