New member needs advice re SCS

[Lizbiz09]

Hi everyone,

I am new here and decided to join because am in pain and really scared!!
My consultant has decided the last resort for me is a spinal cord stimulator. I have had 2 spinal fuions L5S1 and both without much success. The second was to actually correct the first because the first fusion was done so badly it could have ended up paralysing me.
I had facet joint injections done a year and a half ago which caused even more pain and I ended up in bed for 3 months.

Recently the pain has just got worse, I am terrified of it because my medication is no longer helping and because my GP thinks I am already on a hefty amount he won't change it. I spent 10 hours in A&E yesterday. I was taken in by ambulance, made to wait for 3 hours and then they gave me morphine which did nothing. I cried so much I had no tears left. 7 hours later they sent me home..no advice, no nothing!! I was in just as much pain as when I arived there.

The strange thing is when I go over to the States (S. Carolina) the heat REALLY helps and I am able to do things I wouldn't even dream of doing here! (I live in N Ireland)

The thought of having a Spial Cord Stimulator scares the hell out of me because anything they have done, has always ended up causing me even more pain. Even when I had an epi with my facet joint injections, that caused an increase in pain.

Please, is there anyone in this forum who understands where I am coming from? Who understands how scary this pain can be, or someone who can make all this less scary for me? I'm terrified!! I'm still in bed and the pain is horrendous. I'd really appreciate hearing back from someone.
http://neurotalk.psychcentral.com/images/smiliesb/Sick.gif

Thank you.

[teena]

Hi, Liz!

I can't offer advice, but I can offer to say that surely someone on here will come and offer a few words...

Meanwhile, welcome to CareCure...and when you are in SC, I am your neighbor one state over...NC...:)

Hope you get some relief soon...please take care!

Have you thought about getting a 2nd opinion? Or maybe trying a doctor who is a specialist? Just a thought...

Have a better day than you thought you could!

Teena

[Lizbiz09]

Thank you Teena,

I think I have gone through the consultants possible. My consultant who did my last fusion is a lovely man who I really trust. He knew that the consultant who did my first surgery screwed up BIG TIME!! Saying I was fused at my final consultation with him at 12 month's. I didn't see him again despite me being in severe pain!! He phoned and said I was suffering from depression!! ( Of course I was depressed, I thought I was gonna be OK again and was far from it!!...words fail me for what I think of him and I couldn't put them up here anyway!!:mad:)

So my last consultant referred me to this pain Consultant who is lovely and has basically said that this is the last resort, cos I can't stay on meds for the rest of my life, and don't want to, but what else is there?? So I guess this is it????:decision:

I would give my right arm to live in the USA!! I really would!! You guys have better consultants and "more" of them! Plus I feel half normal when I am there..sounds odd but every Dr I've mentioned it to says its to do with the heat and the dry wether. Even though it rais, its not like here, where it rains constantly and is cold. Even healthy people feel it in their bones. Cold damp weather does not suit someone with two spinal fusions and osteoarthritis!! I am going to be over there in May to see my Dad and I have to sort out the rest of my wedding plans ( I'm getting married in SC in September)... (I feel like going over and not coming back but sadly that isn't possible:().

I am however going to have yet another stern talk with my Father about this. He's now a US citizen and I need him to get me in..badly. I know it can take 6+ years but at least if he started now then I would only have this SCS in me for a while and then they could remove it again. God it makes me cry that he could help if he wasn't so damn stubborn...he could have helped years ago.

I'm sorry for ranting on and on....I'm just so scared and so scared of what lies ahead. I'm 36 and this pain has gradually taken over my life since I was 21. I don't really have a life anymore, I merely breath in and out every day, hoping that one day I'll wake up without any pain or just not bother to wake up at all. I'm so exhausted being in pain, I've forgotten what normal people feel. I MISS BEING NORMAL!!!:cry::cry: its 3am here and I'm so sore I could scream:(:(:(

[Wise Young]

Hi everyone,

I am new here and decided to join because am in pain and really scared!!
My consultant has decided the last resort for me is a spinal cord stimulator. I have had 2 spinal fuions L5S1 and both without much success. The second was to actually correct the first because the first fusion was done so badly it could have ended up paralysing me.
I had facet joint injections done a year and a half ago which caused even more pain and I ended up in bed for 3 months.

Recently the pain has just got worse, I am terrified of it because my medication is no longer helping and because my GP thinks I am already on a hefty amount he won't change it. I spent 10 hours in A&E yesterday. I was taken in by ambulance, made to wait for 3 hours and then they gave me morphine which did nothing. I cried so much I had no tears left. 7 hours later they sent me home..no advice, no nothing!! I was in just as much pain as when I arived there.

The strange thing is when I go over to the States (S. Carolina) the heat REALLY helps and I am able to do things I wouldn't even dream of doing here! (I live in N Ireland)

The thought of having a Spial Cord Stimulator scares the hell out of me because anything they have done, has always ended up causing me even more pain. Even when I had an epi with my facet joint injections, that caused an increase in pain.

Please, is there anyone in this forum who understands where I am coming from? Who understands how scary this pain can be, or someone who can make all this less scary for me? I'm terrified!! I'm still in bed and the pain is horrendous. I'd really appreciate hearing back from someone.
http://neurotalk.psychcentral.com/images/smiliesb/Sick.gif

Thank you.

