Any information or experience about this? I am very desperate right now with extreme relapse of my TN1. found a few things about this on the Internet, but not a lot. I have an appointment in a month with an ophthalmic plastic surgeon, to see if this is something he does or would be helpful. From what I read it sounds like it can give you two or three months of relief. I am thinking I will likely be having a MVD at some point. Wondering if having this type of injection would affect the MVD?
Hi Katy,
I had botox done in March and it set me back extremely. Pain increased.
Hopefully it will work for you but that is my experience.
Good luck.
Jurie.
I RECEIVE BOTOX INJECTIONS FOR LEFT OVER NERVE PAIN FROM BELLS PALSY AND SHINGLES. WHICH I HAVE ON RIGHT SIDE OF FACE. THE ATN IS ON LEFT SIDE WHICH I HAVE A MOTOR CORTEX STMULATOR IMPLANT SOME 9 YEARS AGO. BEST TREATMENT I HAVE HAD FOR MY ATYPTICAL PAIN.
IS YOUR PAIN CLASSIC TN OR ATYPICAL TN? MAKES A HUGE DIFFERENCE WHAT TYPE OF TREATMENT YOU SHOULD HAVE.
THE BOTOX..IT HELPS WITH THE PAIN MORE AT SURFACE OF SKIN WHERE NERVE ENDINGS ARE BUT NOT THE DEEP SEEDED PAIN. MY PAIN DR SAID IF HE WOULD INJECT IT DEEPER IT WOULD MAKE MY FACE APPEAR AS I HAD A STROKE. SO NOT A PLAN FOR DEEP PAIN.
BUT THE NERVE BLOCKS HELP FOR A WHILE UP TO THREE WEEKS HAS BEEN MY EXPERIENCE. AT LEAST I GET A BREAK. AND YOU CAN HAVE THEM REPEATED.
MY DR IS DOING SMALL STIMULATOR IMPLANTS FOR TN AND HAS THREE WOMEN THAT HAVE GOTTEN RELIEF WITH THIS. IT IS THE SAME CONCEPT THAT THEY USE FOR PEOPLE WITH CHRONIC BACK PAIN. ON PLACES IT UP BY YOUR SPINE I THINK NEAR NECK FOR FACIAL PAIN. YOU WOULD HAVETO RESEARCH THIS SINCE I DONT KNOW MUCH ABOUT IT.
BLESSINGS FOR PAIN FREE DAYS FOR YOU!!!
Both of these should be ised as last resort options only. Both should only be used when the pain is localized in a small section of the face.
Nerve blocks have no guarentee in time. They could work for an hour or a month.
Botox is hit or miss. Sometimes it works,
Sometimes not. I have a friend it works well on. This is a fairly new treatment protocal and the success rates are not great.
Hi Kathy! I personally would never do the MVD. During my journey I have learned there are way more complications in the head than just TN. We have TN1, TN2, Occipital Neuralgia, Migraines, Face Pain, muscle strains and pains, jaw problems which all have the symptoms of TN. If your taking all those pills the Neuro's shell out like candy, stop. Your doses will just increase until your a zombie, addicted and have to get off them. The MVD is a "cover" they place over the nerve thats lost its natural cover; called a sheath.
Doctors assume TN is caused from the bloodvessel pumping against the Trigeminal Nerve. They think its been doing it so long the sheath has worn out. So there's Ur answer to why pills do not work. Fly through the pills to get to the surgeons. Its a prosess like everything else! Doctors move you up and out when you have allergies to pills such as hives, blacking out, throwing up. It actuallly tells you on the bottle to stop taking meds if certain issues happen.
The doctors you need are an ENT, jaw surgeon, pain manager, orthodontist, the best neck surgeon and a team of Neurologists. Make sure all these people are familiar with TN.
You will go through dozens of Neuros until you find the one that can help you. Find a team of Neuros, they are usually in the hospitals. My Neuro does Botox, he understands my problems and where the pain is. He does the best he can and it does help so much with head aches and face pain. Do not let them go deeper with the botox, you will look like you had a stroke. This is just part of the resolution, wont fix you. I had to hold my head up after a Botox session one time. Hold my head to brush my teeth, wash my face...etc..you dont want that and the more you get Botox the more your muscles learn to relax. Its a process.
The Trigeminal Nerve is a very strong verve and cannot be killed. Nerves grow back like our hair and finger nails.
