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Can anyone advise me??
Hi, I am new to the forum and was wondering if there was anyone who could advise me? I am due to have a trial spinal cord stimulator this summer. I have had nerve damage and CRPS in my left foot for eighteen years now and have tried numerous treatments but to no avail. I'm currently on a mixture of morphine, ketamine and zopiclone to name a few!
I was just wondering if anyone has had the trial or even the full operation and could tell me how they found it, did it work? What does it feel like? I would be really grateful if anyone could help Thanks, Rachel |
Look under SCS & Pain Pumps on the far right side of the pages. In this area to the left you will fine questions people are asking. Just go at the top and hit todays Post then scroll down the right and you should fine what you are looking for. There are hundreds of post on what you are looking for.
Good Luck and Welcome. |
Hi Rachel
Welcome to our lovely little family and I am sure we will be able to answer any questions you may have. I have had RSD for 3 years but was only diagnosed last september. I had the scs installed in december but mine is a little different to the normal one so I will let the others talk about the standard scs trials and full operations. For me I suffered at the time from severe back pain and left leg pain my scs really controls my back pain but at the moment i am not doing great as the rsd has spread to my other leg and at the moment i am just waiting to see my doctor but we have discussed getting a second scs to help my legs. I am also on ketamine and i take tradol and a few others!! I know the rest of our scs gang will be on and they can help with any questions you may have. I am still glad despite the rsd spread that i have my scs and it does a great job. You could read Saffy's posts as she only had her scs done a few weeks ago and she even has pictures . Getting an SCS was a last resort for me and after 18 years of pain I can only imagine your very fed up. I think the trial is a great idea because you can see if it helps before you sign up for the full implant. Take care and i am sure we will chat soon. J:hug: |
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Thanks again and wish you all the best :) |
Hi Rachel, and Welcome!!
It is so good you have found our dynamic forum area. So many people do come in here and share much, learning more, venturing forth..... I hope that as you approach your trial you will find answers to your questions, and if more need be asked that you will get on that keyboard and let them fly. It is good that you and Jenna have hooked up as it appears you are both reacting to similar situations and may be of much help to one another! She is a very sweet and caring person who has shown GREAT strength as she has pressed on in every aspect of discovery, learning, treatment, more contemplation, thoughts of additional treatment, all the while raising beautiful little daughters, making a trip half way around the globe to visit her sister for a birthday AFTER surgery. Jenna is a WOW inspiration to all of us.
If there is anything I may do to be of help, you need only ask. I have written a good deal, and much of the process through which I have come is chronicled here http://neurotalk.psychcentral.com/thread117854.html although our paths may differ, I have found the SCS treatment to be a generally positive experience and I feel blessed to have it. Again, welcome, and ask away, Mark56:grouphug: |
Hi Rachel .. glad you've found us.
I had my stim fitted on the 20th (had the trial on the 18th) .. am finding it a bit hard at the moment but Lord knows why. I guess we're all individuals. Am glad I went ahead with it, whatever happens in the future, because if I hadn't I would always have been asking .. "what if?" xxx |
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Thanks so much for your reply, it's great to find people going through simular things (even though of course I wish none of us had these problems!) You have been through so much :hug: I really hope things improve for you every day. I have started to read through the thread you stated above, it's great - lots of information. I will continue to read through it. It's interesting you mentioned a Interferential stimulator, when I saw my surgeon 2 weeks ago he suggested that they may give me something that sounds very much like you described until I have the operation. I had a tens machine for a year or so when I was about 16, is it simular to a tens machine? Have you had to have your SCS replaced? How long do the batteries last in them (or is that the same as asking how long is a piece of string! :) ) I'm looking forward to the trial in many respects as I am so exhausted being in pain, as I know you all totally understand. I'm 33 this year and have been in constant pain for the past 18 years and even though I knew I had chronic pain for nerve damage, I only got diagnosed with CRPS 2 years ago. As I mentioned I will keep reading through your threads, thanks very much for your time, really appreciate it! Thanks Rachel :) |
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Thanks for the reply! What are you able to do or not do after the surgery, have they given you any idea on how long you will take to heal etc? Really hope it works out for you and I'm sorry you are finding it hard Thinking of you! :) |
More and More......
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Now, about the Interferential Stimulator... I was issued that creature as a stop gap, much as you probably have been... the notion was to see whether electrical stim was "apparently" helpful to me. The product came with mere basic programs and would only run for about 20 minutes at a time before needing to be restarted. The battery was only good for about four uses, so I would recharge it daily since I used it every day. The tech who issued it to me told me it was like having a TENS unit on steroids and wow was he right. It did help me..... but it was also annoying. The unit was, applied topically, of course similar to a TENS. The sloppy sticky electrode patches had to be applied to the skin. The electrodes were connected to the base unit via wires which ran out the waist of whatever I was wearing and I usually carried the base unit in my pants pocket, about the size of a large scientific calculator. One drawback was that the wires would catch on anything handy: drawer handles, hooky doos here and there, racks in stores, the seat belt buckle in the car, and every yank would kinda TURN me around. Yanking had its risk of pulling the wires loose from the electrode patches, and when a wire comes free from the patch you are in for a ZAP. Not fun. BUT, I used that gizmo until I was on my way to Trial for stim for sure, and then between the Trial and permanent stim implant surgery. It did help in addition to the meds. My stim is a Boston Scientific Precision Plus SCS package and was implanted June 30 last year. We are just approaching my first year anniversary with my product, and I have used it constantly 24/7 since first programmed two weeks after my stim implant. As a matter of fact we will probably have a virtual party on NT here on the 30th to celebrate the first birthday of my stim, affectionately named PJ by our cohorts on here, because I am a person with a LOT of faith, so folks thought Praise Jesus seemed to fit me. PJ for short. I did the programming of my unit myself under the direction of my company rep/tech who sat me in front of a computer two weeks after surgery [after the surgery pain had abated pretty much] and he had me "play" with a variety of settings since my experience with the stime is SO SUBJECTIVE. I knew what felt good and what felt awful. He and I worked together to set four programs in my unit which is accessed via wireless remote, AND here is the best part..... I attribute it to the fact that I set the programs up personally [no one else has written of this experience] - I have YET to require a tweak session with my stim rep. These programs I have are doing the trick for me, and I am well on my way via networking to rejoin my profession. I really want to get back into practice. All I use is my stim and my trusty cushion..... no breakthrough meds. There are times when I have pain spikes, but I turn up the signal on my device so as to overcome the pain completely and keep on keepin on. This is for me a miracle, a blessing, and a gift from God, talented product designers, and gifted physicians. My recharging of the battery is transdermal and my base computer implanted resides in my right hip area just below the waist. Once the surgical pain healed, I noticed irritation for several weeks thereafter at the implant site until I became accustomed to it, and wore sweats and loose fitting basketball type shorts to feel sorta comfortable until that irritability went away. Now I can touch it and feel no ill effect. I wear my normal wardrobe. Voila'! Oh, back to recharging. The recharger of this unit is probably the coolest I have seen on the market, as it is a capital D shaped device which sits in a charging base until needed. My remote alerts me to the remaining charge, and I have found that if I recharge when the base unit charge has depleted about 1/3 of the way down the indicator, then it is time to recharge. The recharger is activated by depressing a button on the device, whereupon it begins to emit a beep. The beep continues until syncronicity is established with my implanted unit, and I place it there directly against my skin while recharging occurs. If I practice recharging as I indicated above, the process takes approximately 45 minutes once per week, and I can easily do that late in the evening as I read prior to going to sleep. Once, I had forgotten to take my recharger out of town to visit our daughter on a trip to her university in a nearby city. When we left town, I had not noted the unit was already at 2/3 charge. We were absent from home several days, and the unit went down to 1/3 total charge, beginning to give me warning signals recharge was necessary. Panic!:eek: We finished our visit, threw our belongings in the car and barrelled for home, not taking a leisurely drive which would allow frequent stops to see a shop or take a meal as we normally might. We made it home and the first thing I did was head straight to bed, hit the charger button and started recharging. It took two hours to recharge that time. I have been more cautious about the charging state of my unit since then. So, to wrap this horribly long post, I feel blessed to have the unit. I feel freed to seek re-employment, one thing that was taken away from me by pain. There are some constraints, and I have committed them to thought as BLAST- do not bend, do not lift, do not stretch arms above the head, do not twist. To this day, I have been careful, because I want to get back into the swing of things, in a big way.... I want to be free to do many of the things I could no longer do with my family, friends, co-workers after that car wreck so changed my life. I wanna dance without a cane, I wanna hike, I already ride a bicycle, I already take in movies in theatres, I already take opportunity to go to restaurants and to visit friends, I already drive my own car again, I wanna earn funds via my skill sets so as to help support my family, a goal which I feel will soon be met. I have started a community group of the unemployed who seek work, facilitating the betterment of their presentation and search/networking skills so they might also find employment, and a real blessing has been seeing folks "graduate" from our group. This is cool, because it started just with our own church folks and spread to include all of the churches in our community. Kind of a pay-it-forward sort of a feel good thing. One last thing.... before going to any doctor appointment, prepare written questions you have so as to be prepared and not pull away from the parking lot going "darn, I forgot to ask THAT!" You will know from your Trial whether you will do well with the unit. I had mine for a week on Trial. The Trial insertion went smoothly although not without pain. The removal after a week was a snap..... however the BURNING pain was immediately back with a vengeance, so I had come along with meds and my Interferential Stim to get it going before I left the doc's office after removal of the Trial Leads. In my prayers you shall remain, Mark56:):hug:Z |
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Thanks very much for the reply, that's really useful. I have been away from my computer for a couple of days hence the late reply. I am going to continue reading through the post you directed me to, it is really useful and great to know how the whole process went. I keep checking the post every day hoping to get my appointment through for the trial operation but no news yet. I am having it done on the NHS so may take a bit longer. Will keep you posted. Thanks again and great to make contact with you Best wishes Rachel :hug: |
Hi Rachel,
Welcome to our friendly forum, were a good bunch and we like to offer support and a helping guiding hand when we can.
I got my SCS last December and the trial a few weeks before that, my trial didn't go as planned but my Dr decided to go ahead with the implant anyway and boy what a difference it made to my life, I was like a new person, gone was the pale face that was always in pain and in it's place was the old me. I had the implant for left back and leg pain. I have gotten alot more relief from my leg than my back. Within a few weeks I was back walking a fair bit and feeling more comfortable in myself. My Dr is considering adding another stim for my right side with greater emphasis on my back pain. At the moment my baca isnt good and im in alot of pain with it but ill get there, Best of luck with everything and take it easy after the surgeries, You know where we are if you've any other questions or queries Lots of hugs Sinead xxx |
Hi Mark,
Hope you are keeping well? How are you? I have got my date for my trial SCS operation. I'm having it done on the 16th Aug, bit nervous nut excited about the chance that it may work! Rachel x |
Excited you have a date!
Howdy Rachel! It is good to know you have a date on 16 August! I hope and pray you receive a full week of Trial use to determine the full effectiveness of the device. While I had it, I wandered through all four programs they placed in the unit, trying different intensities of signal strength, judging how it was helpful.... or not. A couple of the Trial programs were not the best, but they were outshone by tthe othere programs.
Since the Trial was performed with me awake to provide immediate feedback, it was a bit unnerving, AND VERY POSITIVE, as I knew from that moment THIS WAS GOING TO WORK. May you be so fortunate as to feel the blessed peace of that first buzz of the signal to know it interrupts the pain. Now, as to how I am doing over a year out from my permanent implant..... I drove our motorcoach from the Denver area over three mountain passes to reach the tiny community in which my mother-in-law lives and yesterday the whole of Mom's seven gathered children honored her in style unknown to this community with the "Birthday Party of the Century" the town now calls it. My little family and I provided music and Mom danced with her four sons as I sang Sixteen Candles. She was THRILLED beyond measure and the look on her face.... priceless. I sang O Sole Mio in the Italian, and our daughter Em played a Beethoven sonata all to moist eyes and rousing cheers and applause. This was ALL worth it! Every bit!! This whole birthday endeavor I could not have done before achieving the permanent implant. I feel blessed... indeed blessed and praise God for inspiring inventors to bring this technology to us so we might each have opportunity to live more fulll lives. I'll be praying for your Trial and your approach to it for peace, assurance, questions answered, AND that it works for you as it has me, Fondly, Mark56:grouphug::grouphug::grouphug::grouphug::gro uphug: |
Really pleased it is going well for you and it's great the birthday event went so well, sounded like great fun!
I am going in tomorrow so fingers crossed it will work, will let you know when I get home at the weekend. Thanks so much for your support! :grouphug: Rachel xx |
Good luck Rachel4444
Hi Rachel4444 :)
The very best of luck tomorrow with you SCD trial. I hope you get the relief you so need from it......we will all be thinking of you.. Take care Jackie :) Quote:
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SO happy you are keeping your thread alive, Rachel!
We're anxiously awaiting an update. Try not to become overwhelmed with everything. I recall getting very stressed, when it really wasn't necessary and I put myself thru alot of anxiety. One thing I wish the personnel would've done - it would have been wonderful if they would've given me the post OP instructions BEFORE the procedure! When you come out of the OR in your twilight daze, it's kinda hard to comprehend what they are saying. Relax into it and be sure to communicate clearly and precisely to the medical staff in the OR. This is the most important time to get the stimulation exactly where it needs to be. You will do fine - you are well-prepared for this! Rae :grouphug: |
The DAZE Post Op
Such is the reason why as Rae posts it is good to have your spouse, significant other, or a family member along who can remember all of the post op restrictions. I do remember being told I was SOLIDLY taped up and to leave it alone...... so we did, then infection developed at the surface of the lead entries to my spinal cord. Yuk. Pus, smell, the bleck which would make someone sick to see it, and it was our daughter who pointed out the fact that it appeared I was "bleeding" in the grocery store as my shirt was wet from an explosion of YUK.
So, take a listener along if you can so they hear the post op blah blah. Try to follow the instrucions. Watch out for infection. AND May your Trial be a blessing to you Rachel! Prayin, Mark56:grouphug: |
Trial done and a success!!
Thanks Rae, Mark and Jackiey for your kind posts!
I had the trial leads removed yesterday, it was nice to get them out of my back but I am missing the stimulator!! It took a while for them to be able to get the stimulation all the way down into my foot, and in the end I had stimulation down both legs and both feet - which isn't a problem :) It has definatly helped with the pain - by about 30% and maybe even 40% at its very best during the night. The swelling and colour and tempreture changes which happen numerous times a day on a 'normal' day almost stopped which was great! I had the trial for a week, and the last three nights with the stimulator were some of the best nights sleep I have had in 18 years!! I was lucky and didn't get an infection (well not in my back anyway - I got a tooth infection on Friday and right side of my face blew up to about three times its normal size - but hey hoo!!! :) ) I am now on the wiaitng list and they hope to operate end of November or the beginning of December - sooner the better although I am a bit nervous :confused: I'm going to write down a whole load of questions I have and go back and ask them before the surgery. I believe I may have to have the battery changed every 2 - 3 years which I guess could be a further 20 operations if I live another 40 years!! Just wanted to say thanks for all your support and any words of wisdom are greatfully received, I don't actually know anyone or have never met anyone with a spinal cord stimulator so I have really gained alot from reading all your stories. Thanks again, Rachel :grouphug: |
Rachel!!!!
You go girl! You go for the gold and sieze life as though you are fully in touch with the blessing each day the measured pain management through use of the stimulator can deliver you!!! I pray you reach your personal goal of achievement in pain management since you have elected to proceed, and that through it you become fully vested in the passing forward of your blessings to others who will follow you wondering what is this technology all about! You deserve the best!
My Seventeen Second Miracle today was being at the gas station as a young mother coasted her fuel-less Honda SUV to a stop alongside our Eagle Talon. She definitely needed help getting the next twenty feet to the pump and there I was with cane in hand........ Nope, she would not allow me to push, but she, my wife, Cleo, and a bruiser of another guy joined hands pushing the Honda as I "drove" the powerless vehicle safely to the pump for her fuel. So cool! We all were able to participate in the miracle of helping one another succeed. Then I let her know she had just received her Seventeed Second Miracle of the day and encouraged her to read the book by that title. She was so pumped, I believe she may in fact do so. Now it is to you Rachel. You are in line to be able to pass miracles of encouragement to others. I KNOW by GOD I would never have been at that fuel pump, able to organize help for her to get into position for fuel had I not received the MIRACLE of my Boston Scientific Precision Plus SCS. Opportunity for you to gain life anew is possible and I pray awaiting you. Remembering how hard it was for me to "give up" the test leads and return to the PAIN I understand how you will feel as you await your date in line. May you be able to manage and cope with your pain in the meantime. Prayin for YOU, Mark56:D:hug:z |
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Thanks very much Mark!! Glad you were able to help the lady today :) Will let you know when I get my date through. Hope things continue to be good for you xx :hug: |
Hi Mark and everyone,
How are you all. Sorry I have been missing for a while, I have been studying hard at Uni and struggling with my foot and the pain. I'm so tired, just want to sleep but not getting much of that! I finally have my operation date :) it's Saturday 4th February. I'm so glad it's finally come but also, getting a bit nervous now! How are you all? Rachel xx :hug: |
Oh YAYY! We missed you and this is great news Rachel!
I'm sorry, tho, that you've had to struggle with this pain while trying to study at the university. Hopefully you're going to see such a difference with your unit that you wouldn't have even believed it possible! Thanks for the update and please keep us posted! :hug: Rae :hug: |
Thanks Rae! How are you? Xx
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In a way, it's kinda creepy knowing that this pain is just right around the corner.....it's not gone. These tiny leads/electrodes are what seperate the pain and my sanity :rolleyes: |
I'm glad it has allowed you that separation and it's been so successful for you! I'm pretty sure I'm having the unit where you can't recharge it, it has to be replaced every few years. I'm getting a bit nervous about it but am really hoping that it will give me some relief and maybe I will be able to cut down on my medications a bit. Only another week to go...
Great to make contact with you again Rachel xx |
Even So
You will take that miracle and feel such a glow
with pain yielding even unto your control this God gift, a pleasure to share once again to reach out and feel whole every now and then No, I can't slalom down slopes fast as once did but blessed by this miracle I am working again and it feels to good to be plying my trade and helping my clients with problems of late just knowing you near this, it seems jubilee is just 'round the corner, my friend, may it be!! Lots of Hugs and Prayers for you dear friend, Mark56:hug: |
Thanks very much Mark, I will let you know how it goes! How are you? Are you well?
Rachel xx :hug: |
Me too!
Hi Rachael. I'm starting my trial just 5 days before you. I am nervous as well. My biggest fear is that it may not work.
I'm one of the lucky few that hasn't taken opiates for pain. We are trying the stem before it gets that far. I've had no accidents or anything like that but osteoarthritis got me. It has just been a gradual increase in pain and degeneration of my spine over the years. Yes, I am a degenerate. Good luck and God bless.:) |
OOOOooooo! We've got quite a countdown goin on!
I'll be sittin on the edge of my seat, Paul and Rachel! |
Hi Paul, nice to hear from you. I had my trial back in August, I was pretty nervous but it wasn't anywhere near as scary as I thought. The procedure wasn't painful and they play around with the placement of the leads until you tell them that it's hitting the right spot. For me my pain is confined to my left foot, but has been increasing for the past 20 years. When I had the trial we found that to get the stimulation down to my foot they had to position the leads so that I got stimulation down both legs, all the way down. However if I can get some relief from it I don't mind that at all!! :)
I'm not sure if Mark and Rae found the same thing but it was a bit weird moving from sitting to standing and again from walking and then stopping, I kept having to tweak the power of the stimulation - this may however not be applicable to you as I guess if you are getting the unit to treat back pain maybe the stimulation doesn't go down your legs? I'm not sure? Anyway as I said these things aren't a problem and are a small price to pay for pain relief!! I did find after about 5 days of having the trial leads in that I was getting better quality sleep. I was still waking up a lot but not to the extent that I am normally and I felt the sleep I did have was much better quality, which I think will make a real difference as well. Try not to worry about it, I know easier said than done, but it is well worth doing and if you could avoid the opiates that would be a REALLY good idea. I take morphine and ketamine every day and they just don't work as well as they used to so my dose goes up regularly but there are so many bad side effects and you feel spaced out a lot! Mark and Rae have been great support, I've asked many questions which I'm sure you can see further back in this thread. I'm sure they would gladly answer any questions you have. It's well worth doing and I will keep everything crossed that the trial goes well for you. Are you based in the US? I will let you know how the full operation goes and please update us on your trial xx All the best Rachel x :grouphug: |
Hi Rachel
My friend, your compliments Could cause one's head to swell making it hard to pass through doorways :D. NOT. They do feel like good gentle hugs, so thank you.
