update - facial stim trial

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skeye
Veteran Member


Date Joined Mar 2008
Total Posts : 2976
   Posted 7/2/2010 4:54 PM (GMT -7)   
Hi everyone,

I'm finally home from the hospital after having temporary leads implanted on the ophthalmic branches of my trigeminal nerve. It was an out-patient procedure, but it took all day because the hospital is 2 hrs from my house, plus my surgeon got confused about the times & showed up an hour late. So there was a lot of sitting around this morning (but that ended up being okay because it took forever to get an IV started, since I have such small veins).

I have a ~ 5 cm incision on the side of my face, in front of my right ear, right at the hair line. There are two ~ 18G wires coming out of the incision which run behind my ear, down my neck, and hook into some kind of device taped to my chest. Then another wire comes out of the box on my chest & hooks up to the external stimulator, which is about the size of an ipod, but thicker. A remote then sits on top of the stimulator & it has 5 different programs, and many different intensities & patterns. I'm still getting the hang of working it.

My unit is a Medtronics. Really the only way to describe the feeling of the stimulation is "weird." It doesn't hurt & it doesn't really tingle or pickle. It's hard to describe. Right now I can't tell much about it's effect on my eye pain, as I have a headache from the surgery & am still kind of numb in areas from the local anesthetic they must have used on top of the sedation (I didn't go under general anesthesia, but I was completely asleep for the entire procedure).

I'm going to end this for now, because I am still kinda of tired from the anesthesia & the anesthesia has made my vision much much worse, but I just wanted to let you all know that everything went well & I am doing okay. I'll keep you all posted as this week-long trial continues.

Oh, a 50% reduction in pain is considered a successful trial & is grounds for permanent implantation. I would be absolutely thrilled with a 50% reduction. Keep your fingers crossed!

hugs,
Skeye

momtofourangels
Veteran Member


Date Joined Apr 2010
Total Posts : 2261
   Posted 7/2/2010 6:25 PM (GMT -7)   
tongue   Oh Skeye   I'm so happy that you finally have the trial hooked up.  I will be praying that this will work out and that you will get the stimulator permanently implanted.  Bless your heart.  It finally happened.  Please let us know how it's going thruout the week.  I have a small tens unit that helps my pain some in my back, but I haven't used to in a while.  I guess I should get it out and use it.   Good luck.  (((((((((((((((hugs))))))))))))
 
love and hugs
Loretta
Dx:  ddd, spinal stenosis, bone spurs, hypothyroidism, typeII diabetes, asthma, allergies, high blood pressure, polycystic ovary syndrome, PTSD, depression, anxiety


Mrs. Dani
Veteran Member


Date Joined Jun 2009
Total Posts : 2787
   Posted 7/2/2010 7:17 PM (GMT -7)   
 
 
   Dear Skeye,
 
    I am so glad you gave an update. *hugg* Try to rest as much as possible. I am really excited for you! This could be very very good! Let us know how you are doing tomorrow morning. I wont chat away endlessly, but know you are in our prayers!
 
*warm hugg*
    dani
 
TWO roads diverged in a yellow wood
And sorry I could not travel both
And be one traveler, long I stood
 
Chronic Pain Moderator


White Beard
Forum Moderator


Date Joined Feb 2009
Total Posts : 3611
   Posted 7/2/2010 8:16 PM (GMT -7)   
skeye
Thank you for the update, I am just so excited for you! I am keeping my fingers and toes crossed for you that this trial run is successful and you finally get some decent pain relief! I know it has been a long rough road for you, but you have stuck it out and did not give up! I am proud of you, for that!! I know allot of people would have just given in to their insurance company! You have a bright and promising future ahead of you, and with the success of this stimulator, it will be one with allot less pain!