TN1 is the easiest to figure out and handle because you probably have jaw issues, a bone spur in your nose or occipital neuralgia. If your scalp feels creepy, hair hurts, a breeze or blow dryer sets off pain and you get head aches ontop on your head, cannot tolerate light or sound, thats your occipital nerve. That nerve comes from your neck c1,c2 and possibly c3. There is a temporary block for this thats 24 hours, ask for it. If the block works, thats another piece to the puzzle and ask for radiofrequency for the occipital nerve. Then see the best neck surgeon you can find, your necks messed up and causing the nerves to inflame.
There are little things you can do to help. Feel your teeth for tooth pain, noises that set off your pain, different lights, reading talking, feel for shoulder pain. Take naps when you can. Ice wrapped around your head, popsicles. Find the things that set off your pain. Hope this helps!
why would you go see a plastic surgeon for eyes? If you have pain behind your eye its probably occipital neuragia, from your neck. I also do not understand a relapse of TN? It went away and now its back? Sounds more like neck or jaw problems to me. you could be cleanching your jaw and that causes pain like TN and also your neck. Hanging your head over the desk, cooking whatever can cause nerve pain and up it goes to your head.
Jane
Hi!
I have the stimulator. It helps with about 20% of the pain. I am constantly changing programs to maximize any relief. It was last resort for me. I am currently reviewing other ways to get relief from TN. I was always a person who smiled and laughed. I can't tell you the last time I smiled or laughed. But everyday, I keep the faith and spirit and keep on keeping on!! We must all be made of steel!!
julie said:
I RECEIVE BOTOX INJECTIONS FOR LEFT OVER NERVE PAIN FROM BELLS PALSY AND SHINGLES. WHICH I HAVE ON RIGHT SIDE OF FACE. THE ATN IS ON LEFT SIDE WHICH I HAVE A MOTOR CORTEX STMULATOR IMPLANT SOME 9 YEARS AGO. BEST TREATMENT I HAVE HAD FOR MY ATYPTICAL PAIN.
IS YOUR PAIN CLASSIC TN OR ATYPICAL TN? MAKES A HUGE DIFFERENCE WHAT TYPE OF TREATMENT YOU SHOULD HAVE.
THE BOTOX..IT HELPS WITH THE PAIN MORE AT SURFACE OF SKIN WHERE NERVE ENDINGS ARE BUT NOT THE DEEP SEEDED PAIN. MY PAIN DR SAID IF HE WOULD INJECT IT DEEPER IT WOULD MAKE MY FACE APPEAR AS I HAD A STROKE. SO NOT A PLAN FOR DEEP PAIN.
BUT THE NERVE BLOCKS HELP FOR A WHILE UP TO THREE WEEKS HAS BEEN MY EXPERIENCE. AT LEAST I GET A BREAK. AND YOU CAN HAVE THEM REPEATED.
MY DR IS DOING SMALL STIMULATOR IMPLANTS FOR TN AND HAS THREE WOMEN THAT HAVE GOTTEN RELIEF WITH THIS. IT IS THE SAME CONCEPT THAT THEY USE FOR PEOPLE WITH CHRONIC BACK PAIN. ON PLACES IT UP BY YOUR SPINE I THINK NEAR NECK FOR FACIAL PAIN. YOU WOULD HAVETO RESEARCH THIS SINCE I DONT KNOW MUCH ABOUT IT.
BLESSINGS FOR PAIN FREE DAYS FOR YOU!!!
Hi Kathy. I had MVD procedure done in January -- the Botox injections didn't work very well on me.... but everyone is different. Ideally you would discontinue the Botox treatments 6 months before surgery -- I believe surgeons request a minimum of 3 months off.
Botox injections takes 2 weeks to reach full potency and it is never a once size fits all, or even consistent results/relief from one set of injections to the next. I had good relief for about 3 months. Downhill after that I'mm afraid.
According to Striking Back, 75 percent of patients receiving botox injections benefited from at least a 50% reduction in pain level. The benefit was short-lasting, from 5 to 12 weeks. Since you have TN 1, you might be a candidate for a glycerol injection, which is administered through the cheek. I'm not familiar with kenalog. Regardless of the injection type you consider, your best bet for assessing risk or possible compromising of further treatments is a thorough discussion with your neurologist. Best of luck in finding an optimal treatment that meets your needs.