upcoming injection & evaluation

Skeye,
I can understand your feeling both nervous and excited. I hope it at lesast identifies the affected nerve, but it must be a little scary to know you'll lose your vision temporarily. Still, your eye is getting worse now. I truly hope there's a solution out there for at least your symptoms in the near future!

I know for uncontrolled epilepsy they do a vagus nerve stimulator and it's an implant. I'm guessing this might be similar. I wonder if there's a trial like with the SCS. It's good at least options are opening up - slowly, but steadily.

I'll be thinking of you Wednesday. Will you be sedated?

(((((((((Skeye))))))))))))

PaLady

Thanks PA & Chutzie! No, I won't be sedated. My doc's just going to do this in the office. I'm not too worried about it; he knows what he is doing. I have complete trust in him. I just hope it is a success!

Skeye

Okay, so I had the injection done on Wednesday. Good news & bad news. The good: It helped! I got significant relief from the injection! The bad: It only lasted two hours (although I was told that it would only last 2 hrs from the get go). It forced me to use only my left eye for half a day & it confirmed that I have a significant tracking defect in that eye (a neurological problem) as well & that even just operating on its own/taking the bad eye out of the equation, it wasn't good enough to allow me to read normally.

Also bad, is that the procedure confirmed that the pain is originating from the eye & tissue within the orbit, behind the eye. If the injection didn't provide me with any relief then it would mean that the pain was originating somewhere in the brain (as in something like migraine pain) & pushing forward. If this were the case, then it would have opened up some new treatment options, but instead the injection helped & therefore there is nothing that we can do about the pain because we've essentially tried everything already & there is just no way to get to the affected area. So until we know more about what is going on, we've reached something of a dead end. So now it's up to this PMS & neurosurgeon next week.

So in the end, the injection was helpful in reducing my pain (but only for a very short period of time ), was somewhat helpful diagnostically, but in the end was not helpful in terms of future direction. I wish there was some way to make the effects of the injection last (minus the inability to move or use that eye). Cue frustration. And, on top of everything, I've been in even worse pain since the injection, because while it numbed things nicely for a few hours, it also wreaked havoc behind my eye.

Skeye

Skeye, just wanted to send you my very best wishes and a big cyber hug too. How enormously frustrating for you... relief and then no relief...let's hope the neurosurgeon will come up with some wonderful ideas for you. How aweful back to the waiting game again.
Big Hugs, magic wands and sunny days, golitho

Hi Skeye:

I was reading your post about being evaluated for a nerve stimulator for your eye. I just thought that I'd mention that they use the same device (generator) as the SCS to stimulate many other areas of the body for a variety of diseases & medical issues. I have seen it used to help Parkinson's patients to reduce or eliminate their "ticks/tremors". I have seen it used for women with bladder issues (interstitial cystitus) to alleviate spasms, and I have one implanted in my stomach - the official name for it is Enterra Therapy and/or a Gastric Pacemaker.

I have a condition called gastroparesis as a result of taking pain medications for several years. Pain medications slow down the motility of the stomach, in my case, it completely paralyzed my stomach, so when I would eat, the food would sit in my stomach and rot. I would start vomitting profusely and no amount of anti-nausea meds would touch it. In addition, because I could not keep anything down or digest anything, I was not absorbing my pain medications, so I would start going through terrible withdrawals. For a year, I was so sick, and nobody could figure out what was wrong. They took my gallbladder out - it was not the problem, I have an intrathecal pain pump, and the doctors at my local area hospitals had never heard of or seen one, and they kept trying to blame my symptoms on it, thinking that my pump was malfunctioning somehow, but no one knew how to check it.

To make a long story short, my best friend, who has Chrons disease, asked this doctor who was new to our area to come and see me in the hospital, and she is the one who finally was able to determine what was wrong with me. Then we find out that there are only 2 drugs used to treat the condition and I'm allergic to one of them, and the other one only works in about 20% of patients with gastroparesis. This doctor when on the internet and started researching and found a doctor who did this Enterra Therapy. I had the device implanted, and the results were unbelievable. I stopped vomitting immediately. The device has been in there for 5 years, and occassionally I have symptoms, but they are mild and don't last long. I have not been hospitalized for it at all.

I wish that the SCS gave me as much relief for my back as the gastric pacemaker does for my stomach!!! I pray that you get wonderful results from the nerve stimulator you are about to try!!!

Lorie