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Free SCS Medtronic Trial - Couldn't say no
I have severe small fiber neuropathy. Feet, legs, hands and arms. (possibly mouth) From my first visit to my pain dr a little over a year ago, he advised me that an SCS will probably be my best bet for pain relief. I have no A or C fibers left in my feet per skin biopsy done in Sept 2013.
I have been on the BuTrans pain patch (20 mcg/hr) and 3 oxycondone a day (10-325). I am now at the max for this combination of pain medicines that my dr's office will allow. I am also on 1800 mgs a day of gabapentin. I still have not been able to reach my 3 original goals: cooking, cleaning my house and grocery shopping due to the unrelenting pain. A local charity has offered to completely pay for an SCS trial and asked them if they had anyone that would benefit from this trial. It's not based on income so I was very surprised when they offered it to me. One of the ladies in this office that I work closely with said she thought of me immediately because of everything I've been through this past year. And my dr agreed with her. So......I'm having the trial done this Friday morning at 8 am. It will be Medtronic and I was assured that the reps are there every step of the way. This dr's office likes these 2 reps so much they invite them to their Christmas party every year. She said they are wonderful to the patients and always ready to help at a moment's notice. As I've read on the SCS forum I know the reps are a very important part of this process. Even though I've always said I didn't think I could do the SCS and pretty much still feel that way I am going to give the trial a go. My NT family...I ask that you say a little prayer for me on Friday morning that all goes well. I'll post when I can to let you know how it's going. Love and hugs to my friends :hug: :hug: :hug: Debi from Georgia |
Definitely
I will be sure to offer up a prayer for you, tonight and tomorrow. It is so nice to hear a charity and people around you have you in their thoughts xxx:hug:
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Prayers
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Holding your hand Log everything as you now start this process My prayers are working on you It is the after care of the reps that are about to Hook you up Find out what happens if you decide to have the perment Unit You want to be assured the same attentive manner be there when you need them after selling you the product WHEN YOU NEED THEM AT YOUR WORSE TO HELP TWEEK OR FIND OUT WHAT IS HAPPENING Did much of my own homework But the most valuable is the one here As they are personal experiences I understand from my children texting in capital letters means I am yelling This is not the case here Or ever when I capitalize I pray nothing but absolute success And kind treatment From beginning to end Keep that log of everything that is happening Love Me |
Dear Debi,
My goodness....what a year you have endured. Many prayers and blessings coming your way. I am certain your SCS trial will go smoothly Friday and it will help you reach those 3 goals. What time are you going in and who is going to be with you? Love and hugs, D. |
Dear Diandra
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My son, Luke, will be taking me as my daughter has used up all her time for the year at work due to everything we've been through this year. Christina didn't leave me and her dad the whole time we were going through all of this. Then when Bubba passed Luke took 2 weeks off and didn't leave me at all for those 2 weeks....lol....blessed to have these 2 kids. I have to be there at 7:45 so we'll leave home at 7 am due to all the people going to work. I have complete confidence in my dr and his staff so I'm going with that thought. Dr said he would leave it in for a week and I'll have to go back every few days to have the site checked and for them to tweek the unit if needed. Debi |
Thank you Pam :)
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I was very blessed to have them think of me when this charity came in and talked to them. I have grown very close to one of the ladies at this pain clinic and the dr is amazing. He's had people that had so much success with these units that they no longer have to go to him. So I feel like he's not in this for the money from the SCS. He only does the trial and another surgeon that is not connected to his practice does the permanent one. I can honestly say that unless this works for me 110% I won't be getting a permanent one. To have something 'implanted' in me just freaks me out. Of course I could change my mind. I'm trying to go into this open minded. Thanks again for thoughts and prayers as I go through this. Debi |
Our sweet Eva :)
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I already have the log to keep as I'm going through this to document how I'm feeling and so on. It's so hard to explain my pain to the doctor. I have so many different kinds of pain that hit me I have a problem putting it into words. Do others have this problem ? Take care of yourself Eva and thank you for prayers coming my way. Debi |
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hope all is well and yes some like us who have soooo many different kinds of pains all independent from one another a new problem has arisen and it was very difficult to explain and two of my doctors are scratching their heads pictures are on a different forum "focus on blessings" sub: SCS the pictures of left hand and right toe blood and vein will swell prior would be piercing pain then a pop and then a bruise if it weren't for the pictures i don't think i would be taken seriously in addition extreme cramping in hands and feet so you take real good care and your grown babies are there for you amends were made with my eldest love me |
