Revolt, pardon my lengthiness, as this will be long, but I want to give you a clear picture to properly answer your question. My pain was on the right side, in the face. BUT, it started in one tooth, a molar. Pain that was totally crippling for 20-30 seconds. Then gone. Later it moved to the mouth pallet and other teethā¦..like the pain was crawling, moving. Then it was in the face, right side. I went to dentists convinced my tooth was bad. Nothing. Then an ENT, then another ENT, then an oral surgeon. The oral surgeon told me what it was just by my very verbal description. He said I had trigeminal neuralgia and gave me Carbamezepine and said try it for a week. āIf the pain goes away you have TN; if it doesnāt then its something elseā. It did go away as long as I took the med. I read up on it and learned that sometimes over time youād have to increase the dosage. I got by well on the Carbamezipine (Tegrotol). Luckily, we moved from Louisiana to near Birmingham and I got with a neurologist there. Over time, yes, I did have to increase to a higher doses. Sleepy?ā¦.yes. BUT getting upā¦..getting moving and doing stuff made the sleepiness take a back seat. Iām active, working in the yard, trimming, fixing this and that, mowing the grass, fishing, hunting etc etc. I noticed this !ā¦ā¦any time I was up doing stuff I never had any pains. None. Activity and getting my mind on doing āstuffā gave me no pain. Doing āstuffā and getting my mind off stressful things made things a lot better. Only when I was idle doing nothing. I canāt explain that, thats just the way it was. I had a tremendous amount of stress I was dealing with. I told my neurologist this and she had no answer for that. But I always thought (rightly or wrongly) stress in some way caused this. In one of my checkups she told me if you get tired of dealing with this we do have the Gamma Knife here in Birmingham (Alabama). At that time (2000), it was only in selected bigger cities across the U.S. Now its everywhere. I told her I was interested because Iād already been reading up on TN and had read about the GK and also the MVD surgery. So I jumped at the GK option. She sent me to Dr. Swaid Swaid, a neurosurgeon here in Birmingham So, an MRI was done. In my visit with him he was SO compassionate and fully understood because he had dealt with TN patients over the years. He told me he could see it just from my facial expressions telling the story of my pain. I asked him āwhat about the MVD surgery optionā? He shook his head No and just very calmly said with the MVD, its an invasive surgery, and sometimes we go in there and find a blood vessel pressing on the trigeminal nerveā¦ā¦.and other timesā¦.nothingā¦.shaking his head. As for the MRI: I asked him some time later if the MRI showed anything. He said No. Yet, something was surely causing the pain. But the MRI showed nothing. Iām guessing here, but I think he opted for the GK because of that (nothing showing)ā¦..and GK is not an invasive procedure. Iām just guessing on that. The GK does not work every time but it did for me for 9 years. When TN returned after 9 years of being pain free it came back like a roaring freight trainā¦.electric shocks in my face with the vibration of a jackhammer. So, I went back to him. By this time the new machine , CyberKnife, had come out (2010). So, he gave me that. It did leave my face with a lot of numbness on the right side, but Iād take that over those violent strikes ANY day. I could NOT live with that. Over time, the numbness subsided to almost nothing, but it took years for the numbness to subside (in my case). Still, even with the numbness the brain adjusts and that just becomes normal. Another point I want to make: At one time I drove to Ohio to see another neurosurgeon thinking Iād find someone to do the MVD for me. I was desperate. He did an MRI. It showed no nerve compression on the right side but, as he said, definite compression on the left side. I asked him then why donāt I have pain there. He said, āyou tell meā. He didnāt have any idea why I had no pain there. Soā¦..like you, my first MRI in Birmingham showed no confirmation. The next MRI (years later) showed no confirmation on the right side, but did on the left where no pain was. Like youā¦.the first MRI showed nothing. The second MRI showed that the trigeminal nerve on the pain side (right) had actually shrunk. He (the surgeon in Ohio) was shocked . After returning to Birmingham my neurologist said āand thats exactly what we would expect it to doāā¦.(shrink). So, my doctors in Birmingham knew more than the neurosurgeon I drove to see in Ohio.
Bottom line āālike youā¦ā¦the MRI showed nothing.
Iāll say this about the GK and CK. The procedures are easy. No cutting, no brain surgery, no incision. But the GK involves a head frame which they attach to the head with screws to hold your head steady and immovable so the GK could accurately aim its beams without you moving your head around. Fitting that frame on was no fun at all. But once it was on it was ok. It was just the application of it that was painful ā but still, far less than a TN episode. The CK has no head frame. Instead, in order to hold your head in position, they put a warm (not hot) rubber mask over your face and let it mold to the shape of your head. After the mask cools it forms into the shape of your face and head and they attach that mask to the table so you canāt move your head. Its painless. Its really a modern miracle. Once the mask āsolidifiesā they make an appointment for you for the treatment. I was on the table maybe 45 minutes. Its a robotic arm treatment that moves around aiming its beam at a place on the trigeminal nerve from maybe 50-100 different angles. This is much more accurate than could be done with the human hand. It was easy. Very easy. It took some time for that to work. It wasnāt instant. But I took meds during that time. Eventually, as I stated before, I got off all of the 4 or 5 meds except Lyrica..,..which I take two/day. I take the generic form, Pregabalin, and is very reasonable in cost. $27 for 3 month supply through GoodRx.com. I could let my Medicare Advantage (Medicare) pay for it but the co-pays are a little higher that way, so I just buy it myself.
I see you are in Germany. Ifā¦.you decide to consider the GK or CK there should be these treatments there in Germany. If you were in a 3rd world country, probably not. I think the CK was invented by a scientist in Finland if Iām not mistaken. Iām not telling you to consider them, but they were offered to me and I took it. That decision should be left up to you and a GOOD neurosurgeon. Preferably, a neurosurgeon in a larger city or a large university and has had a history of treating TN.
As for the pain down the side of your body, I have not a clue.