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NeuroTalk Support Groups (https://www.neurotalk.org/)
-   SCS & Pain Pumps (https://www.neurotalk.org/scs-and-pain-pumps/)
-   -   Saffy: My Journey to SCS (https://www.neurotalk.org/scs-and-pain-pumps/138676-saffy-journey-scs.html)

Rrae 05-18-2012 06:04 PM
Karen - Birthday!
 
If my math serves me correctly, this is your Birthday, yes?

I just want to wish you a Happy One and let's believe that things are starting anew for you. This is a great time to put all of our Faith and Hope together that things really ARE going to turn around for you......starting NOW!


I believe this for you Karen.
I really do... Happy Birthday :Heart:

Rae
:grouphug:

ger715 05-18-2012 08:27 PM
Meds....
 
Quote:
Originally Posted by Sophie_ (Post 880738)
Its great to have Karen posting again, we missed you and you are in someways like a sister and that's why we all care about and your hubby/partner (are you married, not that it makes any difference).

I do survive on a ton of meds, about 156 a week my hubby counted and they really don't work, they take the edge off, the side effects as we discussed in the other thread are horrible and if I wasn't on these meds I could probably drive and thus go back to work but then the pain would have me screaming with pain or at least I think they would and were all the same... Aren't we?
Here's a list of my meds and note that I hate every single one of them. As for the moderators I hope they don't remove them, not everyone should or needs to take them and we know that, we're not that stupid;

Cymbalta 120mg * *1 in morning, 1 at night,*
Matrifen 75mg * * * * Every 3 days or 72hrs, this is a narcotic patch
Oxynorm 20mg. * * *Every 4-6hrs*as required
Oxycontin 40mg: * *1 in morning, 1 at night,*
Zimovane 7.5mg * *1 in the evening @ 19:00hrs sleeping tablet,
Lyrica 300mg * * * * *1 in morning, 1 at night,*
Rivotril/Clonazepam * * 5mg *at night, * *anti twitching drug
Vimovo * * * * * * * * * 1 to be taken twice daily - useless drug for me, dunno why I take it?!
Xyzal 5mg * *1 per day antihistamine

I've tried Neurontin - hated it,
Tapentadol, the same thing
Butrans burned my skin
Zydol and Tylex for a longtime but my body just got used to them and I've discovered that the proper branded drugs work better that heir cheaper versions I got in some hospitals because they were rubbish an refused point blank. They wanted to give me a cheaper patch, seriously wtf I'd in withdrawal in no time!

That's all from me, any questions queries you know where to find me,I'm also on Skype I ya fancy a chat!

Night night

cxxx :)

Sinéad, you sure are on quite a bit of meds. I couldn't handle the Cymbalta (too tired, wanting to lay down and additional depression). I had to get off. The Lyrica and Neurontin are somewhat similiar so being on both might not be a good idea anyway. A while back, when sister-in-law had Shingles, doctor had put her on Lyrica and Neurontin. Mrs. D's response was "please tell me she is not on both at the same time".

I had problems with Lyrica as well. Take primarily narcotic drugs. Do not like doing this; but they at least get me thru the day and they do not make me tired nor do I have a big problem with memory. So many of the others affect memory.

Hopefully your pain doc will prescribe the proper meds you need to help you thru the time until new stim can be implanted.

So glad you and Karen can be in touch with one another. So very important.:hug:

ASAP (Always Say A Prayer) for you,

Gerry

anon21816 05-19-2012 03:31 AM
Sinead I'm shocked at the amount of meds you are on. If you feel that they are not working I think you should try to reduce them. The Lyrica and Neurontin definitely should not be taken together. But Lyrica on its own had me totally confusd and mentally in a bad way. You do seem to be overloaded. Maybe you should speak with your pain consultant and see if there is any way he can perhaps put you on something different and reduce some of those meds. They can't be good for you long term. Just a thought. Sometimes they are more harm than good as I found out along the way.

I'm also wondering where is the initial SCS that you had removed? Why won't your insurance company pay for the new one if the other one isn't right? I know when I went about the SCS initially my Dr said there was no way the public hospital could afford to pa for one for me that I had to go Private which was what I was doing anyway. Seems wrong you pay your insurance for them not to facilitate you. Just wondering what's the hiccup

Take care

Jackie :hug:




Quote:
Originally Posted by Sophie_ (Post 880738)
Its great to have Karen posting again, we missed you and you are in someways like a sister and that's why we all care about and your hubby/partner (are you married, not that it makes any difference).

