I am sorry for the intermittent absences. Sometimes my thoughts and words are too blah for this space. I don’t necessarily want to look back and read where my head has been. Two weeks ago my guy had a nerve block placed. The placement allowed for a diagnosis of the advancement of his neuralgia from his trigeminal nerve to the occipital nerve. It doesn’t necessarily spread like cancer cells. In fact, the spreading of the neuralgia is usually more like a transfer, except usually the term spread fits better because it remains where it was and moves onto other nerves.
If there is good news in any of this, it is that occipital neuralgia is more common and more commonly treated. The first line of defense was the nerve block being placed. An experience in and of itself. A shot placed in the base of his skull and directly into his scar tissue from his decompression surgery. A shot that rubs against the actual skull bone. His neurologist says, “Oh yea, I am warning you that you will hear weird sounds and they will be in stereo because it is so close to your ear (your occipital nerve runs from behind your ear over it and then branches out above and below your eye). This was no joke. The sound so horrible that my guy about passed out. He became increasingly nauseated and dizzy. Thankfully, it passed and we joked it needed added to his long list of things he never expected to happen in his life.
The treatment worked great days 1, 2 and 3. He had it on a Thursday and by Monday pain was actually worse. It also brought with it is some ear pain and set up triggers of the nerve pain on that whole left side of his face. A week later he is also now getting tingles and small nerve zaps on the other side of his face. This is actually again quite common in TN in patients that the TN will “spread” transfer and become bi-lateral. But really none of this is normal. But if it were to happen, this is what the textbook says will happen. Notice I use the term textbook.
He keeps telling his neuro doc that the TN feels like it is back on his usual side and they keep dismissing it as still nerves healing. But then it is followed by a laugh because the odds of getting TN 1/20000. The odds of getting occipital neuralgia and TN are so small it has never really been calculated. The odds of returning TN so soon after MVD minuscule (not sure I buy this thinking because I read enough online to know differently). His neuro who is great, goes on to explain that nothing about TN makes sense and nothing about my guy’s case has been textbook.
His meds have been steadied and he has been pulled off inefficient ones and stabilized the ones that were/are providing some sort of relief. The next step could be a couple of different things. He could decide to sever the nerve creating numbness. It may or may not work and he would be permanently numb on that side of his face. This is usually a last resort and you never know if it is will work because there isn’t enough research or money in research of TN to see the exact cause of it. He could get radiation on the nerve.The effectiveness again is up in the air. It causes temporary numbness I believe. We could opt to head to Dr. Cohen’s office again which means surgery. There are several lesser known alternative treatments with alternative meds and therapies. All of which work sometimes and sometimes not. I am leaning toward Dr. Cohen’s office seeing him and not necessarily surgery. There are several world-renowned doctors in this practice that I believe could explore non-surgical options. Dr. Cohen is a neurosurgeon. Our neuro here is amazing and works great with their office and our family physician. I just want the best.
The emotional toll of this is still trying to be calculated every day. I promised this summer that there are tough decisions for my family on the horizon and there are. It has hit us both hard and we both admitted had either of us at this time last year had any idea that this would be where we at we would have never believed it. But we are here. We try and keep life as normal as we can for our family. I did sit down with the girls this week. I think they knew it was coming, but I like to be upfront with them as much as we can. I explained that Daddy was struggling again. They didn’t really realize things were back on or that other diagnoses had happened. I shared the kid version of all of this and explained we don’t know what the future brings. But that the outcome was all of us together and hopefully Daddy in no pain. But again it may take us trying things to get there. Hopefully, nothing like last year. Hopefully, not a surgery again. But I just wanted to be honest that we didn’t know.
He still has triggers that cause him pain; Talking, yelling, stress, cold winds, a touch to the head or side of the face, physical assertion, barometric pressure, being extremely tired or too caffeinated. It is all a delicate balance. Thankfully, his neuro switched his meds around and he is taking relatively low doses of his anti-seizure meds so he is not zombiefied. They do make him tired, but they also cause insomnia so it requires perfect timing. He is only taking two daily meds for TN and that is still loads better than last year. He has options to add meds in if needed and increase dosages.
More than anything we are trying to lean on our faith that the good will prevail here. It has to. We need it. #lovealwayswins