[tchr012]

I am trying to patiently wait for my surgeon appointment (phone call) but it is so hard! Especially because none of the doctor office's (even my internist) will give me any pain meds anymore! So now I am just pretty much taking any over the counter meds I can plus my neurontin. I am also having a very hard time sleeping because of the pain, usual pain mixed with new pain especially since my attempted reprogramming! I have all this burning intense pain besides the sharp pains in my back and both legs so this is really not fun. I also seem to not be able to concentrate on anything else but getting this scheduled I am getting more and more stressed over school and just keeping up because even when I am in pain I am still working and have been working everyday at schoolwork. I also cannot sleep because I have been having nightmares about my accident yet again and I usually jerk in my sleep and it wakes me up and I will be in more pain. And besides all that there is still a lot of stress concerning my family situation (that I mentioned before). And a new situation just started so I am more stressed than I was
It feels my mind is running over and over again with all these thoughts and the only way I can get it to stop is by looking up information and talking to other people (especially on here) about it! I am also really wondering how this will be different than the other surgeries I have had...At least I know I get to sleep the whole time and not be woken up (which was a huge fear). I know I need to stop stressing about it and just be patient and pray for things to work out but I guess I just keep going through all of these different emotions and am trying to process everything! I really appreciate all the helpful advice and links that I have gotten because it does ease my mind a bit. I am really sorry to keep coming back and freaking out because I know you all are going through your own problems too. I also feel kind of silly freaking out about a surgery when I have already have been through (10 surgeries my whole life) so you would think I should be used to it by now! I promise to let you all know when I get any new information tho and that phone call....until then I will try not to bother the board so much Hope you all are having a great week! Take care 'sTara.

p.s. I hope I don't get into trouble asking this but do any of you that have stims, are you on neurontin too? If you are do you notice anything weird with it, is it helpful? I am being increased and have some weird side effects so just wondering about your experience and also wanting to know if it helps you besides using your stim.

Originally Posted by tchr012

I am trying to patiently wait for my surgeon appointment (phone call) but it is so hard! Especially because none of the doctor office's (even my internist) will give me any pain meds anymore! So now I am just pretty much taking any over the counter meds I can plus my neurontin. I am also having a very hard time sleeping because of the pain, usual pain mixed with new pain especially since my attempted reprogramming! I have all this burning intense pain besides the sharp pains in my back and both legs so this is really not fun. I also seem to not be able to concentrate on anything else but getting this scheduled I am getting more and more stressed over school and just keeping up because even when I am in pain I am still working and have been working everyday at schoolwork. I also cannot sleep because I have been having nightmares about my accident yet again and I usually jerk in my sleep and it wakes me up and I will be in more pain. And besides all that there is still a lot of stress concerning my family situation (that I mentioned before). And a new situation just started so I am more stressed than I was
It feels my mind is running over and over again with all these thoughts and the only way I can get it to stop is by looking up information and talking to other people (especially on here) about it! I am also really wondering how this will be different than the other surgeries I have had...At least I know I get to sleep the whole time and not be woken up (which was a huge fear). I know I need to stop stressing about it and just be patient and pray for things to work out but I guess I just keep going through all of these different emotions and am trying to process everything! I really appreciate all the helpful advice and links that I have gotten because it does ease my mind a bit. I am really sorry to keep coming back and freaking out because I know you all are going through your own problems too. I also feel kind of silly freaking out about a surgery when I have already have been through (10 surgeries my whole life) so you would think I should be used to it by now! I promise to let you all know when I get any new information tho and that phone call....until then I will try not to bother the board so much Hope you all are having a great week! Take care 'sTara.

p.s. I hope I don't get into trouble asking this but do any of you that have stims, are you on neurontin too? If you are do you notice anything weird with it, is it helpful? I am being increased and have some weird side effects so just wondering about your experience and also wanting to know if it helps you besides using your stim.