Lizbiz,

Spinal cord stimulation (SCS) is not dangerous and may help. I wouldn't characterize it as a "last resort" treatment. It stimulates activity in the spinal cord and, for some people, this takes the edge off the pain. You should not expect it to eliminate all pain. It is not an analgesic.

We have very little understanding of the causes of pain. Pain falls into two main categories, pain that result form increased activity coming from pain receptors (i.e. noxious sensations) and pain that result from spontaneous activity of pain neurons in the brain and spinal cord (i.e. neuropathic pain).

Opioids suppress the activity of pain neurons and help suppress both types of pain but the body accommodates to the presence of the opioids and the dose must be increased until the side-effects often become intolerable. For many years, doctors were afraid to use opioids adequately to treat pain because of the stigma associated with opioid addiction. However, many methods are now available with other drugs to devise combination approaches that often can reduce chronic pain to tolerable levels for a majority of people. High dose opioid therapy (such as the Duragesic path) is often regarded to be the "final resort".

Anti-epileptic drugs, such as gabapentin (Neurontin), pregabalin (Lyrica), valproic acid, and other drugs tend to reduce neuropathic pain. Again, the body accomodates and the dose must be increased to very high levels to remain effective. Such treatments are not analgesic, i.e. drugs that eliminate pain sensations. It just reduces the excitability of neurons so that they are not firing spontaneously. Sometimes, these drugs, in combination with non-steroidal anti-inflammatory drugs and opioids, can provide relief for combinations of neuropathic and noxious pain.

Wise.

[teena]

Hi, Liz! I hope Wise's words above helped to ease some of your questions. He is probably one of the most common sensical people I have ever known online. He surely knows what he is talking about, and does not look at things through rose colored glasses so to speak.

I'm glad he replied to you...

I am coming back very soon to reply to what you said to me earlier...

Meanwhile, I am going to say...TRY to relax...enjoy minutes and seconds...try not to worry about the big picture so much...it will overwhelm you...and you have a wedding to plan!!! :D :D :D

Be back soon.

Teena

[teena]

Hey, Liz...as promised, I came back...

You sound normal to me, btw...:D

It IS frustrating to have to slow down with life. I know that one first hand. I don't have a spinal cord injury, but I do have a birth defect of hip/limp/arthritis. Some days are way better than others. It's hard to watch friends go do stuff while I sit on the sidelines. I can't even remember how long it has been since I was able to walk through the mall without having to sit down a thousand times...grrrr...

And most of the folks here would give their right arm just to walk, period.

I guess it always comes back to the old saying that we can always find someone who has it harder than we do...and that take on things makes us have strength to carry on when we think our strength is spent...

I can't imagine trying to plan a wedding from another country! PHEW...that in itself makes me want to go in 17 directions at once...lol. I hope you have a lot of support here to help you plan...if not, you need a wedding planner for sure...lol.

I'm glad you found someone to love, and someone who understands and supports you through your pain...

I hope the trip in May is better than you anticipated. If you get stuck trying to find something for the wedding, let me know...I have a zillion bride's magazines stacked up...just wishful thinking...lol...and I will happliy try to help you find websites or places in SC for what you need...a lot of planning can be done online...:)

Please take care, and let us know how you are doing...there are people who care here, and people who will rejoice for your wedding plans too...

If you need to talk, I will listen.

Take care and God bless!

Teena

[bollefen]

many of us feel your (and our own) pain.

there are several threads in this forum about them. Wise is wise they help to varying degrees but do not eliminate pain. I have one. read my posts and if you have questions ask. Danimal has one as well, hers is pretty recent and she has a blog on it and the process.

"embrace the pain, fear makes it worse" easier said than done.

God Bless.

Kindly,

Bill

[Danimal]

Hi LizBiz:

I am 29 and have severe back and leg pain. I had 2 big surgeries, one when I was 18 and one when I was 20 but they didn't help so I've managed my pain with strong meds since then. I had an SCS implanted on 1/16/09. I started a blog to document my whole experience with SCS..maybe it will help you. I talk about what the trial procedure is like and I have a picture of what I look like afterward and I have posts on the surgery itself with pics. and updates on recovery, etc.

How old are you? Are you young? I am hoping to get pregnant in 2009 and will be posting about SCS and pregnancy..if it works out that I can get pregnant. Just thought I'd mention that if you are young and pregnancy is on your mind too.

Anyway..I really know how you're feeling. It took me a long time to decide about the SCS. You aren't alone..it scared the crap out of me.

Ask me anything you want.

Here is my blog..don't be afraid to post comments!

http://chronicstimulation.blogspot.com/

[Danimal]

oh..just noticed that you ARE young...only 36. Ok..I really, really understand where you are coming from then. It's hard being so young and in pain, isn't it?

well, you have friends here..don't worry. And, like I said, don't hesitate to ask any questions. I do try to post about a lot of the pertinent SCS issues on my blog but sometimes people have separate questions too.

[Danimal]

PPS- I imagine the weather in N. Ireland is really rough on your back. I live in a climate in the states that changes very frequently..from cold and damp one day to warm and dry the next and the rainy, damp weather is sooo bad. Makes me ache all over..but then I do have the benefit of when the spring and summer comes and it's warm.

sorry you have to deal with that damp weather a lot!

