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Been sending out those positive vibs and thinking of you Lily :hug:.
I really hope things are going good at your apt today with the Rep. I am not sure what time the apt was for but sure am wishing that your able to have more control over the pain and that you are learning to work the stim . I am praying the surface pain where the leads are is calming down for you. keep taking things slowly and do as both Mark and I have suggested ..writing down everything and doing the journal. and of course follow the doc and reps instructions. I will ring your way on Tuesday afternoon . if your up to it we wouldn't mind if ya give a quick up date on how you are doing as we are all rooting for you and thinking of you lots. :grouphug: sending healing hugs and calm low pain wishes to :hug:you :hug:. PEACE BMW...Tina &T-Rex |
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It was all laughs and jokes right up to when I went under. When they brought me back up, I asked the doc to 'curve' the leads around my eye. He said he couldn't because the needle is straight, and I remember then telling him that he had to invent a curved needle! I can't beleive that I had the audacity to say that. I will blame it on the drugs. :D (But really, it wouldn't hurt for someone to invent that.) That's enough ramblling for now - I need to keep my posts short and to the point - which is to log my experience with the stim. So I will be back soon with more info soon. :) Lily / Mylastnerve |
Ha I LOVE it Lily :cool: we knew your a fighter inventing a curved needle while during surgery just proves it . Oh Yes I think a wildish clever beastie name for your new addition is in line . Play with the control I am sure you have some instructions on how to work remote to turn on,off up and down
(higher / lower) . remember to keep area clean ,dry same with your hands and stay away from people who have colds and stuff. Avoid any dirt or germs that might cause infection this is the number one rule !! follow with lots rest good meals . taking meds and following doctors and Reps instructions. do a drawing ... I will trade you a poem for a drawing . or I will do a poem about your drawing :) more good healing thoughts to you and your Hub. Be in touch soon . your doing awesome sister :hug: May A very smooth flow towards the trial being successful continue undisturbed! PEACE BMW |
Avoid Infection
Do all you can do to avoid infection! Even having followed all of the instructions, I wound up with a gnarly infection post-Trial, pus, ick, and all. Antibiotics had to knock it, and, no doubt, delayed my permanent implant. BMW is right on!
Take all due care! Peace, Mark56 PJ :) |
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Well, after an attempt to meet up with the rep yesterday (It was the ulitimate Starbucks joke - he told us to meet him at one, and he ended up at another that was a block closer to the freeway, thinking that that was the right one! hahaha!), I finally got to meet with him this morning. So NOW I have some programs that I can work with, rather than stabbing spasming jolts. Funny thing was, though, after an hour of programming, I felt HORRIBLY nauseous. So bad that I went and laid down and slept till this afternoon. Too much stimuli for this little bunny. So now I just have to lay in wait and watch for pain to hit, so that I can try this puppy out. I DO have a name in mind, but it has to work well for me to give it that name. So there, I left you all with a wee bit of suspense. For all of us, really.........more on this story later, folks. :D Lily / MLN |
So dose your screen name "My last nerve " represent what you might be saying or what someone might be saying about you?
:Soapbox: Dang going out and working in the garden :mad: ! no opppsss...You better behave ! there is plenty of time to push your limits !! dont blow this shot of managed pain before it even gets started ! It is so easy to get infection. Seriously PLEASE be careful. Okay I am done yelling at you now. :p How long are they going to let you have the trial stim for at least 10 days ? I hope at least that long :confused: I am sorry Lily I know I sound like your mom nagging at you but I just wanna keep ya infection free . I have found That is almost always the reason why others have had to have the stim taken out . :( . So be good okay and keep that head up. I will chat at you tomorrow . I hope you have good results as you work with the programs and stim. :hug: :hug: PEACE at you inside and out. BMW |
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I test drove it a bit last night, with mixed results - some good, some not. I think it takes some time to learn to understand this little beastie. But I think that I like it! It's my pain that is/was getting on my last nerve :eek: Lily |
Ha I was kidding you on your name lastnerve in that you seem to be a handful never sitting still and always need to keep moving and being busy in motion. hard to stay on top of and pushing ones nerve :lookaround:
so names I have thought of some ... Mosie?? TZippy? how about...from video game a Super Hero named - Eclipse - (manipulates light has rod that shoots lasers) or maybe Goblin ?? I am off now to call you... but wanted to throw some names into your mind. :hug::hug: PEACE BMW |
Hi Lily
Glad to learn your Trial is turning out to be a successful test drive. Still hoping all goes fully well for you on this and praying.
