Hello all. I have had decompression for CM in April 2010. Before the decompression i had complete numbness on left side of body,headaches,all of it. I felt better after my surgery, but now everythings coming back. I am so tired all the time. My head is so heavy i feel like it is just gonna roll right off my shoulders. I cant work and was denied disability once already. I feel everytime i tell my NS about it he does an MRI(which i hate btw) and says i'm fine. I do not feel fine. I am so tired of trying to fight to prove im sick.I am so depressed all the time. I just dont know what to do anymore. Thanks for letting me vent. Any input would be appreciated.
Good Morning-
First off, don't give up. I know exactly how you feel. I'm sure most people on here do too. It is so hard fighting the fight that we have to fight for Chiari. I have found that most Dr's act like what is wrong with us is nothing. We should just suck it up and live with it. It makes me so mad, because we KNOW something is wrong. I haven't been decompressed, and only recently diagnosed, so I can't give you much advice but the one thing I have learned so far is keep pushing. I even called an ambulance for myself one day because I thought maybe they would take me more seriously. It didn't work, and I just ended up with another MRI and yet another (different) measurement on my herniation. PS I hate the MRI's too, but I'm gonna keep pushing. We know our bodies and if something isn't right and with enough pushing, someone will figure it out. I hope you begin feeling better and find that someone that will help you. Big hugs to you and vent anytime...it's why we are all here. :)
Mar
Oh Min2010,
I am so sorry you are feeling so badly...Like Mar said..don't give up....easier said than done, sometimes..right???
I would be sure to appeal your SSDI case.
Have you read.."Contents Under Pressure" by Ray D'Alonzo??? A must read IMHO....He tells his story...and it took a long time for him to feel right.
My NS told me that it may take a long time for my brain/body to re-calibrate to a normal flow of CSF..since in his opinion had been not flowing right for my entire adult life...if not my whole life....that made sense to me.. and made me feel validated.
I am 3 yrs post decompression...though some things are better...some things are still a daily struggle and I feel like a nut case if i shared every Sx with my family...
The depression is so common with Chiari patients.....as well as anxiety. Have you seen anyone for meds on the depression??
I am glad you shared your feelings with us...we get it!!!! I just wish I had a magic wand..ya know???
Please be sure to stay connected with us here...we may not be able to help with your physcical pain but I know, for me , anyway...being connected here w/other Chiarians has help me mentally..don't get me wrong...still struggle with depression and anxiety....but you guys help me through a lot of it.
Peace and Prayers,
Lori
Thank you all so much. It helps to have people to talk to that understand exactly what i am feeling . I will continue to fight this.
Prayers for you all,
Mindy
Hello I had surgery in may 2011, I’m still having numbing, tenderness and some swelling on my left side. I’m still on therapy which helped me a great deal. My NL is great he is the one who got the ball rolling for me because he is the one who discovered the syrinx. He pit me on Elavil for my headaches and restlessness. We all have good and bad days but never give trust in God and he will see you thru your toughest times.
Hi Min2010:
Just seeing how you are today????? I also wanted to mention that I am working with a Physiastrist(sp) ..rehab doctor...he deals with folks like us, stroke patients, people who need intense Tx after accidents, ect....I was sent to him originally from my ortho doc...see, mths back I had a series of falls..which was due to my balance issues..but I injured my left hand and arm...I was Dx'd with RSD..Reflex Sympathetic Dystrophy.....he put me on a couple of rounds of Prednisone.....now he feels as though I have a nerve entrapment ..so Monday I go to him for an EMG...
The reason I am bringing this up is b/c it may not be a bad idea to look into this type of doctor....
Keep us posted.
Tracy...hows the Elavil working for you????..You are so right....God will see us through our toughest times...we just have to be open to let HIM...
Peace and Blessings,
Lori