What they found out was that it was polyneuralgia ...and that the damage was double crushed ... at the neck, the elbow, and the wrist (depending on the nerve).
The nerves are permanently damaged, and decompressing them, will not make a difference. They will not get better.
The doctor, today, was quite discouraged. He said that it frustrated him, because, if it was his brother, he'd be scared, because his scoliosis is 'messed up, really messed up, nightmare messed up'.
This is really the first doctor to talk to us in REAL terms.
We are going to check out a Dr. Lenke in St. Louis. The orthopedic surgeon suggested that we get copies of all his xrays, his MRI's, EMG's all his reports, lung function tests and write him a letter ... and just say "can you help?" So far, Dr. Lenke is the only surgeon we've found that will even approach the type of scoliosis that Don has. (if anyone knows anything about him ... please please please post or email me!!!!!!!!!!!! good or bad ..or indifferent, even if it's just to say, yeah, I've heard of him!)
As for me, I'm exhausted. I've been going to my therapist week after week .. and she looks at me and sighs ... I will have to tell her next week though that ... really, aside from the Don issues ... the other medical stuff we've faced this year ...really aren't that unusual. I'm always tired. I'm always hurting. Nothing new here. I just was getting more rest because Don was doing more ... and helping a lot. So, I'm really not any sicker.
I think my life overwhelms her at times. She's going to have to get over that. I need her help to get beyond my issues ... and to do that, she's going to have to get beyond my current every day crisis' that seem to happen every day. Those have been on going for 18 years ...they seem like a big deal to her ...but for me, they are par for the coarse ... I realize that concerns her ... and that she lives with chronic illness herself ...and that she had a mother with chronic illness ...but ... for me, it's just her times 3 ... so ... big deal ... it's my life, my cards I've been dealt. I need to deal with what's caused the eating disorder ... the day to day junk ..is always going to be there. If she tries to deal with that first ...we'll never get to what's underneath.
The boys started school already last year. My oldest is a Senior, and my baby is a Freshman!!! Geesh ... time flies. It just wasn't that long ago that I took my son to kindergarten at Little Light House and watched him toddle into class with his back pack ... with his big eyes ...and those glasses ... and that huge smile ... and now ... he's in high school! Where, did the time go?
Pk, I don't know a thing about the doctor but I do know a teeny bit of the scary nerve stuff. You, Don and your sons are in my daily prayers.
ReplyDeletePK, I couldn't find a way t contact you so feel free to "not approve" this if you want since it's more personal.. but I've enjoyed reading your blog. It comes up sometimes on my Google alerts!
ReplyDeleteI am the founder for National Invisible Chronic Illness Awareness Week, held annually in Sept. This year it is Sept 10-16, 2007. Based on the content of your blog I thought you would be interested in knowing about the week, as well as our awareness video at http://www.invisibleillness.com .
The week is sponsored by my organization, Rest Ministries, which serves the chronically ill.
You are welcome to share any of the information from the web site with your readers, including the video. This year’s theme is “Living with invisible illness is a roller coaster. Help a friend hold on!” There will be 3-4 chat seminars each day and there are items such as t-shirts, car decals, pins, etc. to help spread the word.
Thank you so much for your efforts in blogging about chronic conditions. Nearly 1 in 2 people in the USA have a chronic condition and 96% of it is invisible. We hope to bring people together to encourage one another, as well as increase the awareness that one may “look great” but not feel so wonderful.
Lastly, I’m giving away free copies of my book “Beyond Casseroles: 505 Ways to Encourage a Chronically Ill Friend” to bloggers or web site owners who would like to review it on their web site or give it away to a reader as a prize. Just email me back your postal address at lisa@invisibleillness.com if you’re interested. You can read more at http://www.beyondcasseroles.com .
Thanks so much for your blog, helping others understand illness and pain.
Lisa Copen
National Invisible Chronic
Illness Awareness Week
Founder & Coordinator
Patti, thank you, and you and your family are in my prayers as well. I am forever grateful for your friendship!
ReplyDeleteLisa, I responded to your email. I got an automated response, so hopefully you will get my email soon. I was definitely pleased to see your comment. I know Rest Ministries quite well! I wrote for Beyond Homeschooling Message board for over a year several years ago, as well as being a board moderator. When I saw your name at the top of your comment, I literally squealed!
Welcome to my blog!
Pk
not that you may want / need suggesstions; but have you checked in with the cleveland clinic ?
ReplyDeletePeggikaye, I have been busy with moving and stuff and haven't gotten caught up reading yet. I will continue keeping you, Don and the boys in my thoughts and Prayers. I have missed you!
ReplyDeleteAlso, your son, in those pictures when he was little is cuteness galore!