Suzanne N. Grenell

TN Patient and member of the TNA Board of Directors

My name is Suzanne . I was diagnosed with TN about 2 years ago. Symptoms included right sided tongue burning, pain/burning in front (and inside) right ear and pain/burning right check area and more. It was horrible. Tried all the usual meds, neurontin, tegretol, topomax - no help. Had obvious right sided facial asymmetry. MRI's and dental scans showed nothing. Cranial nerve damage was believed to be caused by undiagnosed adenoid infection, which then affected right side eustasion tube and severe ear pressure problems. Constant popping of ears to relieve the pressure caused cranial nerve damage. Adenoids were finally removed, but it was too late.

Was referred to Dr. Sirois, who as it happens is on your medical advisory board. He helped me with pain mgmt - other meds and trigger point injections. Saw him weekly, bi-weekly, etc., as pain dictated. I recommend him highly.

In June of this year, I experienced a horrible toothache, upper right side. Was terrified I needed a root canal and its effect on the TN. My dentist said there was no problem with my teeth - it was my sinuses. Went to Dr. Kelvin Lee, NYU, ENT, sinus specialist. Dr. Lee sent me for a CT scan - facial bones - coronal view. CT showed right sided facial inflammation and abnormal Haller cells adjacent to the trigeminal nerve. He'd mentioned he'd seen other patients with the same who had experienced facial pain. Primarily cheek and upper tooth area and referred pain in the ear area.

Dr. Lee performed surgery on 7/14/03 to remove the abnormal cells. Dr Sirois ordered specific nerve blockers prior to the commencement of the surgery to prevent further aggrevation of the trigeminal nerve.

Not long after surgery, facial asymmetry started to dissipate. Pain in cheek area is now GONE, pain in ear area is less, facial asymmetry is GONE. Went for shots day after surgery, but not since - no need. Sometimes need pain meds but take less. Am hopeful all pain will eventually go away, but can happily live with this.

Whenever I've spoken with neurologists since, I've found they aren't familiar with abnormal Haller cells. When I'd mentioned this to Dr. Lee, he said this wasn't a surprise. Even most ENTs weren't that familiar with them - only those that specialize in sinus disorders. Although I do not claim this is the cure for all, most certainly my case cannot be unique. Other TN sufferers may have this - and there is a way out!! What appeared to be a severe toothache was the key.

Please note: Haller cells do not show up on MRIs. A simple CT scan of the facial bones inquiring about Haller cells did the trick.

How can I spread this information and additional path to test to those on your advisory board???? There are others who may have a way out too. Nowhere on your website does it mention sinus disorders as a possible cause for the TN - and in my case as the abnormal cells in the sinus cavity were adjacent to the trigeminal nerve, it appears that this path should be explored. Please let me know if I can provide any additional information and if this email is forwarded to others.

Thank you.