On meds. for increased spinal fluid pressure
 

As I mentioned previously, when I saw my optha-neurosurgeon we discovered that when my SCS remotes are turned on, my spinal fluid pressure goes up. She gave me a rx. for naltrexone, but I held off on taking it as I didn't want one more med. to take. Well, I've had to break down and begin taking it as I've been getting bad headaches, feeling dizzy, etc. Both she, and my pain mgmt. dr. who installed my two SCS's, are monitoring me to see how things go. Seems like one fix leads to another issue???:confused:

Aye Fiona, in your case it seems so. WHen did you fist notice this?

Hmmmm.....
 

Fiona,
So sorry you are dealing with this.... I'm hoping this is something that will subside after your body completely adjusts to these units.

When you first brought this up, I was asking around about 'spinal fluid pressure' cause I had never heard of this....and someone from the hospital I know said she has dealt with this personally and she has a friend who actually had to have a shunt placed in order to drain excess spinal fluid from her spine into her stomach.

She said It's generally not that big of a deal so hardly gets discussed. Years ago her neurosurgeon discussed with her how we all have a sacral "pump" that keeps the CSF flowing through our spinal cord. He thought that was a problem she was having and it was quite interesting to learn about.

Does any of this lingo sound familiar in your discussions with your Dr?

Saffy: Up until recently, when the headaches,dizziness etc. started, I didn't even know I had a problem. It was during my reg. appt. with my optha-neurosurgeon last month that she said my spinal fluid pressure was high and that was when we played around with my SCS remotes and noticed that when they were turned off my pressure went back to normal.

Rae: I had a spinal tap done a couple of years ago (for another medical condition I have), and the pressure came back normal. The only thing I know about increased spinal fluid pressure has had to do with glaucoma, up until now. But looks like there's some relation between having my remotes on and the pressure being increased. So much doctors just don't know, or maybe it's that we have weird bodies that just want to keep us guessing:eek:

By the way, need to make a correction on the medication I've been given for it. It's called Neptazane, NOT naltrexone. For some reason the increased pressure has really kicked in in the last few days. Rae, maybe it has something to do with my getting further along in the healing process as I have noticed that I've been needing to turn down my lumbar remote lately. Having it at it's usual level has been causing me to have leg cramps, so sounds like it has to all be tied in somehow.:confused:

Scar tissue perhaps?
 

For some reason I always like to point the finger towards 'scar tissue' issues.... I'm pretty good at 'blame-shifting" :o

I also noticed the need to turn down my amplitude setting when I got to the 6 month mark in my healing process......which actually is good because now I don't have to charge quite as often......

I have a follow up visit coming up in a couple of weeks.....I'll make a list of Q's regarding some of our discussions and see what I get.

I just can't help but wonder if it does have something to do with the ever-changing scar tissue as it forms.....perhaps this could be the culprit that is putting undo pressure in your spinal fluid and the reason it goes up when your units are on is because of the electrodes communicating with the nerves in the area? :confused: I dunno......
But we'll sure keep asking questions.......

I've noticed in the past week or so that the sensations I'm feeling are more confined. I'm hoping that means I'm starting to scar in. It's definitely different and like you say I also seem to be turning my stim down moreso than up especially when I'm Lying down or in bed. :)

Yes, scar tissue can also cause a lot of problems .. that's part of mine ... the scarring is wrapped around nerves that are to dodgy to operate near.

Oh well .. it's a sunny day .. and Rememberance Sunday ... I will be joining folks down at the memorial in the park this afternoon.

Go in for my "tweak" on Weds., so hoping to see the dr. also. Maybe I'll get some answers about this increase in spinal fluid pressure.

Fiona,
yes i sure hope you can get some answers on this! We'll be anxious to see what you might come up with......
....man, this forum is becoming SO very well-informed, I'm certain we'll have the universe figured out in NO time! :cool:

Saffy:
Is Rememberance Day similar to our "Memorial Day" here in the states?
Well, please accept my blessings and prayers on this important day as you observe it at the park this afternoon :hug: I'm so glad you have a beautiful sunny day for this special event!

Rae
:grouphug:

Got tweaked and is helping. Was silly and tried to drive 3 hours and sure am paying for it. Hopefully just too soon as I'm only 3 months post implants.

Dr. came in and talked with me about increased spinal fluid pressure. He's baffled. He said he could understand the reasoning better if it happened when my stimulators were turned off, as that would mean it would be something to do with the implant being inside me. But it just happening when they're turned on, baffles him. Also, the fact that it's the lumbar stimulator that's the real culprit (doesn't happen when cervical stimulator is turned on), really baffles him. He said it'd make more sense if it was the cervical one causing the problem.