[Lizbiz09]

Hi everyone,

I want to thank you from the bottom of my heart for replying to my post. In fact reading what you all have written has made me cry. You spend your life in pain, thinking you are on your own and no one understands what you go through every day, until you find a site like this. You have all been very open and welcoming and believe me that means more than I can put into words!!!:hug:

Its now Thursday morning, 7am and the pain has not eased at all.. I am so tired...:zzz:tired of being in pain and just tired in general. I am beginning to feel like a zombie.:zombie: I badly want to call a Dr out but don't want the hassle they give me. My own GP is not at work until 1.30pm today, and much as I will want to phone him too, he is reluctant to come out to give me anything.:cry: I don't know why my pain has flared up so badly lately, sometimes it just does without me over exerting myself at all, and that could just be washing the floors!!

Teena, :)thank you for your kind and sweet words, you have made me feel very welcome and I really appreciate that. Thankfully I do have a wedding planner who is great, I couldn't do any of this without her!! The main thing that settles me though about getting married in SC is that when I am there I know my pain will ease so I know I will actually be able to enjoy my big day. However, if we had decided to have it here (which from the beginning we decided was a NO NO!!) I know there would have been a possibility that the pain could be so intense that I may not have made it to my own wedding, or if I did, I'd not have enjoyed it.

We know that by having it in the States that it now going to be very small, alot of people who said they were going to be able to make it, just can't now because of the recession. But my partner and I discussed it and as long as we are there, then I guess thats all that matters.:)
As for you having wedding magazines..just in case, I'm sure "your" Mr Right is just around the corner, unless you have him already and he just hasn't asked you yet. I never in a million years thought I would meet mine!! And although he has his faults, like the rest of us, thankfully he loves me regardless of the pain I'm in.

Daminal,:) thank you for what you wrote, I will definitely be going to your blog. You sound very sweet and very caring and thoughtful. And yes, I would give my right arm to have a baby..it's something I dream about all the time and saddens me that it may never be possible. The thought of never being able to be a Mom is more than I can bare! So I will be waiting to see what you find out about that.

Wise, :) you sound like a lovely man and I thank you for everything you wrote you sound as though you definitely know what you are talking about!! At the minute I am taking, Oxynorm, Oxycontin, Gabapentin, Diazepam and Nitrazepam!!!! (yeah, I know..it's a lot!!) For whatever reason I am not getting any pain relief!!

I am just so depressed because I am not able to do the things I want to do. I have been lying in bed thinking of all the things I need to do and the things I want to do and it drives me insane!! I feel lost :(:cry::cry:. Lost in a world that keeps moving on and I am being left behind. Having had this since I was 21, I feel like I have missed out on so many things. I used to be EXTREMELY active and you couldn't have kept me indoors!! I stared working as a nurse when I was 21 despite my GP telling me I would never handle it. It was tough, but I got there. I worked until 2002, when my body just couldn't take it anymore and gave up. I now watch people going to work and am really jealous...who would have thought I would ever have been jealous of that??:dontknow:

The pain is horrendous at the minute, in my right groin, right hip and down my leg..severe sciatica!! I had an MRI done a few weeks ago and still haven't got the results. Great health care system here!! I used to be a private patient, which made things so much easier, but because the SCS is so expensive my Consultant told me it would be best to go back onto the NHS so I wouldn't have to pay for it. I wouldn't have been able to anyway, so I just have to wait for everything and can't contact my Consultant the way I used to because I'm no longer private!! It sucks, because when pain got bad before I was able to contact him and then he would tell my GP what to do :(

God I am so sore, so lost, but thank you all from the bottom of my heart for being so warm and welcoming!! :):)
To be honest I didn't think anyone would reply!!

Love and hugs:hug:
Liz

[Lizbiz09]

Bollefen :) I'm sorry I forgot to mention you in my post. I do apologise for that. I will be reading through what you have all written to see if I get a better understanding of all of this and maybe to see if there are meds that you guys are on that I could suggest to my GP. As with all meds your body just gets used to them and I guess thats what has happened to me... I just want days when I'm not always in bed because that in now what my life has turned in to :(

[Lizbiz09]

Danimal,

I've been reading through your blog..I think it's great!!:applaud: You actually sound alot like me!! LOL!! we seem to have similar personalities! I refer to things the way you do and I love the way you have given everyone their own name, to avoid giving their real name!! You have made reading your blog funny yet to the point which I really like. Still have alot more to read though, but it's enjoyable reading!!;):):)

However, I wanted to ask if you happen to know what the difference between Oxycontin and Ms Contin is? I'm on Oxycontin and Oxynorm..is MS Contin the same as Oxynorm??

Liz ;)

[Lizbiz09]

The pain has got to the point I don't even understand exactly where its coming from anymore!! It's everywhere and scaring the hell out of me :(

I had to get the Dr out today....again!! It wasn't my usual Dr and she gave me an injection of codeine and an anti inflammatory!!!:confused::mad: I could've laughed if I'd not been in tears with the amount of pain I was in!! It has done nothing, so I am left exactly the same way as I was earlier. It seems never ending!! I just want to crawl into a hole and give up..I've had enough. I'm now so tired I don't know what to do with myself. I am in so much pain, I can't walk. That Dr was a damn joke!! :mad::mad:. My other half is trying to phone him while he's at work to get something srted cos I'm in that much pain I can't get my words out properly!!!