Be well, Mark56 :) |
:( Lastnerve had a really really bad day yesterday and the stim just seemed to make the pain worse .
wish for everyone to join me as I keep sending positive healing thoughts and many prayers for this to start helping her manage the monster pain. Lastnerve rest, rest and take each day slow and easy. I am here in your corner praying . dont give up hope on this yet. call the rep and your Doc if need be. your not a pest doing this your just a normal person trying to get control of the pain and trying to figure out how the stim works...if it needs some tweaking by the rep dont be afraid to be in touch with them!! :hug: :hug: :hug: :hug: :hug: :hug: :hug: have you in my prayers and sending positive vibs healing low pain thoughts PEACE BMW & T-Rex |
Difficult days hopefully pass
Hi Lily-
I so hope the difficulty of yesterday is not repeated today and that your Last Nerve will be controlled by this device. Praying, Mark56 :) |
((((Lily))))
http://dl2.glitter-graphics.net/pub/...zrqxkjeyew.gif
......praying for you ........ ........................don't give up..... Rae |
About Calewark
BMW was kind enought to have started this thread because our mutual friend, Calewark aka Cheryl, was struggling with face pain, trigeminal neuralgia, and working in the direction of her Trial. The Trial was both flop and benefit, as Calewark has recorded, with the wire harness dragging down off her face and chest resulting an early termination to the Trial. It was at termination Calewark first realized, "hey, this thing was WORKING!! Put it back!!" Alas, too late. But then she was scheduled for permanent implant.
Today I had the privilege of a phone call from Calewark. She was checking on me. Her report, however, was alarming! Her pain has been over the top for many days, and now she has been started on meds which are better addressing the nerve pain as she awaits her 5 August permanent implant surgery. The wait from Trial to Permanent is SO HARD!! SO Hard. I hurt for Calewark, my sister in this forum, for her horrible pain and the wait. Soon her time will come. About a couple of weeks, and I pray that God will come alongside her and hug her a good one to help with this long wait for help through surgery. :smileypray: [Oh, I see the smiley pray icon has moved in the list again] Well, anyway, Calewark has not even come on NT lately to read because pain has been so overwhelming for her. Give her a prayer if you will, OK? Many thanks on Calewark's behalf, she appreciates it! Mark56 PJ :smileypray: |
I too got to have a chat with her. It is an ugly cycle pain stress more burning monster... Special hugs to you Cheryl .
http://i294.photobucket.com/albums/m...C/HgSister.gif If I was there I would drive and stay !!!!!!! we will work on plan a plan b plan c things will be okay :hug: try to relax take a hot bath and enjoy some "me" time tonight . Oh Boy ...seems like a bumpy few waves for many of us right now . I think I am lucky to only have a cold or maybe the flu. T-Rex is stomping around eating the flames . and I am fighting the ick . I think we need a few words for / to all that have, and are ,sharing here on this thread and for all the readers that visit this room . May the Heavenly angels and higher power stay near us to provide comfort, strength , be a light when we are in the dark and feel alone ,... be with us to guides us threw our challenges and issues safely and successfully . May those of us who are in the different stages of stimulator implant find courage and serenity and remedy for their pain... there are a few Cheryl, Lily, Leagllady, fionab , S.H. , ... yes more then a few... Please know all of you and.. more the yous are in my prayers ,in my mind and heart... wishing miracles for positive everlasting management of pain and improved daily living. Please use me ,threw you , use me . to help others in the most positive ways . :grouphug: ThankYou. PEACE BMW p.s. :Sick: lurking in between the " ick " . |
My angel
HELLO EVERYONE,
Thank you Tina from the bottom of my heart. Tonight, when I talked to Tina, and the last several nights all I do is cry. Along with the pain, my world seems to be falling apart around me. My family is tired of me and my needs. I know they understand ( kind of) my pain, worry, unhappiness, concern, sadness, etc. But not like Tina. If she was not in my life, I really do not know if I would have a life anymore. I have so many worries that have come up for the stim. surgery. It is complicated due to where the leads are going to be tunneled and where the incisions are going to be. One way the facial nerve cut get cut. The other is problems with the incisions are from my mvd. The time is dark right now and I just wonder why all these problems keep coming up and I can't get a break and have everything go well without complications. The emotional part is the worst. Hell with the pain. I am getting used to it thanks to a lot of meds. The big problem is I am really alone. I live by myself and I have no one to just talk to ( the good things and the bad ) and just talk back and forth about anything. I am usually okay with living alone; but with this, it makes it so much harder. Tina has to listen to me cry and listen to all the daily problems. She always has the right answer. Take a bath, get something to eat, relax, and a good nights sleep. That is all she can do. I know if she was here, my days would be better. Isn't it strange that a person who you have never