Hey Tara

Oh my goodness I wish I could just get you and give you a big........I know EXACTLY how you must feel waiting for that call. AFter I had my psych evaluation in November 09 I was told that the report would be sent straight to my consultant. However, after Christmas when Id heard nothing back I though, hmmmmm I will give it another few weeks, as everyone is only getting back into the swing of things after Christmas. So I waited, and waited, and waited and waited and it was coming towards the end of February....so I thought this isnt right, so decided to call my Dr's secretary and asked her when did she think I would find out when my trial would be, she said, well as soon as we get your report back from the psychologistWHAT?????? Here I was everyday thinking ah its ok they are busy they will be in touch etc, BUT they hadnt even gotten the report. OMG I was so stressed at this stage, (Im not that patient either) so I range the psychologist and she told me that prior to Christmas she had a temporary secretary in. But instead of her sending the reports of her clients to the relevant Dr's she just FILED THEM and It was only now that her clients (ie moi) were calling wondering what the delay was. Anyway she got the report faxed over asap and things finally got moving. But boy was I stressed. I could have done with this forum then. When I eventually had the trial I then had to wait 4 months cos my Dr's had holidays during that period.
But its done now thankfully. I hope you will try to relax and stay positive while waiting. Just think that before you know it you will in and out and on the road to recoveryThats something to look forward to. Remember that 2 weeks ago you didnt know any of this and boy were you stressed then. This stress is just a minor one its just the waiting game for you.
I pray that you will have a successful implant this time and get it back working to HOW YOU WANT IT......and walk that stage girl!!!

[tchr012]

Originally Posted by jackiekennedy

Hey Tara

Oh my goodness I wish I could just get you and give you a big........I know EXACTLY how you must feel waiting for that call. AFter I had my psych evaluation in November 09 I was told that the report would be sent straight to my consultant. However, after Christmas when Id heard nothing back I though, hmmmmm I will give it another few weeks, as everyone is only getting back into the swing of things after Christmas. So I waited, and waited, and waited and waited and it was coming towards the end of February....so I thought this isnt right, so decided to call my Dr's secretary and asked her when did she think I would find out when my trial would be, she said, well as soon as we get your report back from the psychologistWHAT?????? Here I was everyday thinking ah its ok they are busy they will be in touch etc, BUT they hadnt even gotten the report. OMG I was so stressed at this stage, (Im not that patient either) so I range the psychologist and she told me that prior to Christmas she had a temporary secretary in. But instead of her sending the reports of her clients to the relevant Dr's she just FILED THEM and It was only now that her clients (ie moi) were calling wondering what the delay was. Anyway she got the report faxed over asap and things finally got moving. But boy was I stressed. I could have done with this forum then. When I eventually had the trial I then had to wait 4 months cos my Dr's had holidays during that period.
But its done now thankfully. I hope you will try to relax and stay positive while waiting. Just think that before you know it you will in and out and on the road to recoveryThats something to look forward to. Remember that 2 weeks ago you didnt know any of this and boy were you stressed then. This stress is just a minor one its just the waiting game for you.
I pray that you will have a successful implant this time and get it back working to HOW YOU WANT IT......and walk that stage girl!!!

Jackie, thank you so much for replying back! You are so awesome and I appreciate you very much! I know I need to stop stressing but honestly I am not sure what is wrong with me today....maybe its my messed up hormones again! But anyway I am so stressed that it is now rubbing off on my cat Bella who is running around acting really crazy (well crazier than normal lol). I am sorry it took so long to get yours implanted but at least it did help and now you are doing better I guess I just expect them to be call me ASAP because I have already been through all of this and already had the regular leads and well you know the rest....but I know I have to be patient and really find some way to relax! Thank you again for your support and encouragment it is very helpful and appreciated I am going to try to calm down now although now I feel like crying....I told you something is off with me oh well I hope you have a great day! take care 'sTara

[Mark56]

Hey Tara- That call will come, and you will be knowing your direction very soon. As for me I was on 3000mg Neurontin per day pre-surgery plus other stuff and have fully weaned off of it.

Go Tara!!
Cheering,
Mark56 PJ

[Rrae]

Youuuu just get on here as much as it takes! Getting it out 'here' is better than going home and 'kicking the cat'..... right?
You'll never sound like a broken record, so don't worry about that and don't apologize!
I only wish you could get some better pain relief options......I just don't understand why they won't help you out better. They KNOW you are in pain, or you wouldn't even be looking into the SCS......They are certainly ready to get their huge chunk of change. Why on earth can't they give you something to help with your pain/anxiety......That's what bugs me. I get angry knowing that there ARE things available, but some Dr's are just so 'stingy' about this!
There are certain supplements that target anxiety and sleep, if you wanted to look into that. Local health stores usually carry things like that.
Or topical agents? Patches?

