SCS & Pain Pumps For spinal cord stimulator (SCS) and pain pump discussions.


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Old 08-22-2010, 05:17 PM #1
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Confused SCS... scared!

On Wednesday, I went to see a new doctor--a pain management doctor. He said that he prefers to start off his patients (with severe pain) with more aggressive forms of treatment, rather than trying something like physical therapy that would probably make matters worse.

The first step is that as soon as my insurance pre-approves it, I am having a bone scan done to rule out/check for RSD/CRPS. I do have peripheral neuropathy, but have pooling of blood in my legs and feet that turn my skin dark purple (nearly black) when I sit or stand. Therefore, I am bedridden and have been for almost 5 months. I have to keep my legs and feet elevated at all times.

After the bone scan, there are three options. The third was shots in my back, which I simply cannot handle. It's a combination of my back being so sensitive (I have 5 things wrong with my lower back) that I don't even want anyone to touch it, let alone stick a large needle in it. Also, I am fine with shots and having blood drawn--but I have to watch or I freak out and get scared. To have a shot in my back would not sit well with me. You could tell me that I was having a major surgery tomorrow, and I'd sleep fine tonight. If you told me that I was having a shot in my back in a month, I'd be up every night for the next month worrying about it. That's just the way I am.

The second option is a pain pump, which isn't a good option for me. First of all, he said it only had a 30% relief rate for most people... which isn't much. Granted, my body doesn't tolerate pills, so I don't get ANY relief right now... even 30% would be nice.... but it's not as good as the other option. Also, I only have one functioning kidney, and medicines (especially these narcotics) can be hard on kidneys. The last thing I need is to damage my kidney and have to get dialysis or a transplant.

The first option he gave me is the SCS. While I've done some research and found out that this option would include a shot in my back (which terrifies me.. I mentally just cannot get over that!), I do think it would provide the most relief if it works for me. He said people generally see 50-70% relief with this. I've read quite a few posts on this forum and personal stories. What I haven't been able to find out, though, is exactly what is done the day of the trial or the surgery. I'd like to know, step by step, how it is done. Is it just one shot? I know there is at least one incision--how many are there? I am a person who won't do anything unless I feel 100% prepared, which includes knowing exactly what will happen to me. I'm wondering if someone can walk me through their experiences--what they remember anyway.

I've been trying to find a few people who have been through this that I could connect with while I go on this journey. I am only 24 and the majority of my friends stopped talking to me when I became bedridden. Everyone makes excuses and says that they don't know how to handle this much pain--they just don't know what to say. I personally think that's stupid. I have a friend who lost her dad last year to cancer and just lost her mom last week to cancer. Have I ever lost a parent? No... Have I ever been through anything similar? No... Do I know what to say? No... No words will make her feel any better... but I sure as heck am not going to walk away and leave her in the dust just because I don't understand and haven't been there... and I am quite disappointed that my friends have done that to me. Granted, I still have quite a few close friends that would never walk away--and for that I am extremely grateful. Even so, they haven't gone through this. The most pain they've had is a broken bone or strep throat. They haven't experienced 16 years of chronic pain and being bedridden for almost 5 months. So while they are wonderful friends--they can't relate to these decisions I am having to make. I'm hoping to connect with a person or two on here that would be willing to walk along this journey with me.

Thanks for reading... I appreciate your time!
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My name is Sarah and I am 25 years old. I have a lot of chronic health problems. Peripheral neuropathy and POTS (postural orthostatic tachycardia syndrome) keep me bedridden the majority of the time. I also struggle with degenerative disc disease, disc desiccation, spondylolisthesis, arthritis, polycystic ovarian syndrome (PCOS) with insulin resistance, allergies, sound sensitivities, and other health problems.
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Old 08-22-2010, 06:21 PM #2
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Heart Hi Sarah Mae :)

Count me in!
I'll be your friend and do my best to help! Plus, there are quite a few others here who will no doubt jump on this thread of yours!

First, I'm wondering how you feel about your new pain doc?
Do you feel your first visit went well, and do you feel as tho this Dr is someone you feel comfortable with in being a part of your pain management?
This, IMO is the most important first step.
If you've established a good/trusting relationship with him/her, that's what really counts.

