Hello all, I have been reading this site for a week, and have found so many ideas and help. GP, my son, was diagnosed on March 29. The pain had stopped on March 20 after two months, but started again on April 10. His neurologist put him on Trileptal and Ativan which did not help. We ended up in the ER a week ago. He is on Tegretol and Indocin. He has some relief now, but is still in constant pain. From all I have read, my husband and I think that pursuing the MVD surgery is what we need to consider. He has had two MRI's and and MRA, which we find out the results of on Tues the 3rd. We would like a recommendation of a doctor in Southern California that has done many MVD's with a high success rate. I am so grateful to all of you who have posted here...to watch GP hurt is beyond difficult.
Thank you in advance,
Laurin
UPDATE. We had the appt. with the neurologist today. I asked if our son had Typical or Atypical or possibly even Geniculate Neuralgia. He did not feel that it was important to distinguish between the types as they are all treated the same as far as medication goes. He is a wonderful, compassionate and knowledgeable neurologist, but after reading this forum, Striking Back!, and a lot of other sources, I know that it is important to define the diagnosis! This was confirmed by others on this site! He said that the MRI/MRA is the most modern machine available (Kaiser Permanente in Fontana, CA) and that it was a thin slice reading. The reading is clear. There is nothing abnormal to see. We know now that Kaiser will not refer outside the system until you have at least seen a neurosurgeon. We asked if he would refer us to Dr. Mastrodimos in San Diego (we had read about Suzanne Elliott having the MVD there) and he did this for us. He was very willing to work with us on that. We do not know if the MVD is the right answer for GeorgePaul, but we need to talk to a surgeon who can give us more information. We see the pattern; increasing dosages of medicine high enough to keep the pain away eventually leads to levels that are too toxic for the liver. Meds are then switched and the process begins again. He is so young! We do understand that this might be what he ends up doing, but we want to try and find a cause to eliminate before the pain has established a pathway, if possible.
I read your stories and advice and concern for each other here. I am so, so sorry that you are all going through this. It is wonderful to be able to share about the pain here.
GP's pain is constant, but also has the stabbing pains (I recorded 51 yesterday, along with 4 sustained attacks.) ATN is what we suspect as well, but the neurologist diagnosed TN. I think one of our fears is that the pain will become established if we wait a long time to search to eliminate a cause. However, we don't want to make it worse! I have read recently that Dr. Burchiel in Oregon suspects that the ATN pain could be caused by an compression in the tregeminal ganglion. This was from a book he wrote in 2002, Surgical Management of Pain Ch. 68. That was a while ago - and I am looking for any hope.
GeorgePaul's pain is confined to his right ear. The first period of pain was deep in his ear, but is now in the "auditory canal". We haven't come across many references to pain in the ear. Is this something you have heard of?
Thank you so much for writing back. We have this appt. with the neurologist on the 3rd and want to be prepared to ask any questions we can of him. These appointments don't come quickly or easily!
James Curley said:
Hi Lauren,
Since you describe your son's pain as constant (which is the way mine has always been) it sounds as if he may have atypical TN, which is what I have. The tests which you are waiting for the results on should give the doctor's a clearer understanding. It is important to determine if your son has type1 or if he has ATN as an MVD would probably not be recommended for ATN. I have had ATN for 21yrs and was never advised to have surgery and, as I understand it, it probably won't help and could make things worse. I would suggest that you proceed slowly as there are other med options. Fortunately, I am now doing the best that I have ever done on the med I am on, but a med which might help one person might not necessarily help another or may produce significant negataive side effects. I am not a doctor, just one who has had ATN for a long time, so I am merely speaking from my experience. it sounds like you are on the right path and I wish you,your husband and most importantly GP an accurate resolution. If Ican be of anyhelp, please let me know.
First of all , I am so sorry to hear of your son's pain. I had TN for over 3 years untill I finally had MVD surgery 7 months ago. It has been wonderful for me , but it is a surgery that does take awhile to recover from as it does involve opening up the head. There are also other procedures that have been known to help such as gylcerol rhyzotomy.
