GeorgePaul is still pain-free tonight – and felt good enough for a haircut today!

What a memorable Memorial Day for us! GeorgePaul was pain-free from 10:15a.m. until he went to bed!!!!! We drove the jeep for a short ride near our home, went to two grocery stores as a family, and barbecued one of our favorite meals together: steak, corn-on-the-cob, peppers, and sheepherder’s bread. We sat on the porch, played with the dogs, ate, and enjoyed each other.

We know how precious this is! TN can come and go with no warning. We also know that the One we trust in is bigger than TN. GP woke up this morning with no pain. It has been a long time since that has happened…such joy in our home today!!

We are driving down the hill to Upland for GP’s twice weekly appointment with Dr. Flory, the NUCCA specialist of Atlas Spinal Care. We will be seeing him for a while, as GP’s atlas and his muscles will take time to relearn their correct positions. He will also continue the medication and supplements that he has been taking.

It is tempting to focus on the future…

This is a theme in our household. There are so many things we have to be grateful for, but here is a portion of what GP talked about last night and this morning. “I am so thankful for my family. I’m especially thankful for God, who protects me and keeps me safe.” (He has asked us many times, in the middle of the epics, for reassurance that he is not going to die.) “I am also thankful for distractions, for friends, and my dogs, and mountains. I am really thankful for not having gigantically, major pain.” We are ALL thankful for that!

The upper cervical doctor measured GP again on Thursday, and his atlas had stayed in place overnight! This is a good thing! It is not in the right place yet, as this takes time. The muscles have been ‘trained’ to be in the wrong place for a very long time, so it will take some time to re-train them. He will have two appointments next week.

I have been reading more about the nerves that originate in the brainstem, which is protected by the atlas and the axis bones. These are the names for the top bones in the spine; C1 and C2. The cranial nerves that begin in the brainstem that might be responsible (in my limited understanding!) for GP’s pain are the trigeminal nerve, the vagus nerve, and the facial nerve. Each one of these main nerves (there are 12 cranial nerve pairs) have various branches that go near the external auditory canal where his pain is specifically located. The relieving of the pressure on the brainstem, and subsequently the nerves, should allow the pain to subside. This is not an overnight process! It will take a while for the atlas to get into the right place, from the the adjustments that the doctor does, and then a while for the atlas to stay in place, and a while for the nerve(s) to heal!

Through all of this, the best part of all is the hope we have been given. ‘For with God, nothing shall be impossible.’ Luke 1:37

This was not the day we had planned, but neither are our ways the same as His ways.

Morning wake-up: GeorgePaul woke up screaming and had 3 strong epics within 35 minutes, lasting 3-5 minutes each. Then, 10 minutes later he went to pain-free mode! We drove down the hill for our 9:00 appt. with the neurosurgeon. Again, GP had no pain on the drive down. During this appointment, GP had 2 rises, but came back to 0 each time.

The neurosurgeon was baffled by GeorgePaul’s case. He did find a blood vessel pressing on the trigeminal nerve, but it was on the left side. GeorgePaul only has pain in the right ear, where there are no visual indications of a compression. He was puzzled by the presentation of GP’s symptoms, as they do not fit the typical pattern for TN sufferers. He referred us to another pediatric neurosurgeon, who has more experience, at Kaiser Sunset.

We started the drive up the hill, when we received a call from the NUCCA office asking if we wanted a cancellation appt. for the afternoon. We took the appt. Finishing the drive up the hill, GP continued to be pain-free until 5 minutes from our house. He had pain at a 6 or 7 for an hour and then became pain-free again. We LOVE these new breaks!!

We began the drive down the hill for the second time with zero pain. After the afternoon appointment, GP was pain-free AGAIN and fell asleep until 2 minutes from our house. He woke up suddenly with a piercing shriek and screamed in pain. He had a rise every 1-3 minutes for the next couple of hours. He remains at a 7 this evening, with the rises slowing down. The incredible, ‘not-of-this-world’, timing of those pain free drives up and down the hill are a tangible gift. Thank you for your prayers.

