I thought I would try to bounce this off my fellow TN sufferers because I am at a crossroad and am uncertain what I should do. Any advice would be much appreciated.
Both sides of my face hurt, both of my ears, and once in a while my throat gets in on the action.
So, my MRI says....Tiny vessel seen abutting the cisternal portion of the right and left trigeminal nerve.
My Neurosurgeon is offering the Trigeminal Glycerol Rhizolysis for starters. But....he can only do one side of my face at a time and it will not help my ears or throat. He said there is a slow process in getting into more invasive measures. Basically, it's a long road.
I'm afraid to accept a procedure that will not help all of my pain, and I'm afraid of additional problems that maybe caused by walking this long road. I would still just like the MVD, but he is not going to do that.
He is a good doctor, and I know he has a wealth of experience. He said, "You are young and I believe you can get better." Those are huge words of inspiration, but still.....I'm frightened.
I want to be out of pain, I do not want to be on all of these meds, I want to be able to spell and organize my thoughts before they come out of my mouth. I also do not want to be someone who complains when I have opportunities to get relief.
Which leads me to the big question....What would you do?
Read, research, and research some more. The very best educated consumers of all these medical and holistic approaches visit this website, and can provide useful advice. But, what I have found personally is that every individual responds differently. What I pray for is that one day there will be a cure for us all. Most of us do not get total relief. At least not permanently. I had a Gamma knife that turned into anesthesia Delorosa. I am now trying nerve blocks which I think I will not continue due to the poor result. I needed to try. I am now just trying to manage the pain. Time to do more research…Best wishes.
After medication failed, my choice was MVD. I have bilateral TN1 and TN2, and have had the surgery on both the left and right. Due to the fact that my right side TN2 pain was present( undiagnosed) for almost ten years, the MVD was only successful at resolving the shocks, not the burning boring pain. I had a peripheral nerve stimulator implanted to control the pain on that side eight months after the MVD. Fortunately, the MVD I had on the left side, which was only symptomatic for one year, resolved both the shocks and the burning boring pain. I am now pain and medication free.
My choice was the right one for me. We are all different, but I hope you find some good information on this site. It was my best source of info while I was trying to make my decision.
Best of luck,
Christine
You...always have great information to share. My husband and I watched the entire video last night. That guru says almost the same things as my guru; omitting topical treatments and his complete lack of prescribing addictive meds. I asked for Ativan once because the ER gave it to me; he said, you’ll have to get that from your GP. I don’t like to prescribe additive medications. My thought here is the Trileptal and Baclofen are addictive too, right? They must be if I can't just stop taking them without risking my mental and physical health. But, I digress.
I guess my concern is the problems treatments could create, my next concern is how much more pain I can take and for how long. I’ve always been a suck it up and get over it kind of girl; but this time it’s different.
I have been obsessed with my pain every day since my dx. I have read about TN and the possible treatments. However, I did feel much more informed after hearing Dr. Casey's lecture. My husband was blown away and said he really had no idea what I was dealing with until he watched it. So, thanks for your recommendation to watch the video. We decided last night that to schedule the glycerol injection. I'll let you know how that goes.
And next week when I see my GP to get my Ativan refilled, I'm going to get some more topicals to try. ;)
Kc Dancer Kc said:
For starters
Google
The tides of neuropathic pain
Make notes
Share what you learn from that guru video
With your guru!
It is two hours long..... Break it down
Dr. Casey saved my life, its because of this video.....and his hands......
i had to pick my path with the most info i could get my own hands on!