My SCS covers about 70% of my neuropathy pain, and so I'm doing this 'trial' of Neurontin 300mg 3x/day in the hopes of being able to get the other 30% pain reduced.........I don't really have much to report as of yet.
I've been doing searches on the other forums here at NT and getting input.

Do your doctors give explanation as to why they won't give you pain meds, yet they are all for getting that SCS in you? Good Lord, what do they 'expect' you to be able to do in the meantime? It's as if they are giving no regard to these issues that should be addressed. And if they REALLY cared about your welfare, they'd be doing blood workup to monitor your liver enzymes. Maybe you have a General Practitioner to help you out with this stuff? Before my pain issues were taken seriously, I was taking wayyy too much acetimenophen products (tylenol), which can damage liver - my liver enzymes were high, so that sure was an eye opener. And then, if you take too much ibuprophen products, it runs the risk of stomach/intestinal bleeding.
I sure wish they'd realize how much you really are battling these pain issues.
If they could at least give you some patches or something. Even low dose fentanyl patch could do a world of good (altho they are considered high level opioid).......but at least your liver/kidney/stomach wouldn't be taking the brunt of this........

It's no wonder you are struggling with sleep, hormones, pain, anxiety...! I mean REALLY! I can certainly relate to why you are so frustrated.

Helplessly sending hugs,
Rae

[Leesa]

Bless your heart! I wish *I* could give you a big hug too!! Why is it that the doctors NEVER call when you need them to??? You have to wait and wait and wait! It's so maddening!

I know all about the pain too ~ why didn't they give you any pain meds? good grief, you must be in agony!! That kind of pain is enough to want to put a gun to your head! The nerve pain is awful. I never had much luck with neuronton ~ it made me LOOPY. I felt all out of sorts, all goofy and confused. Plus I retained water and gained weight. That sure didn't make me feel good. So I did some research, and asked the doc to put me on Topamax, and he said "ok." I'm on 400mg of Topamax 2 times a day. It works great, and I don't feel LOOPY anymore. lol. Thank God - I thought i was losing my mind.

I pray that they call you soon dearheart. This waiting is enough to drive you nuts. I pray everything works out, and your pain is relieved and everything is JUST FINE! You deserve it. You've had enough agony and drama in your life. God bless you and please take care of YOU. Big hugs, Lee

[tchr012]

Well, I called her office today and the front desk people said that THEY HAD NO IDEA I WAS WAITING ON A CALL FOR THE SURGERY and THEY HAD NO IDEA THAT THEY WERE SUPPOSED TO CALL BOTH SURGEONS IN ORDER TO SEE WHO WOULD DO MY PADDLE LEAD SURGERY! I really should not be surprised since there is always this type of problem with her office! At least I called and they said they will talk to her after she gets done with surgery but I am going to call them back this time because I am tired of relying on them to get things done when it never happens! On top of that I am so stressed out right now because of some school stuff. And my mom is very sick so that is really bad because she has a lot of serious health problems and I am so worried about her.
As far as pain meds, I asked that dr office and she said they dont give them out because so many patients or people have abused them! I cannot believe that I have to suffer because of drug addicts! I am sorry because I don't want to offend anyone, it just doesnt seem fair that people who really need help or not allowed to get help because certain people abused it! I kinda have a sore spot about drug addiction (my dad was one). My internist/(he is my general practictioner) will not give me anymore pain meds because I would have to have another appointment with them and even though I told them I was waiting to have surgery they said that my pain doctors (since I basically have two) or the surgeon (whoever decides to do the surgery) should be giving me something. However, they did give me a prescription of lidoderm patches....and it may not take away everything but it helps a little bit and I am going to get what I can for right now

[tchr012]

Originally Posted by Leesa

Bless your heart! I wish *I* could give you a big hug too!! Why is it that the doctors NEVER call when you need them to??? You have to wait and wait and wait! It's so maddening!