You are in my prayers

White Beard

Chartreux
Veteran Member


Date Joined Aug 2006
Total Posts : 9622
   Posted 7/2/2010 9:20 PM (GMT -7)   
Wow Skeye,
can certainly understand your need to unwind...Thanks for the update and sure hope
this implant with help for you...well wishes to you, here's to success with the trial...
one step closer to a low pain day, eh...
(((((((((((((((((((((((((((((((((((((((Skeye)))))))))))))))))))))))))))))))))))))))))))))))))
hugz
**********************************************
* Asthma, Allergies, Osteoarthritis, Spinal Stenosis, Degenative Disc (Lower Lumbar S1-L3 and Cervical C5,C6, C8 and T1), Fibromyalgia, Gerd,
Enlarged Pituitary Gland, Sjogren's, Ocular Migraines, mild carpel tunnel, ect.... "Would be nice if we could use the edit button in real life"...

********>^..^<********>^..^<********>^..^<********


MIKEL99
Veteran Member


Date Joined Feb 2010
Total Posts : 914
   Posted 7/2/2010 9:21 PM (GMT -7)   
Hey Skeye , Congrats on your sucessful procedure , I'm glad all went well and I really hope it impacts your pain significantly and in a positive way . Good Luck and keep us posted !!! Mikel

PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 7/2/2010 11:40 PM (GMT -7)   
Skeye,
I'm so thrilled it actually happened! I was thinking of you yesterday (honest!) but since you hadn't posted anything here I was wondering if something had go awry again, but I'm glad I'm wrong!

You have shown such perseverance and courage through all this. I am hoping beyond hope that this trial is successful, and brings you all you want and more!

Hugs,

PaLady

damouthy1
Veteran Member


Date Joined Sep 2009
Total Posts : 663
   Posted 7/3/2010 4:43 AM (GMT -7)   
Hey Skeye, I just wanted to let you know I am keeping you in my thoughts and prayers. I do hope you get some relief from this. It sounds like a pretty painful procedure. I have good thoughts that it will be worth it. Please keep us posted. Take care.
Gentle Hugs,
Shannon
 
Fibromyalgia, Chronic daily headaches, Migraine disorder (with and without aura), GERD, High blood pressure, Depression and Anxiety
Oxycontin, Flexeril as needed, Lopressor, Lexapro, Omeprazole, Clonazepam as needed, Promethazine as needed for nausea from migraines


catahoula
Regular Member


Date Joined Dec 2009
Total Posts : 184
   Posted 7/3/2010 12:24 PM (GMT -7)   
Skeye-
fingers, toes and everything else are crossed hoping this will do the trick. Sounds like the same implant I have except it has some new bells and whistles ( after 5 years I would hope they updated it) Get some rest and know we are all praying for you.
Let us know how you are when you are feeling up to it!
catahoula
sick and tired of being sick and tired


skeye
Veteran Member


Date Joined Mar 2008
Total Posts : 2976
   Posted 7/3/2010 3:53 PM (GMT -7)   
Hi all,

Thanks for the well wishes & prayers. I apologize for not having posted this week before the surgery, but this past week was a really busy one for me. I worked a lot & we are having some major issues with a coworker at work, so by the time I got home each night I was mentally and physically exhausted.

I ended up sleeping a lot today. It always takes me a few days to get the anesthesia completely out of my system. I didn't sleep great last night -- it took some getting used to sleeping with the device (I usually sleep on the side that the wires are on, so I had to change my sleeping position), but I did get about 4 hrs of solid sleep this afternoon, which was amazing. I've been leaving the unit on while I sleep, as sleeping is something that is usually very painful for me.

Most of my surgical pain has dissipated now. I just have a minor headache. I'm still getting used to playing with the system, but I do think that it is helping!! Right now I am cautious, but very optimistic. Although I do find it amazing at how fast I get used to a particular setting & thus end up cranking up the intensity.

The Medtronics rep was really great yesterday. He came and saw me before the surgery & showed me the device & explained what was going to happen and gave an overview of how it would work. Then he met me in post-op and turned on & programed the stimulator. He showed me how to change programs, intensities, and frequencies & also gave me a booklet and a DVD with instructions. He's planning on staying in contact with me over the week & will meet up with me if necessary to reprogram or adjust the stimulator.

