Further post op
 

Thanks for your sweet wishes. I guess I can say I'm better. I've weaned myself off all meds except cymbalta which seems to take a slight edge of my rsd and occasional Percocet for the bad days. I've been walking like crazy and trying to control my fear of returning to work in four weeks or I'll lose my. Health insurance. I know im not ready but have too. My pain is wicked. I cannot touch my thoracic area where surgery was because it feels like razors cutting me and burning. The tenderness follows the dermatomes around my front. I'm not jumping the gun whether my rsd has spread and just waiting to see if it's a nerve issue that will resolve from surgery. My pain seems to start mid back and travel down to my lower back, hips and front of my right leg with an occasional burning of my right foot. I don't walk very well but what can I do? I felt normal on pain meds and wish I could continue, but can't so I can go back to work. I don't know how I'm going to fake it this time. My forearms are raw because I place them on my thigh to help myself bend and stand back up. I don't sleep. Sitting at home is depressing and I'm angry at how my life has changed. I know what in for at work and I know I'll suffer but that's life right? What I wouldn't give to go backpacking again or ride my bike or feel the full touch of my husband or even a real hug. Today I wish for us all to win the lottery to receive the care we deserve, take away our worries and allow us to live life comfortably. The question is . . . Do I take away my physical pain through meds which will cause me to suffer emotionally by feeling like a burden and becoming more depressed by being limited or do I endure the physical pain to make myself believe I'm apart of this life? So stupid, all of it. In my opinion, healthcare is still in the dark ages. I hope one day I reach the point where I'm simply greatful that it's not worse and that I'm alive. I'll welcome that day. For now I wait to see what crappy thing will happen next. How sad to be so aware, sucks!

Mjg
 

Sorry you are having such a rough time. Your area of pain is very similiar to the pain I had 5 1/2 years ago. The waist down the right leg, etc. I had spinal fusion of L4-5 and a laminectomy at the same time. There was a neve in that area that was badly crushed. (The doctor said he had never seen such a red angry nerve like that before). I'm sure the nerve caused additional pain.

I do not RSD, but do have PN. In my case, eventually both legs and feet were involved, along with the spine pain because I developed PN. About 3 years ago, I had bladder surgery (Cystocele). I think that added to the extra pain of the PN. I like you, use my elbows/arms to take pressure off the spine area and back of the upper legs. I am on narcotic meds to get thru the day. Don't like them; but without them things would be even more painful. Fortunately, they do not seem to affect my mind. I do have some anxiety and take vallium as well. Not sure if the anxiety is caused by meds or pain.

The biggest side effect of the narcotics is the constipation. I should have been more cautious and taking, if needed, more often, laxatives instead of forcing. I do believe that led to my Cystocele surgery which caused the bladder to come down. Didn't realize at the time, this could happen.

I know this is difficult; but try to take each day without living days that have not happened yet. Just adds to the stress. I longed for the days when I was more active. Once I began accepting things as they are, my attitude improved, along with my negative feelings. I will keep you in my prayers.

(Gerry)

dear lee LOVE love love your last line
treated the same by my neurosurgeon
after 2 failed fusions cervical5/6-6/7
he is neck and neck with yours
so sorry
i got much going on
i'll be traveling across the river
into NYC along with my sister
looking for yet another neurosurgeon
who also had 3 or 4 surgeries
take care will write

Hello Mjg
 

I really hope your surgery goes well. I also hope the results are good so you don't have to worry. I would allow more recovery time that what was told to you. Any time you remove bone, to get to an area, there is some recovery time, and usually longer than just two weeks. Take it easy as long as you can. I will keep you in my prayers, that this turns out OK. Ask your doctor about pain medications before you have the surgery if you can, he can also reassure you that he will keep you as comfortable as possible. I do wish you all the best. ginnie

9 months post op
 

Well here i am 9months out. Well, what can I say . . .i had to go back to work 3 months post op or lose benefits. Right before I returned I had nerve blocks in my ribs and my third in my neck to help rsd, eventually the blocks took and I went from a pain level of 10 to 2-3 and weaned off meds. After about two months symtoms began increasing. I'm in so much pain again plus my rsd has spread to my left side. My thoracic back pain is fierce, same as immediately after surgery. I get five more blocks in two days, wish me luck. My spirits are low and my hope lower. I hurt from the belly button up, I feel like I'm on fire cuz the pains burns. I still can't touch the surgical area and the thought is my rsd spread there too. Does it ever stop? I had a taste of better and then it disappeared. Some kind of life

So you get any relief from the meds they use for peripheral neuropathy? I'm wondering if Topamax or Lyrica will help? Lyrica never helped me before, but when my doctor used it along with the pain medication Opana, WOW did it work!!! It took away ALL my pain, plus along with Topamax, all the burning, zapping pain was gone too! It's been almost a miracle.

I've had sciatica for 26 years (yeah, you read that right) and that pain is gone as well !!!

I'm just wondering if this combo would work for you as well -- Opana, Topamax and Lyrica. It's just been a life saver for me. After all those years of no pain relief, and now ALMOST TOTAL relief -- I want to celebrate! LOL

Talk to your doctor and see what he says -- unless he's closed minded and doesn't like suggestions about meds. :( I hope that's not the case.

God bless my friend. I'm behind you 100%. Hugs, Lee

1 1/2 years post op
 

How time flies. I was looking up some things and came across my post so I'd thought I'd update. Since my last post I actually went through t5-10 bilateral radiofrequency which sent me to the emergency room for out of control nerve pain. Nightmare. I've also been dealing with my rsd, tried and failed all treatment options my insurance would cover including an scs for both arms. No luck. My back is awful. Still can't touch, having recurrent pain from prior to tumor removal in same spot. Rib and Stomach pain, tingling etc. I'm sitting a lot more lately. My MRI six months ago was negative so I doubt its a recurrence. I was off work again and recently went back to avoid losing my job. Not sure how I'm doing it, but still making it. So many people say they heal after surgery yet here I am. It s so frustrating. I'm assuming its the rsd. Who knows. Hope you all are definitely feeling better. If anything, my updates to these post are sad reminders that I'm no better.

Hi Mjg
 

Sorry you went through a proceedure that didn't work. It is awful to go through some of the stuff, endure terrible pain, and still get no results. Has your neurologist, talked about Ketamine infusions at all to you? ginnie

I'm so sorry to read this. :( You've been thru so much. Did you actually have the SCS implanted and removed? :eek: I went thru that too, and it was miserable. It left a bunch of scar tissue in the thoracic area, which is driving me nuts.

Like you, it took me a long time to heal from surgery and get back on my feet. It was mserable. I will NEVER go thru that again -- ever. I will never let them touch me again. :mad: I'm disabled due to surgery, darn it,.

I'll keep you in my prayers Mjg. God bless you and please take care. ;) Hugs, Lee