met can actually be the one you really want to talk to. The one I call when I am sad, scared, worry, and at my end. I appreciate you Tina so very much and thank you from the bottom of my heart for being there for me. I think my family is just tired of me. I really do not blame them. You understand and that means so much to me. I know you will be with me on the 5th. I know I will feel your presence. Your prayer is beautiful and said so much. I am sorry that I burden you so much. I guess that it is what sisters are for. Please take care of yourself. I know you feel terrible and you need to rest more. You have a difficult job this time of year. For all of you that talk and communicate with Tina, let us all say a special pray just for her each day saying how much we appreciate having her in our lives. Love you and take care of your self.......you have to cuz we all need you Love you Cheryl |
My dear friend Mark
When I talked to Mark today he sounded good and then all of a sudden some burning pain came back. While we talked he upped PJ ( his stim ) and it seemed to help a little. He sounded so worried and I wanted to cry for him. By the end of our talk, he did sound better. Mark was there for me to listen to my worries and concern of the surgery. He always gives me encouragement that the Lord will take good care of me. I realized that talking to Mark is we think that the minute we get our stims that all our problems are over. What we are finding out is there is still challenges, things that go wrong, and that nothing is perfect ( except God of course ). Pray for Mark. Let this be just a little thing and he just needed to change the program. We know the burning pain is always there. The stim is there to interfere with it's continuous efforts to drive us crazy. That is why we have the stim and Mark and the stim just need to learn to live together. It will be okay. It just takes time like everything else. Thank you Mark for being so kind and for all your prayers. Thank you for listening to me today. At least I did not break down and start crying. I was already cried out from talking to Tina. Take care of yourself and know that I think of you daily.
ASAP Your Sister Cheryl |
hang in there Lily
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Hang in there. Give it time. It will be okay. Just relax . Each minute and hour changes with the trial. You just have to learn where to set the the device and you will learn what is best. Take care of yourself and know that you are in my prayers. Your sister Cheryl |
(((Cheryl)))
speechless, in tears.......
:hug::hug::hug::hug::hug::hug: it's not right for you to be alone! :( you are NOTTT a 'burden' to anybody! You are a blessing, my friend and you've brought so much to this forum.... We 'need' you just like you 'need' us!! We're in this together and please know you are nOT 'alone'!!! There has GOT to be the light at the end of the tunnel....... right around the corner has to be your Saving Grace...... God Bless you dear Sis :grouphug: .....sleep well for the nite....... tomorrow will be a new day. We luv u Rae |
Praying that wll will be Well
Wow, praying for Lily and for Cheryl that pain be abated and controlled, then for BMW that Tina get over the ICK! So much with which to deal. We each have our issues, and hold one another up in person and in prayer. :smileypray: I feel such gratitude to be among you all. Each reaching out to the other.:grouphug::You-Rock:
Blessings upon all. Peace, Mark56 PJ :) |
Cheryl,
It hurt my heart to hear you talk - I am so sorry that you are alone in your fight with this thing - I hope that you know that you have all of us here to support you as you work through this all - because of that, you will never be alone, ok? Please rest assured that we are all here for you. I am trying to keep people realistic about this stim, in my world. Loved ones can have the "all or nothing" "fixed or not fixed" attitude about this device. Thankfully not my husband, though. He gets it really well. I am having some mixed results, and feel like I am winging it with this trial. On Monday I got it programmed. On Tuesday, I had my Chronic Pain support group. I had pain, so I turned the thing on for a 1/2 hour, then turned it off for a while, and then the pain would come back, so I would turn it back on again. I cycled this way with it until the evening, and when I was done, I got that awful pain that makes you seriously consider the ER. Kinda a kick-back pain right after I turned it off, and deep into my eye. So last night, when the pain came, I turned it on and left it on for almost 3 hours. 15 minutes after I turned it off, I got the kick-back pain again, and again really involving the eye. (I am a V1/V2 TNer. So the leads are over the eyebrow and under the eye.) Today I am turning it on without there being any pain, and leaving it on for a long time, to see how that goes. So as of right now it is indeed a mixed bag. The stim DOES interrupt the pain, when it is on. But I feel like I am trying to read a wild horse, and don't know quite how to go about taming it. Does this make sense, anybody? I feel like I am straddling the fence on whether it works or not. Thanks for any and all feedback, and I want you all to know that you are in my heart and prayers as well, :grouphug: and I pray that we all find that which we need out of all of this. Lord knows we deserve it after fighting this pain for so long. :( Much love , Lily |
Oh yes Lily!
