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Old 04-16-2010, 04:02 PM   #1
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my son's pain

my 18 year old has post hepetic neuroalgia involving his entire forehead. It is a constant 8 out of possible 10 on the pain scale. during a viral outbreak it climbs to a 10. It has been constant for 4 months now and has ruined his life and his parents as well. Narcotics (Dilaudid) is the only thing that relieves his symptions - and that eventually takes its toll and we have no choice but to make him endour the pain...morning , noon, and night. We have tried every nerve or mood medication that has been suggested to us. He has been in and out of many hospital for over a year....including Mayo clinic, Loyola, and Rush, Christ, Luthern General and others in Chicago. We have done supra orbital, stellar gangalar nerve blocks with absolutely no results to the pain. Next is the trigeminal - but not holding my breath.

any body ever have to deal with anything loke this???

desperate - Jerry (dad)

 
Old 04-17-2010, 03:51 PM   #2
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Re: my son's pain

I have a friend that had trigeminal neurolalgia and after several years finally had surgery where they go in behind your ear and manipulate the nerve. She is pain free today.

 
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Old 04-19-2010, 03:42 PM   #3
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Re: my son's pain

thanks.....we do have that procedure scheduled and are hopefull. How did she manage a couple years of that kind of pain?






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Originally Posted by gregw View Post
I have a friend that had trigeminal neurolalgia and after several years finally had surgery where they go in behind your ear and manipulate the nerve. She is pain free today.

 
Old 04-24-2010, 03:25 AM   #4
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Re: my son's pain

I am sorry to hear about your sons pain, I am trying to find out info on TN. I had my 17 yr old son in the ER last night with this pain and they are saying its TN. This just started 2 weeks ago. They gave him like 3 pain med in the ER and nothing stopped the pain. Then they injected him with diluda, I dont think i spelled that right but its a heavy pain med and Tegratol and a bunch of other stuff. That was the only thing that stopped the pain. I have not slept all night because he had so much meds im scared he may overdose or something. If your son gets the surgery please update on the outcome. best wishes

 
Old 04-24-2010, 05:49 AM   #5
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Re: my son's pain

My sister suffered with TN for several years. She finally went to Presbyterian Hospital at U of Pittsburgh for the vascular decompression surgery. They invented the procedure there. It was very successful. That 10 years ago and she's fine today. The facial pain association can direct you to an approved surgeon in your area.

 
Old 04-25-2010, 06:28 AM   #6
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Re: my son's pain

Bryce has been on and off Dilaudid (both IV and oral) many times(only med that worked) - we were at one point we thought the acute chronic facial pain might be caused by an addiction to the Dilaudid.......we made him endoure the constant pain for 6 weeks without any meds - then he had another out break of HSV on his forehead again....which increased the pain again.....which he could not tolerate that much pain without the dilaudid.....and he went back on the med until the 10 day cycle of HSV went away. He is on Tegretol now - which I do not believe is doing anything - so we are weening him off that as well. The other meds he's currently on are Cymbalta and Seroquil XR for sleep. I am seeking a TN block either in Chicago at Ill Masonic Hospital or in process of a specialist at Cleveland pain clinic in Ohio. This has been without a doubt the worst time of my life watching my son suffer. It has been on/off for 15 months with the pain and the last 4 months non stop. - Jerry

Last edited by moderator2; 04-25-2010 at 08:30 AM. Reason: please do not post your email address

 
Old 04-25-2010, 06:32 AM   #7
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Re: my son's pain

Quote:
Originally Posted by Titchou View Post
My sister suffered with TN for several years. She finally went to Presbyterian Hospital at U of Pittsburgh for the vascular decompression surgery. They invented the procedure there. It was very successful. That 10 years ago and she's fine today. The facial pain association can direct you to an approved surgeon in your area.
not aware of a facial pain association - but I will start looking now. Also not fimiliar with decompression surgery - will also look into that. thank you for the information. what was the cause of sisters pain?

