It's changing

Have a question about a symptom, procedure, medication, diagnosis, research, or coping? Ask questions and share what you know with others

Moderator: pmaxwell

It's changing

Postby akbrowneyes » Wed Dec 14, 2011 4:46 am

I keep living, moving forwards, laughing, loving, and it won't go away. I push it out of my mind and try to ignore my symptoms. Well there is no ignoring that something is changing and the pain that began this nightmare 5 years ago is repeating itself in my left hand. A cough or yell triggers the electric shock and my tears are from the fear more than the pain. I feel that I don't want to share it with anyone and barely could call Dr. Ellenbogen in Seattle. I feel very alone in Anchorage, Alaska with this crap. I do not want to start the process again and go through the surgeries and recovery.

Sorry to vent. I just can't sleep because my face is on fire.

Dear God, Please give me and all those that suffer from a chronic illnesses rest.
Auto 6/1/94 -- Cervical Fusion C4-C7,
Ant & Post Surgeries
DX 7.5 mm SM 3/23/06 1 week after birth of 3rd Son
SM C3-T2
Lamin Decomp, Duraplasty 7/14/06
Shunt Placement Surgery 6/12/07
NS: Dr. Richard Ellenbogen Harborview Seattle, WA
Posts: 45
Joined: Fri May 25, 2007 7:27 pm
Location: Anchorage, Alaska

Re: It's changing

Postby gunflint » Wed Dec 14, 2011 10:06 am

It's interesting that you said nightmare. I told my wife just this morning that I used to hate dreams but now it's the only place I can go that doesn't hurt. It's easy to get scared, angry, or even dangerously depressed when looking down the barrel of a lifetime of hurt. I don't know what to tell you other than some days are good and some days not so much. But you're not alone and you should get some mild comfort from that.
Posts: 266
Joined: Tue Jun 14, 2011 8:10 am
Location: Duluth Mn

Re: It's changing

Postby Jankster253 » Thu Dec 15, 2011 1:09 am

I feel alone a lot too. Misunderstood and frustrated also. I'm here for you. I just called Dr Ellenbogen's office tonight myself. Haven't seen him since March of 2009, but I can tell something is really different inside of me. I hope he can see me soon. Hang in there. :)
Diagnosed with SM with unknown cause since 2007
C5/C6 prominent central canal
Syrinx measures 1mm T-5 to T-11
Degenerative disc disease
Chronic migraine
User avatar
Posts: 26
Joined: Wed Dec 14, 2011 11:42 am
Location: Tacoma, WA

Re: It's changing

Postby kiminfla » Thu Dec 22, 2011 6:48 am

This path that we're all on can be overwhelming at times. I pray that things will improve for you and all who continue to suffer and struggle. I hope that you can get some definitive answers. We're here for you. Be blessed, Kim
CM - PFD 9/7/06
Life is mostly froth and bubble. Two things stand like stone: Kindness in another's trouble, Courage in your own. -- Adam Lindsay Gordon
Posts: 1348
Joined: Wed May 16, 2007 2:03 pm

Return to All About Chiari, Syringomyelia, and Related Disorders

Who is online

Users browsing this forum: No registered users and 17 guests