yes yes YES i DO know the 'straddling the fence' thing!! All too well!
I was very stressed out and frustrated the first 2 days of my trial, and was in PAIN from the trial procedure itself (HUGE needle in the spine!) plus i felt very 'rushed' with my trial. I was confused, stressed, hurting, scared all at the same time..... By day 3, tho things seemed to start falling into place and i ended up having the trial for 3 extra days than what i was scheduled for (thanks to a mixup with their schedule) I was able to slow down and relax into it more and the needle pain was gone.. I'm wondering maybe yours is set too 'high' or something? What if you used the slowest, less intense setting (you probably already are), but I'm just trying to put myself there at the scene with you..... That intense pain you get after you turn the stim off is a total bummer. It's almost as tho your body is reacting with a rebellious 'flare' after having the stim on......?......do you feel at least a 50-75% pain relief when it is turned on? Please, Lord I pray this evens out..... take the intenseness away.... Bring PEACE into the mix and let Lily get relief!! :hug: Rae |
Hi Lily
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Hi Lily- During my trial, I turned the thing on and left it on. Of course, my situation is not trigeminal neuralgia and with the back, maybe I could get away with more use. Following on Rae's heels by way of comment, though, I did find that running the device at a very low setting even for sleep still kept the pain monster at bay, then I could turn up the setting for "during the day" stuff. So, my question is whether in a T.N. style use the rep tells you to use the stim sparingly. My guy said to go for it. Use it. Try everything. I did. I felt impressed. Pain was definitely managed during my Trial, so I was SOLD on wanting the permanent implant by my own use during Trial, and I kept a detailed log of the uses, feelings, pain, pain management, and such in order to reflect at the end of seven days with facts for my review. Hoping and praying this will even out for you,:smileypray: Mark56 :) |
Legal How is it when you just leave it on?? maybe rather then shutting it off you just turn it lower... do it slowly ! dont go from like 8 to 2 fast just slowly program it to lower setting but leave it on. ... just try jumping on the wild horse and don't jump off ... run , trot, walk, with it. make notes and dont get frustrated . Stay positive !! it is one step at a time. Oh have you heard back from doctor as to how long for this trial? I hope 10 days! The longer the better. Call rep or Doctor if you want it is okay to do that.
I wanted to call you but I am to ick to even want to talk my throat is sore. so email me okay . Cheryl things are going to be okay. Your are a tough strong smart big sister ! we will figure things out. the meds thing really stinks :( but I am going to do some "scooby doo " ... ha ( research) and back track I think there some helpful in one of my files . Rae and Mark thanks for all the help you both are doing around these :rolleyes: my thoughts are just focused on the ick but when I remember what it was going to say...:hug: a.s.a.p. . low pain and PEACE BMW |
Hi to all my dear friends, Tina, Mark, Rae, Lily, and everyone else who reads the thread.