Jerry

 
Old 04-26-2010, 04:37 AM   #8
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Re: my son's pain

Quote:
Originally Posted by jr4855 View Post
Bryce has been on and off Dilaudid (both IV and oral) many times(only med that worked) - we were at one point we thought the acute chronic facial pain might be caused by an addiction to the Dilaudid.......we made him endoure the constant pain for 6 weeks without any meds - then he had another out break of HSV on his forehead again....which increased the pain again.....which he could not tolerate that much pain without the dilaudid.....and he went back on the med until the 10 day cycle of HSV went away. He is on Tegretol now - which I do not believe is doing anything - so we are weening him off that as well. The other meds he's currently on are Cymbalta and Seroquil XR for sleep. I am seeking a TN block either in Chicago at Ill Masonic Hospital or in process of a specialist at Cleveland pain clinic in Ohio. This has been without a doubt the worst time of my life watching my son suffer. It has been on/off for 15 months with the pain and the last 4 months non stop. - Jerry
Hi Jerry

I had to stop te tegratol yesterday as i noticed a rash on my sons back. I may just be parinoid because its not a big rash but its something so im not giving him the meds till i find out for sure from a neurologist. The ER sent him home with the meds. I was just wondering was your son on Ritalin or anything like that when he was younger? Mine was. I am trying to figure out why suddenly this is happening, I am freaking out because i am reading this could be a sign of MS or brain tumor in young people. Me and my husband aslo got Lymes disease years ago and i am wondering maybe he has that. My son also has abused drugs and he had a episoid of snorting xanax before this happened with facial pain. He has also overdosed and almost died 2 years ago because he took all my pills in my medicine cabinet because he had a headach. he said he just kept taking pills cause i was not home and his head hurt. i just feel so lost and i guess till i get a specialist will i know what is going on. I wish you the best with your son as this is really scary to see happen to your child.

 
Old 04-26-2010, 05:01 AM   #9
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Re: my son's pain

Quote:
Originally Posted by jr4855 View Post
not aware of a facial pain association - but I will start looking now. Also not fimiliar with decompression surgery - will also look into that. thank you for the information. what was the cause of sisters pain?

Jerry
The TN was caused by the arterial loop pressing against the trigeminal nerve and rubbing a raw place. Malformation due to injury or a congenital defect (hers) are the usual causes. They drilled a hole in her head behind the ear and tacked the arterial loop up and away from the nerve. They then took the group of nerves (there are several grouped there), separated them and wrapped the trigeminal one with a type of teflon so that nothing could touch it and set it off again. If you do some searching you can find some good articles on it. Also, on an episode of the The Doctors several months ago, they actually showed a clip of this procedure.

I will caution you that many neurologists are not well versed on this condition. She couldn't find one in New Orleans - where she lives - who knew anything about cures. They just kept giving her prescriptions. She went online and found out about the U of Pittsburgh TN Clinic and Dr Genera (sp?) who invented the procedure. My BIL is a dentist so he wrote the referral and off they went.

 
Old 04-29-2010, 01:44 PM   #10
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Re: my son's pain

Bryce had the trigeminal neuro block 2 days ago on one side only. His fore head pain went from an 8 (out of ten) to a 5. That is the first procedure or medicine that has been effective to date - so that has been a life saver! We are planning to do other side just to rule out remaining pain....then Dr will be a bit more aggresive with another block to reduce pain on original side. Our nightmare has diminished!!!!

 
Old 04-29-2010, 05:28 PM   #11
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Re: my son's pain

If you find out what works please let me know, I dont know what to do at this point. Just got back from the ER again and he was in extream pain. I think they are wondering if my sons a drug addict because when they give him pain meds he just screams that the pain is killing him and begging me to have them just knock him out. I am just sick over this. This started on the 16 then again on the 23rd and now today. I dont understand what is going on with my son.

 
Old 04-29-2010, 06:39 PM   #12
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Re: my son's pain

Check out the facial pain association to see if they have an approved neurologist in your town. Go see that person.

 
Old 04-30-2010, 06:42 AM   #13
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Re: my son's pain

Bryce had a trigeminal nerve block done of his left side. We took a chance on that side but was a 50 - 50 shot. It worked!!! His pain went from an 8 down to a 5 (10 being unbearable pain). I am tring to convince Dr to do the same to the right side to bring it down more or rule the right side out and be a bit more aggressive in the left next time around. Other than Dilaudid....this is the first medicine or procedure that worked relieving his pain in over 1 1/2 years of searching! Mullie - if any info you need feel free to contact me to help with your sons pain.

 
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