I'm literally at the end of my rope with doctors. I am so depressed because I can't seem to get ant help with my pain. Yes..I have chiari malformation ...I show many symptoms...severe head and neck pain...tinitus...vetigo...numbnrss in limbs with the whole tingling sensation...my face constantly tingles...my eyesight has been affected. And I have problems with brain fog..a lot. All of this has been documented for several years now...I've seen two neurologists....and I have been diagnosed with depression by my therapist. So .....all I hear now is...fepression can cause aches and pains....your chiari is stabld. Your just depressed...this is not a physical problem Beth. Really? I went to the emergency room in severe head psin and I was having problems talking because my speech was slurred...they wanted to call my therapist. Nothing for pain....nothing for the migraine. I'm depressed. I trust no one now and I just sit at home in pain with no quality of life. Tell me...what's the point now?
Emmaline is right you MUST GET A SPECIALIST!!! that is what has to happen before you can get help.In my own experience I can tell you not to waste any more time with these Dr,s who will not take you serious.Years of my life has been wasted,and now that I have gotten some help it makes me so mad to hear of people being looked over and told they are depressed.You are living as so many others just passed from one Dr.to another,depression is just something they hide behind when they don’t know the real problem.I would dare say there’s not many chiari patients that hasn’t been dx with depression.I know it isn’t easy to travel money wise or physically but it could be what you might need to consider,if there’s not a real specialist in your area,it must be one who does lots of surgeries each year.Please know you’re not alone,I’ve had decompression and feel better than I have in 28 yrs.that’s how long mine went un dx.The longer this goes on the more damage it does to the brain stem,even though it’s improved I still have symptoms and maybe that would be different if it hadn’t taken so long to get help.Please keep us posted,never give up,you have to advocate for yourself,find out where you can get a specialist and do whatever it takes.
Beth, this is no way to live. They are telling you your Chiari is stable because they don’t know how to treat you…because they don’t know what chiari is! Unfortunately you just may keep hearing this from doctors until you get yourself into a true Chiari specialist. Hope is not lost. I know you are in a lot if pain right now, and I know how awful it is move through each day this way, but begin to get your plan together, the goal is to be seen by a Chiari specialized NS. Like the girls said, read up on Ehlers Danlos and dysautonomia. The more familiar you are with this stuff the more easily you will team up with the right surgeon. Keep going Beth, we are all pulling for you!
Jenn
Beth..
I am so sorry that you are having to go through this...I agree with all the others who wrote before I have...You need to see a NS...
I am so darn sick of hearing about CM patients being told that their sx's are all due to depression!
Here for you....
Beth, go see a different neurologist, you are not alone in this, even though I have a neurologist and have known I have chiari for 10 years, I still get the "it's all in your head" by family members or others, it's such an unknown malformation that people don't have a clue about it or how to respond. I have the brain fog and slurred speech as well, some days I'm great, then the next day I'll have neck pain. I haven't been decompressed either, just keep positive support people around you at all times and you can get thru anything and don't give up ever!!
Lori, your so right about that! Even now when I tell anyone about anything I'm experiencing I get statements like "are you sure your now worrying yourself so much that you are actually getting symptoms?" lol....really? :)
lori said:
Beth..
I am so sorry that you are having to go through this...I agree with all the others who wrote before I have...You need to see a NS...
I am so darn sick of hearing about CM patients being told that their sx's are all due to depression!
Here for you....
I read Mandy’s post telling you she would help you get to a specialist in your area.I feel you can trust her,she seems to be knowledgeable.This breaks my heart because there’s to much suffering and not enough help.The rule here,and I hope I can speak for lots of chiarians,we can never give up.We have to do what we can and every time we find an answer we can pass it on to someone else.You will get help.Where do you live? There’s a NS here in N.C.who is probably one of the best in this field,he is Dr.Micheal Rosner.He did my decompression and it has been a success,I have dysauutonmia and dealing with symptoms but surely things will get better with that.Beth please know you’re not alone in your pain we understand how you feel.I have seen at least 20+Drs.and after 27+ yrs.I found hope last yr.at least things have changed for the better and you must keep on keeping on!!You will be in my prayers,just hang on to hope of better times ahead.