Afternoon Appointment: The NUCCA doctor talked to us about GP’s measurements of his atlas bone in relation to his head and body. The average measurement difference in all NUCCA tested patients, regardless of age, is two and one-quarter mm in total. GeorgePaul’s measurements are seven and three-quarters mm in total. The doctor said that it is very uncommon for the atlas bone to be this far off, and off in his particular configuration. He said that he believes the work he can do for GP, with the gentle, upper cervical adjustments to his atlas bone, will allow the pain in GeorgePaul’s ear to be resolved. This is the first doctor that has offered us hope for fixing the problem.

What astounding hope! We clearly acknowledge and give glory to the One who directs our paths.

GeorgePaul had a tough epic this morning, along with the constant pain of 7. Then, at 10:30 he went to a zero out of ten!!! Pain free means we see a little of the real GP!! He remained at a “0” until 2:30. Then, for an hour, he had 3 or 4 rises, but always came back down to 0. This has not happened before. He is back at a 7 as of 3:30 this afternoon, has had an epic and 3 rises. We are SO thankful for the moments with him! The dogs got a great romp with him, he paced around the yard and the house in one of his imaginative worlds, and he did not scream. at. all. These moments serve as a huge relief for him, as well as a reminder that state of pain is NOT a normal way of life.

We had an appointment with a NUCCA doctor today; (NUCCA – National Upper Cervical Chiropractic Association.) The theory behind the upper cervical care, simply, is that your head needs to be on straight. If the head is misaligned, then all sorts of health problems can occur, including impacts on the trigeminal nerve. There is a man, James Tomasi, who suffered severly with TN for 12 years, and was healed through this care. He has written a book, What Time Tuesday?, that details his journey. (I don’t know how to underline the title with this blog format. 🙂 ) I had read this book and viewed the website for this doctor’s practice about a month ago. We were in the middle of the worst pain for GP at that time and did not pursue it. Last week, David was given this doctor’s card from one of his colleagues who is in a small group with this doctor’s parents! We made the appointment!

The doctor did several measurements and tests, and took some x-rays. GP has issues with the atlas bone and the upper cervical bones. We will go down again next Tuesday for a full report and a correction to the spine. This is different than an adjustment by a regular chiropractor. The changes are so gentle, that many patients do not even feel them.

We are always praying that GeorgePaul will be healed. We also know the One who heals.

GeorgePaul was at a 7 for constant pain on Sunday. He had one epic, and 1-2 rises per hour. Distraction is one of the primary tools in any pain management advice, and this kind of day is one in which he can focus and distract himself. The minute he tries to stop the focus, however, the pain is in front of him and he has a hard time.

Saturday included some great moments; we went to a movie! It was a spontaneous decision and we try to be ready for the chance to do something that is not doctor related outside the house. When we had been there about 15 minutes, his pain level went to zero for an hour and a half! I could see the pain start back up about 35 minutes before the end of the movie, and he was squirming in his chair about ten minutes from the end, but did not want to leave. We made it back out to the car and came straight home, and his comment was, “It was worth it, just to be out doing something normal like my friends.”

Last night, Sunday night, GP screamed 4 or 5 times during the night. This has not happened for a while. The noises woke the rest of us up each time, and although we kept checking on him, he never fully woke up. We are glad that he stayed asleep, but we’ll be watching him closely today.

Those are GeorgePaul’s words for times when it gets harder. After I posted last night, the evening took a downturn. He has epics without the screams. They last a while; last night’s was 30 minutes or so. We tried to figure out how much time he has been without pain in the last month and came up with 15 hours of pain free time in 30 days.

Right now, 8:30am on Saturday, he is at a 5 out of 10. He is outside visiting his dogs. The thankfulness we feel is strong. These moments are precious.

We love the relative upswings around here! GeorgePaul had a pain level at six for a small part of the day – and was at a 7 for the majority. No epics – very few rises the entire day!

