Christine,Is your TN pain totally gone?Are you still taking meds?Does the pstim need adjusted or other maintenance?I wish i had done this instead of Gamma Knife.My GP told me about a pain clinic that offers it in Dallas and he said the doctor had 100% success with it.This was AFTER id done the Gamma.So happy it has helped you!Im not in pain now,but with a bit of tickling around my eye i feel like an anvil is hanging over my head in wait.It's so great to have another tool in the kit.
Christine said:
Hello all, The doctor who did both my MVDs and the PNS implant is Dr. Jeffrey Brown in New York. He is an excellent doctor, and his practice is focused on TN and ALL its treatments. He has encouraged me to share my experience with others, because he truly does want to help those that suffer with TN. I have two leads. One is along side the front of my ear, into my cheek, which manager the pain in my face, teeth, and nose. The second one runs up to my temple, and covers my upper face , forehead, and scalp. Theses connect to a battery that is in my chest, just below my collarbone. For those of you considering a PNS, the two companies I know of that manufacture them are Medtronics, and St. Jude Medical supply. If your doctor is not familiar with the PNS, you can call either of these companies, and they maybe able to put you in touch with a doctor who is. Please continue to ask me any questions you have. I am more than happy to answer! Best Christine
I have to have adjustments done regularly. The first 3 months after surgery were great but now I am in pain again. I am going to see my nuero surgeon in Jan. I do think its worth having. I know my pain would be worse without my stimulator
Amy,you're going to make it.Don't be scared even though ,yea it's scarey.Do you have meds you can take?If it gets too bad,go to the emergency room.When mine was at it's worse,i would just be in bed and as still as possible.Hang in there.D
Amy Mantrow said:
How do we keep moving forward when thepain doesnt let up,i dont know what to do,im scared. Doctor appointment on monday and tuesday
Don
The pain on my right is still there, but the PNS totally manages it. I am able to do things like touch my face, and brush my hair, without pain.With the controller, I have the ability to change the intensity of the current running to the leads, so if the pain gets stronger, I just turn up the stim.
Since my MVD on the left was a success ( so far, fingers crossed!) I have been able to stop taking Gabapentin. My pain is gone on the left.
As far as maintenance on the stim, there is not much at all. Once a week, I have to charge my internal battery. This is done with a cordless charger that is placed over the battery. Takes about an hour and a half. The battery should last at least ten years, and then it will have to be replaced. If at any time my pain is not being well managed, I can contact the manufacturers rep, and have the programming on the device changed. I have done this once so far since I got the stim in August.
Heather,
I was diagnosed with Chiari in 2003, and had my decompression surgery in May of that year. While it was successful at relieving most of my symptoms, immediately afterward I started having a feeling of pressure and pain in my upper right teeth. i now know that this was from TN. My neurosurgeon who did my MVDS, and the stimulator, is pretty sure my TN is caused by the Chiari. Since Chiari changes the position of the brain, it makes sense to me!
I chose MVD over any other procedure as it has the best success rate. I have heard that some other procedures, if done first, would not allow you to be a candidate for MVD, so that was a factor in my decision also. I traveled from GA to NY for my neurosurgeon, as he is a TN expert who has performed over 1000 MVDs. It is really important to seek out a doctor with lots of experience treating TN, as it can really effect the outcome of any procedures. FYI, the NS who diagnosed my Chiari, ( after six months of searching for a diagnosis) and performed the decompression, had no idea what was wrong with me when I went to him about the TN symptoms. Although he was fantastic for Chiari, he was not the right doctor for TN!
Best of luck to you!
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heather said:
Wow! This is the first time I’ve heard that someone else also suffers from both conditions…other than me!! I completely feel your pain and agony! I was diagnosed with chiari malformation in early 2011 and followed with decompression surgery in sept 2011. I was so hopeful that the surgery would ease the insane, very intense headaches and head pain, especially after having a very long 3 month recovery. Unfortunately, the decompression was not successful and ive still gone on with the pain…it didnt work. I had had major headaches for nearly 10 years prior and had tried a whole cocktail of meds, all of which were unsuccessful. I still suffer. Now, a couple months ago, I had my first TN attack. It was the moat incredible, intense, and unbearable pain I’ve ever felt!!! After nearly two days of almost constant pain and misery, I went to the ER where I was very lucky to get a doctor that immediately knew what the problem was and within 5 minutes he has IV’s in my arm and was pumping me full of pain meds, nausia meds and giving me nerve meds. I thought he was crazy at first…I couldnt understand how something like that could just suddenly attack…until he took the pain away! About 2 weeks after my first left side attack,my right side attacked. Talk about truly unbearable when both sides of my face are on fire and jolting me and having a chiari headache to top it off. For the first time in my entire 31 years, I truly had very dark and scary thoughts running thru my mind about how to end the pain. That scares me so bad! Now I’ve once again been trying another cocktail of meds trying to get this under control, with very little success. I have a 5 year old son and it breaks my heart when he has to see me suffer from these aweful attacks. He asked my mom if I was going to die. Ive been considering having gamme knife done now…but I worry that it will only be temporary, if anything. This option has never been expressed to me, but I most definitely WILL be discussing it with my doctor next tuesday at my follow up apt for any med changes and to discuss gamma. I will be praying for lasting relief for you. I truly KNOW your pain and wouldn’t wish it on anyone. Thank you for the new info…god bless!!
I think a PNS for facial pain is somewhat similar to a spinal cord stimulator for extremity pain. I had one for my cervical spine for 6 years, it was sort of a hit and miss because of scar tissue but overall it did help. Maybe 50%. I was unable to come off pain meds. I do want to try this PNS for my atypical TN and GN. Thank you Christine for the info on calling the manufacturers of these systems to find a doctor that implants them. Sharon
Thank you Christine and others for relating your experiences.You all have been a great source of information about the P stim for me and many more suffering people that find this site.As with all the treatments,it's not the silver bullet,but it is another arrow in the quiver.I'm still pain free after Gamma Knife,but with a very slight tickling sensation around the eye,i'm thinking TN may not be done with me as yet.D
There is a fabulous place to get questions answered by the experts ( the patients) on Facebook. The support group is called occipital and periphial nerve stimulation. Check it out. The patients answer your questions from experience like they do here on this site. Lots of information already discussed to read. PNS is my next direction. So I have been doing my homework. Tree
Don, it is “Occipital and Peripheral Nerve Stomulation”. It is a closed group but send the admin a message and you will be added. This was the best source of info for me while I was considering the PNS.
Christine, can you find a doctor that does this on this site? I am having a difficult time just finding a pain management doctor that implants a PNS system for ATN or TN. How do we find a doctor doing this? Thank you, Sharon
Christine said:
Don, it is "Occipital and Peripheral Nerve Stomulation". It is a closed group but send the admin a message and you will be added. This was the best source of info for me while I was considering the PNS.
Granny,
My doctor, Jeffrey Brown,in NY, is on the doctor tabs on this site. From what I have learned, he is one of the few doctors that is using this for TN. I have also learned that the neurosurgical practice at Emory Hospital in Atlanta does it.
You could also try contacting either ST. Jude’s medical supply, or Medtronics, manufacturers of the stims, to see if they can put you in touch with a doctor. My unit is made by St. Jude’s, and the rep in NY is working very closely with Dr. Brown to have this method available to more TN patients for pain management.
Best of luck!
Thank you Christine, I just googled St. Judes Medical for peripheral nerve stimulation for TN and found a site www.sjm.com that amazingly allows you to put your city, zip code and state in and wow, up pops a list of pain management doctors and neurosurgeons within a 100 mile radius that are implanting PNS systems. The next step is to call each individually and find out if they implant PNS for TN and ATN. Can't believe I found it! I tried Medronic but could not find a referral to doctors that implant their product. AGAIN, THE SITE IS www.sjm.com. Wish me luck! Sharon
The Cleveland Clinic is another option Dr. Machado is also listed in the doctors tab on this site. He will be doing my implant in January, but you would probably start with one of the "Pain Management" doctors.
Christine, I actually have an appointment on Jan. 10th with one of the neurosurgeons that does this. BUT....I am seeing him for severe nerve impingement lumbar spine-severe sciatica-failed back surgery and I herniated a disc in my thoracic spine. I am having a difficult time staying up on my legs plus this damdable face pain! I have to be able to walk again first. But I want one of these implants or a trial first for sure. Many say 50% relief, that is good enough for me!! Sharon