I do survive on a ton of meds, about 156 a week my hubby counted and they really don't work, they take the edge off, the side effects as we discussed in the other thread are horrible and if I wasn't on these meds I could probably drive and thus go back to work but then the pain would have me screaming with pain or at least I think they would and were all the same... Aren't we?
Here's a list of my meds and note that I hate every single one of them. As for the moderators I hope they don't remove them, not everyone should or needs to take them and we know that, we're not that stupid;

Cymbalta 120mg * *1 in morning, 1 at night,*
Matrifen 75mg * * * * Every 3 days or 72hrs, this is a narcotic patch
Oxynorm 20mg. * * *Every 4-6hrs*as required
Oxycontin 40mg: * *1 in morning, 1 at night,*
Zimovane 7.5mg * *1 in the evening @ 19:00hrs sleeping tablet,
Lyrica 300mg * * * * *1 in morning, 1 at night,*
Rivotril/Clonazepam * * 5mg *at night, * *anti twitching drug
Vimovo * * * * * * * * * 1 to be taken twice daily - useless drug for me, dunno why I take it?!
Xyzal 5mg * *1 per day antihistamine

I've tried Neurontin - hated it,
Tapentadol, the same thing
Butrans burned my skin
Zydol and Tylex for a longtime but my body just got used to them and I've discovered that the proper branded drugs work better that heir cheaper versions I got in some hospitals because they were rubbish an refused point blank. They wanted to give me a cheaper patch, seriously wtf I'd in withdrawal in no time!

That's all from me, any questions queries you know where to find me,I'm also on Skype I ya fancy a chat!

Night night

Sinéad xxx :)

Saffy 05-19-2012 03:34 AM
Hmm Lyrica ..another one to my cant take list. I do t remember what It did. It it sure didn't suit me.

I've got a little book I carry with me everywhere .. Detailing all the drugs I've taken, and my medical history ... Oh, and my date of birth in case I forget. Lol

Hope everyone has a lovely day. As for me, I'm taking it easy as I eased off the meds s I could drink last night and I'm feeling it a bit now.

Xxxx

Mark56 05-19-2012 05:40 AM
Well......
 
Hi Saffy-

If easing off the meds last night allowed you to drink, AND having done so you were able to feel some bit of relief having done so..... then "why not?"

You have been through the wringer and could probably use a wee bit of a respite, so I hope you took pleasure in it. You should be able now to resume your med routine to keep taking the edge off, if that helps too.

Lyrica, I did not necessarily have trouble with it, although my surgeon had me up to 1800 mg per day and my pain specialist freaked at the level and what it could do to my liver.... so it was off with the Lyrica and on with the Neurontin. I don't remember right now how much of that I was taking per day. Plus, a book to keep the data, I did not commence. For a while I used a wallet card with all of them listed as surgery was so common during those years, so I always had to cough up the list, I finally just had the whole kit and kaboodle memorized.

My medical file from the past seven years..... well, it fills two banker's boxes, so keeping a book would have been something more along the lines of Tolstoy in War and Peace. A bit much, that.

Hope your Saturday is taking shape as a peaceful day.
MANY :hug:zzz and prayers,
Mark56:hug::hug:zzz some more

Saffy 05-19-2012 07:29 AM
Yep. Am taking it easy today. Just going out on my mobilit scooter for a little fresh air.

ger715 05-19-2012 09:14 AM
Saffy,
 
Quote:
Originally Posted by Saffy (Post 880858)
Yep. Am taking it easy today. Just going out on my mobilit scooter for a little fresh air.

Good for you...get out there and have a nice enjoyable ride. Would love to see you with the scooter. Know we are all in your corner; even if we are not in your corner of the world. :grouphug:

************************************************** ***************
Gerry

ginnie 05-19-2012 06:58 PM
Hi dear Eva
 
I think about you too, every night as I say my prayers. These days I am praying more than ever. We all have alot on our plates and need Gods guidance. I am praying for that now as I look for another physician to help me. I actually am asking myself, what is God trying to say to me with this situation? should I not to the surgery and try at all? Gerry Got me to thinking. Since nobody wants to cover my surgical pain, should I not get it done at all? I just don't know what God wants me to do in this. Love you all. Sleep good Eva, Mark, Gerry, all my friends here. ASAP ginnie:hug:

ger715 05-19-2012 09:50 PM
Ginnie,
 
Quote:
Originally Posted by ginnie (Post 881006)
I think about you too, every night as I say my prayers. These days I am praying more than ever. We all have alot on our plates and need Gods guidance. I am praying for that now as I look for another physician to help me. I actually am asking myself, what is God trying to say to me with this situation? should I not to the surgery and try at all? Gerry Got me to thinking. Since nobody wants to cover my surgical pain, should I not get it done at all? I just don't know what God wants me to do in this. Love you all. Sleep good Eva, Mark, Gerry, all my friends here. ASAP ginnie:hug:

I hope you don't think I meant God does not want you to have the surgery at all. But until you have the meds settled; might be best to wait. Maybe, just maybe, this particular surgeon might not be right one to do your surgery. I pray God will lead and show you the way.