Positive energy coming your way
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I'd be scared too. Yet how wonderful to have Such great confidence and trust in your doctor. Do you have an anti anxiety med you could take tonight to help you sleep? Tonight when you go to bed, hold the image in your head of your doctor telling you the surgery is over and all went smoothly. I find planting positive imagery works wonders for nerves. Your children are lovely. I am so happy Luke will be there for you. Thanks for the details and please know from 7:45am on, prayers will be said for you. I think the good Karma of a sponsored surgery will spill over into the entire experience. It is so obvious that so many people love you and are cheering for you. All your NT buddies are here for you as well.:grouphug: Much love, D. |
Hi Debi,
Thoughts and prayers will be winging their way to you from this side of the Pond. At least thinking about you will take my mind off the fact that I have a stranger driving me to and from my Infusion tomorrow. Interacting with others brings Anxiety to a head and add travel to the mix and I am on the verge of a Panic Attack already. So, as my travel co-incides with yours, I will spend the time sending you warm thoughts. Then the start of our procedures mesh, so I can worry about you and pray for your Dr to be competent and efficient, rather than end up turning into a trembling wreck. This Trial truly is a blessing for you after all you have been through and with all the pain you suffer. It is a happy co-incidence that you take my mind off a stressful day. I look forward to hearing of positive Log entries and the possibility of long-term pain reduction. Dave. |
That is good news Eva !
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I've had 'spells' with Luke over the years when at times we didn't talk or if we did it was just to argue with one another. We've been through so much this year as a family that I don't think we will have that problem again. Not only did Luke lose his dad but his wife filed for divorce at the same time. She actually called him the day of his dad's funeral to tell him to go sign the divorce papers ! Yep...she was one of those. Bless him he's been through so much lately and has so many regrets where his dad is concerned. I saw the pic of your hand and wow......that is some scary stuff. Thanks so much for sharing and caring dear friend. Debi |
Diandra :)
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I slept for and hour and a half and I'm back up. I don't usually sleep well the night before a procedure and this is turning out to be no different. I am so blessed to have you all in my life. You folks 'get me' like no one else can. Like others have said before, people look at you and think you are ok but we're not ok at all. I will be thinking of all my friend here as I head in for surgery. Thanks for all the prayers and well wishes. With y'all I will get through this :) Debi |
Sweet Dave :)
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I'm so glad I can help you in the morning as you help me with your positive thoughts across the pond. I wish I could give you some of my wide openness. I never meet a stranger. I would love for this to work. To be able to drive anywhere I wanted to again would be such a joy for me. I've had a hard time today and am missing my Bubba so much. He was always here with me through anything like this and would wake up with me in the middle of the nights when I could not sleep before a procedure. I especially remember how sweet he was on the nights before a chemo treatment. I know he's with me in my heart and soul. Good luck to you too dearest Dave and I hope the ride and treatment go well for you. I'll probably be home before you are :) Please come back here and let me know how it went. I'll be looking for your update :D I just love you all so much....I hope you all know that. Debi |
My thoughts are with you, Debi, too. :hug:
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Debi,
My prayers are with you. You are surrounded by love from so many it will surely help with the healing! You deserve relief and comfort. I hope this trial brings all that one could hope for and you recover quickly. I know Bubba is with you today and every day. And we, of course, carry you in our hearts with care and affection. Sending hugs and healing love, :hug: |
Dave, you are the bravest strongest man I know. Your wit, your humour and the down to earth way in which you approach everything leaves me in awe. You to are in my thoughts and prayers :hug:
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Still in my thoughts
Debi, well you should be home with your trial SCS. It is so important, I can't emphasis how important, you follow the instructions of your PMS and the Medtronic reps. You have leads hanging out of you and an outside unit attached to those leads which of course are sitting in your spine right now. Be careful of doorknobs and such, I got mine caught on the door handle... Don't stretch, twist and turn or reach or bend, but when I say that, I mean don't do it beyond your limits, in order to get the most out of the unit you still need to do things to see if it will work. Also two types of stretch absolutely DO NOT DO the "morning just woken up stretch".