The only thing I don't like so far is that sometimes the intensity of stimulation seems to change when I move my head in a particular way (perhaps the permanent implant will be better than the temporary one in this matter), but really that's just a minor annoyance. My eye also seems to be very itchy. I don't know if that is a result of the stimulation or of the soaps they used in the OR to clean my face. I've been using regular artificial tears, but I also had my mom pick me up some eye drops meant for itchy eyes, so I'll give that a try & see if it helps at all.

Thanks for being there for me throughout this journey.

hugs to all,
Skeye

momtofourangels
Veteran Member


Date Joined Apr 2010
Total Posts : 2261
   Posted 7/3/2010 4:08 PM (GMT -7)   
Hi Skeye.  I'm so glad that you got some sleep this afternoon.  It's good to hear that the stimulator is working for you at least a little.  Please keep us updated on how you're doin'. 
 
love and hugs
Loretta
Dx:  ddd, spinal stenosis, bone spurs, hypothyroidism, typeII diabetes, asthma, allergies, high blood pressure, polycystic ovary syndrome, PTSD, depression, anxiety


Blessedx8
Veteran Member


Date Joined Aug 2008
Total Posts : 3193
   Posted 7/3/2010 4:40 PM (GMT -7)   
Skeye...

Thanks for the update... and I'm glad it went well, overall... Glad you got some sleep today, too. I so much hope and pray that this gives you the 50% (or more) pain reduction. That would be so great for you. I know this has been a long journey for you... and I will continue to pray that it works wonders for you.

Take care of yourself and try to rest....
--Tina
Main Health Problems: Dysautonomia/POTS; CFS/Fibromyalgia; Severe Chronic Hypertension; Hypothyroidism; Hypoadrenalism; Mixed (Obstructive/Central) Sleep Apnea - on Auto BiPap; Depression/Anxiety; Severe Vitamin D Deficiency

Pain Issues: Cervical/Thoracic back pain (they called it DDD...but I don't know); migraines; carpal tunnel syndrome; widespread joint/muscle pain, nerve pain in hands/arms/feet; Future Plans: Intrathecal Pain Pump; already completed trial (Sept, 2008); awaiting my decision for implantation...


PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 7/3/2010 7:31 PM (GMT -7)   
Skeye,
There's certainly no need to apologize to us for not feeling up to posting. We more than understand! But it's great to hear that so far, so good! That's exciting...but I can understand the need to hold back on celebrating just yet. I hope that this helps even more than you anticipated.

Your cheering section is here rooting for you!!!!! :-)

PaLady

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13466
   Posted 7/3/2010 10:28 PM (GMT -7)   
Skeye wow finally you had your day to actually get to start the trial. Its has been a long time coming for you. It does sound like this may be working for you somewhat. Skeye I remember some of the others with the SCS saying if they moved their heads certain ways it did to them what is happening to you. If I am remembering right there really wasn't much that could be done for that either. I am thinking Frances may have been one of the people that spoke about this, perhaps she will come to the forum and see your post. Ask your rep about the "itchy eye" he may have some answers. Keeping my fingers crossed this thing works for you.
 

crohns disease dx 2002 & small bowel resection, still looking for remission whatever that is, chronic pain 22 yrs, added ulcerative colitis 6-05 to the mix, high blood pressure 28 yrs, aortic heart valve insuffiency, depression, osteoarthritis, osteoporosis lumbar spine, scoliosis lumbar spine, peripheral neuropathy hands & feet, COPD & on oxygen therapy, lupus & psoriasis and psoratic arthritis. Several other health issues just not enough room to list it all. Too many surgeries to list and too many medications to list. Currently on 17 different daily medications. Intrathecal pain pump implanted June 05.


