My story has happy ending since 2002
I have a SCS for face pain . A form of Trigeminal Neuralgia (T.N.) called Anesthesia Dolorosor A.D.
I believe I am the first in U.S.A. To “try” this and then have the full implant. I have had mine since July of 2002 and it saved my life . I do not have a rechargeable battery. My batter is like a pace maker battery. Kinda big I guess compared to some of my other T.N. Friends who have this stimulation implant. All of theirs are smaller and recharge . To T.N people the SCS is also called PENS .
My battery is placed under my left arm pit area along bra line. They were going to put it on upper chest but a history of breast cancer made the bra line under arm the safest just in case. My wires go across back , between my shoulder blades , (secured, and have tiny scare there) then up to neck/ back of lower head to lead (there even smaller scar secured ) then wire over to lower right jaw area about mid way ,
to lead . Do have a scar but they could not secure that lead and scar tissue has kept it from moving or sliding any more. It did slide a tiny bit because of lower jaw movement, chewing yawning sneezing ...You do not realize how much your lower jaw moves. really until it is wired shut for 16 weeks then again for 28 weeks. I have plates and screws on both sides of my lower jaw.
And that is really where my story begins. 6-8-99- last day of school for my 3ed grader...
I was on my way to pick up my daughter from last day of school and then go 2 blocks from school to end of year pool party for some of the kids. I had my baby with me she was 3 in the back seat buckled in her child booster chair. I too had seat belt on. Thank God.
I drove the 3 miles and came up to the street to turn where the school is.
There were cars stopped and x-ing guard out in middle of highway with stop sign held up. Moms and kids ,baby strollers x-ing the cross walk. Then I woke up in hosp 5 days later with jaw wired shut. I had been hit from behind by a semi trailer truck that was going 45 and had full load. My baby was okay she had a long lasting black eye. No other person in the other cars or any one in the street was seriously hurt. I took most of the force and my dodge ram truck was pancaked between the trailer truck and the other cars in front of me. I broke my lower jaw on each side. My knees were pinched by dash and steering wheel. SEAT BELTS saved my life and my 3 year olds life NO DOUBT!!
I will just concentrate on my face, jaw and the SCS...
Yes lower Jaw was broken on each side I was wired up like 3 days after accident but I do not remember cus I was out of it. The wires stayed on for 16 weeks and then taken off. I went for 3 months I could not bite or chew I could not close my mouth shut tight all . When I moved my lower jaw side ways a tiny bit it made a squeaky noise like a door that needs fixing. I went and had x-rays and my jaw was still broken , they went in shaved some bone away, put screws and plates in each side and I was wired up for 28 weeks. Then finally un wired BUT
They pain just never went away . My breath going over my lower lip would trigger the horrible pain my tongue touching my lip or gums teeth on right lower side triggered the pain... I was put on all different meds I am allergic to anti seizure medications . Tried Combos of medications till I would max out on the allowed limit dosages .. nothing worked .I became suicidal... very depressed. Scans showed my lower right nerve had been snapped and the plates/ screws are right next to that area.
I went to Shands Hosp. here in Floridia a few times for tests and seen by Doctors, Neuros there. I had 2 options left as the many medications did not work for my pain in my lower right face, lip jaw, inside of mouth. I could have a pain pump implanted in skull or I could be first to try a SCS for face pain. I tried morphine threw I.V. And that did not help or do anything really . So I decided it would be very stupid for me to have a pain pump and I wanted to try a SCS for my type of T.N.( a.d. ).
I wished so badly that I could find one other person who had this for face pain . I felt like a freak because when I would share I found I was alone and that no one no matter how hard I searched had tried or heard of SCS for T.N. Or face pain.
The Pain Doctor and Neuro that did my surgery had done many SCS implants for back leg hip … I took comfort in telling myself it cant be that much harder to do it for Trigeminal nerve of lower jaw.
I was pleased that I could “try” it before they did the full implant. I had tried a TENS for both my face pain and my knees . The TENS did not help either of those . But this SCS OMG
I had trail over a long weekend and felt instant relief !! I wanted them to implant it fully the every first day that is how much it helped to deal with the T.N pain monster. I could be allowed to let my tongue touch my lower lip I could chew and not have the flare ups cus the food is touching my gums . I could move my face and make a smile.
So I had the full implant in July of 2002. Since then I have been helping other people with T.N. Who are thinking about or are/have gotten SCS for their pain control .
It is not approved by the Gov for a treatment of face pain and is considered a last option only ..and I WANT TO CHANGE THAT!!!!!!! I have been sharing my story and helping as many face pain sufferers as I can find or in some cases that find me
.
My SCS DOSE NOT take away all my pain but it has knocked it down to about a 5 and I am able to control the monsters ugliness to a point I have my life back again and am VERY HAPPY with SCS it is a GOD SEND. And saved my life! I know of others with SCS for face pain ( T.N. And O.N. )and most are thankful and feel blessed to have it as a treatment for their pain . Most still are on meds as well as having the SCS to help the pain. I am helping 3 people at the moment in different stages of having SCS implant for T.N pain control.
I really wish it was more availability as option as easy as medications are … or along with medication
and not as a last option after you and your body have been on every med in the books. .
I HOPE so much my story can help one person … that will make me happy. Not all the ending are bad and I will try to get some of my T.N. Contacts to post about their SCS . Or ask if if they mind if I share a link to their SCS story.
It feels kinda odd as most of the posters have it for back , legs I am used to talking with face pain people about SCS .... I hope someone understand my story and T.N.
Feel free to ask questions please post, reply or contact me if I can be of help for anything.
LOW PAIN to the room and readers .
PEACE
BMW