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Soon
Dear Cheryl my friend,
This pain you endure, wreaks havoc and more. You find at such times "can I take this, so sore?" Solutions you sought and found with a test though bitter and sweet, was this thing just a pest? Your doctor, assurance that all had gone well removed leads and wires, consigned now to hell. The wait for the last step, eternity long Brings some to a fear "did I do something wrong?" The process, a challenge, the tiresome wait enraged or so hopeless, "is paperwork late?" Your unit of plastic, some wire, chips, and bits of silicon here and batt'ries to fit awaits just a signature, showing consent from doctor, insuror, the pained one and yet it takes time arranging the lot to a point of calendar moment implanting "Oh BOY!" So when will that time come? You don't want to be glum! Give special attention now to this great need. Friend Cheryl should have it now, oh how we plead. So if it is prayer that moves mountain or plain apply it a LOT again and again. Give Cheryl relief soon and lend her a smile to beam for her fam'ly, her friends, and so while we wait with the patience of thundering herd let's shower our Cheryl with prayers, love, and blur this painful awaiting a call from the doc to hugs filled with hope from the whole of our lot. So, how about it? Having now waxed poetic, can we SHOWER Cheryl with prayers and hopes for a date right away???? Go for it!! Mark56 :):hug::hug::hug::grouphug: |
.....ohh myy....
i'm completely speechless......
......guess that says it all....... :Heart: |
The poems
MARK AND TINA,
You both are so creative. Just love the poems. I think we should continue this wonderful way to communicate. It gives our brains and souls to express our inter beings in a special way. Our own voice could not say it better. The joy and laughter it gives me sure lifted up my spirits. I have never been a "poem" person until now. Now I know why so many enjoy it, as it brings out something special in a special/personal format. It really touches reality in a different way. Sometimes it can be dark and other times can by silly. It is like a third person is talking and not myself. It allows me to say whatever is on my mind. I am going to put each of all our poems in a special folder to go back and read on occasions. Thank you both for such a uplift that I sure need at this time. My pain seems to increase to almost unbearable. Almost to the frantic stage. That is bad as I could do something really stupid. Stupid being take too much meds. I did that about a month ago and slept for 3 days. Looking forward to tomorrow as it will be much better..........it has to be better. Take care of your selfs and have a good evening and a wonderful tomorrow. love to all Cheryl |
Okay we really have to keep the side chat down below in the forum Mark, Cheryl cliick this thread it is for Cheryl i started....
http://neurotalk.psychcentral.com/thread125291.html This one needs to just have the important info and up dates sharing of ... as each goes threw the process. It wont be very helpful to others if this is 15 pages of poems and stuff with info mixed in it.. it is going to be hard to search threw and find the good info and that defeats the purpose :( . so use the link and keep side chat down below in the forum okay pals?? stories about getting or having a PNS/ NEUROSTIM are fine here in this stickie tho. Thanks . from mother hen and T-Rex :grouphug: PEACE BMW |
Yippee Cheryl has her approval and a Date for final implant surgery.
Monday Aug 5TH :highfive: :D Praying everything goes well and you are finally at a lower pain level. PEACE BMW |
Ahh and yes another date to keep in mind and please send prayers for this person for their trial surgery... keep them in your prayers for this to be helpful and that all goes well for them . May this be the answer for you to manage the horrible pain
July 26th You know who you are :hug: ...and you better believe the whole bunch of us have you in our prayers and are sending positive thoughts . :hug: I believe so much this is going to help you my friend . when it is all done maybe you will feel up to sharing . many many prayers ,positive energy and sunshine on you especially for July 26th . :hug: PEACE BMW edit to say... May God guide you and the doctors threw the trial surgery making every bit of it smooth and successful . |
Prayers for BMWs friend
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Well, BMW and T-Rex, it is humbling to be asked to pray for your friend who soon will undergo trial SCS and for their doctors as the process is brought to fruitition. Those prayers are now in place that care, healing, understanding, knowledge, protective auras surround the whole of BMWs friend and the team who treat this friend. God brings help into all of these situations as humankind in our efforts to benefit others reach out to do the best we might to give comfort to those in need. I, for one, am SO thankful for the inspiration given and acted upon through which the whole of the design, function, process, procedure, medical care, and healing oversight has come into being for so many like us who have suffered pain which is difficult to describe, and for some beyond belief. Hope now springs into the lives of so many affected with neuropathic pain. Isn't this so cool? Oh that we could lift up a shout of joy which could be heard by all who help us better manage pain. Gratitude overwhelms me. Time for a :yahoo::yahoo::yahoo: Praying for you, friend of BMW, :smileypray: Mark56 |
BMW, thank you so much! Guess I'll chime in....