We also received a call from Kaiser regarding our appointment with the Fontana pediatric neurosurgeon. There was a cancellation next week, and we have been given that appointment on Wednesday, May 25th. We are thankful for the chance to keep moving forward to fix the cause of GP’s pain!

I study for 3 or 4 hours in the mornings before GP gets up. I studied the cranial nerves VII and X today. There are 12 pairs of cranial nerves. VII is the facial nerve, while X is the vagus nerve. There is a juncture, the geniculate ganglion, where the facial nerve and the vagus nerve connect and share the same trunk for a short way. Geniculate neuralgia would involve the nervus intermedius, which is the location between cranial nerve VIII (vestibularcochlear), and a part of the facial nerve. I am trying to find the connection between the location of GP’s pain now (in the auditory canal), and the pain he had for the first two months (deeper in the ear, “just past the eardrum”), before the three week break of no pain. There is also the possibility, in my thought, that something else could be pressing on a nerve; some leftover sinus issue in the ethmoid, or some swelling in the parotid lobe. I don’t know if this is even possible, but my mind couldn’t possibly be more open!! It is a steep curve that I’m climbing, as I have to look up many extraneous words, such as cerebellopontine angle and pterygopalatine fossa. These tend to slow me down. 🙂
It is fascinating, but hopefully it will help us communicate GP’s pain location to doctors more comprehensively, It also may help us in having a fuller understanding of their knowledge. I am certainly finding out that the more you learn, the more you find out how little you know!

We had pain in Oak Hills yesterday. GP hovered at an 8, rising to a 9, all day. He was not able to distract himself with the usual activities. His eyes continually darted from place to place as he desperately looked for relief. He had a HUGE epic, 5 minutes long, around noon. This was different than previous huge episodes as it did not resolve itself in the piercing scream and rigid body for 10 seconds or so. He was writhing, hitting his head, panting, and crying. The epics usually let go with the scream, but this time, he simply collapsed without the scream. He went on to have 4 more epics in the afternoon, and rises that were intense. The pain level continued to be at an 8 all day. Again, we have no clue as to what could precipitate the differences. The weather was colder two days ago than yesterday, and we have had a fire going for a couple of days, so it’s warm in the house. His food intake has been the same. He is sleeping at night. We work hard to not be stressed around him, as we read that this can “ramp up” the pain attacks.

Today, he is at a 7. He’s been awake for an hour or so, and has not had any rises. We’re just simply glad.

We have been given an appointment with a pediatric neurosurgeon, Dr. Won, at Kaiser Fontana on June 8. One more step!

He hovered between 6 and 7 on the pain scale all day. He had one, short epic. He had a total of 10 or 11 rises for the day. Wow! His prayers last night included these words, “Thank you for my family, and for my friends.” I am constantly reminded, as I am physically with GeorgePaul, to live out praise and thankfulness for all we have; not looking at all that we wish we had in terms of ‘no TN’ pain. His words are not empty; he is genuinely thankful!

We have kept the house, over the last few days, at a temperature highly unacceptable for David! The wind and cold outside have not affected GP as much as they might have because of the warmth inside. David never complains; instead, he faithfully stokes the fire (our wood stove is our heat source), replaces the firewood, and looks out for GP’s comfort level, no matter how hot and steamy the house seems to him.

We hope to hear about an appointment with a pediatric neurosurgeon at Kaiser Fontana in the near future. We have not received word yet. We continue talking with the Traditional Chinese Medicine doctor, and supplementing GeorgePaul’s routine with chinese herbs. He is a champion pill swallower!

Whenever GP has an easier (relatively) hour or two, our hope rises in anticipation of the next few hours. This pattern turns into hope regarding the next day. We have only had one or two occasions where the ‘less pain’ day has turned into two ‘less pain’ days, but our hope does not diminish. Maybe today will be the day! Regardless of the outcome of today’s pain level, our hope extends beyond even this terrible disease. Ultimately, He holds us, and we are His.