Has anyone had either one of these devises implanted to help control your pain? I have contacted Dr. Casey and one of these devices would be my only option at this point. Any input would be greatly appreciated. Thank you.
hi donna-- i am a new sufferer but have been researching a lot so i have as much info as possible--it helps relieve my anxiety about the future.. anyway i am not sure if PNS is the same thing(peripheral nerve stimulator) but it is a very promising treatment for all kinds of facial pain/cluster headaches/etc. here is a site i found about it http://www.columbianeurosurgery.org/specialties/peripheral-nerve/problems-and-treatments/peripheral-nerve-stimulation/
also there is a facebook page you can join and read ppls experiences--it is called
occipital and peripheral nerve stimulation you have to request to be a member b/c it is a closed group
sounds like you have been through a lot-- so sorry-- hopefully this procedure and end your pain once and for all!!
Hello Donna,
Just wanted to touch basis with you. I am having Deep Brain Stimulation Surgery October 30th. Do you move forward with either of the implants? Hope this message finds you well.
Jessica
Hello. I have not had either procedure. I am nervous about it. My mom has been really sick so I have put myself on the back burner also. Please keep me informed about how your procedure goes. I wish u the best of luck and will be thinking about you. I have so many questions for you. Can u explain a little about the procedure and what the docs expectations are for u?? What is ur recovery time? What is the percentage of success ur doc thinks? What all procedures have u had done and how long have u had TN? Thank u so much for the response!!
I started to notice my TN in 2009. I was diagnosed with a brain tumor on my brain stem in 2010 (found due to a car accident).i had not been diagnosed with TN yet. I also have a shunt due to increased intracranial pressure caused by the brain tumor. I have had multiple craniotomies, shunt placements and revisions plus 2 surgeries or procedures for the TN. I had one balloon compression (rhizotomy) it worked great but the pain returned in about 4 weeks. My NS suggested trying the balloon compression again. However, that surgery left me worse than before. My right side of my face is in constant pain, burning, crawling numb feeling. Even my tongue is partially numb and I lost the ability to taste on that side of my tongue. That surgery was in December 2012. So I have been diagnosed with Anesthesia Dolorosa or facial deafferntation. So that is what has lead me to research for the last 10 months. I tried to put the surgery off but my body is telling me now is the time.
As for the expectations. My NS is one of the few in the US who does DBS for facial pain. His thoughts for me is that I will be able to get more relief along with my medication. Even with medication I am at a constant 6-7 sometimes even an 8 on the 0-10 pain scale. That does not count during my flare Ups which we all know goes Beyond a 10. I am unable to tolerate most of the meds used to treat TN so the only medications I take are my cymbalta, OxyContin and Percocet. Best case would be that I would be able to decrease my pain meds but even if ithe stimulator will compliment my pain meds that would be a huge relief for me.
So this week is the week before my surgery and I had to have a MRI that was a little more in depth than a normal MRI and I completed my pre surgical testing. I am on Medicare since I am on disability due to my brain tumor complications. I was approved right away for the singer but was told that sometimes it’s an issue to get approved for facial pain right away. Also was told that I may need to complete a neuro-psych exam for approval.
The day before surgery I have to go to the hospital for outpatient placement of Faducials (smells screws/markers) and a specialized CT scan. I will go home with the screws in place and return in the morning for surgery. I will be awake for surgery as they need to be able to monitor something during the surgery. I hear I will be kept very comfortable and this sounds worse than it is. I will be in ICU for 24 hours and go home 1-2 days after surgery. This surgery is the first part or the trial for the stimulator. The wires will be externalized and I will have a head wrap for about 1-2 weeks. If it works and all goes well I will go back for a second surgery to internalize the wires and place the battery pack that will be placed in my chest. The second surgery is done on out patient. The recovery is about 6 weeks I believe.
This is all my understanding of what I have been told to this point. I will keep you updated after next Wednesday. Hope your Mother is feeling better and good luck to you as well.
I wish you all the best. I hope so much for you that the stimulator will work. I am in the same boat with the AD. I can’t eat on the left side of my mouth. I can’t feel anything on the left side of my face. I have a lot of spasms that are very painful on the left side of my face, nose, eye and temple. It is miserable. That might have to be my next step. My AD started after my second Cyberknife. Before that I had 2 MVDs.
I will be thinking about you and thank you so much for explaining all that you have had. Again, I wish you all the best and will add you to my prayers.
Donna,
I'm so sorry for all you've been through.
thanks for sharing about DBS. i'm considering Motor cortex stimulation which is similar.
did you have any trouble with medicare approving this surgery?
as you know , there's almost no info out there about DBS or MCS for TN from patient perspective. it's incredibly helpful to hear about yr experience.
the literature shows that outcomes are very promising. I wish you ALL the best!!
i'll be thinking positive thoughts.
Thank you Donna
I was lucky and had absolutely no problem getting Medicare to approve the surgery.
I to found very little info out there for DBS other than for movement disorders. That is why I am trying to put my experience out there 
thanks Jessica,
(and oops a called you by wrong name earlier)
glad to know you had no trouble with pre-authorization for surgery.