Has anyone had any surgeries that have been successful?
HI,
I have only had Gamma Knife Radiological Surgery..or (GKRS). It only lasted for 3 yrs. And it was somewhat successful, as it took away the intense burning pain... I still had aching pain, but I didn't have to take a lot of meds during that time.
When it came back, the pain wasn't as bad... I am not a candidate for MVD, (Microvascular Decompression) , because I have Type 2,. So I just take meds.. However, my pain is controlled now. I am doing good.
Min
I was advised by very top notch specialists that surgery doesnt work for us the burning, pain 24/7 hours a day, when I was begging for help, I was referred to Chicago, Il Neurologist who implanted a St Jude PNS system in my lower 3 branch, i take no meds now except tylenol and besides needing the stimulator adjusted approx every 6 months, I am holding down 2 jobs and live an almost normal life, pain is still there but is bearable about a 3 to 5 instead of a pain level of a million feel free to friend me, and look at pics of surgery and after pics warm hugs your way
Sorry, my wife has had MVD, 3 radiofrequency treatments, and gamma knife along with using her face for a pin cushion. All to no avail. We are investigating Motor cortex stimulation but this is very tough to get through, may only last 5 years, and still somewhat experimental. The surgeon plants a sensor on your brain and runs a wire out to a tuner kinda like a pacemaker. You tune it for a while and then it is implanted under the skin. Like most surgeries for TN, they only work about 60% of the time.
My advice would be to try everything else first if you can stand the pain that long. There is acupucture, upper cervical chiro and other less invasive items (which we have tried to no avail).
I am really interested in this Perepheral nerve stimulaoer talked about here by someone else. It sounds less invasive although I guess you still have a wire sticking out of your head or neck.
Here is a new idea we are getting ready to try. The dentist will inject a loglasting (8 hours) anesthetic directly into the painful area. If the injection does stop or lessen the pain that would be good, but I guess a person could not get it (or want to) every day. Good luck
So gold to here you have improvement and are able to cope... Good luck and take care..
Min said:
HI,
I have only had Gamma Knife Radiological Surgery..or (GKRS). It only lasted for 3 yrs. And it was somewhat succesful, as it took away the intense burning pain... I still had aching pain, but I didn't have to take a lot of meds during that time.
When it came back, the pain wasn't as bad... I am not a candidate for MVD, (Microvascular Decompression) , because I have Type 2,. So I just take meds.. However, my pain is controlled now. I am doing good.
Min
Webster, could you enlighten me on the PNS. Is it brain surgery? Thanks...dc
kwebster said:
I was advised by very top notch specialists that surgery doesnt work for us the burning, pain 24/7 hours a day, when I was begging for help, I was referred to Chicago, Il Neurologist who implanted a St Jude PNS system in my lower 3 branch, i take no meds now except tylenol and besides needing the stimulator adjusted approx every 6 months, I am holding down 2 jobs and live an almost normal life, pain is still there but is bearable about a 3 to 5 instead of a pain level of a million feel free to friend me, and look at pics of surgery and after pics warm hugs your way
Thank you Grecio...@ Kwebster...My Neurosurgeon did inform me before he did the GKRS that he didn't feel good about the surgery. ...meaning it was a longshot... I was desperate...in a great deal of pain and begging him to do something. So, I don't think he really wanted to do it...and told me that it may not last...I told him even if it cut the pain in half...it would be worth it...
So he agreed to do it...
At this point, I don't know if the blood vessels will grow back...or if I will continue on this path of wellness. I choose to believe I will continue. Positive thinking can only be a good thing.. :)
I am glad your pain is bearable for you and the stimulator is working!!
