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!

Hi Sarah Mae :)
 

:hug: Count me in! :hug:
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
:grouphug::grouphug:
Rae

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! :)

Eye Contact!
 

You said the Magic Words! :rolleyes: 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 :p......but you know as well as any of us how not-fun chronic pain is.

TTYS
Rae
:grouphug:

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! :hug:

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 :)

Oh allow me..Can I join in??
 

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:grouphug:

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 :hug:

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! :p

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! :hug:
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:eek:. 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. :o

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
:grouphug:

hello Sarah Mae
 

Hi Sarah Mae,

Its so good to read your posts and welcome!:hug:

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:grouphug:

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:)

Mark,

As you know, I eventually did get through your whole post. Your story is encouraging, and your unwavering faith is so inspiring. Thank you for your willingness to talk with me and answer questions. That means a lot to me!

I realize that the shot is just a short term thing--I just mentally can't get past being absolutely freaked out about it. I know that as the day draws near when I do the trial for the SCS, I will have to get over my fear at least some so that I can pursue this trial. I absolutely refuse to try epidural blocks or cortisone shots--but I suppose that two shots (one for the trial and one for the actual surgery) will be okay. At least you're partially 'out' and numbed. I realize I won't be fully asleep... but having some medicine in me and being numb is more than I'd get if I had to get the shots on a monthly basis. That, to me, is comforting.

It's still scary, but I have learned and incredible amount of things from your journey. I will, no doubt, forget things like restrictions and such by the time all this happens. I have to have a bone scan first and then go back to my doctor before we even set the trial up--so I hope that in the future, that you guys can all remind me of the things I will forget between now and then.

I want to apologize again for my response to your post--I truly hope you know that I was not trying to make light of your situation. It sounds like you have been through an awful lot, and I am thankful that I have not had to go through as many surgeries as you have. I am in awe of your faith and positive attitude. Please know that.

Thanks again for your openness and willingness to talk about this with me. You guys have all been absolutely wonderful to me so far!

Sarah :hug:

Kathy,

First of all, can I just say that I LOVE your username? What a good reminder--and one that I so much needed today. I need to push through these hard times and keep smiling. What a blessing you have been already in this one little message--even down to your username! :)

What an interesting thing to happen in the middle of a post! I write in my CaringBridge website almost daily--and I have started writing in a word processing program. Too many times I have accidentally closed the internet browser or gone idle for 2 hours (which is the limit for the site--then your entry goes poof unless you copy and paste it). Thank you for taking the time to come back and respond--that means a lot.

I'm sorry that the SCS has not been a good experience for you. Have you tried anything else, such as a pain pump? Are you getting any sort of relief? That would be tough to go through all of that only to find out that it does more harm than good. I don't respond to pills because of my gastric bypass surgery, so I am praying like crazy that the SCS is the answer for me. I can't get relief any other way. We'll see, I guess. Only time will tell. I definitely know that there is a possibility that it will not work for me, and though I don't like the idea of going through it all, I'm glad they do the trial first.

I hope that it works for me--but your story is a good reminder that it may not. If it doesn't work, I will have to seek out other options, though at this point, it doesn't sound like I have many. I'm curious to find out what you have tried and if anything is working for you.

Is it okay if I pray for you? You seem like such a sweet woman, and I am so thankful already for you! I look forward to getting to know you more! :hug:

Sarah Mae

Well Sarah-

Forgiveness was shown us so long ago on a hill far from here that we can scarcely do any thing close but try to live in a forgiving spirit. My writing back to you was meant as a means to open eyes and show my care, for I do honestly care. Please remain among us, as we do strive to help one another.

The shots which presage either the Trial or the Perm Implant are not even that, they are IV insertions, probably into your hand or farther up the arm as the ultimate means to safely and less painfully inject saline, antibiotics, and sedation. Ahhhhh....... that blessed sedation.

For the Trial, since wakefulness was necessary, sedation was slight, and the local anesthetic was applied on my back to aid insertion of the two large gauge needles for insertion of the leads for the Trial. If you ever had an epiduragram, this is NOTHING as bad as that, NOTHING.

For the permanent implant, in my spine, I was OUT, that is O-U-T, asleep, gone, in a dream state. Everything else, the music, the jokes, the banter that a surgical team has was dead to my sleeping ears. You would awaken later hurting quite a bit from the major surgery, but, this too passes.

