Update on back surgery, other issues.

[Carolina]

Dearest Sjogren's Angels,

I have recovered from the back surgery (no 'hardware' installed), and now am trying to recover both my physical strength and my emotional well being. 

The surgery accomplished the elimination of the sciatic pain that struck me down in mid July and kept me immobilized.  For that I am completely grateful.

The Surgery was on October 11, so now here we are in early November and I am just getting back to moving around.  I've lost so much strength that it will be a long process of recovery.

And I have had two bad falls SINCE the surgery, related to my 'seizure-like episodes and to my PN.  So fear is a great part of my current experience, sad to say.

And any setback I have now would make my recovery that much longer.  The sudden onset of my back related pain was a real shock, I think.   We all know that anything can happen at any time, but experiencing that first hand is demoralizing.

So, I will keep you posted.  My hope is to work towards strength and increased mobility.

Hugs,  Elaine

[Joe S.]

heal well!

[warmwaters]

Thanks for the update. I was very curious how you were doing.  I'm sorry to hear about the falls.  I hope you can gradually regain your physical strength. Mental strengths you have in abundance.

Hug heading your way.

[Carebear]

Wishing you increased physical and emotional wellness, Elaine.

[SjoGirl]

Oh Carolina, so sorry to hear about your ongoing challenges. Fear of falling is a significant issue in and of itself, it really impacts your quality of life.

Do you use a walker or other assistive device that could help keep you from falling?

[Carolina]

Dear SjoGirl and all who responded so kindly;

Yes, I use a rolling walker, even in the house.  When I have my 'seizure-like' episodes, however, I just collapse, walker or no walker.  I even broke the wheel on my rolling walker, in one of my falls.  I don't exactly pass out, or rather the loss of consciousness is so brief that I don't realize that's what has happened.  I let go of the walker and fall, often backwards or to the side.

I've ordered an alert system to wear on a lanyard around my neck.  My husband works in our basement on projects, and wouldn't know if I had fallen. 

If the episodes don't resolve with my discontinuance of Gabapentin, then I will start another anticonvulsant specifically used for my type of seizure-like episodes called myoclonus.

My small fiber neuropathy is driving me crazy now that my gabapentin is down to 9 mg a day (from 3600 mg a day).  right now my nose itches so badly!  Sigh.

But, one keeps on going, or trying to go, right?   

I love keeping up with all  of you, and read your posts so often.

Hugs,  Elaine

[quietdynamics]

So good to hear that you are healing and relieve from the sciatic pain.
Pretty intense not being able to sit, lay down without pain.. so that is done, Great!

But, now still falling.. oh no!
And we do not bounce like when we were children.. " I get knocked down, then I get up again. Nothing is ever gonna keep me down" (song my son used to listen to when young).
Well, we don't get up again. And can have other problems with a fall beyond breaking equipment.
There are anti-seizure meds that can help with "seizure-like episodes called myoclonus"
I take a combo of 2 anti-seizure meds to manage "events" I have experienced, so there is hope.

[Deb 27]

Carolina, I am glad he surgery was successful. So sorry to hear about your falls. Have you thought about trying a wheelchair until the monoclonus settles down? The last thing you want or need is to break anything or really hurt yourself falling.

[irish]

Caroline, Glad to hear your surgery went well. However, I am really sorry to hear that you are having other issues. It never does let up does it. People wonder why people with chronic illness don't have a social life, it's not enough that we have the chronic fatigue, but all the ailments take time to treat and deal with during the course of a day and our hours run out. Good luck to you and hope you fell better fast and can keep from falling.Irish

[Dawnmist]

I'm really glad that the surgery went well for you. Best wishes for a speedy and safe recovery.

[Jenny]

Carolina, so glad to hear your back is doing better, but it's terrible hearing about your seizures. I agree about using a wheelchair for a while. Besides other dangers, I'm sure it doesn't help your back when you fall.  Prayers for you.