I would also like to say that it is important to determine first if the type of pain he is having is ATN or typical TN. I assume your son has had an MRI and your neurologist made his diagnoses of TN after looking at the MRI. There are a lot of medications given for TN pain but I have found the generic for Tegretol (carbamazepine) to work best for myself although the side affects are not that good. I have never had the TN pain in my ear only in my face but I do have an aching sometimes "earache"feeling in my ear that is caused from TN. I to, am not a Dr. I am only a person who as had typical TN for several years and finally had surgery to relieve the pain. I do wish your son GP, you and your husband all the best and hopefully you will find a resolution soon.
Yes, I have posted Dr. Burchiel's Facial Pain Classification Chart a couple of times here in this forum. So, James' reference to him is on point. If I could see any doctor in the world, that is who I would see, and probably will, eventually.
Here is a link to the same classification system, which is found on the National Pain Association's website:
It is the only classification system I have ever seen. It has been pointed out to me a couple of times on here that it is flawed, and I agree. But, discerning whether GP has Type I or Type II Trigeminal Neuralgia will be key in how you will want him to be treated.
I hope this helps. I will remember your son in prayer.
All the best wishes that he receives informed, compassionate and effective care.
Thank you for the clarifications, Stef. Based on the classifications, it seems that he has Type 2, but his neurologist initially diagnosed Type 1. We will pursue that point tomorrow with our appointment with the neurologist. Thank you for the compassion and the prayers. They are both appreciated!
Carolina, thank you for the question to ask. We are now trying to fine-tune the questions to ask the neurologist!
James, I will keep you updated. Thank you for asking!
Laurin
Stef said:
Laurin,
Yes, I have posted Dr. Burchiel's Facial Pain Classification Chart a couple of times here in this forum. So, James' reference to him is on point. If I could see any doctor in the world, that is who I would see, and probably will, eventually.
Here is a link to the same classification system, which is found on the National Pain Association's website:
It is the only classification system I have ever seen. It has been pointed out to me a couple of times on here that it is flawed, and I agree. But, discerning whether GP has Type I or Type II Trigeminal Neuralgia will be key in how you will want him to be treated.
I hope this helps. I will remember your son in prayer.
All the best wishes that he receives informed, compassionate and effective care.
the nerves may be too small to see; he is a child. there are no adequate studies to evaluate how many children with TN have positive MRIs. it's reassuring to hear your neurologist acknowledged the disorder in your child.
benjamin carson at john hopkins in baltimore, maryland is probably considered the world's best pediatric neurosurgeon; specializing in TN. your child would not be his first pediatric TN case. i would consider contacting him for a consult. he will want to see your child's imaging.
I wonder if your neurologist, like mine, was looking for the wrong thing. When a Dr. reads that in TN thte nerve is compressed, they often look for a nerve being pinched in the jaw joint or the entry ftom outside the skull to inside the skull. My neurologist didn't even know that he should be looking for a blood vessel that is laying on top of the trigeminal nerve. To top it off, the neurologists rarely are the ones reading the MRI! They leave that up to the radiology specialist at the hospital! And that person most certainly might not know what to look for. You definitely need to take your son's MRI to someone who knows what to look for. The pediatric TN specialist that 2 people below mentioned sounds great! I know that Johns-Hopkins is also great, and Harvard Children's hospital in Boston (children's hospitals have charity care for parents who can't afford treatment), and Beth Israel Children's hospital, "SickKids" hospital in Toronto Canada, is considered the best in the world for complicated cases. Its not just for cancer.
There is a new industry that is growing faster than any other industry right now, medical tourism. People going to other countries where the care is cheaper and, if researched well, smarter. Americans go to save money. Canadians and others who live with socialized medicine travel for medical reasons to escape the deadly long waiting lists. I have talked to 2 people who have said that the trip, the treatment and the stay in a "health hotel" which is like a luxuty hotel with health attendants where they stay to recover, was cheaper than their deductible for the year.