I just can't tell you because the words are not big enough to thank you for all the love and kindness you show to me. So much more love and concern more than my family, friends, etc. I would guess because you all really understand more than they do; but I so appreciate it from the bottom of my heart. Everything just keeps falling apart as each day comes along with the horrible pain. This makes the pain so very much worse. We all know that stress makes our pain so much worse. But life makes us have to deal with the stress. We really can't stick out heads in the sand and pretend that is does not exist . We have to deal with it one way or another. The stress of the day is that I am on medicare and at a certain point the medications are paid by them until it reaches a certain amount and then they stop. For some of you that remember all the talk about it...it is call the donut hole. Well, I went to get my rx and I am in the donut hole. That means the meds I am no now for my ad will total $830.00 a month. It was around $60.00 per month. The fentanyl patch is the worst. For a 3 month supply is $639.00. The $830.00 figure is just the other meds and are for 1 month supply. So, with the pain and all the other things going on in my life ( which is a lot ) this one just took me over the edge. I will not be able to refill the fentanyl which means I am going to have to go through all the redraw stuff. I was told maybe convulants, vomiting, dizzy, shaking, etc. I really do not have a choice. I have enough patches to last me until 2 days prior to surgery. Hope the withdraws do not interfere with the surgery. Tina calls and all I do is cry. Mark calls and all I do is cry. Today's conversation with them today was not good for them as they can't do anything about it but hear me cry. Then when I am not talking to them, I am still crying but not trying to talk at the same time. If I did not have the faith in God that He will take care of me.....with all the pain, plus the financial situation ( I only live on Social Security ). I would be loading my gun. There really would not be any reason to continue like this everyday. It would really hurt a lot of people of I did this. Yes, I have family and grandkids; but would good am I to them when I hurt all the time and then depressed with all the other issues. I am not fun to be around..........so???? But, the Lord does not want that for me. He wants me to continue here on earth to do His work. What is my work? Sometimes I do not know and then other times I do know. \ I know I can be so much help to others that suffer like the rest of us; but right now I would be the worst one to give encouragement to. At least today. But then I look back before I got the trial stimulator and how much I can help people who have one now ( Lily) and the ones that are getting ready to have one, and the ones that are looking into getting one. I would be a great person to share the happiness of going the stim way. Like if you read the beginning of this thread that Tina and I did. I am certain that after the permanent stim is placed ( 14 more days!!!) I will have a wonderful story for all the great people who read our posts and encourage them to look into it. Of course, and to make all of you more than happy. Tina....I am so sorry you do not feel good and yet you have to work in that horrible heat, and hard work on top of it. I wish I could be with you to make you chicken soup and put a pillow under your head and a cool wash cloth on your forehead. Keep up the nose/salt treatment. You may need an over the counter med like sudafed. It will dry you up and help your watering eyes, and stuffy feeling. The sore throat will have to take it course but there is otc stuff for that too. You need rest. I so hope that you are okay with Gary gone. I know you worry so much about him; but just pray for God to be with him each minute to keep him safe. Your worry about him will keep you from getting over the "ick" I am so sorry I burden you with all my sorrow and problems. You are an angel to listen as I go on and on. At least I have you; but really not fair to you ei especially you feel terrible. You are my angel on my shoulder each day. Be really careful. You can still get an infection even after all these years, so if you do not feel better soon, please go to Doc and get some antibiotics. Promise?? Mark, so sorry to burden you also. As I told you, it is so nice to just talk it out to someone who understands. I know you and Tina and others do not have the answers; but I know that if I share with you, you will spend that extra time praying for me each day. I was so please to hear that your surgery pain is almost gone or is gone. I know how hard it is for you to deal with getting your strength back. It will take time. Pray for patience and like we talked about.....walk that extra blocks each day. You are doing great. The stim is doing it's job which is such a blessing. Be careful coming down from all the meds. That worries me for you. Lily, keep working with your stimulator. Do not get discouraged. It took me 3 to 4 days to figure out what worked and what did not work. Can you set one level for v1 and a different level for v2? Try that if you can. Whatever you are doing....watching tv calls for one setting, then if you get up to go to bathroom may need to change setting, or doing dishes, another setting, or if the weather changes calls for another setting, etc. You have to play around with it for a while to find the right setting. I know what you are going through and I have 1,2, and 3. Just relax and do not get it into your head that it will not work. My doctor told me a story. He said he did a stim and after being in for 10 days, it did not work. He was due for his appt. the next day. He told his wife that he was going to call and tell the gal that he was having them taken out and to forget the whole idea. So, he gets there the next day. The doc was all ready to say " I am sorry" that is did not work. He said " yea, do no be sorry. Last night I keep working with it and all of a sudden it worked like a champ and no pain. They put the permanent in and he is doing really well. So you just have to keep working with it. Your nerves are not used to it at first and will after a few days. Do not give up. It will work. I promise. I pray for you daily that you will soon find the right setting and not worry so much. Rae, thank you so much for your sweet and kind words. They means so much to me. You are a special person and so important to this site. I look forward each day to getting a post from you. You take your faith and love for Jesus to help all of us. Your prayers for us mean so much. Your knowledge to help Lily was great. Thank you for being you. So....for now that is about it. Tomorrow I think I will try to write one of my poems ( or whatever they are called ) I have never done this before; but think it is fun to do. Hope you all are having a good day and know that I do not forget any of you daily. You are my family now. I love you all of that. God Bless you All Take care of yourself's ASAP Cheryl |
What a Gem!
