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Posted 11/15/2009 2:49 AM (GMT 0)
Well, after several months of waiting, the neurosurgeon finally got back to me this week! In all of his research, he only came across one other neurosurgeon who had implanted a nerve stimulator in a patient with chronic eye pain. BUT, that patient (who was in a similar situation as me) has gotten significant relief with the stimulator. He says he doesn't know if a stimulator will help me (although he said it's a positive sign that I got significant relief from a retrobulbar nerve block), but it's something to consider.

If I decide to do it, he will implant temporary electrodes above and below my eye. Like with an SCS, I'll go through a week trial period. If it helps, then I'd have permanent leads & the battery implanted the following week.

It's a lot to think about. My first reaction is "let's go for it," since this is really the only option left other than destroying the eye (which I am really not considering an option at this time, since as screwed up as it is, I still have vision in that eye & we don't know for sure that destroying the eye would help with the pain), & I need to do something. But at the same time I am hesitant. It scares me to think about having something electronic implanted in my body (especially at only 21 years old) & its potential to effect my health down the line. There is no guarantee that this will work anyway, but I'm just a little overwhelmed. I feel a bit conflicted too, because I know that my family doesn't want me to get the stimulator.

It's not a decision that I have to make right away & I am certainly going to talk it over with my doctors over the next month or two, but part of me wants to take action now. I just want some relief, you know?! I wish there was an easy answer!

Skye
Posted 11/15/2009 3:10 AM (GMT 0)
Wow Skeye, you do have a lot to think about...just the thought of having a stimulator behind my eye is giving me the willies...but I'm with you, if it gives you some relief then you do have to consider it...Please keep us posted and think about it very carefully...We are here for you.

Me.
Posted 11/15/2009 3:55 AM (GMT 0)
 

   Dear Skeye,

 

     Good evening *softhuggs* it sure is good to hear from you again. I hope you are okay tonight, though I am sure these decisions you face must be weighing heavily on your mind. Though I know nothing of the type of procedure, I do hope you find relief with it. You ve just been in unrelenting pain for so long, to hear that their is an option is wonderful. I will admitt I was worried, since you saw him nearly two months ago and hadnt heard anything back. I am glad that he did have some good news! I sure hope the test trial goes well. Stay strong!!

 

*warm huggs*

  dani

Posted 11/15/2009 4:07 AM (GMT 0)
Skeye,
The good news is that there is something that may help, and that there is another person , like you, with eye pain who got significant relief.
And, you get to trial the stimulator to find out if it will work. It is not permanent unless it does offer you significant pain relief.
I know it's a lot to think about, but given that there has been little else to help so far, I would bring your family members with you, or at least one of them so that they can ask the surgeon questions that are worrying them and maybe they will come away with a newer perspective on how it may help you, and in turn them.....because you will be in less pain.
Sandi
Posted 11/15/2009 4:08 AM (GMT 0)
Skye,
Wow what a hard decision for someone to make and then to be so young knowing that the majority of your life is still yet to come. I hope the trial, doc and your family can help you even though it is your body and you have the final say. Good luck kiddo and I will keep you in my thoughts and visits with the Man/Woman up above.
Posted 11/15/2009 4:23 AM (GMT 0)
Skeye,
seems like something to consider very carefully..sure hope it's able to help...
my only dumb question is, will you need to go thru the hoops of getting a psych evaluation?
If you do I hope you get approved..Lots of soft healing hugz...
Good luck and prayers...
((((((((((((((((((((((((((((((((((((((((((((((((((((((((Skeye))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))
now keep us posted, oh and finger's crossed for ya too...
go skeye, go skeye, go skeye, yeah...
Posted 11/15/2009 4:51 AM (GMT 0)
Skeye,
I certainly understand why this is a tough decision. It's hard enough when many of us make decision about our backs, but an eye is even more delicate. I take it your father is against it, from your statement.

I think it's good you're going to take some time. I know you want relief - who can blame you, but doing a little more investigating and thinking can't hurt at this point. Is there any way you could talk or e-mail the person who had it done? And also see what the potential hazards, risks are (although I suspect some of them are unknown).