I should go back and read your older posts to get a 'feel' for your condition and how long you've battled it. I see you have a chronicled website.....I'll check that out k.

It's very good that you are of the mind of wanting to feel 100% about something before you 'jump' into it, and you've read several of the testimonies here at the SCS forum......so you're doin good.

I'm sure your new pain doc must have had your medical profile well in advance of your initial appt this past week, right?
It is a bit out of the norm for a Dr to want to jump right into this procedure, but I'm sure he knows your history enough to know that you've probably already been through alot of the other first-line of pain management options.
This is why I'm interested in knowing how YOU feel about your new Dr.

We'll go from there k?
You'll find many caring folks here

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Old 08-22-2010, 06:34 PM #3
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I have read a lot of posts here, and have read a lot of interesting stories. I've kind of got some people in mind that I'd like to talk to, but am open to talking to anyone and everyone! Secretly, though, I was hoping you'd respond. You not only seem very well informed, but your posts just crack me up! It's good to have friends that know when to be serious, but also when to make jokes and laugh. Laughing is what gets me through these bad days! So I'm thankful that you replied!

I am absolutely in awe of this doctor, actually. He came in and sat down and knew so much of my history--he said he had gone over my history already. That surprised me, as most doctors I go to have not taken the time to do that. He knew that I was interested in ruling out/testing for RSD. He also knew that I had peripheral neuropathy and was diagnosed at Mayo. He knew that I had tried pain pills, but my body won't absorb them so I recently was put on the fentanyl patch. He knew most of my symptoms, and asked questions to fill in the gaps. I was AMAZED. Beyond my family doctor (who is also amazing and has been my doctor for 13 years), no other doctor has invested that much time in me. He had wonderful eye contact (and while I hate eye contact-truly I do), it was good to know he was focused on me and the conversation and not his next patient or what was for lunch! He was incredibly smart/informative. While he talks fast and spews out a TON of information, he didn't mind my questions at all and made sure he answered them in a way that satisfied me. I am thrilled to have such a wonderful doctor on my 'team', and couldn't have asked for more! So yes, to answer your question, I am VERY satisfied with my doctor and am so looking forward to working with him. My family doctor is truly amazing as well--he's worked after hours and done research just for me... but of course, he is not a specialist and is limited in what he can diagnose/do. My neurologist gave up on me after only a few months, and told me he can no longer help me since I don't respond to the medicine. But I am confident that between my family doctor and my new pain management doctor, that I can get the best care possible and hopefully get rid of some of this pain!
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My name is Sarah and I am 25 years old. I have a lot of chronic health problems. Peripheral neuropathy and POTS (postural orthostatic tachycardia syndrome) keep me bedridden the majority of the time. I also struggle with degenerative disc disease, disc desiccation, spondylolisthesis, arthritis, polycystic ovarian syndrome (PCOS) with insulin resistance, allergies, sound sensitivities, and other health problems.
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Old 08-22-2010, 07:41 PM #4
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Thumbs up Eye Contact!

You said the Magic Words! EYE contact!
Ok! This says alot! I'm so happy to hear your first visit with this specialist went this well and that he has won your utmost respect!
That's the other most important part - if he's well-credentialed and confident in what he does. And you have a very good relationship with your family Dr for all these years. This is all good.
It's always good to have someone with you at these appointments.....a second set of ears during an important appointment such as this can be crucial!

I see you post at the PN forum........wonderful folks there. Just the right amount of mix of very informed people, with a twist of humor just for good measure Humor is such a good thing and you've got it too! But yes, there are those days when it's simply not possible to even smile. Pain can crumble a person from the inside out.

Are you doing ok on the Fentanyl patches so far? They were a LIFEsaver for me when my PN battle was at it's peak. They truly do serve their purpose, so I sure hope they are giving you relief, so you can at least have some semblance of a quality of life. I'm sorry to hear that you've been bedridden for several months tho
The process of getting a SCS or Pain Pump can drag out for months and months, which I'm sure you've surmised by what you've read here.