By the way, is this forum related to one with exactly the same lay out??:confused: Cos I don't want to be duplicating what I'm writing if they are the same but with different names!! The have exactly the same format so I am really confused!!:confused::confused:

Liz

[Danimal]

Hi LizBiz:

I'm so so sorry for what you've been dealing with. I can absolutely relate to the whole feeling like life is passing you by. Just yesterday I was saying to my husband how I feel like everyone around me is going on with life and doing exciting things...working in cool jobs, getting pregnant, raising kids, going on trips, buying houses, etc. but I'm not. I don't feel envy or anything but I just feel like chronic pain is making me put my life on hold. Ugh. I try not to think that way too much because I know I'm actually pretty lucky with what I've got but sometimes it's hard not to feel a little down.

Anyway..don't despair in regard to the baby thing. It can be done even if you are on meds..even if you have a stimulator. I met with this maternal/fetal specialist at one of the top hospitals in the country (in the world, really) and he said nothing about my situation would make him say that pregnancy was not ok for me. So don't feel like that isn't an option for you (assuming you have no other problems beside the pain??). They can manage pregnancy for you while you are in pain. You can take meds...methadone is one that they've done a lot of research on. The baby will be born dependent on the medication and will have to be weaned off of it but this doctor said it is quite common (and breast feeding helps). In terms of the stim...he is recommending that I turn the stim off for the 1st and 2nd trimester and then maybe turn it on if I need it for the 3rd trimester. I'm meeting with my pain doc on Tuesday to discuss alternate med options..some meds are better for pregnancy than others. It IS a little more complicated and you'll have to be followed by a high-risk OB but please, please don't feel like it isn't an option for you. If it's a dream of yours..you can do it. It will just take a little more thought and a good doctor but you'll be ok. Plenty of women have gone through the same thing before us and have had very healthy babies. Just find an OB that has experience treating women with pain.

Oh..so oxycontin is oxycodone continuous release (percoset continuous release). The "contin" is short for continuous. MS Contin is Morphine Sulfate Continuous Release. The M stands for Morphine!

I'm glad you found my blog..I hope it may help you in some way!! You aren't alone. ;)

[Lizbiz09]

Danimal, you are an angel..really you are!!:)

It's so nice to find someone who actually understands where I am coming from and can empathise with what I am going through!!
I have no other medical problems apart from this damn pain and to be honest if I was ever lucky enough to get pregnant I would love to go and stay with my Dad cos when I am there my pain is significantly reduced. It's really unbelievable!! I'm like a different person when I am there.

I am due to go over in May to sort out the rest of my wedding. I was upset though to get an email from my sister (Who also lives there..my dad got here in 4 years ago, although it takes about 6 years to get in, thats why I want him to get me in!!).
I have been posting on facebook that I have been really sick. She emailed me and told me that she didn't think I should go over and that she and my step mom would sort out the things I need to do. Now don't get me wrong, I was grateful for the thought but at the end of the day its "my" wedding, and the first one (and hopefully the only one) I will have. I want to sort it my way. I don't want someone else choosing my flowers, cake, talking to my photographer, wedding planner etc...thats my job. Also my fiancé thinks the break will do me the world of good, especially as it will be warm and my pain will reduce. Every time I have been before, I come home feeling so much better!! She thinks I am being stubborn by saying that I 'will' be going over.. I don't think I am, do you?? She doesn't seem to understand that this is a big day for me and I want things done my way, the way I have planned it all in my head!! She has been married for 14 years and I don't think she remembers how much we all did for her, for her wedding, so as she had it 'her' way.

My Dr prescribed me lyrica yesterday which has helped a bit, the only thing I hate about it is that it makes me put on weight and that's the last thing I want..I'll not fit into my wedding dress!! So I'll take them until this eases a bit more and then hopefully stop them.

I have still been reading through your blog and I just love the way you have written it. Thank you for being so honest in it..it makes it all sound so much less frightening. :thumbsup:

Hope you are having a pain free day :)

Hugs,:hug::hug:
Liz

[teena]

Liz, it is your wedding...nobody can take the fun of planning it from you...if you feel up to going, you should go...just remember to take it easy, and take care, and delegate tasks that you can...example...say you are looking for white tapered candles or whatever...HOW many kinds of tapered candles are there in the world? That one could be done by anybody...but the bigger things like the cake, the bridesmaid dresses, etc...should have your stamp all over them...lol.

Enjoy, don't stress!!!

Take care!

Teena

[Danimal]

Hi Liz:

No..of course you aren't being stubborn! This is your wedding, after all and I actually think it would do you a world of good to come here on a little planning trip. Yes, the flight may give you a bit of a flare-up but, as patients in chronic pain, we also have emotional pain to deal with as well..and that is something that cannot be ignored. I think this little trip will help you with that..get you in the wedding planning mode and cheer you up a bit. I guess I would be more sad knowing that I couldn't go plan my own wedding because of my chronic pain..so even though your sister is trying to be nice..that would have the opposite effect on me. I mean..how sad would it be for you to sit at home and have your sister call you to tell you about your own wedding plans..when you could be there yourself!!

So I'd just say to your sister that you appreciate the thought but this is something you really want to do and something you've been looking forward to. Yes..you may have to take naps here and there and take it easy but that is OK.

When are you planning on going??

So how long have you taken Lyrica for? The weight gain side effect does not appeal to me either. I've heard people can gain like 20 pounds in a week?!! That scares me!!