Have a read of Mark 56 BLaST. I add to his BLaST a capital A -= Ask for help, don't be a martyr and go it alone. You so need this to work hon, give it your best shot and believe, really believe with all the power of your mind it will work. My PMS said the power of positive thought has a huge impact on SCS success rates. I had the feeling / awareness of a strange thing in me about 6 months in, I was having difficulties with it and getting frustrated with charging etc and it was just like this overwhelming and irrational feeling of an alien thing inside me, so much so I was thinking of asking to take the damn thing out, then a new PMS threaded the 2nd lead and I havent looked back. I still get frustrated with charging from time to time, but I'm no longer physically aware of this thing and wanting it out. Anyhow those leads are in your spinal cavity and you want to be sure, extra sure you do not get any infection bacteria in there, so important you pay attention to caring for them. Forget washing your hair for a week as well, or get someone else to do it if you really need to. I can't remember if Medtronic are paddle leads or percutaneous, mine are percutaneous, Mark56 has got paddle leads and his is a Boston. Good luck xxx |
Great advice PamelaJune. Debi… Do as you are told:D
Thought about you all through a terrible day, made it easier to handle. Waiting for updates with bated breath. Dave. |
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I am not a recipient however because I am no longer In ever having surgery again I followed every step persons took I remember reading way back when of a fellow SCS recipient One of the leads had moved I believe the other fused to the selected area And have come to learn it being able to be permanently attached to the proper site as opposed to a different way and I don't remember yet what stuck out was the way the leads are secured so no shifting happens Marks personal experience strength and recovery is one of best personal tricks he found that worked and passed it on Thank you Mark Love Me |
Good morning everyone :)
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I'm going to use Dave's post to tell y'all how it went. Because we all love Dave and because I'm already on here ! :D I have to say it do go well....other than the lady that put me to sleep wanting a 2nd IV put in in the OR and she blew the first one out in my hand. OUCH ! And I have GREAT veins. She was in a hurry even though they told her they were not rushing her so I FINALLY said something to the effect that she NEEDED to slow down for the 2nd stick and she got that one. Thank goodness. I know they woke me up during the procedure to ask questions but that's very foggy and I don't remember feeling any pain at all which was nice. I have never had any issues before with the meds they put me to sleep with but whatever she used yesterday was pretty bad. I felt like I was going to throw up all the way home. The motion of the car was not good. All day yesterday I could only get up for about 15 minutes at a time and then that terrible feeling would hit me again and I would have to go back to bed. As far as the SCS.......she gave me 3 programs to try but also stated it is very hard to get the whole feet in the coverage. And that is my worst pain. From the middle of each foot to the toes. I'm stll having the foot pain but I have not worked with the programs yet. I couldn't yesterday but hoping I can work with them today. The sensation is not bothering me at all. It is WEIRD to move a certain way and it UP itself. Makes you stop and take notice but not hurtful in any way. My back is extremely sore. Extremely SORE but nothing like the SFN is. Here is a funny from yesterday: Since my son took me I didn't want to wear my bra because I didn't think he would be too thrilled in 'undoing' it for me when we got home ! When I told the nurses they just howled in laughter ! I read somewhere the night before that I needed to wear a button up shirt. Well my friends, because I have 3 issues going on with my hands I don't HAVE any button up shirts. Only over the head ones without collars. So I wracked what brain I have left and got out 2 of Bubba's PJ tops. Perfect and felt so much closer to him when I had it one. Which I still have on :D The SCS rep, who was very nice and gave me her cell #, wanted to know my top problem with SFN. As most of you know I can't stand on my feet very long so grocery shopping is out. I might make it through the store but would be in bed for days after that in severe pain. She doesn't want me to totally overdo but suggested that I go grocery shopping so I can report back on that experience. Our Ingles store is not huge like others but too big for me to walk through. And using the electric carts just seems to set my feet and hands off due to the vibration. So my plan is to take it easy today and play with the programs. Tomorrow me and Christina will venture out to Ingles and see how it goes. I have to go back to see the Dr and rep on Monday at 1:00 and my SIL will be able to take me since he doesn't work on Mondays. So my friends....I DID IT ! I'm pretty proud of my whimpy self :p Thank you all so much for the support and prayers. They WORKED ! :grouphug: Debi |
Qustions
Hello everyone. Had to lay down for an hour but back up and changed my program.
