[fionab]

Have been gone for some time. Seems there's so many unread threads that it'd be impossible to read them all, so decided to just post a new thread.

Have gone through two spinal taps lately to see if my two implants are, indeed the cause of my increased spinal fluid pressure. First spinal tap done with implants being off for a while (that spinal tap was painful!); second spinal tape done with implants having been on for a while (that spinal tap much less painful!). Conclusion: implants not the cause. Good news, because my neurosurgeon said he would insist on the implants being removed if they had been the problem as he would absolutely refuse to put a shunt in to drain off excess spinal fluid due to my other health issues.

So, back to opthaneursurgeon Feb. 1 to try to figure out cause of increased spinal fluid pressure.

Good news is I think I finally have the lumbar SCS programmed for good pain relief. Bad news, having a heck of a time getting pain relief with the cervical one, which is odd because at the beginning the cervical one gave me great pain relief right from the recovery room up until about mid Dec.

So, go back in to get cervical stim. tweaked this Thurs. Have been in 10 times since aug. to get tweaked and getting rather fed up with it all, to be honest. Have had to resort to pain meds. frequently which makes me run for the prunes again (no pun intended).

Have not been doing much what with Winter and all, so hoping that the pain reduction I'm getting in the lumbar area will be enough when things pick up in the Spring and I become more active.

Hope everything goes well for your revision, Rae. Talked to the rep. about lead migration as I wondered about that since my cervical coverage had been so good up until mid Dec. and was wondering if my leads may have moved. He said that even if they had, it wouldn't mean a revision surgery. He said it depends upon how much they move, and even if they do move, they can often still tweak them to get better pain coverage. So some migration seems to be no big deal as long as they can still tweak them, so it sounds like it's when they lose the ability to tweak them that a revision is needed.

Feeling sore so gonna log off. Didn't intend to type so much but you know how it is once you get typing

[Mark56]

Blessings on you for making your fingers type a note to let us know how you are! Spinal taps?!? Oh my goodness, serious and painful stuff, but glad they found your stims are NOT the issue. Prayin that your doc can find and treat the issue for you!

I have sorely missed your presence on here and am leaping for joy [well, maybe not leaping, that is not OK to do] but.... well..... figuratively, at least I can and while also .

May your tweaking reproduce the cervical pain relief you were experiencing before things went haywire.

Prayin and thrilled to see you,
Mark56

[vannafeelbettr]

Sorry to hear of the difficulties with the spinal fluid. EEK! Glad to hear it's not the implants (hope the cause is found). I remember having so much tweaking for my cervical; more so than my lumbar. I finally figured my problem with the cervical was the stimulation at the back of my head was just too unpleasant. I was thrilled, upon telling this to the rep,to learn that there were separate leads that went down my arms than the ones that went to the back of my head. She 'disconnected' the leads from the back of my head off my programs. and with that, chose totally different programs altogether.

Hang in there.... hopefully they will get your cervical recipe just right for you soon.

Thanks for dropping in with an update!!!

Vanna

[Rrae]

I was SO happy to see you posting!
I think it's a pretty unanimous vote that you've been MISSED very much!


Our little world here is just not the same without you!

It astounds me what you've been thru!
I was holding my breath as I read Vanna's post regarding her cervical tweaking. It sounds like quite a hopeful nugget she shared! Do you think this could perhaps be something that might help in your case??
Oh Lord how I hope so!
I've been praying for you and was so grateful that we connected via email awhile back. I had a gut-feeling you were going thru a pretty rough time and my imagination started going nuts!

Thank GOD your stims aren't the culprit in your spinal pressure!
Imagine how heartbreaking it would have been to have to say goodbye to them!
But what IS the cause! I really believe you're gonna get answers, Fiona....and soon! Your upcoming appointment is a very important one.
You know you've got plenty of prayer warriors here......
I'm just so very sorry for all that you've been thru.
Enuf is Enuf!

Guess i better sign off and get some rest for tomorrow.......eck
Thank you for your well-wishes.
Also thanks for sharing what your Rep said regarding lead migration! Very interesting! I think this is a subject that needs talked about more.....so thank you for getting a ball rolling there.