Cheryl, :hug:
You have a wonderful gifted way of letting your heart flow right thru your fingers onto the screen.....it's as tho i am right THERE. So much of what you said in this post sounds soooo much like me (except i lack the gifted penmanship :o) I didn't realize you were taking the Fentanyl patches! omg ! i did TOO and i know EXACTLY how you feel! Something is just not right with this setup and it really makes me want to shake my fist at 'somebody'!! For one thing the price of these @#$%^ things is a complete RIPoff!! i get so angry with pharmaceutical BS...... i did everything i could to stretch those patches and make them last..... i was on the 100's....then, somewhere along the line i began to realize (at least in my case) it seemed to be easier on my body to use the lower strength ones (every 2 days) and it seemed to lessen the spikes as far as half-life effect of the med.....and yes, so many pills in between, trying to keep the 'breakthru'....ohhhh Lord. i felt so 'trapped', as tho my whole life had to revolve around if/when the Dr office would call to get my refill, and to be at the mercy of the nurse on the other end of the phone line as to whether or not I'd have enuf for the month......not to mention the humiliation of feeling as tho i was taking 'too much' and being perceived as such...... All i desperately wanted was to be free of the constantCONSTANTconstant painnnn! All the days and nights I just curled up under my blankets and cried..... and yes, the times i'd sink into such despair i would ask God to just PLEASE TAKE ME!!! I know how intense this is for you. i truly know. Every angle of what you describe. Feeling so isolated/useless/alone...... When someone is suffering to the degree you are right now, there should be ample pain relief available! WHY can't the system just LET it Be that way! No human being should be suffering like this. Please PLEASE grasp onto the 'knowing' that you won't be living like this..... you WILL be able to look back on this just days and weeks from now and see that your existence won't have to revolve around this Pharma (puppet-strings) control any longer..... you WILL be able to smile as you drive PAST a pharmacy and realize that you don't have to 'play their game' any longer..... You will get your sense of pride and belonging and importance in this world. You have so much to offer and have such a heart of gold, this nightmare will be behind you. You will be moving forward......not feeling trapped in an endless cycle of darkness and pain. i am so grateful that you have Mark and BMW to be there for you at the other end of the phone......knowing that you are somehow 'attached' to real human, loving, contact.....the warmth of them just knowing and truly comprehending what you are going thru right now. Please do everything in your power to make it a real vision to the core of your very being....convince yourself that these days are numbered..... Freedom is within grasp and you WILL obtain it. Make it a reality in your mind. I know you can do that. you typed out a very heartfelt post, so i can SEE that you are determined and that this nightmare will soon become a part of your PAST.... I don't get the opportunity to be there on the phone for you, so i just couldn't log off here for the night without giving you the best my heart can offer.... You're one less day in the waiting.... I truly am praying with all i know to do You are gonna get your life back, Cheryl. i know you will Rae :Heart: |
Hi All, I'm brand new here and would like to thank Tina for leading me here.