So don't give up. That one Dr. is not the only Dr. he might even need some education. I have had to educate every one of my doctors about atypical TN.
After reading your recent post and all the very good advice from others on this site I do think it would be wise to get opinions from more than one neurologist. I have had MVD surgery and it has helped so much but it is major surgery. It is going to take me about a year to fully recover, I am not sure how long for a child. I know he must be in such pain but if you can, do take him to a hospital with pediatric neurologist's and surgeons first. I live in Texas and Dallas Children's Hospital is wonderful. My prayers are with you and GP that you will find the answers soon.
Sheila, Thank you for new ideas! We got a call this morning from the neurosurgeons at Kaiser in Los Angeles. We have an appt. for June 21. We are on the cancellation list for any appt. that comes up on any day. We can be there in 3 hours. Thank you for the encouragement to keep educating the doctors. They do not know our sense of urgency because they only see the rises. They don't see the big episodes! We started a blog (I hope it's okay to reference it here!) georgepaulstory.wordpress.com
in order to send doctors to the site and keep our families/friends updated. It includes a link to videos of GP in the middle of some of the big attacks. When our primary saw this video, we got the first MRI within 3 hours. When the neurologist saw the latest video, we were admitted to pediatrics through the ER. The videos are what convince people; not our words.
We have a friend with TN (she is 30?) who had an MVD done by Dr. John Alksne a couple of years ago. He is mentioned many times in Striking Back! She emailed him for us and because he is near retirement, he is barred from working on people under 18. He recommended that we try Dr. Mark Lynski at UCIrvine. He said that he had recently done a successful MVD on a 6 yr. old girl. This is hopeful for us!
I will be checking out the places you recommended. Thank you, again, for reaching out!! I hope you are having a really good day today!
Sheila, Thank you for new ideas! We got a call this morning from the neurosurgeons at Kaiser in San Diego. We have an appt. for June 21. We are on the cancellation list for any appt. that comes up on any day. We can be there in 3 hours. Thank you for the encouragement to keep educating the doctors. They do not know our sense of urgency because they only see the rises. They don't see the big episodes! We started a blog (I hope it's okay to reference it here!) georgepaulstory.wordpress.com
in order to send doctors to the site and keep our families/friends updated. It includes a link to videos of GP in the middle of some of the big attacks. When our primary saw this video, we got the first MRI within 3 hours. When the neurologist saw the latest video, we were admitted to pediatrics through the ER. The videos are what convince people; not our words.
We have a friend with TN (she is 30?) who had an MVD done by Dr. John Alksne a couple of years ago. He is mentioned many times in Striking Back! She emailed him for us and because he is near retirement, he is barred from working on people under 18. He recommended that we try Dr. Mark Lynski at UCIrvine. He said that he had recently done a successful MVD on a 6 yr. old girl. This is hopeful for us!
I will be checking out the places you recommended. Thank you, again, for reaching out!! I hope you are having a really good day today!
We also think that a pediatric neurologist is going to be important! We are with Kaiser, however, and they require that we go through in-house doctors first. The pediatric neurologist at our Kaiser has no record with the MVD surgery, so we thought we should at least start with someone who is very familiar with this disease, and has performed this surgery on others. One of the main questions we will ask is how many MVD surgeries they have done on children. We see this as a step we have to take to get to the best person to help him. We do NOT want to do surgery for him unless it will provide the success we have seen evident in the few other children we have read about. It is a huge decision.
Thank you for the recommendation for Dallas, and the kind words. I wish continued pain free days for you!
Laurin
Linda Kindle said:
Hi, Lauren,
After reading your recent post and all the very good advice from others on this site I do think it would be wise to get opinions from more than one neurologist. I have had MVD surgery and it has helped so much but it is major surgery. It is going to take me about a year to fully recover, I am not sure how long for a child. I know he must be in such pain but if you can, do take him to a hospital with pediatric neurologist's and surgeons first. I live in Texas and Dallas Children's Hospital is wonderful. My prayers are with you and GP that you will find the answers soon.