The first part of the process is getting insurance approval. Since these procedures are so very (VERY!) expensive, there are several steps in getting approval, one of which is the 'Psyche Eval'. If your Dr hasn't brought that up yet, he will, so don't feel intimidated by that. And don't think that HE thinks you are 'crazy'. It's standard protocol and we've all had to do one.
There are detailed posts on this if you go thru the older threads you'll see alot of discussion on this. The psychological evaluation will help everyone to be on the 'same page'. (Everyone, meaning you, your primary care Dr, your Pain Dr, Surgeon, your family support system, your insurance, the manufacturer of the implant and their representative(s))..... There's quite a team effort involved.
So, I'm very happy for you that you've connected with a specialist who looks you in the eye and will listen to YOU. If he's looking out for your best interest, then so far so good

I'm going to log out so I can go take a gander at your website ok!
It's good getting to know you, Sarah Mae, and you'll enjoy the others here at the SCS/Pain Pump forum. Everyone here is so caring and we all look out for each other like one big family. And yeah, we kid around some....just to keep things a wee bit on the light side ......but you know as well as any of us how not-fun chronic pain is.

TTYS
Rae
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Old 08-22-2010, 08:47 PM #5
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Quote:
Originally Posted by Rrae View Post
You said the Magic Words! EYE contact!
Ok! This says alot! I'm so happy to hear your first visit with this specialist went this well and that he has won your utmost respect!
That's the other most important part - if he's well-credentialed and confident in what he does. And you have a very good relationship with your family Dr for all these years. This is all good.
It's always good to have someone with you at these appointments.....a second set of ears during an important appointment such as this can be crucial!

I see you post at the PN forum........wonderful folks there. Just the right amount of mix of very informed people, with a twist of humor just for good measure Humor is such a good thing and you've got it too! But yes, there are those days when it's simply not possible to even smile. Pain can crumble a person from the inside out.

Are you doing ok on the Fentanyl patches so far? They were a LIFEsaver for me when my PN battle was at it's peak. They truly do serve their purpose, so I sure hope they are giving you relief, so you can at least have some semblance of a quality of life. I'm sorry to hear that you've been bedridden for several months tho
The process of getting a SCS or Pain Pump can drag out for months and months, which I'm sure you've surmised by what you've read here.

The first part of the process is getting insurance approval. Since these procedures are so very (VERY!) expensive, there are several steps in getting approval, one of which is the 'Psyche Eval'. If your Dr hasn't brought that up yet, he will, so don't feel intimidated by that. And don't think that HE thinks you are 'crazy'. It's standard protocol and we've all had to do one.
There are detailed posts on this if you go thru the older threads you'll see alot of discussion on this. The psychological evaluation will help everyone to be on the 'same page'. (Everyone, meaning you, your primary care Dr, your Pain Dr, Surgeon, your family support system, your insurance, the manufacturer of the implant and their representative(s))..... There's quite a team effort involved.
So, I'm very happy for you that you've connected with a specialist who looks you in the eye and will listen to YOU. If he's looking out for your best interest, then so far so good

I'm going to log out so I can go take a gander at your website ok!
It's good getting to know you, Sarah Mae, and you'll enjoy the others here at the SCS/Pain Pump forum. Everyone here is so caring and we all look out for each other like one big family. And yeah, we kid around some....just to keep things a wee bit on the light side ......but you know as well as any of us how not-fun chronic pain is.

TTYS
Rae
Yes! Eye contact and he knows his stuff! His last name is Ripperda which makes me giggle a bit--I don't know why... it is just a fun last name. I was blessed with the boring last name of "Nelson" and then the name Sarah to boot--so I love unique names.

I do enjoy the PN forum, but I was happy to find out about this one as well. I also read a lot on the RSD/CPRS forum (at least for now--if it turns out that I don't have it, I will stop frequenting there), the spinal and back forum, and the chronic pain forum. I read, anyway--I don't always respond much because I don't usually know how to answer the questions that other people have. I do like reading, though--and I am finding a lot of people I think I could relate to.