What a big decision tou have. Some neurosurgeons will not do the MVD because they are unsure if that will help and besides that is the most invasive and also you have pain on both sides of your face. Did your Dr discuss if Gamma would be of any benefit to you? I know we all do not like the side effects of the meds. Have you considered a second opinion as I know the first time I went the doctor had about six newbies who said I had a clear path up to do an MVD however the MRI did not show the nerve having a problem and I was scared of anyone poking around in my head. It took me at least three years to get up the courage and through my neurologist who was handling my meds we decided Gamma was best. When I went back to the neuro she wondered what took me so long. So please really consider what you feel will be best for you
We feel for you and hope and pray you get some relief
Chippy
I agree with Chippy about getting a second opinion. I am lying in bed in hospital thankful that I just had my second MVD. (First successful until head trauma last year). I am lucky to have one of the best neurosurgeons in Australia for TN for which I am told by the nurses here that people come from all over Australia just for him to do this surgery. One told me he does about 5 mvd’s for facial pain a week. For those in Australia interested, he is dr mark Dexter and I have already added him to the doctors list after my last surgery. Also, what I have read and he has confirmed, MVD is the most successful and longest lasting with least side effects. I was dead against gamma knife and all others which a lot of information tells me that once you have it done, and when it usually wears off after a few years, it is harder then for an MVD to be done further down the track. But as we know, everyone’s situation is different.
You need to go with your gut though, and be as informed as you can be. Whilst ever you are having second thoughts, I would be seeking a second opinion.
I am grateful for my doctor who I am hoping has given me my life back. All the best to you and I pray you find relief.
Oh, Gen. I hope that you are pain free after your MVD. Many well wishes to you!!!
My doctor now is my second opinion. But he is the first TN specialist. And now that I've spoke to his nurse again, the Glycerol is for more diagnostic purposes and I should watch this video of his: http://www.facepain.us/sahni_is%20it%20really%20classic%20trigeminal%20neuralgia.html It may help, but may not. I think I have the right guy working on me; but I'm always interested in getting feedback from those who suffer like I do. If this doesn't help me, the MVD is back on the table. I guess anyway you look at it, TN is just very difficult to deal with for the patients and for our doctors. I'll be following your posts to see how your 2nd MVD works for you. Good luck!
Gen said:
I agree with Chippy about getting a second opinion. I am lying in bed in hospital thankful that I just had my second MVD. (First successful until head trauma last year). I am lucky to have one of the best neurosurgeons in Australia for TN for which I am told by the nurses here that people come from all over Australia just for him to do this surgery. One told me he does about 5 mvd's for facial pain a week. For those in Australia interested, he is dr mark Dexter and I have already added him to the doctors list after my last surgery. Also, what I have read and he has confirmed, MVD is the most successful and longest lasting with least side effects. I was dead against gamma knife and all others which a lot of information tells me that once you have it done, and when it usually wears off after a few years, it is harder then for an MVD to be done further down the track. But as we know, everyone's situation is different.
You need to go with your gut though, and be as informed as you can be. Whilst ever you are having second thoughts, I would be seeking a second opinion.
I am grateful for my doctor who I am hoping has given me my life back. All the best to you and I pray you find relief.
You poor love. We are in the same camp. Literally. It sounds as though you have combination bilateral glossopharyngeal neuralgia with perhaps geniculate neuralgia too. I suspect that while some 5th nerve compression is appearing in your scans, on operating it sounds as though a surgeon may find 7th, 9th and 10th involvement, given your ear and particularly throat. When patients symptoms don't subscribe to the more common neuralgias, surgeons seem very reluctant to operate. As much as your doctor is a great guy, I would seek a second opinion from another neurosurgeon. And I totally understand what you mean about just wanting it done and over with, rather than living on medications that don't work or having a small progressive series of surgical interventions. I think you need to do as you're doing, as in reach out, read and read, and get another opinion. Would be happy to talk with you and have a mutual hold hand session. x
You're one of the few i've heard that had throat pain.At it's worst,i had pain from the top of my head to down in my throat(right side).My TN was caused by a AVM that was "tickling the nerve"is how one surgical nurse described it.I had Cyberknife to treat ,shrink the AVM and then Gammaknife a year or so later strictly for the TN pain which went off the charts and didn't retreat as it had in the past.So far so good a year later.
I go back and forth between sanity and insanity hourly it seems and I’m not comfortable sharing my madness with many….but I'm grateful to have this group.
I feel really bad about seeking another neurosurgeon's opinion. Like, I don't trust the guy who runs the TN Center of VA. I feel like I'm "cheating" on him by seeking out another opinion, if that makes any sense.