Stella Marie
Veteran Member


Date Joined May 2005
Total Posts : 601
   Posted 7/3/2010 10:48 PM (GMT -7)   
I am glad to hear that you finally got the opportunity to trial the stimulator.  I have a Boston Scientic Stinulator that was implated in 2007 at the Cleveland Clinic.  I did have what I consideredto be a 50% reduction in my pain level, but would now classify is merely a change in sensations - if that makes sense to you.  At the time of my trial I was so relieved to have a change in my pain level, that amything was welcomed.  The simulator is not able to directly impact the cause of your pain, like medication does,  it merely adds a secomdary sensation of top of the original pain sensation,.  This secondary stimulation of or "electrical tingling", is strong enough to blur the under lying pain.  What you end up with is your original pain plus this "electrical tingling" sensation on top of it.  The goal or hope is that this "electrical timgling" sensation offers a semi-tollerable diversation from your original pain impulses.  At the time of my trial, I was so relieved that my "normal", previously untreatable pain, except with high doses of very strong narcotics, would be blurred or altered into a more torableble sensation.  I do not want to damper your success, but give you another persons experience with the simulator.  At first I was happy with this new sensation, it was a drmatic change from my long standing original pain.  Unfortunatley, over time it got to be almost a sensory overload for me.  I now a period of time I now realized I still had my same underlying pain plus this new "electric tingling" sensation on top of it trying to blur it out.  about one year after I had the permanent stimulaor implanted, I got to the point were my original level 8 or 9 pain was still there - plus this new sensation which I had more control over.  I got to the point where I could no longer tolerate all these sensation (sensory overload)  and continued to seek better control of my underlying pain.  Not just altering it.  I began a trial of the pain pump.  I did not realize at the time my stimulaor was impanted, that pain doctors were able to use wide variety of different medications in the pain pump, that are not available in oral form.  With the pump, I now had access to a number of highly effective  pain medications  (anesthetics) than I did when I was taking the basic oral narcotics.  Also the side effects of the narcotics were basically eliminated, and  doses in the pump are about 1/100 th the strength that oral doses are.  Because the medication does not need to be processed through the liver or cross the blood brain barrier to access the direct pain area, you get immediatel relief with minute doses. Plus, because you receive constant tiny amounts, your pain rarely ramps up to the level where you need break through oral relief.   I ended up having the permanent pain pump implanted and it turned out to be provide me with  ultimate relief in pain control.  For over two years now I have been able to eliminatemost of  my underlying pain with all the new anesthesias now available for my pump that were not available to me in oral form.  My pain has been majorly eliminated and not just blurred.  The quality of my life has been totally improved by over 400%.  My only advice to you is to also trial the pain pump before you make a decision to have the stimulator permanently implanted.  I now very rarelyy used my stimulator.  I'll go months upon months and then the electrical charge in the stimulator is completely drained.  I find I need to recharge my stimulator for about 4 hours before I can start use it again.  With the knowledge I have now on both  devices, almost 3 years,, is that I am really sold on the pump for the best possible pain relief.  I get such good relief from the pump that I can going long periods of time where I do not need any break through oral medications for pain relief.  The ultimate question is whether I would have implated in the simulator, knowing the I would get such dramatic pain relief from the pump.  The answer is no.  In retrospect, I wish I had trialed BOTH the stimuatlor and the pump before making a peranent decision. After the trial of both, THEN decide which did the best job and have it impanted.  Hands down the pump gave me pain relief instead to a secondary sensation.  Pain relief is everyones ultimate goal.  Being pain free is pure nirvana.  The pump was the only thing that ever gave me periods of being totally pain free.  The pump changed my life, the stimulator just made it more tolerable.
 
I am sorry this posting is so long.  My goal was to give you a secondary view point of the benefits and limitations to both the pump and stimulator. 
 
Good luck in finding the tool that best meets your pain relief goals.... 


Stella Marie   Chronic Pain Forum Moderator

Progressive neurodegenerative disease called Multiple System Atrophy, congestive heart failure, muscle spasms, muscle pain, neuropathy, & neuropathic pain, central sleep apnea, osteoarthritis, and 2 pain implants – intrathecal pain medication pump and an SCS (spinal cord stimulator). 

 

 


Post Edited (Stella Marie) : 7/4/2010 12:31:47 AM (GMT-6)


skeye
Veteran Member


Date Joined Mar 2008
Total Posts : 2976
   Posted 7/4/2010 10:19 AM (GMT -7)   
Hi Stella,

Thanks for your input. It's always nice to have another person's opinion. As far as I know I am not a candidate for a pain pump because my pain really doesn't respond to medications at all. The stimulator trial is kind of a "last resort" for me. I'm sure in the future, with advances in medicine, there will be more options, but right now I seem to have exhausted just about every option but this one. I know that there isn't going to be any perfect solution, & I certainly have concerns & reservations about the long-term use of the stimulator, but right now I'll take anything that I can get.