I do like to laugh, and while the last few days have been major struggles, I still try to smile and laugh as much as I can. If I didn't, I would hit rock bottom on a daily basis. Between my back and my neuropathy, I've been told for years that it's a hopeless case and that I will live my life like this. Wonderful! If I couldn't laugh or smile, I would have no reason to live.

Unfortunately, the fentanyl patches haven't done a thing, really. The first one convinced me that it was giving me some relief. My main source of pain is constant lightning shocks every 15 or so seconds through my toes and feet. I went FOUR DAYS without shocks--3 of those days being when I had the first patch on. I was SO excited. Well, I think it was just a fluke, because the second, third, fourth, and fifth (that I just put on about 40 minutes ago) haven't done a thing for me. I am, however, at the lowest dose--25 mcg/hr. When I talk to my doctor on Monday about my vitamin levels (which I talked about in my CaringBridge and a post on the PN forum), I plan to ask how soon I can go up to a higher dose. I've been on this for 12 days or so (I think--3 days times 4 badges) and it just hasn't given me relief. He told me from the start, though, that since I have so much pain, I may not even respond to this dose and he would work me up slowly. So we'll see--I'm holding out hope that a higher dose will work... because without hope, I have nothing.

I am a bit worried about the psych eval. I had to have one before my gastric bypass surgery. I'm just worried that some of my discouragement with lack of pain relief will come off as depression. I've been very lucky and have not struggled with depression (not with this pain, anyway--I did back in high school). My pain management doctor said that studies show that someone with depression will not find much relief with the SCS--but people without depression have a high success rate. I don't understand why that is, but he said it's been proven, so I believe him. I know in my mind and heart that I am not depressed.. but that doesn't stop me from having bad days or weeks--and I don't want that to show through and look like depression. Other than that, I'm not worried... since I've already been through the process before.

My mom does come to all my appointments with me (I'm living with her now) since I am in a wheelchair and can't drive or wheel myself around (it kills my back!). However, she doesn't remember anything really that was said--haha. As time goes on, I will maybe have her take notes or something for me. I came home and wrote in my caringbridge about the SCS several hours after my doctor appointment Wednesday, and remembered almost every detail. Thankfully, I have a pretty decent memory, and am now off of all the medicines that really affected that.

That's nice that you are going to take a look at my website.. I try to update it often because a lot of family and friends read that to keep updated--that saves me from having to repeat myself a million times.

Thanks for your replies--it is so nice to meet people who understand a bit of what I am going through. Everyone here does seem very nice, so I look forward to meeting more people and getting to know you (and them) even more! Take care--hope you have a great week!
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♥ "Hope is more than a word; it's a state of being. It's a firm belief God will come through. Life brings rain... hope turns every drop into the power to bloom like never before." -Holley Gerth ♥

My name is Sarah and I am 25 years old. I have a lot of chronic health problems. Peripheral neuropathy and POTS (postural orthostatic tachycardia syndrome) keep me bedridden the majority of the time. I also struggle with degenerative disc disease, disc desiccation, spondylolisthesis, arthritis, polycystic ovarian syndrome (PCOS) with insulin resistance, allergies, sound sensitivities, and other health problems.
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Old 08-22-2010, 08:58 PM #6
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Smile Heart Aches for YOU

Oh, Sarah Mae-

My heart aches for anyone who is SO youthful to be beset with such maladies and then to have fear of what comes next on top, followed by a generous helping of concern about credibility.

You sound as though one who, as Rae [she is a gem] has put it, has won your trust and respect, a most IMPORTANT credential for any physician. Fear you can overcome. We will help. Shots are painful at first, but the pain is not abiding, but usually shortlived. SCS evaluation, credentialling, determination will generally take a good many steps and time. Insurance and physicians alike want to feel assured the extremely expensive procedure will be likely to produce at least even handed results in the patient. As for me, now 54 days out from implant, I feel as though touched by the hand of God, much as the Sistine Chapel painting depicts.

I have written of my travails, pitfalls, victories, challenges, fears, and on and on at the following: http://neurotalk.psychcentral.com/thread117854.html

Through this I have hoped to bring to one such as you a sense of hope, promise, possibility of life anew if both you and your medical team believe this is right for you. I will GLADLY answer any questions of yours anything at all.

