Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Hi Friends..

Thought I would let you know about my trip last Friday to the new neurosurgeon. I think I told you about the big surgery it would take with rods, plates and screws on the front and the back to try again on what didn't heal and the problems above and below that area. We did cervical CT and scoliosis x-rays.
I don't need anything done in the Cervical Area.
Cheer for all good things. The scoliosis is pretty severe but he doesn't want to fix it yet. It would be a totally different surgery.

He said that with all of my other problems that he thinks it would not be in my best interest to have the huge surgery. He said if I reach the "have to" then he will certainly do it but right now he wants me to try to handle it with pain management. He said that it does not matter how much surgery he does, I will always hurt. He said that you can't have arthritis as bad as mine and not hurt. I don't much see any benefit to the surgery since I am still getting around. Probably look like I should be quacking as I go down the sidewalk.

I have been getting my thinking under control and am just going with "I am fine" thinking and behavior. I am on some new pain control meds and going to PT and getting ready to get back in the pool several days a week and live with it.

So....If I ever say more than "I am Fine" then you had better put a patrol out and find me because I probably will be in serious trouble. It has taken me the last week to think it out and know that I am not going to get better even though I have really known it for a long time. To have a well-known neurosurgeon to tell you that, it was like a zap that it is really true.

I am ok. I hurt all the time but with the new meds, it is doable. I am being kind to myself and resting when I feel the need and not doing things to hurt myself.

Thank you for the messages and concerns. You are the greatest group of people I can even imagine.

Hope you are having a good weekend.

Hugs.

I shall pop over and give you a back massage...............keep an eye open for my arrival...........can you lend me the bus fare please....

Gentle ((( Joyce ))).

Sometimes it just gets too tiring to wear your pain around with you all the time... How good would it be if you could get a few hours a day painfree and nominate *which* hours they are?

I guess even though we ARE realistic about the life we are living, we always hope that someone, somewhere will say "hey, I can fix that!"

To hear the plain hard truth is never a joy - it just serves to remind us that although we should never give up hope of feeling better, in reality it is a daily grind with more lowlights than highlights.

I just keep telling myself "find the joy in every day" - I know you do this already but some days it is hard to spot the joyful bits.

Today, I went for a walk in a bushland area that I had been told was good for the ground orchids that are starting to come back to life after their winter sleep. I went with my good friend and we enjoyed the tramp, the company, the sunshine and the many treasures we spotted along the way.

In order to do this, I took the Big Gun pain meds at lunchtime before I set off, wore my super comfy walking boots (which are STILL on my feet 6 hours later because my feet and ankles hurt so much less in them... )and I took my Nordic pole, so I could get up from sitting, lying and crouching to photograph those little beauties.

Very proud of myself that I didn't have to ask her for a hand up *once*! (although it would have been graciously given. )

Keep on trudging along the Path of Limited Options and remember to stop and enjoy those momentary glimpses of dappled sunlight.

Very gentle hugs, Possi.

We strive to find a way to make it better, look for people who can do it for us, only to find that it isn't really a good idea sometimes. Then it's time to sit back to think about it, as you have obviously done, and say it's enough for now. Your grace will help you. Glad they adjusted the meds and it's helping. And glad you got to see a distinguished doctor who is tops to evaluated the whole thing.

Hello Possi,

Thanks for update... hope you continue to be fine and we do not need to send out any patrols.

Best to you,

Tim

Hi. I know about surgeries and pain control meds. I too am on new meds and the difference is night and day. I have times now where Im sitting up and walking a bit which you can't do if you are in very bad pain. I need another shoulder surgery. I go to the Cottage Care Rehab hospital in Santa Barbara so Im lucky there. It's true your pretty much always in pain with this disease but every once in a while when you sleep or are getting used to a new pain med there are periods of relief. Nice to meet you and wish you the best. Swimming is so good for AS