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I've been a lurker for a while here, and Dear lovely BMW told me about this thread that she had going here on NT. I'm signed up for PNS on July 26. I have a mixture of excitement and trepidation, and am praying and hoping with all my might that things work out with this surgery. A little history...I began feeling pain somewhere back in 2007, the usual - thought is was a sinus infection / tooth sensitivity / eye condition until it broke through the NSAIDS that I was taking for it and went gangbusters. I had one neuro for about 6 months that tried to convince me that it was "psychogenic". I tried with all of my might to believe that, (with more than a little resentment of this guy for thinking that about me), but the pain was so rapidly escalating that I requested a second opinion, and got to another neuro, this one the Chief of Neurology at another hospital. He got me diagnosed through well-placed nerve blocks, then referred me for an MVD. We did the MVD in 2008, and, after miriad complications due to high CSF presssure, found that it gave mixed results. The sharp stabs were gone, but the &*%$# (:eek:) constant pain was still there. This was SO disheartening. I'm sure many of you have been down this road too. So we talked about the high CSF pressure, (referred to by my doctors as Intercranial Hypertension/Pseudotumor Cerebri) and decided to see if it may have been the THAT that was causing the pain. So I had a shunt placed on mid 2008. It's called a VP shunt, and it taked excess CSF away from my brain and delivers it to my abdomen, where my body reabsorbs it. This surgery should also have been simple, but I had a seizure and coded. My husband was there and had been about to leave to go to the bathroom when it happened. So he screamed for help and they got to me in time. The unfortunate outcome of all of this is that the pain was STILL there. So spring forward to today. I am still fighting the type 2 pain, and it is with me almost daily. Those days that it doesn't show up are like small gifts from heaven. I cherish them. Otherwise I am on that strange brew of antiseizure meds, antidepressants, and narcotics, just trying to make it through each day. In spite of all of this, which I know you all can identify with, I make it a point to count my blessings every day, and they are too many to count. I am lucky, all things considered. I have love, and a home, and enough $ for food and stuff, so, life is good. :) We are more than a little fearful of opening my brain up anymore, so we are VERY hopeful that the PNS will do the job. I have realistic expectations, however, and am aware of the limitations that it has. While I wish for the "magic bullet" someday, I know that it is not likely. So I will take what I can get in the meantime. Also, this is the first of my neurosurgeon's trigeminal stims. He has done others. like for ON, but not this one. I am very confident in his skills - he has helped many, many people through DBS and MCS, so he is highly skilled - but this will nonetheless be his first. I know that it has been a rocky road for me, but I do not hold him resposible for my unusual issues. I also have much arachnoid scarring in my brain, called Arachnoiditis, which also complicates it all. So I will take any and all prayers that you might have to get this done and have it done right. :D Like BMW says, PEACE, and love to everyone here. :grouphug: and Mark, thank you for your kind words and prayers :D I will keep you posted. Mylastnerve/Lily |
:hug: Lastnerve :) :hug:
Thank you so much for sharing .You are helping so many others God Bless you ALWAYS ! It sounds like you may have A.D (Anesthesia Dolorosa) :( I really think the trial with neuro stim / / PNS is going to help you be able to manage the ugly pain so much better then other things youve tried before . :smileypray::smileypray: Oh sister I was the first in USA to have PSN for my face pain (A.D.) HE NEVER DID THIS FOR any type of T.N. before either... I am so fine and able to manage my pain now. it saved my life. You have a fine Doc do not worry sister !! Just know all of us have been sending prayers and will continue to do just that. for you for the doctors for the success of PNS and the healing. you can count on that!!! http://i294.photobucket.com/albums/m...IC/18-Blue.gif http://i294.photobucket.com/albums/m...IC/prayers.jpg :grouphug: Thanks so much for chiming in !!!! keep us posted on how things are going and how your are doing . PEACE BMW P.S. thanks for the chat before :D. you are one cool cookie :cool: |
Prayer for success
Hi Lastnerve-
Thank you for joining this forum of deeply caring folks who come alongside to help with the pain and the flipping stomach jitters of awaiting surgical help. May your time between now and 26 July pass quickly and your preparations for the trial stim be flawless so all paperwork and clearances are in order well in advance of that date. Praying for time to pass and you stim trial to go oh so well, :smileypray: Mark56 :) |
Our Friend and Brother Mark
Our friend and brother Mark is having his stimulator final implant tomorrow morning. He is having it place in his back. He is part of our wonderful people with TN because he cares so much for those of us who have neuropathic pain. His situation is the same as ours, it is just in the back. He did very well during his trial and hoping and praying for better results after his surgery.
