My child suffers from Trigeminal Neuralgia

My son, Garrett, began dealing with a nightmare called Trigeminal Neuralgia (TN) when he was 8 years old. He began complaining about his ears burning and I could visibly see they were red hot. We went back and forth to the pediatric Dr. checking for infection. The answer was always NO infection. When Garrett was 11 and starting 6th grade (Middle School) his ear pain hit with a BANG and never went away. We were referred to an ENT and after Cat scans and MRI with contrast; he was referred to a Neurologist with a possible neuralgia. I spent the next several weeks researching all types of Neuralgia and before we even saw the neurologist I was pretty sure he had TN. By this time he had numbing and burning on his face he describes as someone holding a lighter to his face.

 He also started having teeth and jaw pain, he describes as someone drilling in your teeth without Novocain. He was diagnosed with TN and the gamut of medication began. He has been on every drug available at different times to try and control his pain, but given his age, opiates were not prescribed. He was so drugged by the medications he could barely put one foot in front of the other. His speech was slurred, often tongue tied, and he was very sluggish. Because of his condition he was unable to attend school and had no other option but to be placed on a school homebound program where his teachers came to our home 4 days a week for his core subjects. Even then, he often wasn’t able to meet with them.
After him begging me night after night to please help him, I sought out the best Neurosurgeon to see if he could help us. Garrett was 12 when he had his first of 8 Brain surgeries. We drove to Pittsburgh, PA from Huntsville, AL and saw Dr. Peter Janetta, the recognized GURU for Micro Vascular Decompression of the Trigeminal Nerve (MVD). Dr. Janetta agreed Garrett had Atypical TN along with Geniculate Neuralgia (which causes the severe ear pain), and he performed a MVD on Garrett’s right side. His surgery went well and we were so hopeful this was the end; sadly it was not. Garrett started having shocks of pain in his teeth before we even headed for home. Two months later we went back to Pittsburgh so Dr. Janetta could perform a MVD on Garrett’s left side; surgery number 2. While we were there four days later, we decided to have another surgery on Garrett’s right ear to help alleviate ear pain. The procedure consisted of sectioning the Jacobsen Nerve and severing the Chordi Tympani, surgery number 3.
He was in excruciating pain for many days to follow. We drove back to our home in Huntsville and gave the nerves time to settle down to see if the surgeries did the trick. Again, disappointment as they failed to provide any relief. Garrett was still taking handfuls of pills with no relief and the side effects of medication are nearly worse than the disease. Back to researching I went, and with the help of friends on an online support group, I learned about another top Neurosurgeon in Trenton, Michigan named Dr. Ken Casey. Garrett was now 13 and still begging me every day to call this Dr. and make an appointment. Scared to death, I finally called and was able to get him in for a consultation; off to Trenton, Michigan we drove. Dr. Casey decided we should try a Lidocaine Infusion to see if it gave Garrett any relief, again the procedure was not successful and we were given the option of the Dorsal Root Entry Zone (DREZ) surgery. This is a VERY invasive procedure where they go in to the top of the spinal cord and burn lesions (about ten) on the nerves that run to each side of his face.
This was really our last hope for relief. Surgery number 4 lasted over 6 hours and took an obvious toll on Garrett. We were released after several days of recovery and returned home to Alabama. Four days later we noticed Garrett’s incision was leaking. We went to our local ER and they said we needed to go back to Michigan to see Dr. Casey. Trigeminal Neuralgia is not something you normally see in Pediatrics and they had never heard of the DREZ. So back to Michigan we drove. When we got back to Michigan, Dr. Casey put him on antibiotics for a couple of days and then went back in and repaired the CSF leak; surgery number 5. We were released after a few days and drove back to Alabama. This is when everything went horribly wrong. We arrived home on a Monday and by Friday Garrett was once again showing signs of a CSF leak; running a fever, shaking, complaining of lower back pain and severe headache. We rushed him to Huntsville Hospital Women and Children’s ER. They immediately started triage and tried to get him stable.
His Glucose measured a 2 and he was diagnosed with Meningitis, most likely caused by a Staph infection. The ER Dr. said Garrett would have passed away at home that night if we had not gotten him to the Hospital; he had never seen a person with glucose that low and still alive. The next day a Neurosurgeon, Dr. Banks, took him back to perform a wound revision and debris the infection out; surgery number 6. Dr. Banks indicated Garrett was very lucky to be alive, but the surgery went well and Garrett would be in ICU for a few days. The Infectious Disease Dr. decided it was necessary for Garrett to have a PICC line inserted and receive IV medication for the next eight weeks. We were released and Home Health Care came that day to show me how to give Garrett his medication and empty and clean his Foley. Due to nerve issues Garrett was having a problem urinating on his own.
That first night home was horrendous. He was projectile vomiting again and couldn’t hold anything down. The next morning we rushed back to the ER where he was admitted for observation and battery of tests. Around 4:00 that afternoon Garrett started becoming very confused and agitated. He was saying things that made absolutely so sense, he couldn’t correctly recognize family members, and then his eyes suddenly rolled back in his head. I, along with his dad and my husband rushed to the nurse’s station and demanded a doctor come ASAP. They moved Garrett into the Pediatrics ICU where we met Dr. Kimberly Limbo, a Pediatric Neurologist with Huntsville Hospital. As Dr. Limbo was holding Garrett’s head down and performing an EKG, she indicated he had Hydrocephalus, and it was “minute to minute mom” on whether he would survive. I will never forget those words as long as I live. The on call Neurosurgeon, Dr. Johnson, showed up with an assistant and indicated Garrett’s prognosis was “grim” (also words I’ll never forget). He explained he had to perform a bedside drain into Garrett’s head to release the pressure and fluid because there wasn’t enough time to get to the OR; surgery number 7.
Thank God the procedure went well and Garrett began recognizing family members by early morning. We spent 10 days in ICU managing the balance of the external drain in his head. He was eating, talking and even laughing. I think all of the nurses and staff fell in love with him. Surgery number 8 consisted of inserting the permanent VP Shunt in his head and drain to his abdomen. The meningitis caused a concrete type blockage in his upper spinal cord preventing free flow of brain fluid into his spinal cord, causing pressure to build on the brain. The surgery was successful, but getting used to the shunt and how it drained was a little difficult for Garrett; he was nauseated for the next month or so.
He was released from the hospital again with the PICC line and I gave him medicine for the next 6 weeks. The reason for the IV medication was due the MVDs he had the year prior. MVDs consist of using a Teflon Felt to wrap the blood vessel in an attempt to decompress the trigeminal nerve, creating a chance the meninges could attach to the Teflon Felt (foreign body). Fortunately, the infection left but the pain DID NOT. He’s now 16, and instead of school, dances and girls, he lives in a dark room, still on medication, and suffers 24/7. We need a CURE.