[cess]

Liz, what I can offer to you is a prayer
that our Lord would guide you, whatever
challenges you will face. Hope someone
could help you. I know it's hard to have
an injury, because I already knew lots of
people who have injury with their brain like
hydrocephalus that suffered too much because
of their injury. Hope you'll get well soon.

[metronycguy]

lizbiz, do a a search on care cure for spinal cord stim, scs and you will find lot of post on them, they have been around for a long time. if you have a trial done, it is not that invasive, and if it works, you may be fine. dont let them talk you into the lami implant without the trial .
most of the people here that have pain as the result of nerve damage have had no success from them.
including myself, i think kap tried recently, his was a no go
the literature, doctors, and representative all lied to me,. they make big money..
speaking of lying, how do you check the records on a doctor that says he has a zero infection rate and does over 200 scs implants a year, he is either real good, or a lier, and i want to know.
i dont understand how they blame my scs failure on to much scar tissue. the way i look at it, the leads are put in above the level of injury, , there is no scar tissue up there.
i cant see how scar tissue below the leads, lower on the spine would affect the scs working.
i could see if the scar tissue was between the injury and the brain, i could see that blocking the signal.
unhappy customer.;the bottom line is the type of inequity makes a big difference in the success, if you have x injury it has a very poor outcome and docters that specialize in these area know that and wont recommend them, cause they know they wont work/

[Lizbiz09]

Thanks Guys, I responded to my sisters' email and basically had said what you, Danimal said. She needs to understand that this is a very special day for me and the last thing I want is someone else choosing the things I need. Her argument is that because I am having it over there, and because the recession happened which we obviously had no idea would happen, that not as many people who said were going to be there, now won't be able to make it. So because it's now going to be a small wedding, she thinks that there is no point in me going over there and would be best if she and my step mom organised everything!!! My fiancé and I do not agree at all. Regardless of how small it is, it's still my "wedding" so I still want to organise it my way.

Cess, thank you for what you wrote, that means alot!!:):)

Danimal, I will be going over Mid May, which I think will really do me the world of good. The heat will help and my Dad has a pool, so swimming will also help with the pain. I know the flight will be a nightmare as I am used to going over with my fiancé and haven't flown on my own since my surgeries.So I pray will be OK!! :pray: But if I get wheelchair access the whole way over I should be OK. (fingers crossed)

Mike I am so sorry for what you have been through. Yes, consultants can be real money grabbing B******s!! My first surgery I paid for. It cost me £15,000! Thats about $27,000!!! So I was mega peeved when it didn't work!! I tried to sue the guy but had no luck and wanted to badly because when I had my second fusion and they opened me up they found that not only was I not fused at all, but 3 of the screws were loose .. one of them was so loose that if they had left it any longer I would have been paralysed because it was so close to my spinal cord!! I was furious!! and terrified too :mad::mad:I REALLY thought I would have no problem suing him but the second surgeon would not admit what he had said to me and ended up never getting back to my Lawyer!! So I can understand how angry you are!!! I would love to know how they are able to get away with the way they treat us too!

We have the National Health Service here which basically pays for any procedures, tests etc you have to have done. I was a private patient and paid for everything myself because it made life alot easier, you get seen faster and are basically treated better because you are paying for it. I had been seeing my pain consultant privately, but he recommended that I go back onto the NHS because of the cost of the SCS and all of the tests etc I need to have done before hand! Its not great because I can't contact him when I need to, and everything takes so damn long. There are only a couple of pain psychologists who deal with this so he has absolutely no idea when I will be seen!! I will be having a trial SCS first though, but when that happens is anyone's guess. You talk about scar tissue, and believe me I have alot of that!! My fusion incision is 8inches long and as you can imagine having one done over the first one, alot of scar tissue has built up, so that does now concern me somewhat!! I use a hot water bottle everyday...all day and have basically scalded myself trying to ease the pain!! My back is a mess now and I'm embarrassed if anyone sees it, as they kind look at it but have no idea what it is. My GP is horrified by what I've done to it, but I will do ANYTHING to try and ease the pain!!:(:(
I just wanted to start getting as much information as possible and find as many people as I could that I can talk to about all of this and people who understand the gravity of the pain I am in, because it frightens me, especially lately as it has changed an become more severe!! Like I said in my second post, I never thought anyone would actually reply!!

Pain today is as bad as ever.. god I am sick being in bed.:sick::sick: I made dinner last night for my fiancé's son's birthday, with the help of my fiancé and it nearly killed me. I had a few glasses of wine which helped the pain a bit ( I know..I shouldn't be drinking at all, but it does help the pain!!) I tried sitting downstairs to watch a movie and failed miserably!! My fiancé had to carry me back up to bed and we watched the movie in bed. (too much information??..sorry) Managed to fall asleep..amazing!! but woke an hour later in severe pain again. So have been in bed ever since. It's a nightmare.. I am so sick of my bedroom, especially as it needs decorated and I have so many other things I NEED to do and can't!! God I am miserable!! :(:(:( Sorry :sorry:for babbling on and on but at least you guys understand this pain... you have all been there, are there and know what am going through and I am SO glad I have found you all on here.. Thank you so much:hug:

[CurvySAT05]