YOU CAN DO IT. After all, you have had gastric bypass. That was in involved abdominal surgery, and I bet you were asleep for that one, too!:)

I am here for you whenever, wherever. Ask away!

Faith in you,
Blessings and prayers,
Mark56 PJ [means Praise Jesus]:)

Rae,

I really appreciate the fact that you took the time, initiative, and energy to read some of my website. That truly says a lot about you as a person and how much you really do care about people! Thank you.

I have been told many many times that I am a good writer, and one of my dreams has been to write childrens books. I have started to write a couple, and hope to someday have them published. They are just general books--but I would love to someday write specifically for children with disabilities (or without!) about acceptance and God's love for them. I took German classes for 5 1/2 years and am currently brushing up on my German as well as learning Spanish through a free online program through my local library called Mango. I hope to someday write and publish books that can be translated into German and Spanish. I'd also love to write a book for young adults/adults about pain, but I am not totally confident in my ability to do that yet. We'll see--maybe someday.

For now, though, I love writing in my CaringBridge. It not only keeps everyone that cares about me informed, but is a form of therapy for me. :)

The baby is my friend Katie's third daughter, Audri. Her kids are 3, 2, and 4 months. I can't imagine! She's a cutie--I got to meet her last Tuesday. I love babies, and always wanted to have 6 or more. Too bad that I am bedridden now, and the doctors say it will be that way for life. I'm not willing to accept that "death sentence", though, and we'll see what God says about all of that! :) I wouldn't be alive today if it weren't for my faith.

Last night (around 5:15 pm) my doctor called to talk about my vitamin level results as well as the fentanyl patch. He told me to put two on at once, and try that. He will be out all next week (visiting family), so I am supposed to call on Friday and tell him if they are working--either way, he will need to give me a new prescription, because I won't have enough to get through the next two weeks. I'm glad we called when we did, or I would have called on Monday looking for more, and would have had to wait a whole week! Unless, maybe, another doctor could prescribe them for me--but that doesn't always go so well. I haven't noticed any relief yet from 2 patches, but I'm hopeful. I have tried them in several spots, but there are only 5 or so places the information says you are allowed to place them. They are pretty limited in terms of placement as opposed to other patches, such as a hormone patch (I have never had those, but a dear friend of mine that is 64 and used to be a nurse said that she could place those almost anywhere. The fentanyl patch only lists 5 or 6 spots--and half of them I can't use due to extreme irritation).

The lightning shocks are the worst kind of pain (for me), and the most extreme pain. But I do have all sorts of pain. I have numbness, shooting pain, stabbing pain, intense burning pain, aching pain, spasms, shocking pain... it's not just one type of pain. But even the most intense burning pain is not as bad as these shocks. So that's what I talk about the most--the shocks. That and the spasms. The spasms are okay when I'm in bed, but if I have to get up to go to the bathroom, the spasms make it so painful to walk.

The pooling, of course, is what is keeping me bedridden. The neuropathy pain wouldn't be any worse if I sat up in a chair as opposed to laying down. The pain does get worse when I walk--but there's no reason it would keep me confined to a bed. (It truly does feel like a prison sentence). However, the pooling does keep my in bed because the only way to stop the pooling is to elevate my legs and feet. That is what discourages me the most. I haven't left the house since graduation (and I BARELY made it there and barely was able to walk across the stage--if it would have been a few days later than it was, I would not have been able to go. Thankfully, God worked it all out and I was able to walk across the stage, and two days later the major pain set in), except to go to the doctor. Even those trips are so very hard on me... but I would give almost anything to go out to eat or go to Walmart to just walk around--or not even walk, but be pushed in a wheelchair! I so desperately want just a little bit of freedom to get out and be myself again. Being bedridden is what discourages me the most. The pain--I can live with. Yeah it stinks--but I've dealt with pain (as you know) since I was a young child. I don't remember life without pain. I do, however, remember life without being bedridden, and this is very hard to be so confined.

I am thankful for all the encouragement I've found--and all the new friends I have made here. As wonderful as my close friends are--they just don't understand any of this. It's hard to relate to them when their biggest problems are not earning enough money to go out and shop... whoopee! I can't work (obviously) and don't have enough money to pay my bills, and most of my medical bills have been sent to collection agencies, which is affecting my credit. To me, they have it SO easy and they fail to see that. It's frustrating...

Anyway... thank you again for all your help and caring! You truly are a blessing from God--I'm so thankful for you!

