Deb update...

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deb53

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Hi my spiney frienRAB,
Several of you have been kind enough to ask how I am. I'll try not to write a book but.....
I'm still in a significant amount of pain most days. I'll get a good day every now and then...a "2" , most days a 5-6, lately a 7-8 :( I can't walk very long, stairs are awful, by 4:00 in the afternoon I need my cane as my legs hurt so bad and I don't want to fall. My right foot starts to scuff after 10-15 mins of walking. The surgeon has said that there are no surgical options, a second radiologist looked at the MRI and feels it is scar tissue. Permanent nerve damage according to EMG. One neurologist feels that I have a "plexus" which simply means that my nerves don't innervate like the dermatone chart shows. This may explain why I have pain in BOTH buttocks, legs and toes. Right side is still worse than the left but it is definitely the very distinct rotten nerve pain that so many of us deal with. I saw another neurologist last week and he also feels it is scar tissue. He wants to review all my MRI's himself, he listened for 45 minutes while I told him my "story" and took notes. He wants to come up with a plan and will call me. He may also recommend the spinal cord stim and if he does that will be 4 doctor recommendations for the SCS. I may have to try it even though I am very nervous about it. He also may offer me a long acting pain medication but since I am so sensitive to ALL meRAB, finding one that I will tolerate may be a challenge. He also may Rx Topomax although the Lyrica and Neurontin didn't work out for me.
Had to take my Mom to the ER today....my daughter found her at home disoriented, drooling.....either a stroke or her diabetes is out of control....we'll know more tomorrow. My aunt (Mom's sister) having surgery for colon cancer on Tuesday. Lots of other issues, a lot on my plate right now and suffice it to say the pain continues to run my life even though I try to put it in the background. So I'm waiting to hear back from the neurologist with a plan of care. Bottom line is the pain is mine and will always be a part of my life. Hard reality to face.


Deb
 
Deb,

I'm sorry to hear you're going through a rough time right now. Try to hang in there and take it one day at a time. I will keep you in my prayers.

Best Wishes,
Scrappin'
 
Hi Deb,
Sorry to hear your pain is no better. Maybe the SCS is the answer for you. I can understand your being nervous about it, but a lot of people have gotten good relief with it. If I remeraber right, Shawley said it didn't help his back pain much, but it was a lot of help for his leg pain. If 4 doctor's have recommended it, maybe it's worth a try.

I hope your mom stabilizes quickly and that it's not too serious. You do have a lot on your shoulders right now. Are you able to take time to stop and rest as you need to? Hang in there, Sweetie. You're a strong person and you'll get through this, as you help family merabers with their neeRAB while you're in such pain yourself. Keep your chin up, and please let us know how it's going.

Take care,
Emily
 
Im so sorry Deb i hope they find out something i know it is hard thing to hear i almost fainted when i told the doctor about the leg pain i was having and he had no emotion when he told me it could or could not ever go away and i would die if i had to keep this pain. I do hope they figure something out for you.

And i hope it is nothing serious with your mom the lord knows you have enough with you own help to deal with. Always putting your pain in the background is not easy. Im praying for you hard every day!!
 
Deb,
I agree a lot of your plate at the moment. I am so sorry you still in so much pain and the worse part when they tell you to have to leave with it.
Have same experience and as hard this is, I learned we are stronger than we think and our bodies adjust to whatever life gives us. Like they say: life gives you lemons - make lemonade :)
I make a lot of lemonade during last 3 years so if you up to, you can come and we can drink a lot of lemonade. LOL

Honey, I hope your mom and you aunt will be OK. Unfortunatelly our parents get older and a lot of things may go wrong. Will say a prayer for them.
Take care of yourself, don't give up, we all have so much to leave for, right?

And remeraber, we are here for you 24/7...
((((((Deb))))))) and all the best to you and family!:angel:
 
Hey Deb I sure hope you get to feeling better soon. I hope your Aunt's surgery goes well and also that your Mother is doing better. I just wanted you to know that I will put you and your family in my prayers. Don't forget to take care of yourself too but I know that sometimes that is hard.

Take care
Linda:angel:
 
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