His wife, Cleo, is going to call me after the surgery and the results to let me know how Mark is doing. He has asked that I let all of you that have become friends of his to let you know how he is doing. AS soon as I hear from Cleo, I will post a message for you . His surgery starts at 8 am so, I will not hear from Cleo until sometime in the afternoon. If you do not know Mark ( Mark56) I suggest you send him a PM to say hello. He is a wonderful person to get to know. For those of you checking out our TN site, welcome and hope to hear all about you soon. Cheryl ( calewark) |
Mark Did Great
Just got the call from Cleo. She said that the surgeon just came out and said he did great. The surgery went very well. Cleo had not been able to go in to see him yet as they are getting him awake and talking. They thought he could go home at 3pm ( mst ) He is going to be in a lot of surgical pain, so he has to wait a couple of days to actually use the stimulator. The best news is that the surgery went very well, as we all know, it was a serious surgery when you start messing with the spinal cord.
I would imagine that he will be on the phone and writing to all of us by tomorrow. He needs to rest the rest of the day as he will be sore from just the surgery. Cleo said he will call me as soon as he is up to it, so I will pass on the wonderful news to all of you. Thank you all for all your prayers for Mark. Prayers do work and certainly did for Mark. Won't it be exciting when we hear from him and know that his pain is so much better? Thank you our heavenly Father for taking such good care of our loved one, Mark and his family. Will be writing soon ASAP Cheryl |
one small happy dance but when Mark gets on here :p muuhhhaaaaaa
:Dancing-Chilli: Get some rest Mark :hug: and let the healing begin as we Thank God and the Angels and our :smileypray: prayers:smileypray: continue . :grouphug: PEACE BMW |
Mark says hello
TO ALL OF MARK'S FRIENDS AND LOVED ONES,
Mark just called me to let me know that he is home, his daughter fixed a wonderful dinner for him and Cleo and the neighbors came over with dessert. He sounds very tired and in pain. They had to take some bone from his back to slip the paddle up his spine. Needless to say he is hurting; but doing well. In the recovery room he asked to get up to go to the bathroom and was able to walk like a champ. Then he asked if he could get up a little later and asked to walk again. The surgeon said that was a sign that he did really well; but most of all it showed them that he was determined to get going with his recovery. They were able to give him some more medication for the surgery pain so hopefully that will help. He sounded pretty weak and very tired. He was able to make phone calls to his family members and even was able to talk to his son. Which I am sure was such a blessing for both of them. He is so very thankful for all of your prayers and could feel them this morning as he entered the operating room. He had no jitters and came through like a champ that he is. He will not be able to try the stimulator for a couple of days. The surgery pain has to subside first. I know we are all anxious to share in his joy when he turns it on and will have no more pain. I will be calling him tomorrow and will post again to let you know how our dear friend is doing. Keep your candles lit and your prayers coming his way. The Lord is listening. I am certain that the Lord is telling Mark right now what a good job he did with an excellent attitude but more than that Mark was filled with faith in Him. Take care everyone. Will be in touch sometime in the afternoon. Hope all of you have a good day tomorrow and don't forget to thank God for being there for Mark. And.......don't forget to thank God for helping all of us during this time of our own pain. With Love ASAP Cheryl |
Last Nerve it is July 1st I am doing a count down to the 26th and sending prayers to you ..to God for / about you. I will chat at you later today after my dentist apt. thanks for the tips you gave me the other day my friend!! Hope you are having a low pain sunny day.:hug:
PEACE BMW...Tina ------------------- --------------------- ------------------ Quote:
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Happy to find this thread
I had a SCS permanently implanted on 6/14 for atpypical face pain. What a miracle. I have a pain treatment doctor who is so good at this procedure that he believed that he could get the leads up high enough in my spinal cord to give me relief in my face. He was so right!!
I am slowly working to reduce my meds so that I can find the balance between meds and stimulation. I look forward to a clear mind again. I had both a neurosurgeon and neurologist doubt that the SCS would be helpful for my face pain. They did not think that the leads could be placed high enough to provide relief. I am thankful for my blessings and hope that others with this horrible pain can find similar relief.:) |
Praise for your relief!