It's at least a good thing that there is an option. One thing I wonder is if something else comes along (another type of treatment) later in your lifetime, how difficult will it be to remove the stim? And what are your father's objections - as a doctor (I know he can't separate that from being your father!).

We're here!

Hugs,

PaLady
Posted 11/15/2009 6:58 AM (GMT 0)
Hi Skeye:

I have an SCS as well as a "gastric pacemaker" which is the same exact device - it is just implanted in my stomach.

Several years ago I developed a condition called gastroparesis which had me very ill and hospitalized 11 times in less than a year. Although gastroparesis is not a new condition, there was only 2 known ways of developing it - either by nerve damage to the stomach following an illness where there was severe vomiting, or it was a complication of diabetes.

Gastroparesis is a condition where the digestion of food either slows way down or the stomach shuts down completely. I was the first person ever to have this condition as a result of narcotic medication. My pain meds were causing my stomach to shut down completely, so when I would eat, the food would sit in my stomach and rot. I would start vomitting violently and nothing would work to slow it down or stop it. They were giving me anti-nausea meds that they give chemotherapy patients, and they did nothing for me. I would very quickly become dehydrated to the point that they could not get an IV started and would have to put a line in my neck or a pic line in a deep vein in my upper arm.

It took a year for them to diagnose it correctly, and then I was told that there were only 2 medications for this condition - one I was allergic to, and the other only worked in 15% of the people with this condition, and we already knew it didn't work for me.

I had a wonderful GI doctor who did extensive research and found that they were having some success with patients who had this device implanted in their stomachs as it stimulates the stomach to open and close, and increases the motility. I was very familiar with the device since I already had one in my back, so I was all for it.

The largest program that was studying the use of this device for gastroparesis was at the University of Kentucky. I live in upstate New York, and my doctor found someone in Manhattan who did this surgery, but since I was the first person ever to have it as a result of narcotic pain meds, he was not sure that this device would work for me. He contacted the University of Kentucky and the head of the program told my doctor that if it were him, he would not do the surgery on me as he didn't think it would work.

Thankfully, my doctor did not listen to him, and decided he would be willing to give it a try. I was told to expect it to take several months of adjusting the settings to find what best worked for me before I might get any relief, and they put in a feeding tube so that I could get nutrition that way and hopefully keep from getting dehydrated and having to be hospitalized all the time.

To everyone's amazement, the device worked immediately! They did not have to adjust the settings at all, however much stimulation they set the device to deliver in the operating room was just right. I still get bouts of nausea and a few other symptoms, but I only get the vomiting once in a great while and it responds to the anti-nausea meds I have.

I understand your families concern since there is only documentation of one other person with similar symptoms, but I thought my experience might ease their concern, or may help you some in making your decision.

I wish you the very best whatever your decision is.

Lorie
Posted 11/15/2009 8:41 AM (GMT 0)
Lorie,
Wow - I didn't know all you have been through! I'm sure Skeye will appreciate your sharing your story. I know I learned from reading it!

Thanks!

PaLady
Posted 11/15/2009 3:42 PM (GMT 0)
Dear Skeye,

We all have been praying that there would be an answer for you!  Most times the answers are not exactly what we hoped for, it would be so much easier if it were a for sure yes or no!

You are living with so much pain everyday and I trust that you will know what to do as you make your decision.

When I was given the option to have the stimulator trial, I contacted the company and  also asked my PMD for permission to contact patients who had the implants.  I spoke to several people and they all agreed the pain decrease was worth the implant.  Unfortunately I was in the iffy % and decided not to go forward.

Can I make a suggestion that you ask your Dr. to get permission for you to speak to the person who has the stimulator!  Perhaps, this will help in this most difficult decision!

XXOO
Patti

Posted 11/15/2009 10:42 PM (GMT 0)
Me, Praying, Dani, Sandi, Cathy, Char, Palady, Lorie, and Patti -- I can't thank you guys enough for your support & advice! I don't know what I'd do without everyone here! It's so nice to know that I can come here for help & reassurance.

