SEVERE FACIAL/SCALP/NECK Pain 8 years

[mary001]

Following a Rhinoplasty operation 8 years ago, I have been left with constant burning, pulling pain right through the head, neck and scalp regions. The pain was originally in the cheeks, nose and forehead areas, but now it has spread to the entire head and neck regions.
I have constant severe facial pain and numbness and over the years thisw has progressively exacerbated, until the point where it is now unbearable. At the start it felt like Neuralgic type pain, but now the is persistent pain in the whole bone of the skull, and I have been experiencing Facial Swelling.
I have also severe pain in the neck, and this travels up the back, sides and top of the head causing severe headaches and also severe scalp pain and sensitiviy. This shooting pain has been in my scalp for years and I am now experiencing hair loss. I notice that when the pain in the neck is particularly severe that my scalp is very tight and tender, and pulling/burning like a graze burn.
It has got to the stage where I can no longer tolerate the pain and I am having no quality of life, despite being a University Graduate with the Highest Honours.
An MRI Scan showed evidence of Trigeminal Neuralgia by my ears. Also it showed a congenital anomaly at the craniocervical junction, with bony involvement, which has been getting progressively worse over the years. The anomaly is located at the c1-c2 level.
It also showed marked disc degeneration, prominent posterior osteophytes and narrowing of the neural canal.
In short there is severe pain at the base of the skull and this seems to be causing referred pain elsewhere.
I really can't emphasise enough the level of pain  that I am in, and it is beginning to have a negative impact on my overall level of health.
I am 34 years old, and also suffer hypertension and raynauds disease.
I have arrived at my wits end and would be extremely grateful if you could help me in respect to the above.
Thank you very much for your kind attention.

Mary

[grace2222]

dear mary,
i have all the same symptoms, also after a rhinoplasty. they have thought it in my
case i may have some sort of herpes brain infection...chronic, hard to diagnose.
the nose has an olifactory gland that when traumatized may cause an activation
of this virus...i had a trial of acyclovir which helped alittle, but seems i will have to
have a temoral lobe decompression. let me know how you do,if anything helps etc
i have poor quality of life also. need help and answers if you find any, please write me,
gracejo22@peoplepc,com

[Bob590]

My problem (posted about two weeks ago, but I can't locate it) is not nearly as severe as yours, but you have both thrown some light on it, if not exactly offered a solution.
I complained of spasmodic tingling scalp sensations (more 'electric' than itchy) on the left side of my already balding-on-top head. These have resulted in excessive balding on the LHS of my scalp. The general balding is no worry - it's a family trait. But the lop-sidedness is worrying. And it has never struck me that the rhynoplasty I had five years ago ( to build up the left septum after a too-enthusiastic sub-mucous resection on it several years earlier) could well have been the cause.
My GP (I'm English, living in London) has never had a clue - nor shown much interest. I've often wondered if there isn't a mild sedative-type drug I might take to calm down this (quite minor) irritation. Any ideas?
NB. I'm fit, sporty and in very good health. i.e. I'm 73, played amateur league soccer till I was 50, and now run and play tennis several times a week. No health problems.
It looks to me as though rhynoplasties might need a lot closer observation than they
have been accorded hitherto.
bob

[paindoc38]

chronic post-surgical pain syndromes have been reported after virutally every surgery, hernia, breast, abdominal, jont replacement etc. In all of these differnt surgeries the rate of severe pain is as high as ten percent. most often these pains are caused by injury to a samll peripheral nerve during the surgery.  Since every part of the  body has nerves running through it (so you can feel everywhere) the surgeon has to cut some nerves to do any surgery.  often the site of nerve injury is where the skin was cut--ie the injured nerve is at the site of the visible scar.  In these cases often squeezing the scar or tapping the scar will markedly exacerbate the pain--but the only way to know for sure is to put a small amount of numbing medicine into the scar and see if the pain is temporarily better.  I storongly beleive you had a small preipheral nerve injury during your surgery.  these skin nerves despite being superficial often create the sensation that the pain is deep.  furthermore in the head and face area any severe pain in that area gradually is felt as more difuse , more constant over time and harder to localize as the way your brainstem processes the pain signals becomes altered.  I have seen this problem after face lifts but not specifically rhinoplasty-- with a rhinoplasty the scar my be in the nose itself--if not have your pcp inject your scar lines with lidocaine.  If you have an injured nerve there generating your pain (a so called scar neruoma) you will get a terrible pain when the doc is injecting for about 30 seconds and then as the numbing effects sets in your pain will get remarkably better temporarily.  

even if your local doc knows  nothing about scar neuromas they should know something aobut neuropathic pain and they best treatment for it.  thinkgs like desipramine started at 25 mg a day and titrated up to 150 a day over a month. gabapentin 300mg once a day titrated up to 1200 mg three times a day etc

the stuff above is medical advice that you should not follow unless and untill advised to by your doctor.

I am a pain doc at stanford
I am not available to talk about things like this over the phone or by email--so please dont barage me with questions, but if you run into a dead end in your area and want to come see me  I would be happy to see you myself on the rare days I am in the clinic ( spend most of my time doing research.)

good luck and hope this helps--you just need some expert guidance that you wont find at your local surgeon, pcp, or doc in the box pain doc.

refractory cases sometimes respond when in the face to motor cortex stimulation too

the person in london may have something differnt --like an unusual occcipital neuralgia but simmilar medication also might work for him
Ian Carroll MD
Stanford