He said he's presenting my case at the national conference soon and he's planning on talking to others to see if they have had similar situations with their patients or if they have any ideas as to what is going on. He said he doesn't want to take them out and I said I don't want them taken out. He said he's concerned about my eyesight and would call my optha-neurosurgeon and discuss things with her. I told him I'd rather lose some of my vision that go back to living with that pain. So, we'll see how things develop. I go back in a month unless I need to be tweaked sooner.

Forgot to ask when the national conference is going to be held.

Fiona I do hope you DONT lose some of your sight. I can only imagine how you must be feeling at the prospect of him even considering taking them out:eek: So glad to hear you have been tweaked and its been helpful.
Im hoping to hear before Xmas whether I will have another session. I do feel that the leads are scarring in somewhat as the sensation is quite localised compared to when they were first implanted......so Im hoping my next session will be another improvement :)

Concerned About Our Fiona!!
 

Haven't heard from you in quite awhile!

Please check in dear Fiona!!
My imagination is starting to get the best of me :eek:

Was your Dr able to present your case in the National Conference?

I PRAY you are getting some answers!
Please let us hear from you!

Rae
:hug::grouphug::hug:

Fiona!!
 

How can I have gone on and missed this issue with which you are dealing? Oh my goodness!!!! This is VERY concerning, and I am praying for you in this situation. I can understand you do not want the implants removed, and hope your doc can get real valuable input at the conference. The issue about a risk to your eyesight is so frightening! You are for sure on my list!

Prayin,
Mark56:hug::hug:

Fiona,
 

Hey, my friend!

I know this thread is a couple months old but....
I'm up late and was introducing a new member to the CSF Leak forum and I was reading some of the testimonies over there...
I was amazed at what some of these folks have to deal with when they get a puncture in the dura!

I remember that when I had my implant, the medical team made it known that it is (rare) but possible to get a CSF leak while getting the leads inserted.....

I ran across this particular thread that jumped out at me and I couldn't help but think of all that you've been going thru. Do you suppose it could be possible that you've had some sort of puncture which may have caused some sort of CSF leakage? Ok, not only that, but look at what this guy is saying....
I copy/pasted a small portion of his post in which he was explaining about a csf leak that was inadvertently fixed on it's own.....but 'PRESSURE' built up....
well, here - read this....
>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>> >>
Here's the REAL intereting part: the plugs apparently moved mucosa over the leaks and the leaks stopped! It's been a month and half w/no leaks, but the pressure behind the leak loacation is very uncomfortable and the lumbar punctures didn't help.... >>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>> >

I know this must be a complete shot in the dark, but I thought I'd run it by you........ here's the whole post :
http://neurotalk.psychcentral.com/post696271-17.html

Just thought I'd throw this out there, especially since he was talking about this 'pressure'....heck maybe some wierd fluke such as this could have happened ?

Anyhoo, I hope you are doing well....
I better shut my brain down before I convince myself the answers to the universe are right at my fingertips.....ha :thud:

Caring
Rae
:hug:

Thanks for the info. Very interesting. When both spinal taps came back normal, my opthaneurosurgeon put me in the "come in and see me in a month" category so I don't see her until the 28th. I'm very curious to see what she has to say. I'm taking it as a good sign that she isn't too worried anymore, as I could use some good news about now...but on the other hand, what's up with my eyesight going wierd???

By the way, my dr. did present my case at the Nat'l. Neuromodulation Conference, first part of Dec. in Vegas. He has this 4 foot X 6 foot poster on his office wall that discusses my case, has photos of my incision being done, etc. I offered to autograph it for him but he doesn't like his posters being messed with.

I'll let you know how it goes with my opthaneurosurgeon.
Stay tuned...same Bat time, same Bat channel...

Hoping
 

Here's hope your opthaneurosurgeon will be on top of this issue. Having your eyesight go weird has to be frightening!

Prayin,
Mark56:grouphug:

Yes, let's certainly hope this upcoming appt sheds some light.
I'm sorry about the eyesight issue! Do you get headaches ?

Am glad to hear that your case was presented at this conference. This speaks volumes. It's good to know that these conditions are taken seriously enough to bring to the attention of other specialists. To me, it brings a sense of 'hope' and puts a positive twist in the mix.

I pray that all this frustration you are facing will come to an end!

:hug::grouphug::hug: