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Hope arrives in just 9 days...
So I feel like I just keep posting here what I write in my blog... but it is all I have the energy for these days. I promise that one day I will be up for more chatting and discussing instead of just copying what I've said elsewhere. But for now, here's what is going on:
So, it has been a while since my last update. I have really been struggling with pain since my trial SCS was taken out on Friday. I had such amazing (99-100% relief of my neuropathic pain) relief and when it was taken out, I not only felt all of the neuropathy pains again (zero to full force in 30 minutes which was TOUGH to handle), but also the surgery pain. The pain was truly awful, and I slept the majority of those three days (Fri, Sat, and Sun) away. Finally today my back is mostly better. It hurts a bit, but not nearly like it did. I am so ITCHY though and it is driving me crazy. I have heat rash. I took my fentanyl patch off on Friday so that I could put heat on my back since it was so sore… and I ended up getting heat rash from it--grr. It is nasty! I’ve never had this before and I used to use the heating pad on the highest setting every single day--and I only used it for two days on the lowest setting (and a tshirt and sweatshirt on). I have been putting lanacane on it, but it doesn’t help for long. I looked online and it said to not put creams on it because it could make it worse--so I don’t know what to do. I am probably going to try taking some benadryl. It is up where I can’t reach it (I think) so I have to wait for my mom to get home. I hate being itchy, especially around a sensitive area. I want to scratch it, but when I scratch the incisions, it hurts. So I am trying to not scratch at all. So, I don’t have a whole lot to talk about in regards to the last few days since I pretty much slept them away. Sleeping truly is the only time I don’t feel pain, so when I have horrible days, that is how I escape the pain when I can’t do anything to help it. So let me back up to last week. The last time I wrote was on Thursday. I went to have the SCS trial removed, and I was NOT looking forward to it. It wasn’t too painful to have it taken out, but I was bummed to have the pain come back so quickly after it was removed. As I said, I slept the majority of the weekend away. Yesterday was the worst day as far as the neuropathy goes. I seriously slept almost the whole day away. I basically was only awake from 7 pm until midnight or so. The rest of the day I was in and out of sleep pretty much the whole day. I didn’t sleep more than 2 hours at a time, though, and I was still exhausted. Even when I took my spasm medicine that knocks me out, I slept for such short time periods. It was NOT fun. I can’t remember if it was last night or the night before, but I had a really awful dream. All three nights I had crazy and scary dreams, but this one was particularly awful. It was about a killer who kept getting into my house and trying to kill me and my family… and somehow he had brainwashed my mom so she kept letting him back in the house and when I would tell her that we needed to call 911, she would brush it off and ignore me. I was so scared when I woke up that I called my mom when I woke up from the dream. I was so scared to close my eyes and go back to sleep. I have finally been totally approved for SSI and Medicaid--I knew I was approved back in September, but I had to wait for them to check my bank statements, etc. I figured the money would go into my bank account today but it hasn’t yet--I talked to my case worker and she said it may take a day or two extra, but hopefully I will be getting 3-4 months back pay soon--along with the Nov. money. I will be getting the low amount until December when I will get $674/mo. That is going to be so helpful because I have bills to pay and things I need for my health! =) I have a date for my SCS permanent surgery--at least if everything goes as planned and insurance issues don’t hold it up. It is set for November 10th at 7:30 am--registration at 6 (and that’s an hour drive away--so very early morning). It feels like -forever- because the pain is really horrendous… yet it is really soon at the same time. 9 days--yippee!!! There is a site that I go on a lot with several different forums. They are mostly based on neurological health problems, though there are forums for chatting and other things as well. A lot of my friends on the SCS forum have come up with names for their SCS implants. After all, it is something that is living inside of you that you were not born with. It is a chance for freedom and a better future. A best friend that takes the pain away (or at least eases it up). It is a miracle. I have thought about what I should name mine. I don’t usually name things. My friend Candice named my car Klondike, but that is really the only thing of mine that has been named beyond stuffed animals and my three cats (two of which I named). I thought of several--the close second place was going to be Ray, after my grandpa on my dad’s side of the family. He meant the world to me when I was little, and I thought maybe I’d choose “Ray of hope”, Ray for short. I changed my mind, though… and decided on HOPE! Because honestly, what better word could be used to describe something that has the potential to get me out of bed and allow me to live my life the way I want to? So my SCS implant will be referred to as Hope. I am going to try to explain this name every time I post something and talk about it, because otherwise it wouldn’t make much sense to a first-time reader. However, Hope is MUCH easier to type than spinal cord stimulator implant. So, Hope it is. My absolute favorite word and the one thing (besides God) that I cling to with all my strength. J Just 9 short days and Hope will be a part of my life. I cannot wait! I am not looking forward to the next few months, though. I can’t have people visiting the week or so before surgery because my immune system is weak from the steroids I am on and I need to stay healthy so it doesn’t have to be rescheduled. And then after surgery, it will probably be a few months (maybe more) before I am really up for having visitors or sitting online to chat. It took me until today to feel pretty good after the trial surgery--and that was so small compared to the next surgery. This surgery is a bit different from the lead wire surgery (the permanent one, not the trial--it is obvious that they are different) because it includes a laminectomy to get the paddles in the right place. I’ve read that it usually is 3-4 months before people feel good enough to go back to their normal lives, and can even take a lot longer (and sometimes shorter), depending on the person. I am looking forward to the spring when it is helping me and I am healed from surgery. I am not, however, looking forward to going through the back pain of surgery again (and at a more intense level). I am also not looking forward to missing out on Thanksgiving celebrations and possibly even Christmas. If the permanent implant surgery goes like my trial did, it will give me relief but I will be in a lot of pain from the surgery itself and will not be up for visitors for a -long- time. So, it is possible that there may be a large amount of time that I am not online or available by phone and whatnot. It is extremely hard to find a way to lay where I can type with the limitations after these surgeries. It was hard enough to do that after the trial, and that was so minor compared to the next one. So, I will probably be MIA for a while with only a few updates when I am feeling up for it. 9 more days and Hope will be a part of my life… and Hope will change my life. Just like HOPE truly has changed my life in many many ways. It seems like Hope is the PERFECT name for an object that is going to change my life and give me a chance at a brighter future. Besides, my cats are all boys, so I need a girl in my life ;) I know to most people it probably seems silly to name such a thing as an implant… but it makes sense to me. If people can name their cars and other objects, why not name something that is going to change my life? It also helps save me a lot of time typing out the very long name each time. =) I am going to post this and check out a few blogs before I head to bed. I have been awake longer today (15 hours so far) than I have been in the last 2-3 days combined, I think. I hope that everyone is having a good day--happy November, everyone! This is going to be a tough month for me, but in the end it will be well worth it. Please please pray with me that the surgery would go as planned and that there would be no serious complications… and that I will get similar relief from the permanent implant as I did from the trial one. I greatly appreciate your thoughts and prayers. God, prayers, hope, and love--it’s all I’ve got… and all I really need! =) |
Hurray!!
Well, aside from the pain that has come back......SARAH! This is wonderful!
The SCS did what it is supposed to do! This is really gonna make a huge difference in your life!! I'm thrilled you'll be getting your implant in the very near future as opposed to having to wait for months like others had to do! And naming your SCS is fantastic! Several here have done it! "Hope" is beautiful! And you initially were thinking 'Ray of Hope'.....and of course me being the VAIN one......I was gonna say HEY! How about "RAE of Hope"....... :D God Bless you Sarah! Thank you SO much for the update! Rae :hug: |
Sarah so glad to hear you got so much relief from your trial. Nov 9th excellent. Brilliant you have something to look forward to. Don't be getting bogged down with what pain you will endure post surgery. Think positive and remember after the initial pain of the op there is a bright future ahead ;)
Good luck :hug: Jackie |
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I am so stuck on Hope, but it is indeed going to be my little Ray/Rae of Hope. :) After my grandpa who is so special to me... and one of the first friends I met who enlightened me about life with a SCS. Perfecto! =) :hug: Insurance approved it, so the date is now final! November 10th it is! 8 more days! :D:):grouphug: |
Gosh .. I'm excited for you ... November 9th ... not long now! I'll be thinking of you .. and with you all the way in spirit. (hug)
Hahah .. do any of you find you get all emotional for people on this forum .. I am crying, proper snotty tears now for you .. |
'Proper Snotty Tears'......
Saffy, you are too cool! :cool:
Doesn't that sound like a good idea for a title to a book?? Sarah! You are a writer! We need to find you a publishing company! Who knows......'Proper Snotty Tears' could go on to getting a SCREENPLAY! ......I think we got this excited on Mark's thread.....yes indeed! ......propersnottytears.......too cool..... |
I love it, Saffy! haha :)
And Rae--I LOVE writing. I so wish I could do it more. I have lost a lot of inspiration for writing with all this pain. I used to write childrens books--and have dreamed of writing a book about this whole experience.. following God even when the pain is awful--and knowing it serves a purpose far beyond what my mind is even capable of comprehending. I miss writing... and reading, for that matter. Both have gone by the wayside... it was bad enough to limit them, but now I haven't done -either- for months. How sad to not make it to my goal of reading 100 books this year... how sad that I haven't read a book in a few months. It makes me so sad. I am excited for Wednesday. One more week... it's coming soon! I am a bit nervous that we are thinking my daily headaches could be caused by a problem in my neck or back (since I already have such problems there).. and in a week, no more MRIs are allowed. How have you guys dealt with that? My surgeon said that with my extent of problems in my back, it may be hard to get care in the future without the clear images from an MRI.. and that worries me. Still, that alone is not enough for me to cancel this--99-100% pain relief was too wonderful and I am not giving up on that unless I have no other choice! I cannot wait for this next week to pass... I go to my doctor for my pre-surgical physical tomorrow.. and need to get a flu shot. They are happening today and tomorrow for free (at the college.. through my mom's insurance) and if I don't go there, then I have to pay for it... but if my doctor will say that I am high risk, I can get it done any time (by appointment) on campus--but NOT in the student union where they are being done today and tomorrow... thousands of healthy and sick people--I cannot risk getting sick. I don't know what classifies as high risk.. so I may have to risk it or just end up paying for it. I am on steroids that weaken my immune system... and am having surgery in 1 week--I cannot afford to get sick! I have already told everyone that after today, I cannot have any visitors until I am healed (some at least) from surgery. I can't risk someone bringing some sickness into my house--I catch everything anyway... and then with the steroids--yikes. I did tell one friend she can come over tomorrow since today is her birthday and she has other plans... only because we've been trying to get together for 4 weeks and it hasn't worked. But that's it--nobody else allowed in my house! The last thing I want is to catch something and have to put this surgery off. Nuh uh. I need it--and I need it now! :D |
We are definitely all going to be sending out those good vibes over these next few days.
"Cough!" .. Umm .. tis ok, I turned away from the computer *grin* .. actually, it was just a crisp going down the wrong way. This time next week I'll have seen my Nurse Specialist (Debbie) .. I've got a whole load of questions for her that I didn't think I would have. I thought I'd read enough already, but coming on here has opened my mind to so much more. |
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Good Luck tomorrow Saffy :hug: Keep us updated;) |
Jackie .. what are you on!? It's next Monday, not tomorrow/today. (Checks calendar .. yup .. Monday .. heheh! My husband and my youngest daughter who will be caring for me in the first week or so are coming in to see the Nurse with me)
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In 48 hours or so, I will be sitting in the surgery center room getting ready to head home. I am so excited that I don't even really have the right words. I am thrilled that time has passed so quickly... and on Friday I changed pain medicines and I have been getting a bit of relief--that sure has made this time a bit easier.
I'm excited, nervous, and a lot of other things. It's finally almost here, though. I am so so so ready for this! I would appreciate any and all good thoughts and prayers. Thanks, everyone! <3 After surgery, it may be a while before I come on here and update.. it all depends on how I am feeling. The one place that will definitely be updated is my CaringBridge website. If you'd like the link, please let me know and I will send it to you. Even if I am not up for updating, my mom will be updating that for me. So until I am feeling well enough to come back here and update, look there for updates! :D <---- Me, excited and ready! :hug::grouphug::hug: |
I'm thinking of you .. sending those good vibes. (They're my prayers .. they come straight from my heart, so they're the same thing really!)
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Good luck tomorrow!
Sarah, I hope you get a great night's sleep (although I know you are anxious and excited) and get plenty of rest for your big day tomorrow! I hope the surgery goes well and remember each day you will keep feeling a little bit better as you are healing. I am very proud of you and so happy that you are going to get some much needed pain relief! Remember, to take things easy as you recover and if you need me to pass on a message let me know...Sending many happy thoughts and prayers your way! I am so glad we get to be surgery buddies :) Love you, :hug::hug::hug::hug:Tara
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Ugh. What a journey it has been since surgery.
I've been in a LOT of pain. Since oral meds don't help me, I am pretty much just dealing with the pain on my own. I'm taking tylenol #4, but I don't feel ANY relief at all. My feet are hurting so badly because the SCS hasn't been turned on yet... so that pain is between an 8 and 10 constantly. Then I am having extreme pain from where the bone was removed and where the paddles were inserted. So adding the two pains together is really making this difficult. Nobody has been able to come up with another solution... but this was my biggest fear-to go through with the surgery and have to deal with the pain with no relief. I know it won't last forever, but it is hard. The one positive is that where the battery was placed, I only have pain if I push on it. I know it was just cutting through skin and not muscle, so that's why... but I am relieved to not have pain there in addition to my feet and back. I am going to go rest for a bit--it hurts to be on here typing. But I will update more when I am feeling better. Hope everyone is doing well. |
Hi smae
been following your thread since i joined this site and praying that you get some relief soon. everything was so great for you during the trial i remember reading about you going shopping and only hoping that i will get that relief when i get the scs trial and implant in december. i hope the pains begin to ease soon and that you can turn on the scs soon for the relief you need jenna:hug: |
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Sarah, I am so sorry you are having a rough recovery! I don't understand why you have to wait to have your stim turned on. Every surgery I have had they turn mine on right away and that is why my stim guy is going to be there. I feel very sad that you are hurting so bad and it also makes me start to be a bit nervous for mine that is coming up. I hope that they can do something for you soon! Take care of yourself sending lots of hugs and prayers! Love you, Tara. |
Well, the stimulator was turned on one week ago.
And the staples were taken out on Monday (25 of them). I am feeling great--as far as pain goes, anyway. I have a host of other medical problems and symptoms that I am struggling with... but the SCS is doing wonders for my pain. I am in awe of this thing. I am tapering off of 3 of my medicines and so far it is going well. Pretty soon I will be off all but one of my pain meds! :) Woohoo! I am tired so I'm going to leave this message at that, but I am feeling back to normal (after only 2 weeks) and I will be back again soon! |
Oh Sarah, please forgive me for not being there
When you had your surgery and post surgery, where was I? Down in the valley, the valley so low..... I am so sorry to have been away during your crucial time, and now I am sending up prayers for you dear Sarah that the SCS will truly deliver and your healing will progress and come to the point that you have relief.
Prayerfully, Mark56:hug: |
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I have been avoiding NT because I just don't feel like anyone I have met here can relate to what I am going through right now. The pain has come back full force and I almost feel like I haven't even had the surgery at all.. and that breaks my heart. So I've been MIA. Not sure what the future holds anymore... I was SO hopeful. :( |
Smae i am so sorry for what you are going through and that you are in so much pain. I remember reading your post before i went for my scs trial and you did so well at your trial. something has to have gone wrong have you been in touch with your pm doctor? i know you have great support from you mother but I am sure some of the guys here will be able to advise you better than me. really pray that this turns around for you soon
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Depending
After my surgery, as you know, they waited a full two weeks to turn on the stim, wanting to get beyond the pain of surgery before trying to tweak pain with stim so the stim sensation was directed precisely upon the nerve pain which was the target. With your complications, that may be the reason for the delay, and the delay is time which will pass moment by moment.
I pray for you that your time seems to go by quickly and that soon you have the blessing of the stim to bring everything under control. God bless you, Mark56:hug: |
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The surgical pain is all gone as far as I can tell. It's just the normal old pain. I had 99% pain relief when they turned the stim on... it was when I went off the pain meds that the pain came back. So unfortunately it seems too much of a coincidence and now I don't know what to think. Do I go see my surgeon and have this thing removed, or what? Who knows. Blah. I see my pain management doctor on the 15th, but he won't be able to advise me much on the SCS.. will just lead me back to the surgeon. And I can't see him for at least a month. |
Hi Sarah
I am only due to have my scs done on thursday so I dont claim to be any expert but my dr has already told me he will not be changing or lowering my medication for at least 3 months as everything needs to settle first. This was a big procedure you went through do you think you may have come off the pain relief too quick? I know you have other health problems but maybe you need to keep up the pain relief for another little bit. Also from what i read most of the people on this forum who have the scs still take pain relief but just not as much as they did before the scs . How about putting in a call to the surgeons secretary and ask her to put it past the surgeon Its only been a few weeks since your scs and i think you should still be on your pain relief Again i know i have not have mine done but it breaks my heart that you are in so much pain atm. pain drains us mentally and physically so please make the call and dont suffer As for the person on fb i think you will always find people who have had good and bad experiences with the scs, even on this forum you get to read both sides. You did do your research i read your thread before i went for my trial so please don't doubt yourself you did the right thing. but please try and remember how good the trial was and how good you felt I really think you can get back to that but maybe with the help of some more medication for a while. If you are anything like me you have no been moving for a good while with this pain so all those muscles need to build more strenth and they will hurt the more you do things and this could be adding to your pain. Sorry for going on and on but I really feel for you and hope to god you get some relief soon. Take care xx jenna |
Sarah sorry to hear that you are still in pain.
Im now 4 months post surgery and I am still on some pain meds too. The stim helps with the burning and stabbing pains that I have in my legs, but it doesnt do much for my back at all:eek:which I was a bit disappointed with too. I thought that once I had it I could sit for hours, because I cant generally, and not have any problems that the stim will help that. Unfortunately, it hasnt. Im not saying its not working, it is, and I have great relief in my legs but not my back. Maybe as Jenna was saying , did you come off the meds maybe too quickly. You did have the paddles done and Im sure that takes a lot longer than 3 weeks to settle in. My Dr did tell me it can take up to a year for it to be REALLY settled in and the leads/paddles to be scarred in. Maybe you should go back on some of those meds? especially when I read that you had been out of the house for some hours , more than you have done in months. Just a suggestion. I do hope that you will be able to get the stim back to working like it did when you could get out and about. Take care Jackie :) |
Jackiey has a point
Yep, talk with your pain management doc about whether to do some of the pain management assist with meds on top of the SCS.
:hug:z, Mark |
I just responded to another post so I feel like I'm repeating myself.. getting confused trying to keep up the same conversation in two separate threads.
I am still on narcotic pain meds.. I went off of 3 medications, but am still on some. One pain med and some other meds for other conditions. I don't want to be on that fentanyl patch for the rest of my life. My surgical pain is all gone so I don't understand what good it will do to go back onto that just to work down again later... if my pain is not surgical pain, but my neuropathic pain.. I'm going to have to deal with this sooner or later, right? I am beyond frustrated. I see my pain management doctor on the 15th and I plan to talk to him.. but I don't imagine we will find much of a solution. The only solution people have is "go back on the meds" and I just can't do that. I absolutely cannot risk damaging my kidney. That is too important to me. I'm already on a narcotic pain medicine and take it every 4 hours religiously... or my body screams at me. And that isn't enough. |
Praying for YOU
and for hoped for relief from pain my friend,
Mark56:hug: |
I hate to be lazy, but I can't possibly type this all out again. This contains some information that I've already posted here, but this is what I found out today:
I am beyond ticked off. Ugh. I know I've written about this, but am going to give a short recap. In the last year, I found out about a few health problems that I have developed. There are two that affect me the most. One is POTS (postural orthostatic tachycardia syndrome). The other is peripheral neuropathy. I have a pretty severe case, and deal with a LOT of pain--it is constant. In October I had a trial surgery to test out a spinal cord stimulator. I had 100% relief for the three days I had it in. It was AWESOME. I got the okay to move forward with the process, and the permanent implant was placed on November 10th. On November 17th, the SCS was turned on. As we were programming it, I was having such a hard time. I couldn't feel it in my feet, so I didn't know what to say when he would ask me if it was good or not. I could feel it in my legs and halfway up my stomach... but not where I needed it most. I didn't think TOO much about it, because I have nerve damage in my feet. I struggle to feel any sensation except pain due to all the numbness. We finally settled on some programs, and I went on my way. Day after day, the pain just kept getting worse and I became more frustrated. Wasn't this thing supposed to be helping me? It's supposed to help 50-70% with pain relief, so I wasn't stupid enough to think my pain would be totally gone... but I wasn't getting ANY relief! My pain management doctor thought that it was probably because my family doctor took me off three medications at once, so he put me back on the fentanyl patch for pain. That isn't helping at all. Everyone around me wanted me to see the rep from Boston Scientific and get reprogrammed, but I just KNEW that that wasn't the solution. I could tell that the problem was NOT that the program settings needed adjusted. It's that I can't feel it at all, no matter how high it is turned up. That means that it is probably in the wrong spot! Finally someone listened. So today I went to the clinic and had an X-ray done. Ugh. When I did the trial, they placed the SCS at the T8-T9 area of my spinal cord. I had 100% relief (with medications). My doctor pulled up the X-ray from the day the permanent implant was placed. It was partially in T8, but only halfway. It went to T11 or T12, which explains why I feel it so high in my body (up into my stomach and back). So it was placed incorrectly! It is just BARELY off--1/2 of T8 isn't covered. I don't know anatomy and I don't know if that T8 area is where the nerves are that reach my feet or not.. but that's the only difference is that all of T8 isn't covered and I am not getting relief. THEN... the x-ray from today. Now it's from T9-T11/12. So after it was placed (in the wrong spot), it MOVED. That isn't supposed to happen. There are two options for a SCS--leads or paddles. Leads are wire thin and require a less invasive surgery. The paddles are thicker, and bone must be removed to fit the paddles into place. I had the paddles placed. They aren't supposed to move. They are supposed to be secure. They tie the paddle to the bone to make sure it doesn't move until the scar tissue forms. So now I'm stuck. I had the surgery.. it was painful and expensive. It wasn't placed correctly. And then it moved. After surgery, the nurse told me I had NO restrictions as far as physical activty went. I knew better. I have talked with a lot of people who have SCS implants. They say that they can't lift, bend, twist, etc after surgery. Even though the nurse said that I was free to go on as normal, I was EXTREMELY careful in what I did each day. So either I did something I wasn't supposed to and it moved (which I can't imagine---I can't tell you how careful I was!) or it wasn't secured properly. GRRRRRRRRRRRRRRR! So now what do I do? I have no idea. I have surgery next Wednesday and am hosting a baby shower on Feb. 19th.. so this is going to have to be put off until March. That SUCKS. I am in SO much pain and am miserable and discouraged. I'm supposed to be BETTER by now, not worse. I haven't met with the surgeon yet, but it looks like I have 3 options: 1. Leave the SCS in and don't use it. It would be the least painful and least expensive right now, but leaving it in will prevent me from ever getting an MRI. I was okay with that when it was going to work.. but if it is going to be turned off and still limit me, I don't like that. 2. Have it removed. Probably very painful and probably expensive. And then I'm back at square one for pain relief. My only other option was a pain pump and we don't want to go there because I only have one functioning kidney. 3. Have it fixed. This is the most logical, but not an easy fix. It will require another painful surgery. It will require recovery time. My mom will be back at work, so I won't have anyone to help me. It's expensive. And how is this time going to be different? I'd hope he would get it in the right spot.. but how do I keep it there after surgery when I was SO careful? I laid around and didn't hardly lift a finger. It STILL moved. So what do I do? I don't know. I am extremely frustrated and just want to cry. I am sick of this pain. I'm sick of one thing going right and four going wrong. I'm sick of being stuck inside and JUST as I was getting a taste of freedom, it's going to be taken away from me. I'm upset that I won't be able to join the new Bible studies at my church and will have to stop going on Sundays. I'm frustrated and hurting and upset. Grr. I don't know what is going to happen. I don't want to look back in a year and have this be the second surgery I wish I had never had. I didn't go into this blindly.. I researched it and thought about it and prayed about it and I was confident. Surprise surprise, it had to go all wrong... BLAH! |
OH Sarah....
I am so sorry your situation is so complicated with what may well be a surgery which produced a bad result. Goodness, if you took it careful, and I was told to TAKE IT CAREFUL afterwards for many weeks, I have a hard time imagining that you did something to cause movement of the paddle, because they DO strive to tie them down securely to prevent movement. This is far more invasive than the trial as both you and I know quite well.
All I can really offer are my prayers for you in seeking to work this bad situation out to the best conclusion for you, with the end result being control of pain which was your goal all along through your careful research and consideration of the procedure. You are in my prayers, my friend. Great BIG :hug:z from afar, Mark56 |
The surgeon is avoiding me and the nurse is practically refusing to let me come in and see the doctor. Seems as if they know they made a mistake and don't want to own up to it. I don't know.
Went around the nurse and made an appointment to see the surgeon on 1/31. The solution they keep giving me is to be reprogrammed. That won't do anything! I spent an hour and a half with the rep yesterday reprogramming and it didn't change anything. As I said to my friend, think of it as a house. You're building a house and you are trying to get electricity in the living room. The wiring is in place and electricity works in every other room. Is messing around with the wiring in the bedroom going to make the lights come on in the living room? No! The wiring has to be in place in the living room! Same thing. If the SCS isn't set to reach my feet, changing programs for what I feel in my legs isn't going to make it reach my feet. I don't know why I can get that, but everyone with a medical degree (except my PCP, who is powerless in this situation) can't get that. The solution I've been given is to go be reprogrammed again in two weeks. That isn't going to change anything! Frustrating. Anyway, tomorrow morning (in 11 hours), I go in for surgery to have my gallbladder removed. So for now, I'm taking my mind off the SCS mess. I've turned the stimulator off and am going to focus on this surgery and healing... and then will try to deal with this mess when I am feeling better. Just wanted to update everyone here. |
Prayers for Today
That your surgery goes well today and that after healling, you are able with the docs to get your SCS doing and acting as it is supposed to help you.
Prayin, Mark56:hug: |
Quick update
I only have a few minutes, but I wanted to write a quick update.
Nobody can figure out why my SCS isn't working. They all are saying maybe the hardware isn't working correctly etc... but I KNOW that isn't the problem. If it was a hardware problem, I wouldn't feel the sensation, and I do. The problem is that I don't feel it where I need it... therefore I am convinced that it is just in the wrong spot. After weeks of fighting through appointment after appointment, we finally have a next step. Tomorrow (Feb 8th) I am going in for a second trial surgery. I will turn my stimulator off and go through the process again. This time, it will be placed below the permanent implant. Hopefully, that will get the sensation to move from my legs (where I currently feel it) down to my feet (where I need it). I will spend half of the trial with both stimulators running, and half with only the temporary running. If I get relief from both, they will probably do a second implant. I don't want two of them and don't think this will be necessary. The one I have now isn't helping me in any way, so I don't imagine this will be the case. If I get relief from just the new temporary one, they will (hopefully) go in and move my current stimulator into a new position so I can get relief permanently. And if I don't get relief at all, I am officially out of options. Not just as far as the SCS goes, but as far as all possible pain relief options go. So, obviously, I'm praying the trial helps tomorrow... otherwise I am out of luck! |
For Sarah tomorrow!
May your second trial bring results your doctors are surely hoping to bring to you. May their hands be guided to the proper place to implant the trial leads, and once in place, may you know through this trial relief.
Prayin, Mark56BIG:hug:Z |
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