Hi LizBiz,
I'm so sorry to hear about your chronic pain. I have been/am in the same situation you are. I have now had 4 fusion surgeries for my back and am fused from the bottom of my neck down to my sacrum. I had 3 of my 4 surgeries done by the same surgeon, who come to find out, didn't know what he was doing!! I ended up with nerve damage in my spinal cord to the nerves that go to the right leg. I have HORRIBLE pain in my right leg, can't feel the bottom of my right foot (can't feel hot/cold or pinpricks, etc) as well as chronic pain in my low back.
After my 3rd surgery I remained in constant pain and went to the surgeon to find out what was wrong, only for him to tell me that the pain was all in my head and that if I took an anti-anxiety medication it would help me calm down and take my pain away. Thats when I knew that something was not right with the surgeon and decided to RUN away from that office (well...get out as fast as possible...running is not an option). Immediately I sought out a second opinion only to find out that I had 2 loose screws, 2 herniated discs, the bone hadn't fused and a bunch of other problems. I got a 3rd opinion to make sure that surgery was the road I was headed down and that the 2 opinions were in agreement on what needed to be done. I decided to go with the 2nd opinion doctor for surgery. By the time I went into the OR (about 1 year after my 3rd surgery) the screws were so loose that he could pull them out with his fingers, no tools required.
I still have nerve damage from the 3rd surgery, and I don't expect that to go away anytime soon. For over a year after surgery we tried managing my pain with OxyIR (Oxycodone Immediate Release), Duragesic Patches (Fentanyl Patches), Soma (muscle relaxer), Neurontin, and other meds. My orthopedic surgeons office decided that they were out of options for treating my pain and send me to a pain specialist. Immediately he thought that I was a candidate for the SCS and put in the paperwork for my insurance company to get a trial SCS.
As soon as I came out of the OR with the trial implant I knew this was the device for me. My pain was about an 8/10 the day of trial implantation, and went down to a 2/10 immediately after "surgery" (they just insert a little needle into the spinal canal to insert the leads, no real incision). I continued with the trial for 5 days during which time my pain never got above a 5/10. I learned to reach for my SCS remote instead of pain pills when I needed a bit of extra relief.
My pain specialist had a hard time implanting the trial stimulator because my spinal fusion is so long, so he sent me to a spine surgeon for the permanent implant. I had the permanent implant done on 3/10/09 (almost 1 month ago) and it has been wonderful! While I still have pain, it is significantly less than it was previously and I can control it with a remote instead of a pill. I am still on all my medications, but hope to decrease some of them in the near future. As it is now, I don't need to take the Oxycodone as frequently, allowing myself to go longer between doses and thereby decrease the number of doses each day.
I would not be worried about scar tissue in your case (although I am not a doctor). The SCS leads are placed in the epidural space inside the spinal canal. It is scar tissue inside the spinal canal that can sometimes get in the way of having a SCS placed. Even after my 4 surgeries, top to bottom, I was still able to have my SCS placed with little trouble. I am a proud owner of a Boston Scientific (brand) Spinal Cord Stimulator which I have named 'Buzz'. Buzz is on 24/7 and allows me to lead a more normal life. Buzz's battery will last up to 25 years and is charged with a wireless charger that is placed over the implant. The SCS can be programmed to cover up to 4 areas of pain (mine is set to cover right and left leg as well as low back) and can have up to 4 programs set (you can have a different setting for sitting down versus laying down, or a whole host of options). The remote allows you to turn up/down one area at a time or all 4 areas at once and also allows you to switch between programs.
A website that really helped me when looking to get the SCS was: http://www.raceagainstpain.com/hope/categories.cfm?langid=1.

If I were you, I would still want to go to SC to pick out the stuff for YOUR wedding despite what your sister and step mom think. They do not live in your body and therefore can not decide what you can/can't do. I know that if you didn't feel comfortable coming to the states that you would likely stay home and allow your sister and step mom to choose (with your guidance) the stuff you want for your wedding. When you come out in May enjoy the time you get to spend here with family. Pick out all the stuff you need for the wedding and most of all relax! You deserve a break from the daily pain.

Please feel free to ask any questions you have about the SCS. Buzz has been a blessing to me, and I hope that you too can benefit from a "Buzz" of your own!

Mandy

[metronycguy]

A website that really helped me when looking to get the SCS was: http://www.raceagainstpain.com/hope/categories.cfm?langid=1.

i just saw this website mentioned here, if one look back around November of 2007, my post . concerning my implantation and no pain control. and to add to the disgust was finding out after the surgery that Boston scientific does not track success or failures for pain control, even though all the literature they give you will use terms like 85% and better relief.every time i see Boston scientific, precision plus, i am going to tell my story ,


it is also very important to gind a surgeon that implants a lot, not the 10 per year. i had boston scientific teacher, who implants about the most in the east , he is a neurosurgeon so he does both implants, over 200 laminectomys scs and 200 scs with needle. a year.aer
the scar tissue excuse diesnt make any sence and i think it is just a buzzword they use for " we dont know why it doesnt work" but scar tissue sounds good

bottom line scs, have a very poor success ratio on sci pain. quite a few sci doctors have told me that , i wish i had met them before the implant. no mater what the salesman tells you

[metronycguy]

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[edsmithjr@ftc-i.net]