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Blessings on you,:grouphug: Mark56:) |
emsacco :D
I am so glad you found this thread too and even more happy you took the time to share but best and most important :) is that it is helping you manage the pain ! It seems that Colorado has a fair amount of great Doctors that are doing stim implants and having great many successful outcomes as of late. can I ask if you were awake at all during either your trail surgery and or your final implant surgery?? where is your battery placed?? is it rechargeable?? what type is it I have medtronics .. is it Boston scientific, St Jude ?? I so hope very badly that you come back and share a bit more.You will help so many others by sharing and I would be so grateful to you for adding and contributing to this thread. It would truly mean ALLOT... to me and to so many others . I pray you continue to gain control and manage the pain so you are able to lower the meds..and have your life back. I have So much Gratitude for you sharing and posting. Bless you life long! PEACE BMW & T-Rex (my Stim) |
Details of implant
I hope that I am able to provide hpoe to some others who may be considering this treatment. I am very fortunate to have liberal health insurance. My husband is a railroader and so we I got the approval for the trial and permanent in 3 days. I must remind myself that God was in control.
I have a Boston Scientific stim that is just below my waistline. It rechargeable. I was awake for the entire trial and until the leads were programmed in my spine during the permanent surgery. My recovery has been better than I had expected. In fact, the unknown about the recovery worried me more than the surgery. I was back to work within one week. Thanks for your encouragement. :D |
ems
Thanks for replying :cool: can I ask if you had any other surgey before the stim? and also would you share where your leads are ..mine is V-3 on my lower right. I have found so many that are afraid of this surgery as they have been threw MVD and / or gamma and so with those things in their past this fills them with worry and fear but in all reality this is really nothing.. not nearly as evasive or difficult as and MVD or gamma. the fact one can try it before they implant fully is a plus. you mentioned the worry of the unknown about the recovery... I have found that most others can hardly find info about this in general and so that is why I wanted to have a thread like this where info can be found... maybe you can share about recovery... what was the most painful area after surgery for you?? mine was where the battery was placed. it "bothered" me more then where the leads were. I had to wait 1 week before they turned it on ,did you have to wait?? how long?? I am sorry to hound you with a bunch of questions.. i know cus I have had mine since July of 2002..but for others the info and seeing what others have to say what others share is so very much needed and extremely helpful. God bless you for what your doing .I promise i wont bug ya with anymore questions ..we are so lucky and appreciate you sharing all that you have already . Thanks from the heart :hug: :grouphug: PEACE BMW...(Tina) .. and T-Rex |
SCS for face pain
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Please do not hesitate to ask any questions. I wish I could have found some of these answers before my procedures. Most of my research was based on those who had back, leg and arm issues. I did not have any surgeries prior to my stim implant. Since I have atypical face pain, surgery is not usually successful. They do not believe there is any physical reason for the pain. There is something in the brain that is miscommunicating and that is why anti-convulsant medications were helpful in reducing the pain -- but increasing the FOG!! I had several blocks to some nerves in my face and they did not help at all. I also had a radio frequency ablation (RF) to two nerves. The abalation to my mental nerve (near my lower lip) caused damage and much more pain. My leads were placed at C6-C7, however the Boston Scientific rep thinks that the doctor may have put them even higher up in my spine than the entry point. He says it is rare to get coverage in the face from the spine, but I am thankful to be getting it. My worst pain came from the incision where my battery was placed - just below my waistline. It took about two weeks for that pain to go away. I had to wear a cervical collar so that I would restrict my neck movements and help prevent the leads from movining. I still have some restrictions such as no lifting, pulling or pushing anything over 10 lbs for three months. I am also not be bend, twist or reach my hands over my head. I was able to use the stim immediately after my surgery, however I was told to concentrate on healing the first couple days and since I slept most of the time, I guess I was successful at that. The rep gave me one program in my remote at my surgery and just this past week during my follow up visit, I was given two additional programs and some more training how I can make my own adjustments. The program from the day of surgery seems to be the best. I could not have asked for a better surgery, recovery and result from this experience. I find that the positives of this treatment posted on the web are few and far between the negative. I am so glad to see you are trying to change that.:D |
Hi Terri.
