Hi Meeshacat-welcome so happy you found this site, it was a God send for me, I am 4 weeks post op with my PNS couldnt have made it without BMW burntmarshmellow (Tina)'s
help. Feel free to ask a million questions (I think I had at least 2 million questions)I look forward to helping in anyway I can!
Kathy

Feel free to email me at citytrustinc@aol.com Burntmarshmellow has had a flu bug past few days so she may not see your post right away but feel free to contact me and post any questions you have.

yes it has been a long sickly week and I still have the ick bug plus now its going threw my house
Welcome meeshacat. what a nice sis you are to be there for your sister
You should be very hopeful and just be patient .. patient with healing time and also with learning the programs and working with the rep. do you know what type of stim she will have? is it StJude,Boston sci. , biotronics,medtronic... ? what area of face ?? how many leads?
the best way to make things comfortable is to be there... go with her to the surgeries . most important to hear what the doc and rep says after as your sis will not likely take it all in or remember what is said post op. on the care and also the program and working the stim. be there for a day or 2 after to help out.
I would love to help anyway I can so please keep posting here and feel free to email me too check your profile messages for my addy
please mention PNS in the title. I am off now for some rest with my box of tissues and meds. I look forwards to hearing from you or your sis and hopefully I /we can help you both in some way. NO question is ever a stupid question so ask everything and anything. sending positive energy and blessings to you your sis and your family. what state is the surgery ?? just curious. sorry for all my questions.
PEACE
BMW

I am scheduled for this, the trial goes in on the 19th and the permanent on the 26th. I do have some advise. first it is still considered experimental but my MD says it should be approved by FDA this year for TN patients. Second, I know it sounds unrealistic but right now there are only a few hospitals and even fewer MD's that have done these, go to someone who has done it before, don't be your MD's guinea pig. I'm going to Cleveland Clinic, no I don't live in Cleveland or Ohio. I'm making the sacrifice, asking for help from family for mileage and hotel rooms. This is the guy who invented using it for TN, he's done a bunch. Third, if you go to someone like this less insurance fight. I saw him in November right after I left a weeks stay in the hospital for trying to control the pain from a flare up. He said, we will be doing this in January, I thought he was crazy, we are doing it in January. He had no doubt of the approval. On top of that I have medicare, no easy company to get approvals from. So do your homework, he said Colorado (I don't know exactly where), some in Chicago and Cleveland. That's it. Clearly other MD's are trying this even pain management Doc's are attempting to do them but be careful, you want the best outcome you can get....for your own health.
As for candidates, not every TN patient is going to be a good candidate. I had an MVD and an RF (radiofrequency rhizodomy) so most of the nerves in my face were burnt off in that. It helped but not enough, I still have one major nerve that was not killed off and have been battling the side effects from that for almost a decade. So if you get hit in lots of places when that "lightening bolt" slams you, this may not be the procedure for you. If you can narrow the pain down to one or two places you might be able to look at this (with FDA approval) sometime this year. I will be getting a rechargeable battery, can't wait to **** off TSA people at the airports! Once or twice a week you have to lay down and put the charger over your collarbone where the battery is placed underneath and let it charge up. No big deal.
As well, I don't understand why MD's are allowing people to do a Motor Cortex without attempting this unless it's because they want to start doing them. Surgeons want to do surgery and that sounds like a very cutting edge type to be doing. They are people too. Again, if you are looking at that type of procedure don't be a guinea pig!!! Go somewhere that does these on a regular basis. I think MCS offers TN patients something beyond an MVD which is still a good procedure but not for everyone.
I think this really opens up another option especially for MS patients with TN. We will have to wait and see.
So if you have any questions now that I can help answer, contact me. If not I will let you know the outcome in mid Feb, after I have had time to get adjusted to it. I have great confidence in the MD and that I am a good candidate for this, I'm not expecting miracles, just being positive. If I'm on the low side at 50% pain reduction I will be thrilled that's 50% less medication. If I get a better outcome it's just gravy...wish me luck. Beth

Hi Beth Glad you made your way and posted here . I agree there are states with better hosptials and docs that are known for this type of surgery. Colorado, Cal, Chicago, Cleveland , seems like sesame street ..brought to you by the letter the C . lol I think MD do motor cortex as it is recognized by the t.n.a. for option. UNLIKE this much more easy less evasive surgery. but PNS is getting there and it is much more heard of now then back when I had mine. Still not approved by the gov but you mentioned maybe this year.
kinda on a different page as far as being a lab rat and being the first one a doc dose a PNS surgery. I think as long as the MD has good history , and success of spine cord implants and knowledge of the Trig nerve ... go for it I will be there with you cus I was a lab rat and the first person for my MD to do PNS surgery and one of first in the USA. I think we ALL are lab rats. the more of us that can get marked relief and control over this the better.
Beth I am guessing St Jude if your going to Cleveland?? Do you have MS? I without a doubt am sending luck my prayers and wishes for you and this surgery the trail and final to be successful. I am in your corner all the way! I hope you keep us posted and let us know how you are .I / we are here for you for anything dont forget that !!Thanks for sharing . blessings to you and yours.
PEACE
BMW

Thanks for posting Beth wishing you good luck I traveled as well, and am 5 weeks postop with my St Jude Stim- keep us updated and will be praying for you!

Kwebster thinking of you and praying the apt goes well and the adjustments are long lasting... let me know how things go by email kkk
PEACE
BMW

I just want to say how angry I get when doing this thread here how much or maybe I should say how many, how often us T.N patents and also ones on this PNS thread are ill treated by by rude inconsiderate doc nurses receptionists etc... I know it is not a stranger to anyone who has to go to a doc or have surgery ..of any type. So that said and lived and being there as others are dealing with that. When it is you.. Please put your warrior on and nag call text ..be your own advocate. some people are just natural trying to please, help and be flexible with others and some afraid to rock the boat for fear the doc ,nurse recpt.. will make things "harder" . most of us just want to be understood how the pain is how it feels controls and enslaves us . wont drag on to long here but I want to tell anyone ,everyone that when you are dealing with this and knocked down rest regroup and fight back .. . For You there is no better reason in the whole world to turn into a yelling persistant cranky stubborn person . It never hurts I.m.h.o. to to turn into mega " B "when one is fighting to get relief from this ugly pain when one is fighting to keep living... that is the best reason to turn into a cranky nagging persistent ...WARRIOR .
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Beth We are keeping you in our prayers and thinking of you. You are having trial Next Thursday. I hope you will let us know how things go and let us know how you are. Sending you positive energy and blessings. May the trail prove to be extreamly helpful and lead to a smooth very successful final implant and a happy ending for pain relief and control
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Meshacat- How is your sister doing? I have email so may bug you for update or check as things get closer . are you going to be there when she has the trial surgery? sending blessings and prayers for you and your sister . May the next couple weeks pass quickly and your sister feel and be calm healthy safe and secure
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Kwebster your one heck of a warrior now get some much earned rest and eat some food!! I love you
PEACE
BMW

Hey All,
Starting to get a bit anxious now as I had a bad time with my RF and this is similar, that twilight sleep,,I was awake through most of my RF because my IV backed up and nobody noticed until my hand was huge. This is one of those twilight procedures and I can't seem to shake that feeling,,,just being silly.

No, I don't have MS but have worked with many TN patients that do, have been a support group leader for ever and just try to keep moving and not let this slow me down too much. I take massive doses of meds which would be really nice to cut back on, I already have osteoporosis from high med use and even if I get 50% pain reduction that's a miracle, I can't even put my brain around it.

Did anyone have stitches after the permanent procedure? I have been so shocked that this is really happening that I forgot to ask,,I'll call the nurse on Monday, they have all been so nice and helpful it has made this so much easier on me.

I will be getting three leads, this guy likes to make sure he's got it covered! And all he has really advised is to not over due after the surgery until they leads have a chance to scar over which helps hold them in place.

I think you are right in some ways we are all guinea pigs, they just don't know enough about this disorder and until they really spend the bucks and do the research we are at the mercy of arrogant MD's who think they know more about our pain and what we are going through,,it's that simple. Although after doing some research there was an article in Technology Review ,,,,something like that and in another year the leads they will be using for this procedure will be so tiny,,it's amazing what they are doing in Biomedical Engineering,,by the time my battery runs out and needs replacing the system will be a dinosaur!!! but as long as it works,,I'm happy.

Will keep you posted as to my progress, my thanks to all who responded and my prayers to all those facing another day with this disorder.....God Bless hang in there, Beth

funny you mention bio med engineering that is what my girl is majoring in at Duke University. right now she is working in a lab with stem cells and stuff.
YES YOU DO have stitches after ...stitches and staples sometime. I had staples where they put the battery. under my left arm by bra line .
are you nervous about maybe being awake during part of the surgery? sometimes the do not bring you awake . it depends . I will be with you in spirit and in thought be there right next to you and I know you will be fine during twilight time
.. lol your system will be a dinosaur like my T-REX lol I like you already Beth
I am praying that this will be so very beneficial and help with your pain that you are able to get off most of your meds and live and much more pain free and med free life!!
Hope you keep posting and that you know we care and are here for you for anything .
PEACE
BMW