Sarah :hug:

Jackie,

Wow. I hadn't realized how many people had commented on this post until I sat down and tried to respond to each of them! :) Nevertheless, I am grateful.

I'm glad you finally got your SCS. My doctor stated that he preferred to try the more aggressive forms of treatment first instead of trying countless things that won't work--like medicine has proven to not work for me. I know it will still take a while--there's hoops to jump through. Insurance, trials, scheduling, etc--plus I can't even start that process until this bone scan is underway--and that hasn't been pre-approved yet.

However, I have read so many wonderful stories of how many people have been helped through SCS, so I am getting more and more excited about this. I really hope the trial goes well and that it gives me some relief, because this could be the answer I've searched for... for what seems like forever!

I've read a few times that people had a long period of time after the surgery that they couldn't shower. That worries me a bit, because I feel so gross if I don't shower at least every other day. I used to shower every single day--but now it is much harder, so I shower almost always every other day, but sometimes if the pain is bad, it is every 3 days. How long did each of you (whoever is reading this) have to wait to shower after having your SCS implanted? I will request no visitors until I can get up and shower! haha.. gross! I had to wait 3-4 days to shower after my gastric bypass surgery, and even that was torture for me.

I look forward to getting to know you more as I walk along this journey! :hug:

Sarah

Mark,

I had wondered what PJ stood for! I must have missed that in your post--I saw everyone talking about naming their SCS and then I saw you kept saying PJ--but couldn't figure out what it meant besides pajamas! haha :)

Indeed I survived GBS. And yes, was totally out for that. It's the trial and not being out that worries me the most--but I will try not to worry... and take it one day at a time.

The GBS was very painful (afterwards, of course..). I didn't quite realize that they would be cutting through a lot of muscle--and was so sore for a month or two afterwards. Then I put some cream on my 6 incisions to try to stop the itching (when it started to heal), and instead of relief, got an allergic reaction! It was NOT a fun experience! And of course, the GBS is what caused the neuropathy... I look back and say that if only I had known what kind of pain it was going to cause me, I definitely would not have had the surgery. However, I don't know if that's totally accurate. The neuropathy stinks and I would have liked to prevent it--but, I could easily have been dead otherwise from a heart attack or something else. The surgery probably ended up saving my life--but I did get the short end of the stick when I developed neuropathy. I know lots of people who have had the surgery and had no complications and no neuropathy--and I got everything! Oh well... I guess I have to keep reminding myself that if I am going through so much--Satan must really want to keep me down... which means that God must have something truly amazing planned for my life. Gotta keep thinking positive, though (as I'm sure everyone here knows) it is not always that easy.

Thanks again. :)

Sarah :hug:

the journey
 

I am on that journey too. I now await my NS to call and set up my second cervial fussion. This time C-3-7- enough said. I hate needles in the worst way. I was so anxious I threw up. For the whole week before I was hell to live with. I cried the whole time. I had my first spinal epidural. I submitted to this with fear, It was actually this same PS told me first about the CT. I had no bad effects from what was used on me Kanadol 80mgs. I had read all the horror stories about how bad theirs turned out. My two epidurals, did help. I was just as shakey the second time. I think my surgery will be before the next one is scheduled, so I will be hopefully not required to to it. My hope is of course my surgery will help. I did not experience very much pain at all. I can tell you the details, because he talked to me during the proceedure. He was calming to me, and understood me being nervous. I guess if I do indeed have to do it again, I will get through it better. I think so much of it is fear because we are in so much pain already. We do as humans not like pain so much. I would talk to you any time, I do wish you the best. I'm in for A

some help in the shower dept.
 

I found a great little product. They are adult pre-moistened wash cloths. They are expensive but boy are they worth it when you want to wash up and can't. You might like them. ginnie

Hi Sarah Mae!
 

