Well, this is very strange. Had my appt. with my optha-neurosurgeon as I have optic neuropathy in amongst my other health issues that we don't discuss here on this forum. She found that my spinal fluid pressure was high where it hasn't been in the past. I asked if it could possibly be related to having the two SCS implants as that is really the only thing that's changed since we last met. She said, let's see. So we measured my spinal fluid pressure with them both on, and then I turned them both off, and we re-measured.

When they were both off, my spinal fluid pressure went back into the normal range. Weird, huh!!! Then we did another experiment where I turned off the cervical remote and left the lumbar remote on. When she retested me, my spinal fluid pressure was still high, so looks like the culprit is the lumbar stimulator, which, unfortunately, I have to leave on 24/7. So now I have another medicine added to my daily regimen to help offset the increased spinal fluid pressure. She said that if I need a higher dose of the medicine I'll know because I'll start getting headaches and finding that I have a harder time reading things close up.

I told her that I believe my nausea is coming from my neck area and she said that is very possible and talked about the "vagus" (sp?) nerve, so I know I'm not crazy in that respect.

I put a call into my pain mgmt. dr. to let him know this is happening and to see if it is a problem. Seems like one cure can lead to other problems

Fiona what are the symptons that you are having with this increased spinal pressure? IS it just the nausea? Its interesting to know that though. Do you mind me asking what is optic neuropathy and how do you suffer with it?
Gosh I hope that you are not suffering with this added sympton .....its not good if you cure one issue and have another

I realize it's not related to back/neck pain, but since you asked: The optic neuropathy (in my left eye) was discovered when I was having a lot of sinus infections and was going through pre-surgery testing for the eventual bilaterial frontal sinus obliteration I had Feb. 2009. My sinus problems were what led me to being diagnosed with a rare Primary Immune Deficiency Disease (genetic based) and are something I've been struggling with for years, in addition to my back/neck pain.

Neuropathy can happen in any part of the body (legs, arms etc.) but this optic neuropathy was a result of my serious sinus problems and recurring infections. I do have neuropathy in my legs and arms so if may just be all part of the picture, I'm not sure. But I know the sinus stuff played a big part in bringing it about. Before the sinus obliteration (they only removed the two sinuses in my forehead), I'd had 8 sinus surgeries. This was what made my ENT suspicious about my overall health, was referred to an immunologist, and was diagnosed with this immune deficiency disease.

I have to give myself an infusion, every morning for 3 hours, of other people's antibodies as my body doesn't make certain antibodies (ie, I can't fight off strep, staph, pneumonia). It's actually taken out of blood donations, so when folks give blood it's going to multiple uses. It's a very expensive disease to have...costs my insurance about $6,000 every month and I'll have to give it to myself for the rest of my life as it substitutes for what my body cannot naturally produce. There's a lot of auto-immune stuff that runs in the female side of my family, unfortunately. My mum died last year and my sister preceded her in death by 6 weeks, so as my husband would say I'm not one gene pool you'd want to swim in

At one point they thought the sinus infection was going to make it into my brain so I got the emergency frontal sinus obliteration to make sure that didn't happen. Was a long, horrible surgery and that post-surgery makes this SCS post-surgery seem like a cake walk (won't go into the details as it's pretty gorey how they do the sinus obliteration.)

As a result of all this, I have to periodically see my optha-neurosurgeon to monitor my left eye and when she did her testing yesterday that was when she discovered my right eye is having problems due to this increased spinal fluid pressure.

The only symptom I'm having is having a hard time focusing with my left eye. I didn't know there was anything wrong with my right eye until the tests yesterday. Still waiting to hear from pain mgmt. dr. and am hoping they don't decide to take the SCS's away from me We'll have a big fight over that one!

wow.
I am speechless I had NO idea you were facing all this on a daily basis!

It's unbelievable what I hear some people go thru, but this pretty much takes the cake.
You bring SO much to this forum - it just wouldn't be the same without you.
The fact that you are able to stay positive leaves me dumbstruck.
But you go way above THAT even! You maintain a sense of humor to boot!

You've got a dimension of strength like I've never seen.
You are one special lady.

Good grief Fiona. I too am speechless it just puts everything into prospective. You know people often say to me how unlucky I've been over the years with my back problem and it's debilitation and managing my daughter with Special Needs on top of all that. I say ah you know it's all relative. But it could be a lot worse etc. Mine isn't terminal. I can get about. I've a good sense of humour etc. But Fiona after reading your amazing post I'm dumbfounded. You have soooo much going on in your life and yet you come across so strong and positive I do sympathise also with you losing your mum and sister. Thats very hard. I lost my mum some years back and boy is that hard. I hope you aren't too uncomfortable with all you have going on and you make damn sure those scs's stay put. Ya hear

Thanks for the kind words. My faith is what has gotten me through all this, along with a very wonderful husband.

As far as the SCS remotes...they'll have to pry them out of my cold, dying hands

Fiona, wow! I just cannot believe everything you have been through and that you are going through every day Everyone is so right that you are so strong and such a great positive person that adds a lot to this group I am sorry to hear about the spinal fluid issue and I am anxious to see what your pain doctor says. I do know about auto immune diseases because my mom has them and now they are finding out I do too. For her treatment she has to do injections all the time to try to raise her white count, it makes me so sad to see her go through this and I constantly worry about her as she is exposed to many diseases and germs through her job Anyway, I am so very sorry that you having additional problems which might be because the stim. You have always been a great friend to me and I hate to know that you are dealing with all of this I am definitely keeping you in my prayers and I hope that something will be done in order to give you pain relief and not cause any of your other diseases to get worse. Take care and thank you so much for all your contributions to the forum (as well as all your great support and advice you have given to me)! BIG'sTara

I am very intrigued by this concept. I had never even heard of this before....but ever since Fiona posted this thread, it makes me wonder about a few things and whether this may have something to do with this 'pressure'...

Do any of you feel a 'tightening/pressure' feeling when you first ramp up the unit? When I turn mine completely off for awhile - of course the burning neuropathy immediately shows it's ugly existance.........so I turn the unit on....sllooowly and when I FIRST start feeling the stim kicking in, it's like there is a pressure issue, and then after having it on for awhile, THAT's when the back pain issues kick in.
Like I've said before, back issues never were an issue in my case...
But this 'pressure/grabbing' sensations ends up taking a toll on my back.
I WONDER if this has something to do with this 'spinal fluid pressue' thing Fiona has brought up.

I will certainly ask about this at my next appointment.
Jackie, does this sound like what you may be dealing with as well??
Maybe several of us can ask about this issue at our Dr's appt's and compare notes.....

I left a message with my pain mgmt. dr. a few days ago about this and so far have heard nothing from his office. Will try to call again today to get some kind of information about whether this is normal.

I have what I would call a 'pulse' in my stomach/hips when I have my stim on at a certain level. And I have to turn it down slightly. Gosh Rae if its affecting your back you should definitely check it out. I must say for the past couple of nights I have that HORRID burning back in my legs even though Ive my stim on. At times I thought was it actually aggravating the burning......or maybe just having an 'off' day!