Hi Liz, Next month I will be 76. I have had pain and back surgery, and bone grafts in the femur for cysts that ate the bone leaving just an eggshell. I had a hip replacement that helped a lot but recently I got up one morning and could not walk at all for the pain in rotating my hip. The pain was down the front of the bad leg. I stood it for a few days, I think it was, then went to the dr. I don't want any steroid injections or meds that put the weight on, so am just taking it a little more easy after about a month in bed. Had to discontinue nurses, etc as it is so expensive. My husband is totally disabled, and it is so hard to keep up our home etc . I read your message and it sure made me feel bad for you, also. We are living in SC., that is why I wanted to write you. It helps to have someone to talk with about awful pain. I am taking percocet and have been for many years. I don't take much. Unless it is acute pain, I take no more that four a day of the 25 mm of it. Lately, I have increased it to two twice a day or three times at the most. I don't want to be dependant on meds, but if we are to keep our little home, I must get some relief. Pain makes me cry easily too. How about you ? Keep in toucn with us and when you need a shoulder to cry on, I will be here for you. Today is our 58th wed anniversary. We are indulging in an ice cream machine so we can have healthy deserts with berries. When you come to SC, come visit us ? Big hugs to you. Leobird

[Lizbiz09]

Wise, Danimal, Metronycguy, Bollefen, Edsmithjr@ftc-i.net, (Edsmithjr@ftc-i.net, Curvysato05), Teena, curvysato5, Cess, Leobird, and everyone else, I am so so sorry :sorry: that I have not been back here until now, but I guess the easiest way to say it is that..... life has just been getting in the way!! :(:decision: I just hope you guys are still hear... I really need some advice. I will apologise now as i have compltely poured my heart out here!!


I am sad to say I am still in constant pain :drunk: and trying to organize my wedding in South Carolina from Ireland!!

As I explained, earlier in the year the pain was so severe in my hip and down my leg that I couldn't walk, get to the bathroom, nothing!! My fiancé and I called for Dr's to come out, one did, one refused!! My fiancé then got so frustrated that he called for an ambulance, after me telling him that it was a stupid idea as they would not help me!! The paramedics were great...that was about it.... I was left lying in A&E and eventually was given an IV of paracetamol ( VERY mild pain relief ) They may as well have given me an IV of water, as it had NO effect at all and wouldn't :nono:.... I couldn't believe it! :doh:
Well actually I could. I used to work in that A&E and if anyone came in with a "back" complaint, they all naturally assumed there was nothing really THAT bad wrong with them. Any way, I was eventually given morphine, however, as I had been in pain for so long and lying on a trolley for hrs, it had no effect!! I was then taken to lie in a bed, and as they were helping me into the bed they noticed the scars from the fusions and the marks on my back from constantly using a hot water bottle to the point it has left burn marks in my back, It was only then that they realized that I was not faking this pain......that it was VERY real!! However, by that point it was too late as they couldn't do anything else for me! :doh:
I was there for 7 1/hours!!! I left feeling worse than I did when I arrived!! :rolleyes::rolleyes:


I then went to South Carolina in May, on my own,...now the weather was not great when I arrived, it was raining but at least it was warm... I was able to walk further than I can while I am here, I swam, went out for the day to a festival, and had no repercussions from it!! Well, my hip still gave me alot of bother and I did have to spend alot of time with a hot water bottle on it in the evenings, But mentally I felt better, happier, more content and more positive!! :thumb:
By day 10 the rain had stopped and I was completely pain free...I couldn't believe it!! I got out of bed and although I was exhausted because of all the things I had to do whilst I was there, I wasn't hurting!! I was able to leave my walking stick behind and go out...my confidence was higher than it had been in a really long time!! :)

When I came home I was informed by my fiancé that the Pain Clinic had called and I had an appointment the following day. What I hadn't been told that it was more of a meeting than an appointment!!!!:mad:

I walked in with my fiancé only to be greeted by my Consultant, the Nurse Practitioner who specializes in SCS, a pain Psychologist and another Consultant!! They went through some of my history, asking questions as they went along. I was then asked when the last time was that I had gone to a hospital to get morphine!!...My jaw hit the floor!! :jawdrp: I was livid!! They were implying that I was popping in and out of hospitals to get a "fix" of morphine!!!! I was so disgusted!! And FURIOUS!!:mad::mad::mad:

I informed them that I do not go to hospitals for Morphine...in fact that was the first time I had 'ever' been to A&E!!

My Consultant proceeded to tell me that oxycontin is a morphine derivative and that I was taking enough to kill him. I have heard all this before!! I can't help the way my body reacts to medication.
I was then asked if I was actually "taking" my meds or was I "stashing" them!!! Once again I was completely stunned........ They said I didn't look like someone on Morphine, in fact they said I looked quite well! Surely this is a good thing??:confused::confused::confused: They said that they wanted to reduce my Oxynorm, which my GP had already started doing, and that they wanted to put me on a Pain Management Programme first as they thought this may help, and basically wanted to try everything else first before they decide to go for the SCS.

I didn't see any problem in that at all, in fact after so many years without 'ever' having any intervention like that, I was kind of delighted! :thumbsup: This was all on 2nd June!!

My Gp has been reducing my Oxynorm.... and has now reduced them to 25/wk..... I am in agony!! :( He wants to reduce them even more to get me off them completely!! Now don't get me wrong, I would love not to have to take any meds, however, I am not getting any help...
I have no idea what happened about my Pain Management they were so keen to get me started on, or the Ultrasound Scan I am supposed to have on my hip. So at the minute I feel so lost, frightened, scared, every emotion you can think of and i am sure you all know them all!!!