May all eventually be well with you,
Mark56
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Old 08-22-2010, 09:32 PM #7
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Help Oh allow me..Can I join in??

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Originally Posted by Mark56 View Post
Oh, Sarah Mae-

My heart aches for anyone who is SO youthful to be beset with such maladies and then to have fear of what comes next on top, followed by a generous helping of concern about credibility.

You sound as though one who, as Rae [she is a gem] has put it, has won your trust and respect, a most IMPORTANT credential for any physician. Fear you can overcome. We will help. Shots are painful at first, but the pain is not abiding, but usually shortlived. SCS evaluation, credentialling, determination will generally take a good many steps and time. Insurance and physicians alike want to feel assured the extremely expensive procedure will be likely to produce at least even handed results in the patient. As for me, now 54 days out from implant, I feel as though touched by the hand of God, much as the Sistine Chapel painting depicts.

I have written of my travails, pitfalls, victories, challenges, fears, and on and on at the following: http://neurotalk.psychcentral.com/thread117854.html

Through this I have hoped to bring to one such as you a sense of hope, promise, possibility of life anew if both you and your medical team believe this is right for you. I will GLADLY answer any questions of yours anything at all.

May all eventually be well with you,
Mark56
Sarah mae...

My utmost pleasure to visit with you...Funny thing happen on the way to my first post to you tonight..Mid paragragh. Boy, it was a goodie too....we lost power here at my home..so all was lost.. I don't want to keep you up all night trying disfer my chicken scratch..but I want to say first how sorry I am that you are having to suffer along with myself and fellow RSD, pain sufferers... OMG... we are made of steele... genuine..!!

My RSD began with a knee surgery, we think..possibly previously..anyway..I had a SCS implant done in 9/08... Now I want to keep you thinking positive thoughts although..my experience is not a positive one...as we all respond differently..I can't use mine as it really bothers my RSD.. it makes my pain worse.. I had further spread afterwards also..from my rt. leg over to my left leg, left pelvis, left arm and now my rt. lower jaw..I have been dx with a very aggressive form of RSD, whole body..and no pain meds for this old chick as they make me toss my cookies in a bad way...

I just want to ask you to stay well informed thru your Dr. and read as much as you can prior to making choices..I hope and pray this may be the intervention you need to help control your pain....

I will pray for you in following your best informed feeling on this issue..You ahve our support and it is really nice to chat with you..Let me know if there is more I can do for you...

Hugz and have a peaceful rest tonight...

Kathy
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Old 08-23-2010, 01:31 AM #8
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Heart Your website is precious!

Wow Sarah! You know what I was thinking as I was reading your testimony on your site......(I'm sure you've already been told this!) You've got a wonderful writing skill - you ought to consider writing a book! Just a thought

Well NOW I feel as tho I really 'know' you!
Your story is very touching and heartbreaking, but you've got such a beautiful sense of 'Hope' about you.....very inspiring!

Gosh, I've got so much i want to say! But I got so tied up with family stuff and I doubt I'll be on here much tomorrow because I've got a crazy day scheduled.
Family is SO important! I was SO happy to see that you have such a wonderful close relationship with your mom and that she's there for you and you watch movies together and everything!
I've been spending alot of precious time with my daughter - she's about your age, she's 23. She's pregnant! It's so exciting!
The baby you are holding on your Home page is wayyyy too cute!

Anyway, as you can see, there are VERY caring folks here!
Mark's thread is a fantastic inside view of his unfolding story. The day he came aboard he's brought nothing but shear joy to us all! There are quite a few people who've commented on how much his thread is helping them!

And I am SO glad to see "Keep Smilin" posted! Thank you Kathy!
I still tell people how much you and the others on the RSD forum embraced me when I came aboard. You are spot on about the 'made of steel' ! Without a doubt!