I know all about the pain too ~ why didn't they give you any pain meds? good grief, you must be in agony!! That kind of pain is enough to want to put a gun to your head! The nerve pain is awful. I never had much luck with neuronton ~ it made me LOOPY. I felt all out of sorts, all goofy and confused. Plus I retained water and gained weight. That sure didn't make me feel good. So I did some research, and asked the doc to put me on Topamax, and he said "ok." I'm on 400mg of Topamax 2 times a day. It works great, and I don't feel LOOPY anymore. lol. Thank God - I thought i was losing my mind.

I pray that they call you soon dearheart. This waiting is enough to drive you nuts. I pray everything works out, and your pain is relieved and everything is JUST FINE! You deserve it. You've had enough agony and drama in your life. God bless you and please take care of YOU. Big hugs, Lee

Leesa, Thank you so much for your kind words! I am so glad you shared your experience about the neurontin because whenever I am going up in a higher dose or getting off of it I hear like this "static" in my head and sometimes its a mixture of voices. The static is like when you turn on a radio station or tv station that is messed up and all you here is static noises. I am hoping that goes away though because the higher dose seems to be doing better for me. I also read somewhere that it can cause depression feelings....I am on an antidepressant but I also experienced this especially yesterday when I was finally on my highest dose. I felt so weepy and very extremely depressed and everything was setting me off so all I can say is thank goodness I was on my antidepressant!

[smae]

Originally Posted by tchr012

Well, I called her office today and the front desk people said that THEY HAD NO IDEA I WAS WAITING ON A CALL FOR THE SURGERY and THEY HAD NO IDEA THAT THEY WERE SUPPOSED TO CALL BOTH SURGEONS IN ORDER TO SEE WHO WOULD DO MY PADDLE LEAD SURGERY! I really should not be surprised since there is always this type of problem with her office! At least I called and they said they will talk to her after she gets done with surgery but I am going to call them back this time because I am tired of relying on them to get things done when it never happens! On top of that I am so stressed out right now because of some school stuff. And my mom is very sick so that is really bad because she has a lot of serious health problems and I am so worried about her.
As far as pain meds, I asked that dr office and she said they dont give them out because so many patients or people have abused them! I cannot believe that I have to suffer because of drug addicts! I am sorry because I don't want to offend anyone, it just doesnt seem fair that people who really need help or not allowed to get help because certain people abused it! I kinda have a sore spot about drug addiction (my dad was one). My internist/(he is my general practictioner) will not give me anymore pain meds because I would have to have another appointment with them and even though I told them I was waiting to have surgery they said that my pain doctors (since I basically have two) or the surgeon (whoever decides to do the surgery) should be giving me something. However, they did give me a prescription of lidoderm patches....and it may not take away everything but it helps a little bit and I am going to get what I can for right now

Hey Tara
I just responded to your message on Facebook and so I already commented on how frustrating the whole situation must be!
But I wanted to add something else after I read this...
I was given Lidoderm patches in the spring from a neurologist that I only saw once.. but I couldn't use them because the adhesive bothered me, and it was as if the medicine stuck on my foot long after the patch was removed and it irritated and burned my skin. Since my feet are so sensitive, I couldn't scrub hard to get the adhesive off--I can barely even set them in the tub where water runs under them--I can't stick my feet in a tub of water or anything... so of course the adhesive is going to bother me!
I was given lidocaine cream from my pain management doctor the first time I saw him.. and that works better for me, though it is so painful to put on that I only use it a few times a week, instead of 3 times a day as prescribed. I have quite a few lidoderm patches, and hate to throw them away since they have been paid for. I totally understand why people can't give pain meds away to people they weren't prescribed for.. and I understand that people can alter drugs.. but I sure wish that there was a way to package the medicines so that if it turns out that they don't work for a person--like me with the lidoderm patches--that the remaining ones could be donated and given to someone who doesn't have insurance or can't afford them who also has a prescription for them. Does that make sense? Like, I wish I could give mine to you or someone else who needs them who can't afford them. (Not saying you can't afford them--but I think you know what I mean). However, since they are put in a big box and it has been opened, there's no way to show that I haven't messed with them at all.. so like many many drugs I've been given, they will eventually just go in the garbage. I really hate that. With so many people in the world who cannot afford medicines, it stinks that some people are so untrustworthy (just like some abuse drugs and it hurts the rest of us) that we can't donate what we have left (that isn't old and expired) to someone in need.
Okay, that was a bit of a rant on my part... but it's just frustrating. I've 'wasted' hundreds of dollars over the years in medicine that I have gotten a month's prescription only to find out in a few days that it won't work for me... and I hate to just throw it all away.
Anyway, I hope it is all straightened out soon and I can't wait to hear when your surgery will be. Maybe by then we will have talked enough on Facebook that we can exchange addresses and I can send you a card or letter in the mail... we'll see. I love getting mail, especially when I am hurting bad.. it cheers me up!
Take care, and we will talk again soon, on here, e-mail, or Facebook!
Love you lots!
Sarah