love & Prayers,
Gerry

eva5667faliure 05-19-2012 10:57 PM
Quote:
Originally Posted by ginnie (Post 881006)
I think about you too, every night as I say my prayers. These days I am praying more than ever. We all have alot on our plates and need Gods guidance. I am praying for that now as I look for another physician to help me. I actually am asking myself, what is God trying to say to me with this situation? should I not to the surgery and try at all? Gerry Got me to thinking. Since nobody wants to cover my surgical pain, should I not get it done at all? I just don't know what God wants me to do in this. Love you all. Sleep good Eva, Mark, Gerry, all my friends here. ASAP ginnie:hug:
hi angel

i know oh so how you feel
it will come
you lean on me when you to
like anything else
private insurance or state
same difference
you need to shop not easy i know
always be with someone
same difference remember
you are in charge take charge

love

ginnie 05-20-2012 10:17 AM
Hi Gerry, just thinking
 
This pause for prayer and guidance is a good thing Gerry. I have time now to decide what is best. While I am looking for a new physician, I am also doing research on a site that deals with ankle problems. I have started to receive responses from those who have had the exact same procedure done as I am to have done. So far, the results are saying that I should NOT do this surgery at all. No kidding. Not one person so far, has stated that the pain from the surgery is worth the risk of further pain and sugeries. This one gal, had 11 surgeries and finally wound up with a total fusion of the ankle. So I believe this gift of reflection is Gods way of saying to me, to hold off, do all the research, maybe even get another opinion for surgery before i go ahead. This is an answer, one that God tells me to be careful with. Gerry, he does answer us if we listen hard enough. I feel better, and in no hurry to decide. I am so glad we have each other and this NT to think through things. Have a great day. ASAP Ginnie:hug::)

ginnie 05-20-2012 10:23 AM
Re: I will Eva
 
I am indeed leaning on you right now Eva. I am deep into research this morning to try and figure out what to do. I am in no hurry anymore, and will make a decision down the road when and if I am ready. So far, those that have had the surgery I am comtemplating, have NOT gotten good results. Most have many more surgeries after the initial ones. It may be pain control would be the better way to go. I do know that you, Gerry, Mark, are my guilding light with Jesus leading the way. I feel better this morning, I really do, and not so rushed to make a choice.
I hope you are better today too Eva. We sure do need each other. None of this medical stuff is easy for anyone here. This is a place of safety and comfort, and a big time out for thinking and praying. take care today Eva ginnie:hug:

ger715 05-20-2012 06:33 PM
Ginnie,
 
Quote:
Originally Posted by ginnie (Post 881139)
This pause for prayer and guidance is a good thing Gerry. I have time now to decide what is best. While I am looking for a new physician, I am also doing research on a site that deals with ankle problems. I have started to receive responses from those who have had the exact same procedure done as I am to have done. So far, the results are saying that I should NOT do this surgery at all. No kidding. Not one person so far, has stated that the pain from the surgery is worth the risk of further pain and sugeries. This one gal, had 11 surgeries and finally wound up with a total fusion of the ankle. So I believe this gift of reflection is Gods way of saying to me, to hold off, do all the research, maybe even get another opinion for surgery before i go ahead. This is an answer, one that God tells me to be careful with. Gerry, he does answer us if we listen hard enough. I feel better, and in no hurry to decide. I am so glad we have each other and this NT to think through things. Have a great day. ASAP Ginnie:hug::)
So glad you understood where I was coming from. My concern was this surgery possibly too big a risk? Not sure. Prayed God would guide you; knowing he was not wanting you to be in pain; but maybe, just maybe trying, at least with the present conditions, to possibly hold off so you would not be in even worse pain than you already are experiencing.

As you say....we just need to listen. That is very difficult for all of us. He knows us better than we know ourselves.

Along with God...we are all in your corner.:grouphug:
Praying,

Gerry,

ginnie 05-21-2012 01:07 PM
Hi Gerry
 
Pretty well decided to seek another opinion before submitting to this surgery. the responses I am getting back from those who have had these procedures is quite negative. Yes the risk is really up there fornot walking at all. I walk now with pain, but it can be controlled. So I am definately taking this time to think things through with some real prayer behind it. Thank you for keeping me in your thoughts and prayers too. This is a hard decision to make, and one I am not at all sure of. I am listening, you bet I am! ginnie

Saffy 05-27-2012 03:14 AM
Well ... Am all done and dusted. Can't say it's the comfortable ops I've had .. And the wear and tear on the back was a killer.

But .....I survived!!!

Saffy 11-21-2016 09:00 AM
Gosh .. I've just re read all of this thread and am in tears.

I am really so thankful for all the support I have been given by you all.

God Bless x


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