I did notice you said you had radio frequency ablation that is like Gamma knife . but it probably wasnt done on your Trig nerve ?????? and too the leads do not seem to be to any of the 3 branches trig nerves and more to the base of brain/ upper spine area. It is great the doc got them up far enough. If you go back a few pages on page 2 ?? here Kim also had SCS but later had a PNS implanted to the Trig nerve and the SCS removed. she also has 2 stims one for each side of face for BI-Lat. I am enjoying the way everyone is sharing and giving such important info for others to find hope in... and power ..knowledge is power when researching the options one has available to them. I would like ANYONE who has had stim for face pain to share ... The fact is there are times when this dose not work and the ending isnt happy . that is true in life and with this option. what works for one may not work for the next. My friend Calewark is having hers done in Colorado too as did Mark. thats pretty awesome if ya ask me :D make sure you follow doc instructions on lifting and bending !!1 dont over due it and know we have you in our positive thoughts and prayers for the stim to be ever lasting way to manage your pain. Many many thanks for sharing and posting here. Terri you ROCK!!!!! PEACE Tina & T-Rex p.s. I wonder.. ask if having a stim was a first option for you? I ask because for most others this is a last option . but for me since MVD,gamma were not an option my last resort was having the Stim. being the first to try PNS. in the USA . I do want to say again that SCS and PNS are the same thing the only difference is the placement of the leads It is referred to a PNS because the leads are placed in the facial area not to the spinal area. they are both simulators that mix the pain signal . |
Atypical face pain diagnosis
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My official diagnosis is atypical face pain. This is defined as pain that does not have a physical reason -- ie., trig nerve damage, but instead is a nerve to the brain miscommunication. The pain is in the same area as pain for the trig. nerve, but my MRI's do not show any damage, and I have constant pain, instead of pain that is common with TN or ATN. Most of my pain is in my lower face and so my doctor was very hopeful that we could get coverage from placing the leads in my spine. Surgery is not a recommended option for atypical face pain since there is not a physical reason for the pain. I was given various blocks and injections before the stim. was considered. I think this is the protocol that was required for us to get insurance approval. I am thankful that I had a doctor that was willing to take a chance on this treatment. He appears to be in the minority!! An implant of a PNS is still a possibility if we find out that my pain relief is not enough when I try to reduce my medications. I am hopeful that the SCS will give adequate relief. Once my incision sights are healed, I doubt that I will even know that I have an implant except for the tingling in my face and the occasional need to charge the battery. Take care and have a great day!! Emelie:D |
Surgery date has been moved up
Hi friends,
I just wnat to let you know that my surgery date for the trial stimulator has been moved up to this Friday, July 16th! Short notice! My pre-surg is the day before, on the 15th. I am excited and nervous about this, and I pray that it works! So please, as you go about your lives this Friday, could you think a good thought or say a little prayer, for me and my neurosurgeon, as we both go into unexplored territory (it's his first Trigeminal stimulator - he has done many others). Thank you all for your kindness with me, a relatively new member. You have been great. :hug: I will post as soon as I can, probably on Saturday or Sunday. Mylastnerve / Lily |
:D ha and there you were telling me I started the count down for the trial to soon :p
:yahoo: This is some awesome news Lastnerve !!!:highfive: Oh sister you can count on MANY prayers good thoughts and well wishes from now until well after the final implant is done !! do not worry that it is the doc first stim for t.n. he has done many other stim implant to other areas of the body (back legs ..ect..) I think doing one for the back is much harder as they go to spine most times for the back. just let go and let God. I have such over whelming positive thoughts this is going to help you soooo much for the pain. I am going to do a happy dance cus I just cant help it :Dancing-Chilli::Dancing-Chilli: T-Rex wants to happy dance too http://i294.photobucket.com/albums/m...-rex-dance.gif I shall continue the count down..YES were are at .... 4 :smileypray:May God be with you providing comfort protection strength and make this trial surgery and the stim extremely successful at combating the pain you have been carrying and living with for so long.Thank You GOD.:smileypray: http://i294.photobucket.com/albums/m...untitled12.jpg PEACE BMW...Tina p.s. :cool: this is such awesomely cool news :cool: remember email me with any worries questions or anything okay:hug: hugs sister!!!! |
We are at 3.. 3 days till trial :)
Yes I enjoyed being able to chat on phone with you yesterday . we will do again very soon. keep taking care of you my dear friend . Your doc sound fantastic and I know your in great hands lily . really neat we are around same age :cool:. Sending positive energy and good thoughts to you. :hug: PEACE BMW 3 and counting :D names hummm I will think on that ;) |
Prayer for surgery
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God will be WITH YOU ALL
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The evening before the Permanent Implant, for some reason, I felt an overawing sense of "WHY AM I DOING THIS???? WHAT IF I CAN"T STAND HAVING THAT FOREIGN STUFF WITHIN ME????" And then I settled down to pray, knowing also that others were praying alongside my family and me. A calm that sets aside ALL fear came over me that evening. Every fear was dashed. All thoughts of poor judgment were cast away. I became centered, focused, ready for the implant, knowing we all as a team had worked hard to arrive at the moment when I might taste of freedom from pain, and that it would not just be a week trial this time, but it would basically be forever. God led me into a place of peace, peace that overcomes all fear. The next morning, we gathered at the surgical center, and this CROWD of folks from our church came into my pre-op area and our pastor led us all in prayer. My surgeon was there. He was aware this was a procedure bathed in prayer. He was ready. And interestingly, by name, I recall the entire team of medical professionals who were there with us that morning. Spiritually, we were focused. Then, the capper came along, my anesthesiologist, came to brief Cleo and me, while the whole prayer crowd was still with us. It turned out our anesthesiologist's name was Hope. HOPE!! Do you get it? This is exactly what we have been feeling ever since the Trial, that there was HOPE for our lives now. Oh God, I had confessed many times the desire to end my life due to pain, and there He was again, holding out the hand of one who would have my life in her hands, and her name was Hope!!! So, LastNerve, this is what I pray for you and will pray throughout your surgery, that all of you, inclusive of your medical team are bathed in God's presence and that through the procedure you will emerge filled with HOPE!! :smileypray: Since my permanent implant, two weeks ago today, I have been ready for Hope to shine forth in my life. Last Friday we first calibrated my little implanted computer, the group here helped me select the name of PJ [meaning Praise Jesus] for the little guy. I MUST tell you and all since we first turned on the implant in my body I HAVE FELT NO NERVE PAIN AT ALL. None. Zero. Zip. Hope has been shining through my eyes ever since.:yahoo::yahoo::yahoo: I meet people on an errand while I am out for a little bit [still recuperating you know] and they say "Mark!! You're back!! I can see it in your eyes that you are smiling from within." You see, those folks have been alongside during these years of relentless pain and suffered with me, seeing in my eyes despite my attempted smiles that I was crushed with pain inside. Now they see me FREE! I have gone outside and shouted "Thank GOD I am FREE!":yahoo: Sure, I am still on the pain meds which brought me to this point, and we have to strive to remove them from my life, but I have HOPE I can live free without them. You, too, LastNerve have the opportunity to feel and claim HOPE. I guess this is why I have gone a bit too long with this post. I just Hope and Pray for you this is your result as well. Rest well my friend, HOPE is on the way,:circlelove: Praying for you,:smileypray: Mark56 PJ :):grouphug: |
awwww....thanks
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I will also choose to enter the OR in a state of peace and acceptance, and let my masterful NS do his gifted work. He and I make a good team, and we get along very well. He is a great person, who, in the midst of fighting lymphoma, has used his experience as a patient to learn how to be a great doctor, and who uses his vacation time to fly halfway around the world to rural countries to teach his vocation to others. I'm a lucky patient. ( :wink: and he's a lucky doctor to have me as his guinea pig! :wink: ) Thank you again for all that you have said and inspired in me - you have a gift in helping others with your words, Mark, as do you, emsacco, and, of course, you, our beloved BMW. Hugs to you all, :hug: Mylastnerve / Lily |
Hello Lily
Hi Lily,
My name is Cheryl. If you would go to the top of this thread, you will read my story. Tina ( BMW) started the thread for me. It starts kind of backwards; but you will read what I went through since last year. Tomorrow morning I will write to you again; but would like you to read my story first so I do not have to bore you with the story too many times. I think you will find it very encouraging. The trail was so easy. In fact, 2 hours after the surgery, I went to the movies with my son and grandkids. Day surgery, non, invasive, etc. You will find it is very easy. But please read the journey and the journal from the beginning with me and then we can talk. I get my permanent implant on Aug 5th. So very happy. If you would like to send me an email please do. It is calewark@me.com. and my phone number is 303-722-1307. I would love to help in anyway I can. Cheryl ps. do not laugh at my terrible pictures!!! |
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Nice to meet you! I did read your story. I get the eye pain too - it is so aggravating! I understand that you are still battling your pain, until they put the final implant in you - I'm so sorry to hear that! I am glad that the day is getting ever closer, so that you can get some sweet relief! Thank you for posting the pictures - they are not embarrassing, they are helpful! To those of us who are getting one, they are really helpful! You all have given me hope that this may actually work. If I need some advice, I just might take you up on the phone call - I have so much to do before Friday - half my day tomorrow is all pre-surg stuff. They are admitting me just long enough to park me somewhere until they can come in and show me how it works. Thanks again for your friendly greeting! I feel like I am making many new friends :) Mylastnerve / Lily |
okay tomorrow makes one day before the trial. also it is your pre op apt... so sister ya better get a good meal and good night of rest. and YES YOU WILL be back home Friday night!! things to help ease after surgery like we spoke of sleep in more up right position so as not to roll around ..less chance of tug on wires. dont do lots of cleaning or garden stuff dusting or anything that may dirty the area where the leads will be keep chance of infection down...No washing hair keep area dry and covered..and take it easy bending and twisting .dont rub or pick at area of incisions... and FOLLOW doctors and reps instruction. eat healthy get your rest and take your meds/vitamins if you normally take any vit C and B cant hurt.
No You CANT wash your hair be a big girl and just suck it up okay !! its not forever after this is all done you can go to salon and treat yourself. sending positive energy and all the best of the best for you on tomorrows apt and for Friday . I know ya just want Fri to be over with your so close now .ALL of us are cheering you on and rooting for this to be very very successful. night. I will be in touch soon :) PEACE BMW p.s. a Bestie name humm like Bruno or Spike ha this will be fun...I like those kinds of names hence T-REX :D |
ONE
We are about to have ignition . The day is about to arrive . Dont not worry if it takes you a day to feel the affects. everyone is different some feel the relief right away as soon as its on and others it takes a day or 2 . It is okay if your not all positive as I know all you have been threw :hug: so dang much but do not let negative wash over you okay just be in a holding attitude ..cus We have hope for you We have positive thoughts and We are here for you cheering you on. Oh such Hope and a great feeling this is going to help lessen some of your pain. I am/ we are sending out tons of positive thoughts to/ for you.. I am praying in my own way to the higher powers that be . May your surgery... (funny to call it that coz the trial its more like a procedure then a surgery) May your surgery go smoothly tomorrow and the trail of PNS be very very successful resulting in approval for a successful final implant and everlasting stim power to manage the pain and have your life back. Lastnerve/Lily... I mean hope and wish this from my heart and soul :hug: when you feel up to it you know I am going to be wanting waiting to hear from you so maybe on Sunday sometime you email me and I could post a short update if you want if you feel up to a short message to me . I would call but I think early next week would be better for that..as I want you to take things easy !! Rest and recoup the first couple days. Mmkay . I will be thinking of you allll day tomorrow with the best of thoughts ,blessings and good things being sent for and to you. I am crawling in your bag right now ..I am going to be there with you tomorrow right there next to you..in spirit ..in thought :hug: right there with you . PEACE BMW & T-Rex |
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The rep will be there - they are using a Boston Scientific unit. My NS is happy to give me his number, teehee. He's got enough on his plate. So I guess I am ready to roll, with you all by my side. Let's hope this durned thing works! MLN/Lily |
Boston Scientific!
Last Nerve/Lily!! We are going to be cousins? Boston Sci, so cool!!:yahoo: I am so happy with my unit, now a week into use of the programs. How could I be any happier with this stim which has removed my nerve pain? I am so THRILLED for your rapidly approaching Trial!!:yahoo:
Tonight, and tomorrow I pray that your Trial be properly commenced, that no infection be anywhere near, that all whose work is your safety and health be rested and ready to do your serious work well and appropriately, that your Trial have all of the best attention so your work to try this device so new to your body and to your pain situation will be without any difficulty so you may know FOR SURE the stim is the solution you sought. OH how I pray that your Trial give you sure, certain, immediate RELIEF from your prison of pain as it gave me last May on the OR table the MOMENT the electrical charges first touched my nerves!! Praying for you my friend,:smileypray: All of the VERY BEST,:Dancing-Chilli::Dancing-Chilli: Rest well,:Zzzz::winky: Mark56 PJ :) |
:hug: Lily :hug:....Many positive things to you..as we taxi down the runway... we are with you as are our best wishes and prayers.
WE HAVE TONS OF HOPE THAT THIS IS GOING TO HELP !!!!!! :grouphug: |
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hang in there girl. You will love the stimulator like i did. Just be careful when brushing your hair. Those leads look like tiny pieces of hair and that can hurt. That is about the worst pain you will feel in the whole process. Good luck and we will be waiting for your post when you get home. Cheryl |
Back from surgery!
Hi Everyone,
Thank you for the prayers and well wishes! I can tell that there are still some drugs coursing through me - my typing is a mess! Well, I just had the thing on for a little while, but it was feeling like bee stings, and I was getting nauseous, so I turned it off. Maybe a bit too soon to try it yet. I just talked to BMW (god bless you, sweetheart!), and she confirmed that it might be too soon - kinda like poking a needle in an open cut, so I turned it off for now. The surgery was kinda strange, they woke me up half way through, and I was still drugged, and they asked me to describe things, and he wouldn't let me use my hands to point, so it was so hard to explain! The first try on the cheek was a bit too high, so they put me back under and repositioned it lower. It had made my eyelids spasm shut. So now I am taking a break and writing this. Gotta rest and let myself heal. BTW, he told me that he wouldn't shave my hair, but sure enough, he plowed a trail up over my ear, the %&*$#! (Just joking, of course I love my NS - who pursues a course of successful treatment as doggedly as I do). I promise to keep updating as things go. Thank you again for all of the well-wishes - you all are so special to me! Mylstnerve/Lily |
Glad you are BACK Lily
Hi Lily- So glad you are back from the surgery, even though it seemed strange and they shaved some of your hair! Wow! Sorry they had to do that. Yes, it is strange being awake in the OR and having them manipulate things inside you to ask "So darlin', how is that??" I admit being unready for the poke I felt as they inserted the needles for the Trial leads to pass, and I jerked on the table in the OR! Unpleasant for sure!
One thing of which I want to remind you as you begin to experiment with your Boston Sci remote is that once you establish a connection by holding down on the P button, you should be in your base program which in the OR your rep will have set up as the program you told them you wanted to have for starters. The programs are identified numerically, whether 1, 2,3, or 4. I was told they generally give four programs to the patient for this Trial experimentation week depending upon your responses in the OR. Your electric signal range should be set to the low side as you access a program. If you are experiencing the "Bee Sting" phenomenon, then you may be receiving TOO MUCH charge. Using the Down Arrow, you can click your signal to a lower and lower setting, all of the way to the minimum if you want to give that a try when you are ready. You may be one who requires less of a charge to thwart your pain signals from the nerves. Going low, very low, and working up with the Up Arrow, you may learn exactly where your tolerance lies. This Trial week is all about experimenting, logging your results, and learning whether the stim device is a means and the proper means to better manage your pain. It is definitely not intended to heighten your pain experience. Definitely not. I write about these thoughts since both being Boston Sci recipients, we should each be looking at the same remote control device. Hopefully, these thoughts may be of benefit once you begin again to experiment with your stim unit. Best of luck! My hopes and prayers are definitely with you Lily, Here if you need me for anything, anything at all, Mark56 PJ :) |
ahh things sound good, normal .do like we spoke of and write down everything... the bee sting feeling ,the nauseous. any worries concerns everything and bring the list with you tomorrow when you meet with the rep. be as detailed as you can possibly be. He will be tweaking/ playing with the programs and will be able to lower or higher the stimulation to the different leads to make it "work" better / make the stim more in tune with your pains.
yes being that you just had leads stuck into your face you need to let the face calm down a bit as it is like having a cut and something poking at it so let it calm down ... try it again later tonight play with the settings a little bit and write down what you feel as you do that. If your eye lids spasm you feel nauseous etc This is very very important you need to do this so the rep can tweak/ work with the perimeters of the stim and hone in on the settings . the good thing is you can feel it and thats a very good sign that everything is leading in the right direction (pun intended :) ). once the rep works with you and tweaking the stim a bit more ahh sister I can almost bet in a few days you will be happy you are trying this! now get off the comp and rest ... BTW your hub sounds like such a angel !! you are more then lucky to have him ! I did not want him to bother you I just wanted to ask how you were but then you took the phone lol. but now my dear... eat rest a bit and turn it on in a little while just for a few mins play with it and WRITE DOWN how it feels describe it as best you can for each area. this is very very important okay lily:hug: Your doing just great :)!! healing hugs , positive energy and successful ending with this trail for you!!! PEACE BMW |
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