The other part of me says screw it. So, this morning I searched for any neurosurgeon that treats TN in my area. I found one group that didn’t state they treat TN but on their procedure page I found MVD for TN. So I called at 8:50 am when they opened. 2nd Neurosurgeon opinion tomorrow at 1 pm. I’ll let you guys know what he says.
Good luck. Good luck. And good luck. Often neuralgia patients see upwards of 20 people before they get a diagnosis or help. Wishing you all good things and toes and fingers crossed. It's your body and only you can fight for it.
Good for you! It's up to us ,not some doctor that thinks he knows everything.
CrazyLady said:
I go back and forth between sanity and insanity hourly it seems and I’m not comfortable sharing my madness with many….but I'm grateful to have this group.
I feel really bad about seeking another neurosurgeon's opinion. Like, I don't trust the guy who runs the TN Center of VA. I feel like I'm "cheating" on him by seeking out another opinion, if that makes any sense.
The other part of me says screw it. So, this morning I searched for any neurosurgeon that treats TN in my area. I found one group that didn’t state they treat TN but on their procedure page I found MVD for TN. So I called at 8:50 am when they opened. 2nd Neurosurgeon opinion tomorrow at 1 pm. I’ll let you guys know what he says.
It’s your prerogative to search high and low for help. Good for you. I’m off to confront a doctor that stated I need to allow 6 months to lapse before I get relief.
I had the second consult. Not really sure how to sum it up, except I really appreciate my current surgeon. This surgeon told me that everything I heard from my doc is right on target. I asked him about having ablative procedures and MVD’S not being as effective. He said that’s not true. He said that if I was his wife he would do the gamma knife procedure on me. After a brief talk he thought maybe I didn’t have trigeminal neuralgia at all he thought atypical facial pain sounded more accurate or maybe its hemi facial muscle spasms. (I’ve never asked what kind of TN I had. All I know is my face, ears and throat hurts and I want it to stop.) Anyway he further informed me that my surgeon who is 100 miles away is one of the best doctors on subject of TN and I couldn’t be in better hands. He assured me Dr. Sahni will figure out what is wrong with me and treat me better than anyone. Then he wished me luck. End of Story.
I did call my surgeon today to report the awful pain I’m having. Adding Neurontin to my Trileptal/Baclofen daily cocktails. Amen for these drugs. They work where morphine can’t … at least for me.
.
I had the second consult. Not really sure how to sum it up, except I really appreciate my current surgeon. This surgeon told me that everything I heard from my doc is right on target. I asked him about having ablative procedures and MVD'S not being as effective. He said that's not true. He said that if I was his wife he would do the gamma knife procedure on me. After a brief talk he thought maybe I didn't have trigeminal neuralgia at all he thought atypical facial pain sounded more accurate or maybe its hemi facial muscle spasms. (I've never asked what kind of TN I had. All I know is my face, ears and throat hurts and I want it to stop.) Anyway he further informed me that my surgeon who is 100 miles away is one of the best doctors on subject of TN and I couldn't be in better hands. He assured me Dr. Sahni will figure out what is wrong with me and treat me better than anyone. Then he wished me luck. End of Story. I did call my surgeon today to report the awful pain I'm having. Adding Neurontin to my Trileptal/Baclofen daily cocktails. Amen for these drugs. They work where morphine can't ... at least for me. .
I posted my comment but it seemed to disappear so I will try again. With respect to these physicians, you do not sound as though you have atypical facial pain. That is a rubbish diagnosis. There is nothing atypical about your pain. In fact there's a very specific pattern to it. It sounds as though you have GPN/GN with TN overlap. GPN will do the throat and GPN with GN does the ears. Ablative procedures can be very damaging, especially if the surgeon is treating the wrong nerves. Can I suggest that you have an email discussion with a neurosurgeon with wider experience with cranial neuralgias? Or that you put some substantial literature in front of your doctor and ask him to think about your ears and throat too. There is more to the world than TN and ATN.