Min
Min, Im with you I was begging and begging anyone to cut, tear, rip do anything to stop the pain, I can see where your surgeon would at least try to help you, I was on my knees in one surgeons office, I am so thankful they sent me on my way and I was lucky to be referred to a great Neurologist who believes the pain is unbearable and willing to try the PNS system, which is done outpatient surgery they put a trial in to make sure it works if it does then you get the system surgically put in out patient surgery as well Thank you for your response
I had to have a nerve block done before I could try the PNS system this made my pain horribly worse but I had to do it or insurance wouldnt apprve surgery, i also had lidocain injections didnt work for me but everyone is different I had a top top ENT at Loyola University Medical Center give me Lidocain nose spray, and that worked to get me through until my PNS was implanted so maybe the lidocane injections will work, hey I know we are all willing to do ANYTHING to stop the pain!
Grecio said:
Sorry, my wife has had MVD, 3 radiofrequency treatments, and gamma knife along with using her face for a pin cushion. All to no avail. We are investigating Motor cortex stimulation but this is very tough to get through, may only last 5 years, and still somewhat experimental. The surgeon plants a sensor on your brain and runs a wire out to a tuner kinda like a pacemaker. You tune it for a while and then it is implanted under the skin. Like most surgeries for TN, they only work about 60% of the time.
My advice would be to try everything else first if you can stand the pain that long. There is acupucture, upper cervical chiro and other less invasive items (which we have tried to no avail).
I am really interested in this Perepheral nerve stimulaoer talked about here by someone else. It sounds less invasive although I guess you still have a wire sticking out of your head or neck.
Here is a new idea we are getting ready to try. The dentist will inject a loglasting (8 hours) anesthetic directly into the painful area. If the injection does stop or lessen the pain that would be good, but I guess a person could not get it (or want to) every day. Good luck
I have a Peripherial Nerve Stimulator implanted as well. I had constant horrendous ATN pain, wasn’t a candidate for other surgeries because of the concern of surgical side-effects that would be worse than the ATN if that was possible. The other big issue is that with ATN surgeries that damage the nerve can lead to disastrous results as the nerve tries to regenerate itself. I was able to get a St Jude’s Stimulator implanted in my head( kind of behind your ear with wires and electrodes running under the tissue to the place on your face). It is run by a small controlling device (not attached) that you adjust according to the pain level. My pain is often at a 2 instead of a constant 10 to 24/7. The worst it gets is a 5 and the few times it has reached that level I can get it down relatively quickly with turning up the controls, heat, and Codeine. NO meds worked before and I had a serious life-threatening reaction to a whole group of anti-convulsants that almost took me out. It has been in a year and has made an incredible difference. I had long, vicious fights with the insurance over it but it has given me my life back. My ATN has continued to get worse, as I have learned it probably would (my Neuro concurs) but the hope is that the Stimulator will be able to handle worsening pain. I can’t imagine how I could continue to live with the pain I was in before. Hope this helps! Oh, btw the surgery is pretty easy, they do a trial first for the insurance and have to try a block for the same insurance reason. The block hurt like crap.
TL I messaged you- so glad to see you are doing well with your St Jude PNS hows your programming going?I am headed back to Chicago 2 months for programming so ready!
Kwebster Hi, I messaged you back but I’m doing very well – my programming has always been pretty easy, which has been good because I have had the same type of Rep that you have had! Luckily I only use 2 of the 8 programs and they work really well. I can work with these two and handle most of the pain and it’s variables it throws at me.I explained more in my message. Take care.
I am so glad the GKRS helped you Min.
Kwebster and TL - so ya'll are in Chicago? Is there any exposed wires or are they all implanted? That is so great that PNS is helping.
I had a metal fillling replaced in 2010 and as soon as the medication wore of my ear was killing me. The pain extends to all three regionals of the trigeminal nerve. I take 10 gabapentin and 3-12 excedrin a day. The neurosurgeon did not suggest the gamma knife. He did talk to me about a Balloon Rhizotomy. He told me though with ATN that only 5% of the patients are cured 100%, 50% can decrease pain meds, 5% got worse. Does anyone know about this? I am in Texas and need to find someone that I can trust.