It really made my day to see you on here
Thank you dear one
Rae

Fiona its sooooo good to see you back on here again. And its wonderful to learn that your stims are NOT the cause of the leek!!

It does sound painful those taps you had, I darent ask what they do or how they are done! But Im so glad that they ruled out the stims.....hopefully they will find out exactly what it is and get it sorted out real soon


Take care and chat soon again

Jackie

[fionab]

Thanks everyone. Makes me feel very blessed to have such a "welcome back". I didn't realize that my presence was missed so much

One of my cervical remote's programs is separated into right side and left side, so today I'm trying to just have the right side on and it has helped alleviate some pain on the left side, too, so that's been a blessing. I've noticed that, for me, I get the best results when I can adjust both sides of my body separately (I have a lumbar program that allows me to adjust 3 areas separately: lower back, left leg and right leg) and that has been what has made the difference in getting better lumbar coverage.

Will see the rep. tomorrow and bring up what Vanna said. Always looking for suggestions and ideas. I'm at 5 months post surgery so suppose I should be a bit more patient but hard to be when it's back and forth, back and forth to the doctor's office.

Thanks again for the warm welcome!!!

[fionab]

Saw rep. yesterday. Have counted that so far, it was my 10th "tweak". He gave me a couple of new programs, but the one he wanted me to really try to use was so strong that I had a hard time driving home (yes, I drive with them on...have to), and a hard time just holding a pen and trying to write. Was a bad night, up and down, adjusting this remote then that remote. I had to adjust my lumbar remote more than usual to compensate for feeling like the energizer bunny on steroids Felt like I was going to vibrate out of bed!

When I got up this morning I decided I just can't handle the new program so have gone back to an old program for now or even just turning the dang remote off for a while.

I think I'll go see my massage gal and see if my cervical problem areas are muscular...maybe I'm wrong in expecting my SCS to help with this pain, if it turns out to be muscular, as SCS only handles nerve pain.

At least I have good lumbar pain relief so that's a blessing.

[Mark56]

Care to be taken in the strength of the signal and what it can produce in the nervous system. Recently I was experiencing a pain spike and I ramped up the signal so far to overcome the pain that I passed through parasthesia to paralysis..... the impulses just made it so I could not control the lower half of my body. No way could I have driven. Couldn't even walk. I dropped it down just to make sure the effect was only temporary while the unit was ramped up, and it was. So, I went to bed, ramped it up again and remained there all evening, took my supper there, the whole works.

Sorry you had to attempt driving home in that condition and that this whole thing isn't solving every problem. Maybe a good massage would be a help. I had many over time to just try to soothe the sore muscles.

Prayin for you for sure,
Mark56z

Oh Fiona how frustrating. The last time I had a tweak I got two new programmes and when I tried to use them it 'pulled' something in my tummy so had to give those up and use two of my old reliables......

Its true Mark cranking up those little blighters can really interfere with your nervous system. I too drive with my stim on (sSSHHHHHH) but like Fiona said it has to be done otherwise I cant function properly. I too have gone past the point of no return when Ive turned it up that I literally shake and panic that I cant get it turned down or off quick enough.....

Fiona I hope you are getting better relief now , you sure did have a lot of tweaks since you first got them in...Ive had 4 but alas last one couldnt do anything for fear of reducing my juice too much....


Jackie

[Mark56]

Originally Posted by Jackiey

Oh Fiona how frustrating. The last time I had a tweak I got two new programmes and when I tried to use them it 'pulled' something in my tummy so had to give those up and use two of my old reliables......

Its true Mark cranking up those little blighters can really interfere with your nervous system. I too drive with my stim on (sSSHHHHHH) but like Fiona said it has to be done otherwise I cant function properly. I too have gone past the point of no return when Ive turned it up that I literally shake and panic that I cant get it turned down or off quick enough.....

Fiona I hope you are getting better relief now , you sure did have a lot of tweaks since you first got them in...Ive had 4 but alas last one couldnt do anything for fear of reducing my juice too much....


Jackie

Hi Jackie- Just drive with care as you use your stim, because you don't want those blighters [interesting word] blamed for causing an incident. (Shhhhhh)

Mark56