NeuroTalk Support Groups - Stimulation... PENS / SCS for face pain, AD , T.N.

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- - Stimulation... PENS / SCS for face pain, AD , T.N. (https://www.neurotalk.org/trigeminal-neuralgia/124048-stimulation-pens-scs-pain-ad.html)

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)

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

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

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Quote:

Originally Posted by Mylastnerve (Post 669461)

Hi all,
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

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!

Quote:

Originally Posted by emsacco (Post 671522)

Dear Emsacco- It is wonderful you found the T.N. Face Pain thread! You are right, so many folks are out there in need of help with such a debilitating horrific pain, and it seems you found the solution! BMW attests to its very great benefit in her life, and Calewark now awaits her 5 Aug implant date. There are many here who will benefit by your input and sharing as you progress. May your healing and goal for reduction of meds take you to the place you wish to be in pain management!!!

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