This is a tapping sensation. Am I suppose to leave it as low as I can ? I've got it tapping at a pretty good pace right now. Any movement I make causes the sensation to move and the tapping to get harder and then softer ? So far not reaching my mid foot or toes. I am going to walk around the yard later as it is so very pretty here today and see how that works. Thanks everyone. Debi |
Hi Debi,
So sorry you had nausea problems with the anaesthetic - it was probably being carried over in my vibes:D Great thought on wearing Bubba's pj top, on all counts, common sense, comfort and comforting. I am not personally experienced with the use of an SCS, but I have read the Threads. I believe you are doing right by trying a different programme and starting it low, increase the settings as necessary but do remember to Log everything. It sounds like a good idea to exert yourself - with support - by going shopping on Monday. Just make sure you stop with enough energy and reserves to get back to the car should you start flagging. Until this outing, experiment as much as you can, find that perfect setting. Just remember to follow all the rules for looking after yourself and your surgery sites. No stretching or exertions, no lifting… Heal quickly, benefit greatly. Dave. |
Dear Debi,
You made me cry when you said you wore Bubba's pjs. I can imagine it was wonderfully comforting. Glad things are going well but sorry you endured Nurse Ratchet and nausea. I don't know about SCS but maybe private message PamelaJune as she has one and is always kind about sharing info. She is away this weekend at a place that helps folks deal with chronic pain but she is logging onto the the forum although she probably doesn't have much time. Or log onto the SCS forum and ask there. Can you lie down comfortably? I am very unclear as to where and how this device enters your body and where the controls are so you can change programs. Looking forward to hearing how your outings to the supermarket go. Thanks for the update. I hope everything continues to go well. D. |
Bubba
My dear friend
The tears of sadness and comfort as you describe it all I believe it was meant for you to wear Bubba's shirt Oh dear sweet friend I so pray all that can be done To be another successful story Few to be found You are a very strong woman Loving wife And blessed to have two healthy great kids You deserve life without pain We do not ask for our pain To eliminate any pain our body inflicts on us You sure take the cake You are brave Strong Please please please Blast blast BLAST Listen to the warnings I am cheering you on Move on in life with relief of anymore physical pain Or any for that matter I am sending angels God is good Amen |
One flew over the coukoos nest
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Ooooh I remember her She was awesome As all the cast for that movie Glad you are with us You too are a absolute Gem You are a positive individual Very much needed aNd us here in return Love Me |
Good morning :) Monday, Dec 14th
Saturday night I read more of Pam and Mark's posts on their SCS's. Mine is going pretty much along the same path as far as having to rest the first 2 days. The rep called me Saturday around noon and I asked her about the stuff they used to put me to sleep.