Trshi- I traveled to Chicago for mine, after seeing many specialist who all told me no other surgery would help I was referred to Chicago for the PNS
Trashing, I somehow missed this question. Mine was done in Seattle, Washington. I would travel to the end of the earth to get it if I could guarantee the results I have from it. I turned off my Stim the other day for a couple of minutes, forgot about it, ran out the door, drove to work 1/2 mile away. By then, 15 minutes later, the pain was up to 10 or better. I grabbed my control, turned it on, the pain came down to a “live-able” level 50 seconds later (my colleague who saw me crying and grimacing in pain timed it). Within another 10 minutes it was down to a “4” and I knew I could make it. I adjusted it a while later and my pain went to a 2 to 4 where it stayed the rest of the day. I don’t know what I would do without it. My pain was full-blown 10 plus 24/7. Now it is way low but still there, as I recently experienced. (If I turn it off I usually do not leave it off for long and carry my controller with me, turning it on immediately when it starts to escalate.)
I have a few questions regarding the stimulator. My daughter had an occipital stimulator implant approximately 7 years ago. Although the implant brought her headaches down from a near constant 8/9 to a 2/3, she never turned it off and the battery wore off in 17 months.
I have ATN in the V1 and V2 (temple) area. Although I live in Texas I had a glycerol rhizotomy at Hopkins 18 months ago. This procedure eliminated the stabbing pain, but the severe aching/burning pain remains. My pain seems to be complicated by Ehlers Danlos Hypermobility (a genetic connective tissue syndrome). My ATN is also triggered by reading due to a form of strabismus (eye teaming problem) and convergence insufficiency.
I saw a neurosurgeon in Houston on Monday, and he was not optimistic about my options until I mentioned my daughter's stimulator. Then he grudgingly offered a stimulator as an option. I knew I was in trouble when he wanted to make sure I had tried every medicine possible (been there done that). He also wanted me to consult a pain management doctor. (have seen 4 over the years for blocks plus others for EDS). I have also seen 3 neuro ophthalmologists. I have also tried Botox and had a C1/C2 fusion for atlanto axial subluxation and cranio cervical instability in 2013. So I wanted to tell him I did not seek his opinion on a whim. Sorry I am frustrated.
Although I fully understand that my case is complex and my ATN could be developing into neuropathy, do you think a stimulator could be an option? Due to Ehlers Danlos, travel is very difficult so I need to find a neurosurgeon in Texas if possible.
Hi Trach, reading about your daughter’s battery running out totally, we have to regularly charge ours (St. Jude) every week or ten days to keep it viable. I leave mine on about 23 hours and 58 minutes a day and have never had a problem with the battery. All I can say is that the Stim pretty much gave me my life back. To me, the surgery was easy, quick, with a short healing time, nothing like MVD or other surgeries. I hope this helps. Take care!
Yes it helps a lot! Thank you for your reply!
I live in Farmington, NM and saw a surgeon in Albuquerque NM, who talked to his partners about every kind of surgery that is out there for TN and none of them would touch a TN2 patient. Their comments were that unlike TN1 patients there was nothing that they could see to help TN2 patients unlike TN1 where the problem could be seen. I talked with a spokesman at the Mayo Clinic in Phoenix AZ, and they were redoing their Neurology clinic so I couldn't get in until around March at the earliest. However, I am on Medicare. They said that they take Medicare patients, however, even with my secondary insurance I would have to pay 20% over what Medicare and my secondary insurance would pay for. That is not at all feasible for me. So, basically I'm stuck with medication that is not working well and makes me ill. I try to live my life to the best of my ability dealing with the constant burning up my nose that moves to the ache across my teeth and stabbing pain over my eyebrow the higher the pain level in my nose. I can deal with anything up to a 6 to 7 level of pain but after that forget it. I am frustrated and se no help out there for me.
glosmenagerie,
I am so very sorry you are going through a similar situation. I am going to try a Cefaly device as a last ditch option. My neurologist wrote a script for me and I can order the device through Costco.us
I am like you - I can handle the pain through 6ish level but then after that I am gone. Would you qualify for a Sphenopalatine Ganglion Block? Most of my pain is V1 level and the temple area so I do not know if this block would help me, but it could possibly help you. Is this a possible option?
I hope you find answers soon.