Hi Sarah Mae! :welcome_sign: to the website and our little group :) This is a really great place for supportive and understanding people that can relate to the struggles you are going through! I would have been here sooner but I am having some problems but here I am now. I would like to be your friend to and I also read your website. I am so sorry for all your pain and medical problems and it is extremely hard going to college through all of that.
I started college in 05 to be an elem teacher but was in an accident in 08 that derailed school for awhile but now I am back on track and I think you are such a strong person and should really be commended for getting through school! I was also told by various teachers that I would have to change my major and never be able to be a teacher or work with kids! And I did kinda bounce around from major to major but then I realized all I want to do is work with kids and be a teacher so even with me being so sick and in pain I am working towards my teaching license again ;)
I also know what it is like to lose your friends because I have been sick with various things since my teen years and you really find out who your true friends are. I think alot of times we lose our friends because they cannot handle us being sick or in pain all of the time and it makes things awkward. I know most of my old friends just never have been through anything like that so they could not understand and just did not want to deal with it anymore. I am lucky though because I was able to lean on my family because my mom has pretty much the same illnesses that I do.
I know things are really rough for you right now and I can relate to some of those things that you have been through! I also have a lot of faith in God even though sometimes I think that he thinks there is way more for me to handle (then I can handle). I am glad that you have great doctors because that is really important! I have been through enough bad doctors so I know exactly what you are saying ;) I am also glad that your mom helps you out because my husband has to do a lot for me because I cannot drive and I have to use a walker or the wheelchair to get around in. I know you are having a very hard time and I wanted to know you are in my prayers and thoughts. I really like your website and I agree that you would be a great writer! I hope that you and your doctors can find you some lasting pain relief whether its the SCS or something else. Also, do not worry about the psych eval its just a bunch of questions and it does not diagnose you for anything. Besides I have depression and anxiety but with therapy and medication I was doing okay and I don't think that made my SCS no longer work and its okay for people to be depressed when they are dealing with chronic pain ;) My therapist told me that she would be more surprised if I was not depressed or on antidepressants because chronic pain and illness changes your life and you have to give up a lot of things you used to love doing and everything is more difficult and takes it toll on you. Take care and I am also happy to answer any questions you have about the SCS since I had my implant in 08. Even though I am having problems I still believe that the SCS is a godsend because when mine was working right I was able to walk all over campus, exercise, and drive! Let me know if there is anything I can do for you too, I am not posting much since I am dealing with alot but I still look at everyone's posts!:hug::hug::hug::hug:Tara

Hi again Sarah

Yes its true you cant shower for the first couple of weeks. Im now 19 days over my surgery and I have been back yesterday for a wound review and all is well. So Ive been told I can have a shower (well the elation was unbelieveable) I understand exactly how you feel as I shower everyday generally. But having my husband wash/blowdry my hair and help me wash was a sight for sore eyes!!!:winky:but hey we managed......

Dont feel 'gross' some soap and water whether its from a shower or just on a flannel will do the trick, or some wet wipes also..

You will be fine:hug:

Why sure....
 

[QUOTE=Sarah Mae;688168]Kathy,

First of all, can I just say that I LOVE your username? What a good reminder--and one that I so much needed today. I need to push through these hard times and keep smiling. What a blessing you have been already in this one little message--even down to your username! :)

What an interesting thing to happen in the middle of a post! I write in my CaringBridge website almost daily--and I have started writing in a word processing program. Too many times I have accidentally closed the internet browser or gone idle for 2 hours (which is the limit for the site--then your entry goes poof unless you copy and paste it). Thank you for taking the time to come back and respond--that means a lot.

I'm sorry that the SCS has not been a good experience for you. Have you tried anything else, such as a pain pump? Are you getting any sort of relief? That would be tough to go through all of that only to find out that it does more harm than good. I don't respond to pills because of my gastric bypass surgery, so I am praying like crazy that the SCS is the answer for me. I can't get relief any other way. We'll see, I guess. Only time will tell. I definitely know that there is a possibility that it will not work for me, and though I don't like the idea of going through it all, I'm glad they do the trial first.

I hope that it works for me--but your story is a good reminder that it may not. If it doesn't work, I will have to seek out other options, though at this point, it doesn't sound like I have many. I'm curious to find out what you have tried and if anything is working for you.

Is it okay if I pray for you? You seem like such a sweet woman, and I am so thankful already for you! I look forward to getting to know you more! :hug:

Sarah Mae..I would love for you to pray for me..OMG..that would be wonderful..AND you like my used name..?? Well, it comes from my heart in that I trully believe we must hold hope and love in our hearts and begin from there... My favorite to do is share a smile or do something nice, like unexpected when others could use a life..It warms my heart... Great medicine.. simple and free!