She said they have to use more during the SCS trial than I would have had for the back injections. So there is my answer but I do want to know what it was because I don't want that stuff anymore ! I'm sure they have other options. The rep told me to keep the unit as high as I could but I could not walk with it on a high level.....I looked like a Claymation character walking around and very unsteady on me feet :eek: Of course the kids loved it and laughed at me when I would holler out because a movement 'hit' me good :D So I turned it down and it's been working better for me. I'm still on my regular pain meds. I have not had a problem laying down with this trial unit which is good. I also have no problem sitting. I did not feel like going to the grocery store yesterday so instead I picked up around this very, very messy house and put things away. I went outside numerous times and walked around the driveway. Because of all my activity yesterday I woke up in the middle of the night in horrible pain as expected. (still not the same as walking around that grocery store floor but close) I laid back down on my back, which actually felt good, and turned this sucker up to a good humming. I could still feel the pain but it was not as 'sharp' and I was able to fall back to sleep and so far this morning I have not turned the unit back down. I guess your body gets used to the vibrations. Some of you know that I'm not very keen on having a permanent one implanted BUT I'm going to have to give it some real thought. I would love to be able to get off the BuTrans patch completely and possibly some of the gabapentin but even if I'm unable to do so I guess having this as another 'tool in the toolbox' would be a plus right ? I really, really wanted to start looking for and getting an above ground pool with a nice deck around it. Thought if I started in January we might have it up and running by May ? If I get a permanent in January would I even feel up to overseeing this project ? Thanks to all for reading this. D......I've had one of Bubba's PJ tops on since I had the trial on Friday. It has been so comforting for me ! Not sure why I didn't think of wearing them to bed before this. I'm sure he's laughing at me from above for the way I 'look' in them :eek: I have to add that I've had to block out that horrible week in August in order to get some peace of mind. When I remember those feelings from that week I just can't move or think straight it was so very raw and I keep seeing his face. I love that manly man so much and even though Christmas was not something he loved I will miss him so badly on Christmas morning. Christina and Jonathan have offered to come and stay the night on Christmas Eve if I want them to. I'll just have to wait and see how I do. Our kids had been long gone from mine and Bubba's Christmas mornings and we could get up when we wanted and have coffee at the dining room table before getting ready to go and see what all the kids got for Christmas :) Love y'all :grouphug: Debi |
Hi Debi,
Thanks for the update. I'm glad you've been able to get around some. It's sweet that you wear Bubba's pjs. I am sure you look adorable. I hope this trial brings you clarity. Of course it may be having it out that gives you clarity. Sometimes we don't realize how much relief we are getting from something until we don't have it. Be well my friend, :hug: |
Just seeing how you are
Hi Debi, just a quick hello to see how you are doing with the unit. It is also such a difficult time for you right now, your first festive season without Bubba. I can't imagine how you feel, but Im sure he is with you in your heart and wrapping his arms around you. :hug:
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Hey Debi,
PamelaJune beat me to it! I was just coming here to ask the same question. Be as Bubba would wish you to be this Christmastime. Dave. |
PamelaJune and Dave
So sorry I just saw your posts to me from Dec 24th :eek:
I've really tried to 'talk' myself into 'liking' the SCS during the trial but I just don't think it helped much. If I can't sit and have my hair done, go home and rest for a few hours and then go out to dinner (parked right in front of the restaurant) without limping out of the place in horrible pain then I don't think it was a success. I've heard others say they were upset when the trial was removed because it helped them so much.....it was just a huge relief to me when they took it out. My daughter said she didn't see a different in my pain with the trial.....my son says he doesn't think the trial lasts long enough to get a good indication whether it will work or not. My next pain appointment is tomorrow afternoon. Since I'm not going to go with the permanent SCS I'm going to talk with him about titrating down off the BuTrans patch and try another long acting medication. I'm scared to titrate off of the BuTrans but I've only tried 3 pain medications and I'm on 2 of them now so I haven't explored other medications. Oh I don't know......I'm in pain from cooking on Sunday (stupid idea) and I'm tired of hurting and not being able to do Anything at all. Forget making any plans other than going to see the dr......I have absolutely NO idea how I'm going to feel from one day to the next. I just want to scream my head off it's so frustrating ! And my Bubba isn't here to say "are you ok ? Can I get you something?".......alone and in pain is so much worse than being in pain with someone by your side. Hug your families and friends tight and let them know how much they mean to you. It really will make a difference :hug: I know I'm preaching to the choir but thanks for listening. I sincerely appreciate it my friends. Debi |
Dear Debi
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Are you okay? Can I get you something? Do I feel you loss Absolutely And you will not go through this by yourself You have a group of people But most of all Bubba's love lives in you Only you know what he gave you in your life with him The very first time you met him That very first time Remember and enjoy it You love each other even more As each are in a different world You still in human form Children, grandchildren a new beginning The cycle of life You will meet and be connected as one again Until then Pay attention to his presence when you call upon him I have no more words to express God is good In Jesus I trust Mother Mary I respect What she had to go through as a mother Be well I pray Dear Lord Hear it prayers Amen Love Me |
Oh sweet Eva !
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All you say is correct.....he lives on in my heart and soul.....in my children and grandchildren, in every life he touched. I push all the bad memories away and treasure the good memories and hold them tight to my heart. Thank you dear friend for your caring, loving heart. :hug: Debi |
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