wanted to let everyone know I am starting to fall in love with my stim.

Tina, Mark and everyone else - thank you from the bottom of my heart for your well wishes and encouragement.

last nerve - have not really spoken with you, but you are in my thoughts. hope things are going well.

I am adjusting to the stim, starting to want to wash my hair and at moments the wires are worrisome, but nothing compared to dealing with pain.

I also wanted to let all of you know that reading these posts gave me the courage and initiative to try the stim. before reading all of these posts, I probably would have chosen a much more serious and dangerous surgery with a 10% chance of having worse long term pain, so thank you.

the stim is not a end all to pain, but it really does help. I have come to realize in the last few days that I have been chasing getting rid of the pain, but I now know that is just a pipedream. hard realization. the stimulator is giving me bittersweet happiness. it is hard to realize that being pain free is not going to happen and is a bit of a mental adjustment. when Italked to my husband about this a little while ago, he started to give me an optimistic pep talk about not giving up hope... I asked him to please stop, I appreciate his positive thoughts and need to be positive, but also honest about this. my pain is just going to be part of who I am and I need to face that. I am not saying I don't need to try to find the best way to deal with the pain and make it as low as possible, but I think it is here to stay.

I want to encourage any and everyone who is thinking about a stimulator implant to at least try it or do someseriousreading and thinking about it.

my temporarystim is for my occipital nerve pain. I had unbearable pain starting at my neck and running rams horn fashion along the side of my head and into my left eye. it was giving me unbearable eye pain/headaches thru my eye. they said it would be like a cluster headache or migraine. it made me sick to my stomach and if I wasn't throwing up, I was nauseous. since my temporary stim on Thursday, about 70 % of my pain is gone. I do have times where it is worse and I can sometimes feel a headache lurking on the outer edges, nut no more sickness. I had lost 25 pounds in the last 5 weeks because the pain was getting worse. not a great way to lose weight and I really didn't have It to lose. I now can eat and actually have an appetite.
Tina thanks for your call today. I feel we have much in common and look forward to getting to know you better.

lisa

Easygoing, I think that you hit the nail on the head, regarding the efficacy of the stim. I have been slowly ramping up to it - I was getting hot spots at the incision sites when I had it on, but that has slowly gone away.
I've had the opportunity to try it out on some pain, and was guardedly happy about the results - it definitely interrupted the pain signal. Then yesterday, I got walloped, so I turned the stim on, and it just hummed along underneath the pain and didn't help at all. I finally turned it off and medicated. Even the meds didn't stop the pain, in fact. I know that maybe I need to have it on full time, and will eventually work up to that. Perhaps that was a factor with yesterday's pain, since I didn't have it on.
So anyway, I have to say that I am having the exact same experience as you, Easygoing, trying to temper other people's hopes (and misconceptions). The pain will still be there. I just have one more tool, and I am starting to like mine too. It's nice to meet you, and to have another new stimmie on the forum here.
and Tina, Frankenb*** is feeling a little better, but I think that the healing will take some time. Poor thing. All staple-marked......You're so funny!
Hugs to you all, my stim family
Lily

Pain remains, but now there is that wondrous new tool to use alongside in pain management. In my case, PN, I use it all of the time...... 24/7, just turning it up and down according to my body's feeling and need. I do realize, courtesy of my friend Calewark especially, that TN and AD provide a much different pain picture. This is just what I have found works for me in the quest to rid myself of pain meds. So far, so good. Pain is up, signal up, going to sleep, signal down. That sort of litany.

Hope all of the best for you both LastNerve and Easygoing.... I surely do.
Mark56 PJ

Hi Everyone,
It has been awhile since I have posted and also reading your posts. Seems I have been busy with the last of the yard work for the season. I do find that keeping myself distracted as much as possible will help tolerate the pain. I am now almost 6 weeks out from my final placement of the stimulator. What I realized is that the stimulator is not the fix all that I had such high hopes for. Yes, it does help and yes, I would do it again. Working with the settings is a full time job lately. I have all 3 branches effected and so 3 leads, 3 settings. The programs that the rep set in the remote are not working well for me. I use the manual settings for the 3 areas. V1 being the least bothersome, and V3 the worst. My day seems to be consumed with up and down, up and down. The last week has been the most difficult so maybe that is why I am having the new problems. I wish I could say that I am pain free....but that is not realistic. AD is constant and permanent and very painful. With the medication and the stimulator together, I can function better. I tried to get off the medication and that was not realistic. My Doc did give me the correct information when he said that I will always take pain medication. I feel okay about this. Whatever it takes to help lessen the horrible burning constant pain daily. I do not mean to be negative, just saying it as it is. I would recommend the stimulator to anyone looking into it. It is another tool to help us live with this ongoing pain. You just have to realize that it is just that......another tool. I so hope all of you are doing ok. Especially those who are new to the stim. Take care of yourselves.
Cheryl ( calewark and busy bee )

Glad to hear from you, Cheryl, although the news doesn't sound the best. Can the rep tweak your unit to help better? We need to get together for Chili again.

Love,
Mark and Cleo

Hi Mark,
Chili sounds good. Ya, the news is not that good. I think that I was so very optimistic ( which I usually am ) that I honestly believed that it was going to be the cure all. Even though the Doc said that only 50% of folks get any relief and of those 50%, only 50% of the pain is relieved. I so wanted 100%. So, looking at those stats.....he was right. I do get relief and I get about 50%. With the meds, I do get more. How are you doing? You looked so good and happy when I saw you. Are you still on any meds?
My prayers are with all of you that are active in your process of the stimulator. It does work and a blessing since nothing else I found helped at all. You will have really good days and some days that are not as good. Sure beats being in constant pain all the time. Hang in there and keep your chins up and your head down!!

Cheryl

Nice to see a post from you Cheryl, I was wondering how you've been since the last post - it's great to hear that you are doing yardwork - that is a surefire trigger for me, so I am duly impressed!
Mark, thanks for the advice about the 24/7 coverage - I'm trying that now, let's see if it helps. I can see why you need to turn it down at night - it quickly becomes the only thing a person notices otherwise.
I have an appointment with my rep for next week, I can really tell the need for an adjustment - the leads are placed differently from the trial, (Why, I don't know ), the cheek lead is so low that it buzzes my teeth ), so I am using only two programs.
Nice to come here and talk to everyone. My biggest thanks!!
Lily

HI Cheryl- Chili's sounds good. I am so sad that your result is less than you had hoped. That is not good.

Weaned off of all pain management meds. How about that?
Mark56 PJ

hello Guys,

mark, how wonderful to have weaned off of all pain meds. that is my next big goal. I actually am going to cut my fentanyl patch starting today. I am working with my pain dr and she thinks it may be a little too soon, but said give it a try if I really want and take it slow. After fentanyl, I will work on the percocet.
Cheryl, I am so sorry that the stim is not taking away as much pain as you had hoped, but at least it is helping. I do know the feeling. I have been posting about my realization that it os not a cure all and ace been having a hard time that I am actually one of "those" chronic pain people. never thought I would be.

I had my temporary stim taken out Tuesday morning and my pain returned in full by Tuesday evening. I was in agony all night long Tuesday. When I went to Dr on Tuesday, they told me they were still waiting on final approval. I was scheduled for the final implant the next day Wednesday. they were doing everything they could. told me to keep my fingers crossed, hope for the best, show up at the hospital ready, but be prepared to go back home and wait and we would try again on Thursday. went in Wed morning and had not received final approval. Dr and hospital management decided that after reviewing my health insurance letters and forms, they felt they could go on and do the procedure without the final approval. they felt secure they would get approval and it was basically a formality.
they actually did the surgery on Wed morning and said they would take the risk. they did not want me to ace to wait any longer. can you believe that. I was stunned. I did not think there were any nice people left.
so, I had the stim implant done and left hospital we'd evening. The surgery was uneventful. had some trouble getting pain under control in recovery. Actually a lot of pain. They finally got it down alittle and I told them I was fine so I could get out of recovery on back to a normal room. they did realize I was having some trouble with pain and offered to keep me over night, but I wanted to just go home and get comfortable.
Friday, I decided to make the 10 hr trip back home in the car. Figured I could sit in car as well as on couch at cabin and I so wanted to be home in my own bed after almost 2 weeks. I made it and it sure does feel good. I didn't realize how much soreness and pain the surgery would cause. don't know why I didn't think about it, but it is getting better each day. I am just 3 days out and am going to try and just rest today. my husband thoughtI was just being a baby about my pain u till I took the bandages off this morning and we had a look and then he said oh, now I get it. he kept telling me to quit being a baby, it's not like you had another craniotomy or something. he has apologized for being so insensitive and I told him he can have a do over. I made him go play golf a little while ago. really wanted him out of the house and to have a little peace and quiet.
stim has been on since I left the hospital and seems to be working pretty well. I think mostly what I feel is surgical pain. I have not played with the programs yet, but I am going to today.
will keep updated. take care.
easygoing

Good to hear from you. Tina and I have been waiting to see how you did. So happy that the stim is working. How many leads do you have? I thought you had v1 and v2. The one that gives me the most problems is V3. It is a very difficult one to control. I have been much better the last couple of days. It must have been just one of those weird weeks when nothing was going to work. For the last 3 days I have been almost totally out of pain ( with the meds ). Sure hope is stays that way.
I bet you are so happy to be home. The cabin sounded great for the family....but your own bed will help to get you on the right track.Hang in there and get better everyday!!
Thinking of you,
Cheryl