So many of us have had the same experience when, after being diagnosed with Trigeminal Neuralgia, we finally get our long awaited MRI back. All that waiting, thinking THIS is finally going to reveal why our child is in excruiciating pain. Only to be told the MRI is “Clear”. There is no compression.
Then, we are so often told, since the MRI does not show a compression, there is no surgical option for our kid’s Trigeminal Neuralgia.
But in discussing this with the neurosurgeon who was finally able to help our daughter, Dr. Mark Linskey, Associate Professor of Neurological Surgery and Director of Neurosugery, Cranial Nerve Clinic, University of California, Irvine, he has a different response. Dr. Linskey told us 100% of people with “the classic syndrome”, TN1, will have the vessel there. Even if it is not seen on the MRI, it will be there.
Why is that so important? Because it means you can treat the CAUSE of the TN, not just the symptom of pain, and as research marches forward MVD remains the best chance for long lasting relief by addressing the primary cause of TN1.
When your child is diagnosed with a rare, chronic illness, passivity is not a luxury we have. We can waste time wading through the confusing medical terminology, get bogged down in immediate pain relief scams or spend too much money desperately seeking the slightest hope at relief and all the while our children suffer. But our kids are better served if we can go straight to the source. The best source for those suffering from TN are experienced neurologists and neurosurgeons who are well versed in this disease. They need experience with this disease, and experience is not simply knowing what TN is by learning about it in medical school. Experience is working with patients, keeping up on research, and knowing all the options and how to choose the best option for each patient.
For most of our kids, treatment will start with a good MRI. We asked Dr. Linskey, the same neurosurgeon in the video link above what kind of MRI patients need to have. His answer was specific and direct: “A volumetric, T2 acquisition with fine secondary slicing, sub-millimeter, either .8 or .5 millimeter. Depending on the make of the machine, this is sometimes called a CISS or Fiesta, or other nomenclature.” So make sure when you are getting consults and second or third opinions, you have the right building block, a good MRI.
Next, you need to have that MRI read by the experienced TN neurologist or neurosurgeon. You heard it in the video, and I have to say that our widespread experience is that even radiologists– excellent radiologists– are not experienced enough with trigeminal neuralgia to know specifically what to look for. Yet an experienced neurosurgeon will often times look at that same “clear” or “negative” MRI and immediately see compression.
But now I am back to that one simple fact from Dr. Linskey: “But not showing a blood vessel there doesn’t mean anything. If you have the classic syndrome you will have the blood vessel there. The chances of finding it there in my series are at 100%. In a larger series of Dr. Jannetta’s it’s at 97% and the other 3% if followed over time turned out to be patients in the very early course of their MS and when followed longer were found to have MS later on.” Not that it wasn’t clear, but it bears repeating that at surgery, even when a patient was shown to have neural imaging clear of compressions, there were vessels compressing the nerve ONE HUNDRED PERCENT OF THE TIME. That means that the same vessels can be decompressed during surgery. Specific anatomical anomalies were addressed as well in the video, but the biggest lesson is that there is hope. For all the times you were told to wait, to give your child another pill, to resign to a life of pain for your child, I am telling you there is hope. You just have to ask the right questions and keep asking the right people until you get the answer you want. And there is a growing group of TN Kids who are finding the answer and a pain free life. Please do not give up!