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Brain & Nervous System Disorders Message Board


Brain & Nervous System Disorders Board Index


Re: DX with chiari
Sep 30, 2008
Hi lroberts~

I feel for you, I really do. I can hear the frustration in your post. Know that you can come here to let out that frustration and though we can't fix whats happening, you'll feel better just venting.

It is so hard being where you are with no game plan. Too bad you had to cancel with rosner. At least going to him, you would have gotten some answers that you so desperately needed. I thought hubby was going to take you? Did he change his mind?

I get alot of burning sensations too. Luckily not in my throat. That must be miserable:( Have you tried the spray for sore throats that numb the troat? I know not much touches the pain we have but its worth a shot. I burn in my head, face, lips all down my arms and into my torso as well. It feels like I was rug burned. But for you, it must be difficult to eat. Try some cold foods. Icecream will probobly help. The brain cant feel 2 sensations at once. So if it feels cold, it cant feel pain. Even freeze pops might help. When your desperate, you'll try anything. I use ice packs all the time to get relief.

Dizzy, weakness in legs, fatique, they all can be related and I get that too. The only thing you can do is rest when you can. I know the kids are small but try to find some lazy days activities to entertain them so you can relax while resting. I know its hard and I can't imagine doing it with little ones. Do you have family support? How about your hubby? Does he let you rest when he's home? I know you said he just doesn't get it but even a couple ours when he gets home would help;)

This definately is a challenging disease and adjustments in life style is the only way your going to feel better. I was diagnosed in April, have had my 1st surgery with more to go, and 5 months later, I'm still struggling day to day. All we can hope for is that surgery can help. Theres no promises but even if it fixes something to make life a little easier, its worth it. And if it doesn't, surgery hopefully will stop progression so we wont get worse. I look at it that way so I won't be dissapointed. If stopping progression is the best I can get, I'll take it. If I get relief from my symptoms, all the better. You really just have to try to find some peace with this until you can get to a chiari specialist.

Just hang in there and know your not alone;)

Cindy
Re: DX with chiari
Oct 7, 2008
Thanks Cindy......yes it is all about aknowledgement. This is sad but one time a new doctor said to me "there is nothing wrong with you". Never saw him again !! I did go to a Headache Institute.........after 3 days I walked. This is no lie they gave me 20 different meds per day and by the third day you couldnt even see a space between my fingers.......they were so swelled. I have had some wonderful doctors too. All the drama started in 1984 it was considered a Workmens Comp case and alot of doctors dont want to get involved. I had 3 doctors that disabled me .
I guess my chief complaint is the headache with pressure pain to back of my head. My neck is middle to left side pain. It will get out of control and quickly blood pressure creeps in up to 200/100. Pain behind my eyes.....yes vertigo is the worst had tons of test for that.....no answers for that either. One I went into the dining room then turned to go back to the living room ............everything went black and I couldnt see finally when I could the room spinned so fast I went down. My brother called a ambulance he is a EMT and ER just said vertigo. I have Sympathic Pain in arm also had surgery to cut pain nerve,hoarsness...........just about pain everywhere. Also RSD in arm which I dont believe.I also went to a pain clinic,nerve blocks and that just made it worse.
I refuse to quit looking I am on a journey now. Luckie for me right now I am going to a ortho doc that does want me to have a neck MRI.........so I will ask for the spinal fluid test along with it. I just hope I can read all the test...........maybe my brother will help and since he is in the medical profession he knows of someone
I am also having a Endo with ultra sound they found a small mass on my pancreatis......and I dont even drink. He said he doesnt think it is cancer but wants to be sure.........and check everything else out. I have that done Oct .
23.
Back to Chairi maybe I dont have that but I believe there is something going on in the brain and neck area. It is pitiful when we have to try and read our own MRI'S AND CAT test. We have to do what we have TO.
How are you doing these days did you have the other surgeries done? If I remember right the last post was 2007. Do you still talk to Lisa.........I read all the post........you girls have been thru alot and great support for each other.
Dr.Oz is on Oprah we should email him and suggest he does a show on Chiari.......take care wish me luck on my new journey.





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