So, as you can see, Sarah, there's certainly no lack of support here!
We'll all pitch in and do our best to coach you along from what we've experienced. Just take one step at a time with this and you won't get overwhelmed. It'll all unfold in God's good Grace, and you're a woman of Faith, so we'll feed into that as well!
What matters most right now is trying to get you to some level of comfort!
I sure wish the Fentanyl patches will work for you...if your Dr is willing to prescribe them, then I'd say, give it a real good thorough try! Don't give up on them just yet! They are a whole different breed of pain med and they take getting used to.
One important thing to note is WHERE you place them on your body to get the best absorption. It differs with each person, so if they don't seem to be working, let your Dr work with you as he titrates your dose. Try them in different locations, it really does make a huge difference.
I'm so sorry about these 'lightning bolt' pains you get. That sounds much different to what I've been dealing with, which is constant BURNING pain. Just goes to show how many different types of pain people have to contend with! It just plain sux!
I just hope and pray that they figure out why you aren't getting circulation in your legs/feet causing the blood to pool like that!! And the fact that you've battled your issues from such a young age with NO explanation of what the cause is!
It would be one thing if you have had an accident or something to pin this on, but you've been a mystery case........

Well, it's very late and my eyeballs are going crossed.

I'm so happy to see you've found this neck of the woods. We will no doubt learn from YOU as well!
You are a Blessing from God, my friend.

Talk again soon,
Rae
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Old 08-23-2010, 04:47 AM #9
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On Wednesday, I went to see a new doctor--a pain management doctor. He said that he prefers to start off his patients (with severe pain) with more aggressive forms of treatment, rather than trying something like physical therapy that would probably make matters worse.

The first step is that as soon as my insurance pre-approves it, I am having a bone scan done to rule out/check for RSD/CRPS. I do have peripheral neuropathy, but have pooling of blood in my legs and feet that turn my skin dark purple (nearly black) when I sit or stand. Therefore, I am bedridden and have been for almost 5 months. I have to keep my legs and feet elevated at all times.

After the bone scan, there are three options. The third was shots in my back, which I simply cannot handle. It's a combination of my back being so sensitive (I have 5 things wrong with my lower back) that I don't even want anyone to touch it, let alone stick a large needle in it. Also, I am fine with shots and having blood drawn--but I have to watch or I freak out and get scared. To have a shot in my back would not sit well with me. You could tell me that I was having a major surgery tomorrow, and I'd sleep fine tonight. If you told me that I was having a shot in my back in a month, I'd be up every night for the next month worrying about it. That's just the way I am.

The second option is a pain pump, which isn't a good option for me. First of all, he said it only had a 30% relief rate for most people... which isn't much. Granted, my body doesn't tolerate pills, so I don't get ANY relief right now... even 30% would be nice.... but it's not as good as the other option. Also, I only have one functioning kidney, and medicines (especially these narcotics) can be hard on kidneys. The last thing I need is to damage my kidney and have to get dialysis or a transplant.

The first option he gave me is the SCS. While I've done some research and found out that this option would include a shot in my back (which terrifies me.. I mentally just cannot get over that!), I do think it would provide the most relief if it works for me. He said people generally see 50-70% relief with this. I've read quite a few posts on this forum and personal stories. What I haven't been able to find out, though, is exactly what is done the day of the trial or the surgery. I'd like to know, step by step, how it is done. Is it just one shot? I know there is at least one incision--how many are there? I am a person who won't do anything unless I feel 100% prepared, which includes knowing exactly what will happen to me. I'm wondering if someone can walk me through their experiences--what they remember anyway.

I've been trying to find a few people who have been through this that I could connect with while I go on this journey. I am only 24 and the majority of my friends stopped talking to me when I became bedridden. Everyone makes excuses and says that they don't know how to handle this much pain--they just don't know what to say. I personally think that's stupid. I have a friend who lost her dad last year to cancer and just lost her mom last week to cancer. Have I ever lost a parent? No... Have I ever been through anything similar? No... Do I know what to say? No... No words will make her feel any better... but I sure as heck am not going to walk away and leave her in the dust just because I don't understand and haven't been there... and I am quite disappointed that my friends have done that to me. Granted, I still have quite a few close friends that would never walk away--and for that I am extremely grateful. Even so, they haven't gone through this. The most pain they've had is a broken bone or strep throat. They haven't experienced 16 years of chronic pain and being bedridden for almost 5 months. So while they are wonderful friends--they can't relate to these decisions I am having to make. I'm hoping to connect with a person or two on here that would be willing to walk along this journey with me.