Regarding the stim effect altering as one changes position or turns head while walking [and maybe chewing gum as well] it does vary. For instance lying down in bed after having the stim ramped up for my daily work doesn't JOLT, but it does dramatically intensify the effect, thus, I tend to turn it down when lying in bed or reclining in a recliner. Now as to Paul [we are having a group of Paul people start up here n'est ce pas?] I am encouraged he has avoided opiates to far. This could bode well for the success of the Trial if not the ultimate implant due to avoidance of the withdrawal difficulties. So Rachel, thank you for your mission to help, and may you be well in all things, knowing now I am praying for you and new friend Paul, Mark56:grouphug: |
Currently sitting in a hospital bed waiting for my spinal cord stimulator operation. Think it will be in about 3 hours time. Got a little room to myself as I'm having an implant which is luxury!
Getting a bit nervous, just hope it all goes to plan and that it works. Just been down to have some dye injected into my back in the X-ray intervention room. Think the operation may still be a couple of hours off. Could do with some food as my drugs don't like being without food! However not long to go. Signing off for now. Hope you are all well See you on the other side! :) xx |
Dear Rachel
By now you ARE on the other side, probably out of recovery and back in your room. I would send flowers, but they do not fit thorugh the scanner so well. I don't know, maybe I can figure out a way.
May the Lord watch over you in all of this and may you experience peace. There will most assuredly be post surgical pain, and it will hurt, but know this passes and the stim becomes capable of addressing your needs. Now where are those flowers? Oh, the file size is too big to append.... so, instead, imagine a backyard brimming with flowers, the peonies, pink, red, and white in bloom, the roses of red there too, moss rose varietal in color, the royal hue of Russian Lily capping the burst of myriad colors. Ths is what I wanted to send but for the file size limit. Cleo, our floral green thumb made all of this happen in the backyard gardens we used to own. You get the picture, if, having read the words you close your eyes and come to our backyard. We will offer iced tea or lemonade according to your taste. Now, rest my friend, and I PRAY the best is yet to come. Mark56:hug::hug::circlelove::Heart: |
Hello Rachel
Glad to have you at Neuro Talk. I just wanted to say hello. You already found the forum that will help you with your questions. You will not only find answers, but some compassionate people as well. I am sorry you have to investigate the SCS pump, but it is so much better dealing with a problem when you know all the facts. I wish you all the best. Feel free to enter into dicussion with anyone on the forums. ginnie
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Hey Rachel!
OOOoooo I'm anxious to hear how you are doing. You'll be tender and sore no doubt, and they may or may not turn your unit on yet.
Be gentle on yourself and allow others to pamper you. The surgical pain will lessen soon. You've been in my prayers as well..... Oh, I wasn't able to find the beautiful arrangement Mark describes, but here's one that happens to be the state flower where i live. ................................http://dl5.glitter-graphics.net/pub/...sb9c6v8ztc.gif Caring Always, Rae :hug: |
Thank you Rae
I just KNEW YOU would come through with a foral bouquet!!
Still praying for you Rachel! Thrilled to know you are there always, Mark56:grouphug: |
How are you doing????
I'm sure you're still recovering from surgery but we're all anxious to hear how it went and how you're doing. Take care of yourself and update us when you're up to it!:hug::hug:
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Hi Rachael
Hope you're resting and getting a good nights sleep. Hoping all went well. Sending prayers and good wishes your way. Sandy |
Thanks very much everyone! Mark and Rae cheers very much for the flowers!! My back yard looks lovely!! :grouphug:
I'm back home now, which is really nice. The unit is now on although they explained that the stimulation may not be quite right yet until the swelling around the spine has settled down a bit. I am getting some relief in certain positions though which is great. You are right about the post operation pain, it's so difficult to get comfy! Still this will get better day by day and I'm already starting to notice a bit of improvement each day :) Thanks for all the messages of support, much appreciated, and hi to everyone else who has posted - again thanks! Keeping my fingers crossed big time that this is going to really help me, would just like to fast forward a couple of weeks now!! ;) How are you all? Xxx :) :grouphug: |
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