Char, I don't know about a psych eval. I know that I've heard of people here talk about needing them before getting an SCS, but the doctor didn't mention anything about one. To me, it sounded like if I wanted to do it, all I needed to do was to talk with his surgical coordinator & they'd set up the trial. Maybe it's a matter of the insurance company wanting one? I haven't looked into this with regards to my insurance yet. The doctor did mention that sometimes insurance companies give them a hard time about having this sort of procedure done.

Pa, I'm not sure if my father is completely against it, It think he just doesn't want me to rush into anything & that he's concerned about some of the same things I am regarding possible complications/issues down the line. My mother, on the other hand, is completely against it. She doesn't even want me to consider it. I love her dearly, but we don't always see eye to eye when it comes to medicine. She's very into alternative medicine (so much so that she doesn't believe in most conventional medicine -- kinda funny since she is married to a doctor), whereas I'm somewhere in between. I've spend a lot of time trying to do more research, but as you mentioned (and I was warned by the neurosurgeon), not much is known. I did ask about removing the stimulator, and he said that it was pretty easy to do, if for whatever reason I didn't want it or need it anymore down the line.

Pa & Patti, speaking to the other person probably would be helpful, but I have no idea where that person is -- it's not one of my doctor's patients. My doctor talked to a bunch of other neurosurgeons from all over the country, so they could potentially be anywhere. But I guess it wouldn't hurt to ask!

Lorie, thanks so much for sharing your story! It was really helpful -- it definitely gives me some hope! I'm so glad that everything worked out for you!

hugs to all,
Skeye
Posted 11/16/2009 11:24 AM (GMT 0)
Oh my Dear Skeye,
It's good to hear from you even though it sounds like you have a big decission to make. My Pain Doc's have been wanting me to go that rout for a while now espessially after my failed cervical fusion. The doc told me they could wire it up to both my neck and lower back as they are both giving me hell these days. The gave me a DVD and some litteriture to read about it a few months ago and still ask about it every time I see them.
Somehow I keep thinking that they are pushing me for their own financial gains!!! They also talked about seeing a shrink and having a trial test like Father John had.

I'm such an old goat I may still go that rout, just not sure now. I'm also worried about the $$$$$$$ involved and unsure what insurance will pay? W/o any money coming in since I left work, I don't think I will do it untill I get SSD when ever that might be?

I know you have been through a lot for your age, no one deserves to be in such agony but especially someone so young!!! I would completely understand if you deside to "go for it" especially since you haven't been able to get any answers about the cause in all this time!!!

I'll be praying for you and I'm sure you will make the right desission!!! You are such a smart girl!! I just can't help thinking about the "what if's"! What if this thing finally gives you some relief from the pain? How graet would that be to finally be rid of your missery???

Just please know that we will support you no matter what you do!!!
Big Huggie~Wuggies from your Big Bro!!!
Much Love>>> Pete
Posted 11/16/2009 6:19 PM (GMT 0)
Skeye

I don't envey you at all! For being so young you do have allot to think about and consider, and a decision tht has the potential to be life changing! But reguardless of what we say to you here, or what your family, (Mother, Father, Siblings, and other family and friends) say or tell you.  You are the one that is living with, and experiencing the pain, none of us can  feel what you feel, and know or experience the pain you have,   so of course then, your the one that has make the decision!  You come off to me in your post on this forum, to be a very compassionate, and caring young lady, that to say the least is of, above average intelligence! I think you are wise to weigh all your options! But at least now,  it sounds like the Doctor is offering  you at  a glimmer of hope that your pain can be relieved. That in it's self is a break through isn't it? As far as I have heard and read pain stimulators are a rather benign form of pain  treatment, other than the surgical implanting of the electrodes, it that one of your main concerns?  I will admit it sounds like your kind of a guinea pig, so to speak, since there is only one other being treated like this? But this also gives you an unique opportunity of showing  and demostrating that  this is a potentially viable and acceptable treatment for your type of eye pain! So in way you are or can be instrumental in advancing medicine in this area. And there is something to be said for that too!

