upcoming injection & evaluation

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skeye
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Date Joined Mar 2008
Total Posts : 2976
   Posted 8/10/2009 4:45 PM (GMT -7)   
Well, I spoke with my ophthalmologist this evening & we have decided to try doing a retrobulbar nerve block (essentially an injection of lidocaine behind my eye). If successful, the block will last about two hours. This is for both the purpose of pain relief & diagnostics, as the success or failure to gain relief will tell us more about which nerves are involved. On the downside, I'll also temporarily loose my vision in the affected eye, but to me, its worth it. My pain has been out of control for over a week now & I can barely stand it. I'm not sleeping at all (even less than usual), and my vision is dreadful & my eye swollen.

I'm scheduled to have the injection done on Wednesday. I'm both nervous & excited for this to happen. I shouldn't get my hopes up, but I think that this is really going to help -- for a short while at least.

At the urging of my neurologist, I also made an appointment to see a neurosurgeon towards the end of the month to be evaluated for a trigeminal nerve stimulator. I'm not completely sure what it involves, but it sounds similar to an SCS, except the electrodes are implanted on the trigeminal nerve in the face instead of your spinal nerves. I don't know if the actual device is internal or external. I suppose I'll learn more at my appointment.

I hope everyone is having a good evening!

Skeye

PAlady
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Date Joined Nov 2007
Total Posts : 6795
   Posted 8/10/2009 5:01 PM (GMT -7)   
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

Chutz
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Date Joined Jan 2005
Total Posts : 9090
   Posted 8/10/2009 10:21 PM (GMT -7)   
Hi Skeye!

This is good news, even tho it is a bit scary. I suppose anything to do with the eye area would unnerve most of us. But it does sound like they are on top of things. I will pray for a speedy recovery time and good news from this procedure. You are such a sweetie!

Hugs,
Chutzie
Play fair. Don't hit people. Say you're sorry when you hurt somebody.
~Robert Fulghum

(\o/)Co-Moderator Fibromyalgia & Chronic Pain Forums
(/|\)


skeye
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Date Joined Mar 2008
Total Posts : 2976
   Posted 8/11/2009 6:30 AM (GMT -7)   
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

Pete trips again!
Veteran Member


Date Joined Nov 2006
Total Posts : 1899
   Posted 8/11/2009 8:29 AM (GMT -7)   
Skeye,
Oh I'm so glad that the Doc is going to try something!! We will be praying for you on weds. I think you are so right, if you don't do anything, nothing is going to change! You are so brave! No sedation-needles-losing sight in eyes> Yikes, thats enough to scare most of us out of our witts! Anyone who questioned if this pain you have is legit should see you now!! Why would anyone have such a scarry procedure if it wasn't really needed???? You are going on the top of my HERO list!!! Big Hugs!!!
Your Big Bro,
Pete
56 years old, Surgury, Radical Prostatectomy 8/20/03, PSA 6.6, Gleason 3 + 3 = 6, Adenocarcinoma extent (moderate) Stage & Margin:T2NOMX, No Metastases, Organ Confined, bone scan: Neg. 3 1/2 years of depression after surgery prior to Hypogonadizm DX, Testosterone Theropy> new 2/6/09> 400mg injections once a month. 56 and so glad to still be here to see my two sons grow up to be fine young men. They are both serving in the US Navy, Joseph is on the aircraft carrier USS John Stennis back in Bremerton, Wa. after 8 mo. deployment! and Pete Jr. is on The Asault Ship USS Bataan "The Jaws of the Fleet" somewhere in the Persian Gulf w/ 2,000 Marines aboard. I am one very proud (what they call me)> Big Pops! 


skeye
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Date Joined Mar 2008
Total Posts : 2976
   Posted 8/14/2009 6:26 PM (GMT -7)   
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 sad), 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. smhair

Skeye

fatherjohn
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Date Joined Feb 2009
Total Posts : 999
   Posted 8/14/2009 8:41 PM (GMT -7)   
Skeye, I hope that a little time will ease some of the increased pain after the injection. I know it does not seem like much but each new thing they try, at least something is ruled out. I know you want to rule something in for a change so there is a treatment option to help. At this juncture, we can continue to pray for your next appointment and see if the stimulator is an option. I had some fresh berries today and was thinking of you.

golitho
Veteran Member


Date Joined Sep 2008
Total Posts : 1670
   Posted 8/14/2009 9:05 PM (GMT -7)   
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

PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 8/14/2009 9:32 PM (GMT -7)   
Skeye,
I wish I could find adequate words to express how I feel reading your post. I can feel your frustration and I don't blame you. I guess I wonder if there is some type of longer acting medication they could inject that wouldn't mean losing your vision but would target the area that at least seems to have been identified through this injection.

I just want to hug you and offer you a shoulder to lean on. I continue to hold out the promise of a treatment for you one day in the not too distant future. At least I hope you can rest a bit as fatherjohn says that the negative effects of the injection wear off soon.

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

PaLady

bluejet2
Regular Member


Date Joined Feb 2009
Total Posts : 487
   Posted 8/14/2009 9:46 PM (GMT -7)   
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

skeye
Veteran Member


Date Joined Mar 2008
Total Posts : 2976
   Posted 8/15/2009 5:38 PM (GMT -7)   
Fatherjohn, golitho, Palady, & Lorie, thank you all for your kind comments! It is so nice to have such a great support system!

Lorie, I found your post very interesting! Thanks for sharing!

Fatherjohn, blueberries are now in season here & they are fantastic (I'm practically inhaling them)! I'm still curious to try your berries, though. Next time I'm in Oregon, I'll have to track some down!

Skeye
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