"Thank's Tina!":hug: Also, Cheryl if there were anything I could do to speed your implant date up I would do it for you in a heartbeat. I know how hard it is waiting when you're in pain. One question for you: Are you saying that during your trial your burning went away?? OMG, I am so on fire and when I read that I thought, "NO way." Then I almost cried. I'm so tired of my mouth and stuff being on fire. To all of you, thanks for your information and stories. I'm starting to get into desperate teritory wondering what to do with my TN. I'm bilateral, I've had 1 MVD on the rt, 3 on the lt + gamma knife and several other invasive procedures on both sides. Long story short: I hurt, I hurt, I hurt. I am praying for you all as you go along in you're journies with your stimultors. xxxx, Cindi |
Lastnerve I emailed you and tried to call too.How are you doing :hug:
AylorCD I am glad you found your way but sorry of the burning monster pain :( Do you think PNS could be an option for you ? Has any doctor mentioned trying this before you have motor cortex ??? Kimmers on page 2 has Bi Lat and one for each side of face... Cheryl you better just enjoy yourself tonight with visiting friend !! then relax I will ring you tomorrow. Sending healing good energy to my family here :grouphug: PEACE BMW...Tina |
hi Cindi!
:)
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It's good to have you here!! Rae :hug: |
Adding Welcome to Cindi
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Cheryl is not on tonight, but sharing a little on her behalf, she was having a hard time with her Trial, because the dangling wire harness became such a hassle and even pulled away a bit, eventually resulting in an early termination of the Trial. She had been wondering in the Trial if it was good or not?? Then, as the wires came out, she KNEW she had been benefitted by the Trial and WANTED those wires BACK! She will probably chime in later to clarify exactly how much relief she felt in Trial, but she was definitely sold on asking for the implant. I hope she will come on in the next few days to answer on her own, and I do believe BMW could add some good comments as well. Praying all releif possible comes your way and soon, :smileypray: Mark56 PJ :) |
Hey Lily, Cheryl, and BMW!
Just sending prayers your way for rest and peace this weekend!:smileypray:
Mark56 PJ :) |
I spoke with Cheryl she is having a difficult time adjusting with the new med change . Lots of the burning pain that many of us know so well. Cheryl Eat something even if you dont feel hungry. Make some eggs or luke warm soup . Try some of that Boost or ensure drink you need to eat good and stay healthy your getting close to final surgery implant . it will be easier once it is fully under the skin and you have the remote. :hug:
Lastnerve getting to chat with you was great . I want to remind you these things in no special order . disconnect .tape wires secure to face fill tub up near half way enjoy a semi bath . Keep face head dry . when your done reconnect and turn the stim on using the program you called full load . The one you said was the better of them so far. Leave it like this all night do not turn it off. just recline and relax . tomorrow as you are up doing things start using the different programs . Leave it on all night tonight and all day tomorrow as you try out some of the other programs when your done trying a program just set it back to the one that has been helping today. also use that setting for night time... Write down how you are reacting to all this. writing it down is so important and useful for the rep and doctor and in turn yourself. :hug: I am off to find something that starts with chocolate... and then a bath. I think the ick is on the way out . :) I hope. :grouphug: PEACE BMW |
Hi Cindi,
So happy to have you here with our family. All of us can help you in so many ways. We share the same horrible, horrific pain that you have. Today was a very bad day for me. The burning would not stop. I was on my way to bed and though I better check in on our site and saw yours. I felt I should post a message to you . Please know that the one thing that we all do is pray for each other first and foremost. Then you will see that se will try and encourage you into looking into the stim and then guide you through the process. I can't wait to get the permanent one in. The trail was a challenge but showed me that it does work. I will write to you tomorrow when I am not so tired and we can discuss every thing. Just take care of you for now Cheryl |
Yay!
Checking in with the first Gotta Have This Stimulator moment.....
I have been giving myself the trial of having the stimulator set at 'on' for the entire day and night without pause. It took a little trial and error to get there, but I finally did. Well, for the last 2 days, I have not been able to tolerate my contact lense on my right eye. So I finally took the contacts out and switched to glasses, and purposefully did not use any of the contraptions to hold the glasses away from my nose bridge. So, of course, I got the intolerable pain right there. So I turned the stimulator to program "nose" that the rep and I developed (the two electrodes closest to my nose only, at my eyebrow and cheek), and said OK, stim, I am going to give you half an hour to fix this. It sure didn't happen instantaneously, but when the timer went off, I all of a sudden noticed that the pain had gone! Whoopee!!! I wore my glasses like a normal person for many hours yesterday. I am getting this thing put in for that alone - if it helps with the rest, great, but this alone makes it Sooooo worth it! Doing a happy dance this foggy Sunday morning...... Lily |
Yes Thats a girl !!!!!!!!!!!!!!!!!!!!
I hope that strong bit of "Ahh haaa this works " feeling remains... exactly like my email to you :hug: Thanks for blessing my Sunday with this post. Love you like a sister! PEACE BMW...Tina |
Lily, that is Great!
It is so good to read that giving the stim a full try over time is beginning to show some positive benefit for you, Lily!!:yahoo: I found that using it continuously although varying the intesity of the signal allowed my body to "soothe" into the signal overall as a pain management tool, while giving me rest, at night, then more vigorous stim, during the day when I needed it. This kind of 24/7 technique for me is working to help me just bodily acknowledge "it's there" and use it for the intended purpose.
Hoping and praying that the rest of your efforts at Trial go well, Mark56 PJ :) |
For Cheryl
Dear Calewark- It is so hard to read of your endless BURNING pain as you struggle to await your permanent implant without reaching out to HUG you in this electronic world :hug:. You have with such strength endured so much both physically and emotionally through the surges of pain, and I so Hope and PRAY that between now and 5 Aug. you will have some rest, some peace, some release or moderation from the excess of pain which overcomes. You are continually in my thoughts and prayers as you struggle, and I know as a group we just want to put you in the center and GENTLY give you a :grouphug:.
May this day be a better day in some way,:) ASAP, Your bro, Mark56 PJ :smileypray: |
QUOTE=Mark56;678858]Dear Calewark- It is so hard to read of your endless BURNING pain as you struggle to await your permanent implant without reaching out to HUG you in this electronic world :hug:. You have with such strength endured so much both physically and emotionally through the surges of pain, and I so Hope and PRAY that between now and 5 Aug. you will have some rest, some peace, some release or moderation from the excess of pain which overcomes. You are continually in my thoughts and prayers as you struggle, and I know as a group we just want to put you in the center and GENTLY give you a :grouphug:.
May this day be a better day in some way,:) ASAP, Your bro, Mark56 PJ :smileypray:[/QUOTE] Cheryl, I have been trying to think of a way to say the beautiful words that Mark just expressed. It is so tough to know that you are suffering like that, and I pray so much that you will find the relief that you so deserve once the stim is in. Please know that I reflect every work that he has so wonderfully stated above. Here's another group hug, :grouphug: and please remember, you are never alone. :circlelove: Lily |
Hi Lily,
I so hope that you read this post tonight. I understand from Tina that you are going thru some tough times today. I want to share with you about having the leads taken out. First of all, there is not pain when they take them out. I did not feel anything. I wanted those leads out really bad. They were all tangled in my hair, it would hurt when the generator would move as it was so heavy, all the cords on my chest where not sticking and falling off. I was a mess. I just could not wait to get them out. It was like a huge thing in my mind that it would help to get them out. It was not 30 seconds when I told the Doc....oh my god......I have to have them back in. I realized how much they really did help and started my despair of waiting for the permanent. The pain was bad. It was like the nerves were so happy to have the wires gone and they could start their streaming. The pain did settle down to the normal pain that led me to wanting the stimulator. You have to hang in there. Do not panic. It does work and you had some times that showed you that. I hope you are not going to the er. That will show on your record and could be a problem as the insurance co may think that it was not working. Pray for the pain to go away. I understand that tomorrow is the day that the leads were to come out anyway. I know you have a problem with a ride. Take that time and take a walk, read something...just do something to pass the time before you can get back on the road. Maybe she could drop you off at a shopping center were you could get a cold drink and keep your mind busy which helps you not notice the pain as much. If you have an attack, just go outside someplace away from people and then just calm down. You can do it. Be strong just for a little longer. You will be okay. I so hope you can read this tonight and if you need to talk please call me. I am at 303-722-1307. I live in Denver so closer to your time and I will be up late tonight so please call if you would like some encouragement. I been through it all and still am. I would love to talk you through it. If you do not call please let me know how you are. Hang in there sister. Love Cheryl |
Thanks for the reply Cheryl.
Thanks for the welcomes guys. You are all awesome. Bless you all. I am praying for pain free days for us all. Cindi:grouphug: |
Hi Cindi,
How are you doing? We have not heard from you since your first post. What are you doing about your pain? Are you still in a lot of pain as before? Let us know. We pray for you. Cheryl |
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