5 months post op

[Deulley87]

Just a update :) I still don't feel as if surgery ended up helping, none of my symptoms left or improved, and some are getting worse. I let my neurologist know, and he has ordered an mri, so I should be doing that in the next week or so.

On a side note, most of the surgical pain is gone :) I still get a stiff neck, but see that being a side effect for eternity,lol. I do neck stretches several times a day to combat it.

Just felling mildly defeated, knowing there's not much more to do.

[frankie_rush]

I am very sorry you are feeling this way.  I was like you, I had a ver big syrnix.  Mine was from C2 to C7.  I didn't have any numbness or tingling like that until after surgery.  I lost all ability to walk and control any part of my body.  So basically learned to do it again.  It was all because of the nerves.  I will explain it the way it was explained to me.  Your nerves is like a river constantly flowing, over the years your syrnix has been growing without your knowledge.  The normal ways it flowed was blocked so it found another way to go.  With the blockage being unblocked to some extint it is learning a new path again, it is a old path but a new one to them.  So when the flowing of the new path again since it has been blocked for so long, that is where the tingling and numbness comes from.  At first mine would pulse so hard it would hurt like somone was hitting me with a sledge hammer.  The doctor gave me gabapentin and that easied it so tolerable.  It has been a a year in July I am off the meds know.  The tingling is just that ever know and then.  But doc said it could take up to 2-3years for the nerves to heal right and after that is probally be the best it is going to be.  I am just very grateful that I am able to do everything I could do before with some exceptions and play with the grand baby.

[selmaS]

  All NS's do the MRI's at different intervals and like u said many times it is done b4 6 months if there is an issue....but clearly u have had one since surgery so I was surprised u did not have one sooner.

Praying u get answers soon,

[Deulley87]

I have not had a post op mri. i had surgery on april 18th. i was told i would get one at 6 months post op. unless there was a problem.

My NL ordered a brain mri, he thinks I'm having issues with some nerves in my head, so he's starting there first.

I mentioned about looking at my syrinx since it's my arms that are bothering me, but of course no one wants to listen to ME. Bu if he wont do i, I will find someone who will.

I still want a head mri, because I think he is in the right direction with what's going on in my face.

There are no specialist in my area, and I cannot travel far. So I'm left with my own research and opinions, and going from doctor to doctor.

[selmaS]

  Do u know if it shrank ne?...it could be the syrinx causing the issues.....I am sure the MRI will indicate what is going on.

Post op I felt wonderful, and as time went on some symptoms did return....but again not as much as pre op and as time went on I felt more and more benefits....

[Deulley87]

None of symptoms ever left, they were masked by surgical pain and meds. Yes I have a syrinx from c-6 to t-2.

[selmaS]

  Hmmm I know at 3 months I got some symptoms back, and got depressed thinking was it worth it, but I found with each yr annv  from surgery I had more and more benefits that I did not notice as it was happening,

I pray it is just time and u will feel better,....but best to get the MRI and see what might be going on.,

Did u have a syrinx?

[Deulley87]

Yes Selma all other  related conditions were ruled out pre op.  Thank you, will update on mri results as soon as I find out.

I say I feel like Im getting worse because in oct/12 I started to get a numb spot on my face. Since then it has grown to almost half of my face.

And pre op from my hands to my elbow would "fall asleep" at night. In the last 2 months or so it has moved all the way to my shoulders.

Taking those things out I feel the same way I did pre op :(

[selmaS]

  Hi thanks for the update, sorry it was not better news.

May I ask, did they rule out all related conditions?....

The other thing is u will have symptoms return as u heal, but they should not be worse then b4 or new....so u may have something else going on.....

Let us know how the MRI goes.

((hugs))