Thanks for reading... I appreciate your time!
Hi Sarah Mae,

Its so good to read your posts and welcome!

I have just recently joined this forum and I cannot tell you how wonderful and welcoming all the posters are on here.

I have recently had an SCS implanted (17 days ago)...which Im still getting used to. I cant believe how young you are and suffering so much in your short life. I pray that you will get the relief that you deserve.

I will say that when I first went to see my Dr in the Pain Management Clinic which is now over 2 years ago, he mentioned the SCS to me on the first day, but only to tell me that it was something that we would look at a long way down the road that there were plenty of other options too.
I too went down the road of various meds which were prescribed by my Consultant each time I had surgery all of which my Pain Management Dr thought were driving me insane. Granted they werent helping me too much. I was taking Lyrica and Neurontin and I was totally confused, down, loss of memory feeling worse than what my pain was making me feel.

After numerous meetings with my Dr and trying out different options, (Rhizotomies, Lidocaine and Ketamine infusions, Spinal block injections, nerve block injections, Lidoderm patches(which I never thought were doing me any good, felt it was all in my head) but I kept using them , just in case they did click in one day. Finally in April this year I went for a trial for the SCS.......but you have to have a psychological test done, which I had in Novemeber 2009. This is basically a meeting to see how your feeling about yourself, life, your pain, your goals, your ambitions......not intimidating whatsover. This is a must and its your insurance company which will require this in making a decision.

I didnt find the trial too bad at all. Yes there are some needles involved, these are for 'local' My procedure took about 30 minutes. I had a wire sticking out my spine which was attached to my programmer. Sarah Mae let me say that this is the procedure that I had in Dublin Ireland, Im not so sure if its exactly the same procedure for you in America.

However, you sound like a person who is so well informed that you will thoroughly research all the procedures and wont be 'talked' into something you wont want to do.

I have to go for now but will be back later on and hopefully my little bit might have helped you somewhat.

Going to the hospital this morning to have my wounds reviewed and HOPEFULLY i will be able to have a shower from now on!!

Take care and talk later

Jackie
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Old 08-23-2010, 05:35 AM #10
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Smile I Read your Story Sarah

Your story is so touching and long standing, I do understand and relate to your pain. My back used to be strong until the trauma of a wreck; yours by way of disease borne illness, nevertheless, the pain is there, the pain is real, the pain robs of life in a way that seems to exclude, as was the case with my family. We felt cocooned in this "don't touch them, they might break" standoffishness as my pain profile descended through Dante's Inferno.

Friends would comment they had no idea how I would/could survive the burning, the spasms, the jerks, the tears, and yet my question persisted, "but didn't you say you pray for us, for me?"

My faith in Christ kept one foot in front of the other even when I didn't believe I wanted to go on. Times when I would thrash on the floor growling or screaming because pain so robbed me of dignity let alone control over my own body. That was when I took to screaming into a pillow to muffle my cries. I had no idea how my pain psychologically affected my family. Depression was served with large spoons to all of them.

SCS finally brought me physically through the torment of the pain I had endured. Sure, I feared shots. I feared being cut on. I feared possibly being rendered paraplegic as was my Uncle Calvin by a gunshot wound, but I prayed, and prayed, and prayed, and so did others. At last, I knew, I KNEW the path of SCS was a means to hope for me and my family.

We took the path, steps halting, but true and God held us every step of the way. Now I am seven weeks post op, and in two days will discontinue all use of pain management meds due to the use of my Boston Sci stim. I tell others of the miracle I was granted in the implant. My docs probably think I am over the top, but I am so GRATEFUL.

I pray for you that you may find peace in whatever decision you reach for yourself, and for your family. Mine now feels hope abundantly, and my little girl [now 17] is off of anti-depressants because she sees and feels the hope that radiates from my being courtesy of God.

Blessings on you,
Mark56 PJ
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