Continue to move forward with your trial SCS and stay positive.. things always workout for the best...have faith and keep looking forward..the rest will take care of it's self... As far as myself..no pain pump, still have my SCS implant in my left hip area... but I have had many blocks and pain meds up the wa-zoo (can I say that?)..accupuncture..patches.. on and on..And my PM Dr. has sent me to Dr. S in Philadelpgia..he asked me to have the 5 day 'sleep' for Ketamine but my ins. will not play along with me so I am not even entertaining that thought..so I take each day as it presents itself, medicine free and keep smilin..the best I know how!!

You sound darling..Allow me to help you and please..there are no crazy questions when it comes to RSD!!! Its an ugly animal!!

love, Kathy:hug:

NOW I learn
 

Actually, we used the baby ones for me. Cheaper, I think, but I smelled like....... you got it.:D

Mark56 PJ:)

Sarah Mae..


I would love for you to pray for me..OMG..that would be wonderful..AND you like my used name..?? Well, it comes from my heart in that I trully believe we must hold hope and love in our hearts and begin from there... My favorite to do is share a smile or do something nice, like unexpected when others could use a life..It warms my heart... Great medicine.. simple and free!

Continue to move forward with your trial SCS and stay positive.. things always workout for the best...have faith and keep looking forward..the rest will take care of it's self... As far as myself..no pain pump, still have my SCS implant in my left hip area... but I have had many blocks and pain meds up the wa-zoo (can I say that?)..accupuncture..patches.. on and on..And my PM Dr. has sent me to Dr. S in Philadelpgia..he asked me to have the 5 day 'sleep' for Ketamine but my ins. will not play along with me so I am not even entertaining that thought..so I take each day as it presents itself, medicine free and keep smilin..the best I know how!!

You sound darling..Allow me to help you and please..there are no crazy questions when it comes to RSD!!! Its an ugly animal!!

love, Kathy

You guys are all so wonderful. I have read all the replies that I haven't responded to (this last round), just haven't felt up to writing much. Currently working on an entry for my CaringBridge website that I started last night--but I got so incredibly sick that I had to cut it short and head to bed.

But know that I am thankful for each and every reply, every bit of advice, every prayer, every minute you spend replying and talking to me, all the support, etc! I'm grateful for this website and all the wonderful people here. And I am indeed praying for each of you (whether you like it or not! haha... no, really though, if you don't believe/like to have others pray for you, let me know and I won't... but those of you who do believe in the power of prayer--I have you covered!). Thanks for everything--you guys truly are a blessing from God! :grouphug:

I'll take em...
 

..your prayers... AND heres a hug for you in return.:hug:

Love Kathy

Oh how I missed it
 

Kathy- I missed the full import of your earlier post on this thread regarding full body RSD, and I, too, so like your handle- keep smilin! You see, my sis, Terri, is full body RSD, double amputee after a knee surgery, much like your situation. I posted in the RSD forum quite a while back on her behalf and for the proposition that NO MATTER WHAT SHE IS DETERMINED TO KEEP SMILIN. We hope to be able to go visit her and Mom, who live across the street from one another soon, as I get farther away from the post surgery thing myself. You would like Terri. She is cool, doing wheelies on her electric wheelchair [too much morphine I am sure], but the morphine just doesn't seem to help her anymore.

So, here is my thing...... prayer is my life connection with the Father and pray already for Sarah, I will add you in as well. You, Sarah, Terri, and a host of others come into my prayers as we each have that opportunity to lift one another up. Such a cool means of reaching out and it is so helpful!

You are super in your outreach to Sarah!

Sarah- Here is a Happy Monday greeting for you! I sure enjoyed our chat the other nite! We will do it again, right?

Prayin' [One of my favorite songs is Somebody's Prayin]
Mark56:)

Absolutely we will do it again!

I'm waiting for the results of my bone scan. We did it to find out if there was a possibility of RSD because of the pooling in my legs turning them dark purple... but now (as I said in my post on the PN forum), I think I figured out why I have the pooling.. but I didn't find that out until my bone scan was already done. I have no idea how long it takes to get those results... but when I get them, I can schedule another appointment with my pain management doctor and move forward.

Thank you..Mark and Sarah
 

I so appreciate you both thinking of me.... I am sorry Mark, for your dear sister, Terri to be battling our mysterious monster called RSD.. I know we need to keep it at bay..however possible..The simplest is be thoughtful and take care of eachother..The other is to pray for eachother in order to greet the next day..and Keep Smilin....its so important and it warms my heart!!!

Love, Kathy:grouphug: