The symptoms I’m going through consist of constant exhaustion,
a dreamlike state, headaches, back/neck pain, cold hands/feet
blurry sight, dizziness, vertigo, and panic attacks. I’m not sure how
many of these symptoms have to do with my malformation but they
continue to affect my life and I struggle everyday. I found going to the
gym helps but didn’t fix me. I’m suppose to have surgery but don’t
want to do this unless I know it’ll be successful. I don’t think I could
handle the disappointment I already feel alone as it is. I’m completely
alienated in my area. I don’t live in the place I say I do. I’m in a very
small town and nobody talks to me anymore. I need help. I tried
going to a councilor and she told me god would fix me and my problem…
Hi Allison,
I completely understand how you feel. Its so hard for others to get what we are feeling and for us to even try to explain it. Its not like cancer, or being in a wheel chair, or so many other things out there. Its a weird illness that most of us look completely healthy on the outside. Its hard for anyone to really know what we are dealing with. Some days I can hardly use my hands. Some days Im too tired to get up. Some days, a lot of days, my memory is gone or playing tricks on me. I think finding a group like this is the best way to not feel alone. Im new here but already look forward to every day getting on here and finding that among this group, I am normal. That is a nice feeling. I hope that you get that feeling as well.
Alison,
You did the right thing by reaching out. I know how alone feeling the way we feel can be. You just need to find people to talk to. The surgery is a treatment not a cure so everyones results are different. Most people feel some relief and don't regret having it even though it's a very difficult surgery to go through. My personal opinion is that everyone that is having serious symptoms should have the surgery as soon as possible. The pressure in your head and spine is doing damage. Make sure you are going to a NS that does this surgery frequently and that they have a good reputation and you'll come through it fine. You sound really over whelmed and a little depressed. That's normal just make sure if it gets worse that you reach out and get help. We are here for you and you are not alone. Wendy
Allison,
Everyone has given you great advice:) I think all of us have felt alone, at least at some point, in this journey called Chiari. Hence, why we’re all here. I know it feels like it, but I promise you’re not alone in this. Living in constant pain with a condition like Chiari is physically, mentally, and emotionally exhausting. Many of us also suffer from depression and/or anxiety. So, we have that to deal with on top of everything else. It can be overwhelming! There is no way I can know exactly how you feel, but I can definitely relate. I had to start taking medication for depression and anxiety a couple years ago. I’m glad I did, because if I hadn’t I would probably still be crying myself to sleep every night. Don’t get me wrong…I still have my moments but at least it’s not all the time. There is nothing wrong with needing and asking for help. It took me awhile to learn this and I still struggle with it. In regards to the surgery, sadly there is no guarantee. It is a treatment, not a cure. From what I’ve read, 80% of patients have at least some improvement. There is some great info about surgery and our options on our resources page. The best advice I can give you is to educate yourself about Chiari as much as you can. We have to be our own advocates. Also, if at all possible, see a Neurosurgeon that is experienced with Chiari. There are lists of patient recommended doctors…You can find links on our resources and doctors page. I hope this helps at least a little. Please know that we understand and we’ll be here for you in any way we can:)
Crystal
I forgot to mention…All of the symptoms you listed are possible Chiari symptoms. You can find the long list of Chiari symptoms on our resources page too. Geez…I sound like a broken record…How many times did I say to checkout the resources page?! LOL:) But, seriously, there really is a lot of great information there to help you:)
Be careful with the gym and DONT do weights. I actually quit my gym and all I do exercise wise is walk now. I havent had surgery either. My neurosurgeon is hesitant to operate on me as I do not have a syrinx and with my symptoms which are mainly head/neck pain, a bit of short term memory loss, brain fog and fatigue the surgery would be a 50-50 chance of improving these symptoms. But I am in Australia and they are very conservative here unless you have more severe symptoms. Having said that, he said if I presented with a syrinx he would have no hesitation in operating. It's a big decision. If it were an 80% chance of getting rid of my head/neck pain, I would have the operation tomorrow!
hi allison
thank you for posting this discussion
i can completely understand how you are feeling my key board is messed up so pls forgive the lack of punctuation and caps ha ha
anyway you got great input from the other members who wrote b4 i did
i am so angry with the therapist you saw and said god would fix it
i am a christian and i do believe that god can do anything but god has a plan for each of us and we do not know what it is so for someone to say that to you may make you feel as though you are not a good person or have faith so untrue
i like the old cliche pray to god but row to shore and by you sharing your feelings with us is rowing to shore in my mind
you are asking for understanding and input pat yourself on the back gently//ha ha it is not an easy thing to do to spill your guts with people and tell them that you are lonely i know that is how i feel anyway
i too live in a small town which the locals call the village 6 to 7000 people we have only lived here a little over 3 yrs we moved from out of state and i only recently have made a real friend in my area
as for surgery you are natuarally nervous about the outcome
i will tell you that i have had improvement since my surgery which was over 3 yrs ago
i still have pain and some other issues but i am better than i was
the operation is a treatment and not a cure as others have written here
do you feel confident with your neurosurgeon
i was told and have also read that the sooner symptoms begin and a diagnosis is made and the decompression is done//
the better the outcome
sorry this was so long
remebeer this you are no longer alone we are all here for one another
peace
lori
Im with you... here for the same reasons. We have to have faith we find help and answers soon
hi
just wanted to see how you are doing today
just wanted to let you know i am thinking of you