[tchr012]

Originally Posted by Sarah Mae

Hey Tara
I just responded to your message on Facebook and so I already commented on how frustrating the whole situation must be!
But I wanted to add something else after I read this...
I was given Lidoderm patches in the spring from a neurologist that I only saw once.. but I couldn't use them because the adhesive bothered me, and it was as if the medicine stuck on my foot long after the patch was removed and it irritated and burned my skin. Since my feet are so sensitive, I couldn't scrub hard to get the adhesive off--I can barely even set them in the tub where water runs under them--I can't stick my feet in a tub of water or anything... so of course the adhesive is going to bother me!
I was given lidocaine cream from my pain management doctor the first time I saw him.. and that works better for me, though it is so painful to put on that I only use it a few times a week, instead of 3 times a day as prescribed. I have quite a few lidoderm patches, and hate to throw them away since they have been paid for. I totally understand why people can't give pain meds away to people they weren't prescribed for.. and I understand that people can alter drugs.. but I sure wish that there was a way to package the medicines so that if it turns out that they don't work for a person--like me with the lidoderm patches--that the remaining ones could be donated and given to someone who doesn't have insurance or can't afford them who also has a prescription for them. Does that make sense? Like, I wish I could give mine to you or someone else who needs them who can't afford them. (Not saying you can't afford them--but I think you know what I mean). However, since they are put in a big box and it has been opened, there's no way to show that I haven't messed with them at all.. so like many many drugs I've been given, they will eventually just go in the garbage. I really hate that. With so many people in the world who cannot afford medicines, it stinks that some people are so untrustworthy (just like some abuse drugs and it hurts the rest of us) that we can't donate what we have left (that isn't old and expired) to someone in need.
Okay, that was a bit of a rant on my part... but it's just frustrating. I've 'wasted' hundreds of dollars over the years in medicine that I have gotten a month's prescription only to find out in a few days that it won't work for me... and I hate to just throw it all away.
Anyway, I hope it is all straightened out soon and I can't wait to hear when your surgery will be. Maybe by then we will have talked enough on Facebook that we can exchange addresses and I can send you a card or letter in the mail... we'll see. I love getting mail, especially when I am hurting bad.. it cheers me up!
Take care, and we will talk again soon, on here, e-mail, or Facebook!
Love you lots!
Sarah

Sarah, I came in to check on things at the forum between doing my homework and it gives me a break Anyway, I am so sorry that the lidoderm patches did not work for you, I did have them before and really did not get much relief and sometimes they actually burn me (which I know sounds weird). My mom who has a lot of chronic pain with the various conditions uses the patches among other things and she loves them, but I guess maybe they work for some people and maybe they dont? I also have used the lidocaine cream not for pain relief but actually it was to help with my catheter treatments I had to do for my IC. My IC got so bad I had to do it at home so they gave me that to um help with the catheter (although I still hated them and it still hurt). I actually never knew it was used for pain relief (other than what I used it for).
I also do agree with you that it would be nice to donate unused patches like that but I know that there are so many laws against it even you have to be careful with throwing away birth control or in my case hormone therapy patches because people still seem to find a way to misuse them! It makes me sad and angry but unfortunately we live in a world like that and it seems everyday people come up with new and unusual ways to get high. Your suggestion of better packaging is very good though but I don't know if they could do that because when people are determined to get into a package or bottle of medicine they seem to be able to do it Hope you are having a good day I will check fb later so take care! I also hope to have an update about my doctor soon....Love you lots! Big 'sTara