What ever you decide you know that we support you! I do wish you the best of luck on however you decide skeye!

White Beard

Posted 11/17/2009 9:34 AM (GMT 0)
Hi Skeye,

What a decision! But I tend to side with White Beard, I feel you should give it a go.
I'm at the stage of trying anything to relieve the pain and inflammation, so it may be colouring my advice!
But I just feel don't deny yourself a chance for relief when you have tried so many different meds with no success.

Do you trust your specialist? Have you asked him my stock question: WOULD YOU DO IT?
Go with your gut instincts. Half the battle sometimes is making that decision, whats the worst that can happen?
Best, best, wishes, golitho
Posted 11/18/2009 4:22 AM (GMT 0)
Pete,
Thanks for your input & support! I can always count on you to cheer me up!
The money is one thing that I'm worried about as well. My family is having a hard time with finances right now (I know, who isn't?) & it is essentially all due to 1) my medical bills and 2) my college tuition. If the insurance doesn't cover it (and from what the doc said, it sounds like there is a good chance they won't, or at the very least we'll have to fight them) then I highly doubt that I'll be able to have the trial/implant done.

White Beard,
Thanks for the compliments & support, they means a lot to me! I respect you very much. You're right, knowing that there is a potential for relief is wonderful in itself, but if I do decide to go along with this I'll have to try to keep those feelings in check. There is nothing worse than going into a procedure, etc with your hopes up, only to be let down. When I fall, I usually fall hard.
How is your neck coming along? I hope you're healing nicely!

Golitho,
Gosh I wish I had a solid gut instinct about this one. I too am at (or perhaps even beyond) the point where I'd try anything to relieve some of the pain, but for whatever reason I am hesitant about this one. Maybe because I feel that this one has the potential to hurt my body down the road & there is so little information available to confirm or deny my fears. I think I just need to think things out & talk things through with a bunch of people before I rush into anything. I do absolutely trust my neurosurgeon. I only met him once, but I was very impressed with him on many levels. I didn't think about the "what would you do" type of question, although I'm not sure he'd be able to give me a good answer since he's never had a patient like me before. But maybe I'll ask him anyway - or at least some of my other doctors who know me & my situation very well, thanks!

Skeye
Posted 11/18/2009 4:27 AM (GMT 0)
Skeye,
Maybe ask your neurosurgeon what would he recommend to his young adult daughter, if he had one? Because your age, I think, is a factor. I don't blame you for wanting to think this through. You've gone this far, a little more time taken to examine things more closely (scientist that you are!) isn't going to hurt. Between what you learn knowledge-wise, and then what your gut tells you, I think you'll find your answer.

And you'll learn like we all need to that all we can do is make the best decision with what we know at the moment, and not second guess yourself later. I'm guessing you could always change your mind and get the stim later if you decide to wait!

Hugs,

PaLady
Posted 11/19/2009 6:06 AM (GMT 0)
skeye
I am doing alright! Thanks for asking that means allot to me! You do know skeye that for such a young lady you have been through so very very much! And have had to face some very difficult things, I really do feel bad for you! a young person your age and in college should be having fun and enjoying all that lfe has to offer, not be battling chronic pain and worrying about making life altering decisions! You are a very brave and courageous young woman, and I might also add a caring and compassionate one too! That speaks volumes for your up bringing and your character! I am gled you are taking the time to research this thoroughly, to make the best decision possible! I am sure in the end it will be the right one for you. But Please make the decision based on what is Best for you! I know money and insurance is a factor, and I am sure knowing how caring you are that you don't want to cause your family any hardship, and I understand that, but with that said, if you were my daughter I would be very upset if you based ( even a little bit) your decision on that! As a Father of two girls, I would not want them to have to experience pain such as yours, and I would do anything and everything to prevent it or make it go away! I am sure or I would hope your father feels the same way about you! I know I feel that way about you! I hope you understand what I am trying to say, Please make your decision based on what is best for you and what will give you relief from pain and possible give you back the life that YOU should be having at your age!


I Do wish you strength and wisdom on this skeye

White Beard
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