I'm definitely noticing an improvement with the stimulator. When I turn it off, my pain is much worse. I still have another 5 days to go with the trial & I'm not ready to make a decision yet, but so far I am liking the stimulator.

A bigger test will come later this week, when I do more reading & heavy use of my eye.

Skeye

catahoula
Regular Member


Date Joined Dec 2009
Total Posts : 184
   Posted 7/6/2010 12:53 PM (GMT -7)   
Skeye- so how is it going? Have you made any decision about the stimulator.? Just asking because I am hoping you will be certain before you agree to any permanent implant. I pray so dearly that it will work for you and hope that you will not make the mistake of 'thinking" it is working rather than KNOWING it is. Did that come out right? I was so sure that mine had solved all my problems that I agreed to go ahead and have the final implant. As I look back on it, 5 years later, had I known then what I know now, i would not have gone through with it. Here it is 5 years later and I am still in such immense pain and have yet to find any relief only getting minor relief with some medications. I was just "sure" that it had done the trick and may have been caught up in the hope rather than the reality.
Having said that PLEASE understand that I am in NO way trying to disway you from having the final implant. These things work differently for everyone and I pray that for you, this is the ultimate. You are so young and have such ambition and such a long life ahead of you I know you do not deserve to live in this pain.
Please just let us know how its going, what you think and heres' hoping that it will be a success.

catahoula
sick and tired of being sick and tired


skeye
Veteran Member


Date Joined Mar 2008
Total Posts : 2976
   Posted 7/6/2010 2:41 PM (GMT -7)   
Hi Cata,

I have not come to a decision yet. At times I feel that the stimulator is making a significant difference (50%+ relief), but at other times, I feel that it isn't helping all that much. But then I turn the stimulator off, and my pain increases significantly (even when I thought it wasn't helping much).

I did speak with the Metronics rep again today & we discussed tweaking the stimulator/differences between the temporary & permanent system. Out of the 5 programs, there are about 3 that I use most often. I am pretty happy with the coverage, so I don't think that I am going to meet him before Friday, but he might make some minor changes before I go into surgery on Friday, just to demonstrate a few things.

Right now I am leaning towards having the permanent implant done on Friday, but I still have a few more days to come to a final decision. Despite it's inconsistencies, so far, other than a retrobulbar nerve block, which was diagnostic only, the stimulator has given me the greatest pain relief of anything that I have tried over the last 4 yrs & I'm not sure that I am willing to pass that up.

Skeye

PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 7/6/2010 4:02 PM (GMT -7)   
Skeye,
The only things I know about stimulators (other than my external tens) I've learned from others here on the forum, so I no personal experience to share. But it seems from my reading that if needed you can have it removed, although maybe some of the leads might be left in(I'm thinking I read this about someone's stim on their back, though). And it also seems every few years you have to have the battery replaced. Since you're so young, I think it's very likely other methods of treating your pain will develop over the years, but even if this only helps you get to that next new invention or medication, it may be worth it.

I'm sure there are risks, as there always are with any procedure, but what are the "cons" of having it put in? You've probably made your list already, so you don't need to answer me here, but I'm just thinking out loud what I'd likely be thinking if I were in your place.

I know you'll make the right decision for you. There's nothing that's ever 100%, and sadly, I think you're learning that the hard way at much too young of an age. But that wisdom you're gaining I think will come in handy in your life. I wish I'd had a little bit of it when I was younger!

I'm cheering for you whatever you decide!

PaLady

skeye
Veteran Member


Date Joined Mar 2008
Total Posts : 2976
   Posted 7/6/2010 6:13 PM (GMT -7)   
Palady,

You are exactly right. That's the nice thing about this procedure: it's reversible.

Right now I'm even less sure as to what is going to happen on Friday, as I just developed a substantial complication. I've felt pretty rotten the last 3 nights (nasty headache, earache, neck hurts, achy), but I just attributed it to my body adjusting to something foreign. Well, this evening I felt 10 times worse & was freezing in a hot house. I literally spend about 2 hrs on the couch, huddled under blankets, crying because I felt so rotten. I finally took my temp & I have a 101 F fever.

I called the on-call doctor at my neurosurgeon's office. He really didn't say much other than to take tylenol & call my surgeon first thing in the morning. I also had my father (a general practitioner) look at me quickly. The good news is that he thinks that I have some kind of illness unrelated to the surgery, because my incision & leads look good. The bad news is that this could potentially postpone my surgery on Friday (although I'm not sure how long they can put it off, because the temporary leads can only stay in 10 days max, and Friday will be day 7).

I'm just going to take it easy tonight & call my internist and surgeon in the AM. I'll probably have to have some blood work done & a strep culture, as my glands in my neck are really swollen. Why can't anything ever go the way it was planned?!

Skeye

PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 7/6/2010 9:27 PM (GMT -7)   
Awe, Skeye, I'm so sorry this is happening to you now. See what your neurosurgeon says in the morning. I wonder if they can show it's something else (like a strep infection) if there's anyway to repeat the trial at a later time, if you need to do that.

Let us know how you're feeling when you're up to it.

Hugs,

PaLady

catahoula
Regular Member


Date Joined Dec 2009
Total Posts : 184
   Posted 7/6/2010 9:35 PM (GMT -7)   
when i had mine in there was a 23 waiting period between removing the trial and having the permanent installation. Fortunately it gave me a good long time to think about what I had just experienced and how differently I felt when it was removed. The removal was VERY easy. All doctor did was clip the stitches holding the electrode wire in place above my brow, and pulled the electrode band out. Put a bandaid where the incision had been and sent me on my way. Just don't be rushed or talked into anything.

have to add that the past many days here in NW Illinois I have been in constant 9/10 pain even with the stimulator on. This heat has caused havoc and frankly I 'm ready to throw in the towel and say "UNCLE". I see no reason to continue this charade because I don't think things are going to get any better. Another summer down the tubes and I'm ready to check out.
I pretty much don't see much reason to keep plugging away.
catahoula
sick and tired of being sick and tired


White Beard
Forum Moderator


Date Joined Feb 2009
Total Posts : 3611
   Posted 7/6/2010 9:47 PM (GMT -7)   
Boy Skeye
Fate or the Gods or what ever is sure making you earn the right to have this thing aren't they! You said you can have the trial leads in up to ten days, can they postpone the surgery till Monday instead of Friday? It might give you a little more time to fight off what ever bug that you have? Watch that temp of yours, and check with your doctors as soon as you can, as they still have some time to get this thing treated, as you probably know 48 hours on an antibiotic can do wonders, if that is what is needed. I like PALady's way of putting it, she is right most likely in a few years they will have something new and fantastic out to treat pain and something that might be just what you will need. If this device helps you untill that next new one comes out, well it just might be worth having it put in. You have been through so much for being so young, andd you have had to make some very important decisions about your life already, and it looks like you have done very so far! I am confident that what ever your decision is about this stimulator, it will be the right decision for YOU! We are all here to give you our support skeye. So take good care of yourself and beat off that nasty bug you have!

I wish you well!

White Beard

skeye
Veteran Member


Date Joined Mar 2008
Total Posts : 2976
   Posted 7/7/2010 6:13 AM (GMT -7)   
Hi all,

I just spoke with my surgeon's office & they are going to have him give me a call. I also have an appointment to see my regular doctor this afternoon. My fever is down to 100 F this morning, but knowing my body, it will probably increase again as the day continues. I still feel really lousy. I guess that it is a good thing that I'm not seeing my doctor until late this afternoon.

Skeye

catahoula
Regular Member


Date Joined Dec 2009
Total Posts : 184
   Posted 7/7/2010 9:43 AM (GMT -7)   
fingers crossed it is just a "fluke" and you will be rarin' to go soon!
catahoula
sick and tired of being sick and tired

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