The Lyrica he put me DID make me put on weight and my wedding dress is now too tight!! So I am practically starving myself to make sure I can get into it again!!


So this is where I am in my life right now..... I have been killing myself planning my wedding, and thank god I have a wedding planner or I would defiantly have gone mad!!! :cry:

My fiancé has done NOTHING!!! The house needs cleaned and I am now convinced he thinks a fairy comes in and does it! I don't know if I am stressed about the wedding and little things are getting to me but he just doesn't seem to give a damn about anything and it is killing me!! I had to actually get a ladder and change light bulbs outside that needed changed about 6 months ago!!:mad: He is 6foot and a strong guy, why on earth couldn't he do it, especially as I had asked numerous times!! Also, why should I have to bloody ask?? Can't he see that it needed done?? As well as all the other things that need done!! :dontknow:

I feel as though I am permanently nagging but if I don't say anything nothing gets done! At the moment his son is with us for the week (he's 10, a lovely kid!!), which he failed to tell me about and even his son thinks his Dad does nothing!! Its awful! :o:o
You see it is "my" house, everything in it is mine, and it just feels as though he has NO respect for the house or anything in it.... Basically I think his philosophy is its Liz's house so its not his responsibility!!

He is breaking my heart!! I was told that it was important that my partner was there for me and didn't add to the stress in my life, especially as once I am stressed my pain level shoots up!!! And he knows that!! He was there when they said it! I mentioned it to him when we left and told him that he was at times the reason I end up in such horrendous pain. He agreed...that was it..he agreed but has done nothing about it!!
Am I the only person with a partner like this??:(
At the moment I am in bed, I have been begging him to vacuum all morning.........he is reluctantly doing it now after much persuasion!!


I am sure you are wondering why on earth I am marrying him......I do love him, he "can" be very caring, he has stood by me since my last surgery and I had only known him 5wks prior to surgery. I didn't expect him to stick around, in fact I told him it would be better if he didn't. I didn't want to put him through all that and to see me in pain, but he wouldn't leave me.
But at the moment I do not like him very much!! I can't understand why he is so complaisant :confused::confused::confused: Or why I am the one who is always in tears!!!


I am not sure if I mentioned previously that my Mother is NOT attending my wedding. :( :( However, she did want to be involved and came with me to choose my wedding dress and was interested in what I was planning and what colours I had chosen etc. Even though she is not going I had sent her a Save the Date card as she wanted one. she also wanted an invitation. I sent them last week... She texted me when she got hers and was furious that I had sent her one. What could I say? If I hadn't sent one I would have been in the wrong too!! :hissyfit:My younger sister then emailed me and told me what a selfish B***h I was and that I was thoughtless because the invitation said "Mr & Mrs Mulholland" and did I not think before I sent it what kind of impact that would have on my Mother!! Continuing to tell me how upset my Mother was and how self centered I am!!! My Mother is now no longer speaking to me!!


I feel unbelievably lost, hurt,alone and confused..... I thought I was supposed to be feeling excited about getting married and be happy for the next 2 months!!:confused::confused:


My sister got married over 2 years ago and my Dad was NOT invited to her wedding so as my Mother would not be hurt. :evil: My Mother has always said that if we invited my Dad to our weddings then 'she' would not attend!! (My Dad is remarried, to the woman who was his secretary, they have been together for quite some time! My Mother is bitter and has never moved on!!)
Furthermore, my younger sister had told my Dad earlier this year that she would not be attending my wedding either! She and her husband wanted to go to on an exotic holiday, to Thailand! Now baring in mind though that my wedding was also an opportunity for her to see my Dad and my older sister, her husband and kids, and her niece that she has never seen!!! She told him that they might go over next year to see him!! :wtf: I made a massive effort for her wedding, I am now regretting everything I did!

My Dad is stunned at all this, he cannot believe my mothers reaction. In her text message she asked me if I trying to kill her by sending an invitation!! :mdramatic He is also not impressed at all by how my sister contacted me and what she said!! He is really saddened that my Mother won't go as he feels that it is "my" day. Its my wedding and its not about her! He was lost for words when I told him and saddened for me.


Now just so as you are clear... my parents got divorced nearly 20yrs ago!! My Mother divorced my Father, and as we were growing up she spent all her time telling us that we should not have a relationship with him, and having a relationship with him would (sorry can't think of the right word) offend her and we would be being disrespectful to her if we did. That is how we spent our teenage years and on into adulthood... It is really only in the last 5 years or so that I realised that she should never have taken out her anger or bitterness about my Dad on us!!
She seems to forget that her daughters weddings are not about her!!

She has spent a year trying to talk me out of getting married in the States, that by getting married there, no one would be able to afford to go, that because of my back it would be better getting married here and emphasising that she would not be there.
Don't get me wrong, I know on my wedding day I will be really sad that my Mother won't be there to see me get married, as throughout my life I always assumed she would be!! But it has been her choice.



Once again I am so sorry for coming on here and pouring my heart out!! I have no idea how to control this pain at the minute, especially with my GP wanting to reduce all my meds!! I was going to see him this evening to find out why he is doing this and why I am not getting any support, but I am in too much pain to even go so I have left a message for him to call me!!


I guess I have so much to deal with right now I am really not coping!! I really am sorry for pouring all this out, I am just so confused about everything!! :help::help::help::help: