I have T1/T2 Bi-Lateral Zone 1 and 2 for the last 2 1/2 years. I have been on Tegretol and Gabbapentin and various other drugs without being able to control the daily pain completely, and they still make me just a little bit stupid. Needless to say, I have zero quality of life due to all the meds and the remaining pain.
My 10 day trial of the spinal/facial stimulator by Boston Scientific was a success. I was so happy I could cry, but most of me was afraid to be excited. The staff and doctors at Kaiser Redwood City have been amazing. They have never given up! Never Surrendered!
On Friday I had my permanent device implanted, and my surgical areas are healing well. The people at Boston Scientific were wonderful, but most of all I want to brag about my doctor, Dr.Sedrak.
I was told (by another doctor) that I didn’t qualify for an MVD because I had type 2 symptoms and there were no veins compressed on the scan. Dr.Sedrak never gave up and offered this wonderful device that worked wonders in the trial.
Then, before surgery, he worked extra hard to save my hair. He only shaved some in the front, and a minimal amount on the side. I would have sacrificed it all, but he knew how sad it would have made me, so he tried extra hard. Now, Boston Scientific will suggest this haircut for other women to help them save their hair as well.
I haven’t used the device as much as I would like as I am healing from surgery, but that is normal.
For people who can choose Obama care in Northern California and can choose Kaiser, or for people who have that option in Northern California, I highly suggest Dr. Sedrek in Redwood City. He is my hero.
I am so happy to hear this! I had a peripheral nerve stimulator implanted in August 2103 after MVD failed to relieve the burning boring pain.( it did relieve the shocks) mine is a St Jude device and I love it! No meds anymore, pain is totally controlled by the PNS.
I hope you find just as much relief as I do, and that you heal quickly from the procedure. Remember you may need reprogramming occasionally to get the best results from the stim.
BTW, I love how your surgeon was about the “haircut”! Mine was also very careful about how much hair he shaved. It seems like a small thing, but it made me very happy!
Best of luck to you
Christine
The hair does seem silly, but I’ve been sick for a long time so my shape is a little flabby, makeup is a hit and miss depending on my pain, and most of the time the meds make my speech a little slow as I try to pull the words put, so sometimes I feel as if my hair is all I have left. I actually cried when the doctor said he’d have to shave it. Silly, right? Lol
Hi, What is PNS? I'm new to this pain but it sounds like something I could love.How is it implanted? What do I have to tell my Doctor? Wow, if I can get one that works for me I could love anyone. Please pass on information if you would be so kind.
Congratulations to both of you! I had a MVD in October which has controlled the pain in my lower jaw, now the upper (or middle) trigeminal nerve is acting up, badly. There was only one compression visible on the MRI, but when they went in, they found multiple arterial compressions at the root of the nerve. I hope everything is just settling down. I am taking about a third of the meds I was on before surgery, so I’m functioning far better. I’m going to research the stimulator for future reference. Thanks for sharing!!
Mine isn’t a PENS but is called a Spinal Cord Stimulator. I think they are different. Both Medtronic and Boston Scientific makes them. Ask your neurologist about it. The great thing is that they can try it on you in a small implant for 10 days to determine effectiveness prior to a full implant.
Hi All, THank Stephanie for the fats reply. I'm contemplating MVD but I am really afraid to go with it. Due to my accident I've had a lot of surgury and as the old say ing gos sooner--or--later your gona get caught. If I can try this before they start cutting again just to see if it will do the job boy what a blessing that would be. How is it implanted can you share? Thanks again for the fast reply :))
I would like to know how you do with the PNS. I may have to get this but better than the constant pulling feeling in my top front gums and face that I have now. Thanks
A PNS unit consists of a battery, about the size of a credit card, connect to leads, or wires. In my case, the battery in in my chest, just under the skin, below my collarbone. I have two leads, running from the battery, up my neck. One goes in front of my ear, into my cheek, and the other is behind my ear, up past my temple and into my scalp.( I have all three branches affect by TN). I can control the amount and direction of current with a handheld wireless controller. The battery needs to be recharged, I do mine once a week, and it takes about an hour.
I am so happy to have been given this option by my NS. There are not many doctors using it for TN, as it is technically an off label use of a spinal cord stimulator, according to the FDA. I no longer take any of the mind numbing meds I was on, and have my life back!
Hi. My WiFi is jumping around… Thanks for info on PNS. I can’t get a Dr in Canada to do this. Dr Winfree in NYC agreed I need it but my Canadian insurance won’t pay without a Dr referral. They don’t like to send out of country. Rather have me suffer. Their solution is to put my daughter in foster care and leave me. She is 12 so she tells them “NO, leave me alone”. I need to find relief. I have daily panic attacks but don’t go to ER anymore… They don’t help. Better I just lay down. This was caused by dental abscess, as MRI, CT-scans, ultrasound good. I feel the nerve in my gum spinning around and pulling on my face. It throbs all day right where the abscess was. Dr Kaufman told me to not bother him, when I asked if he could help. Dr Honey wants me to get MCS; but then forgets about me, after paying myself for his consult…and that cost a lot. My gums by the old abscess feel like mush and I can barely brush my teeth. 2 years now.
Christine. I am so happy that yours yours is working! I have the two upper branches, so I have two leads each side, one orbital and one forehead. They grouped the leads together, run them down down my neck to my battery inside my chest. All of this surgically implanted. I feel like the bionic woman. I also have a remote, and it charges like a phone. My chest battery they said shouldn’t need to be charged more than once a week.
Question: when they first turned it on to manage the settings in the hospital, did it hurt?
Carey: I am so sorry for all your pain. I take Lorazapam when my pain amped up and by making me feel less anxious about the pain, I felt better. Just a thought.
I have been trying to have this stimulator implanted for years, but my dr tells me that it hasn't been approved by the FDA yet for TN. I have had the MVD surgery and have tried numerous other options and have still been suffering for over 8 years. I do not have Obama care, but do have good insurance. I Live in MA, but if I had to go to California or NY to have this done I would be there next week. I would beg my insurance to give me a referral, I am sure they are sick of paying for all the procedures and medications I am trying anyway. I would to have my life back. Wow What a New Year this could be. Please email me. Thanks
Hi, Hope I'm not being intrusive. I saw your reply and I saw you had the PNS and I'm wondering is it working for you? How do you charge the battery? Are there prongs sticking out through your skin? I am really interested in getting one but I haven't found anyone anyone in my area to do it yet. Is it covered by insurance? Thanks for any info you can give me.
Stephanie Rudin said:
Christine. I am so happy that yours yours is working! I have the two upper branches, so I have two leads each side, one orbital and one forehead. They grouped the leads together, run them down down my neck to my battery inside my chest. All of this surgically implanted. I feel like the bionic woman. I also have a remote, and it charges like a phone. My chest battery they said shouldn't need to be charged more than once a week.
Question: when they first turned it on to manage the settings in the hospital, did it hurt?
Carey: I am so sorry for all your pain. I take Lorazapam when my pain amped up and by making me feel less anxious about the pain, I felt better. Just a thought.
Stephanie, mine did not hurt when they first turned it on. The rep from St. Judes was in the recovery room to get me set up.
Wheelsforlegs, the battery is completely under the skin, nothing sticks out! The charger has a flat paddle that is placed over the battery to charge it.
Not all insurance companies will cover it. Some will after you appeal the initial denial,and some will really fight against it. Ther is a Facebook Group, Occipital and Peripheral Nerve Stimulation, where members have shared their experiences with insurance companies. This group was the best place for information when I was considering the PNS.
Thanks for the information! Mine isn’t turned on yet, even though it is set up. I’m on day 8 and I am feeling a little better from surgery,but still winded. How long was your recovery? I will look at the support group, thanks!
Its hard to say how long the recovery was. The main part of the recovery is the internal scar tissue that needs to build up around the leads and battery to keep them secure.You will need to be a bit cautious with how you move your neck for a few weeks, but you don’t want it to get stiff either. No lifting of anything heavier than 5 lbs for about two months. The incisions in my face and scalp healed very quickly, but the one on my chest, for the battery, took a bit longer. All in all, it probably took about 6 months to be completely recovered, but I was very functional within two weeks.
Just curious, but why wasn’t your stim turned on immediately following surgery, as mine was? I know other people waited a period of time before theirs was turned on, just not sure why.
Hi. Thanks for getting back to me. My stimulator was set up in the hospital, but I have complete on/off control via my remote control. I have chosen not to turn it back on and Boston Scientific has said that’s fine. When it was first turned on and set up in the hospital it was very painful, so I’m just waiting a bit.