I am new to Neurotalk and need more information as to what is happening to me.

October 17, 2011 I had my third bi-lateral RFA for Chronic cluster/migraines. Each has been a Godsend with the headaches, but the nerve pain afterwards is excruciating!

This ablation has left me with shooting pains from the lower part of my neck up into base of my skull. My neck is severe to the touch and sometimes swollen. THe shooting pains are about every 2 minutes and unbearable... they literally take my breath away and it is near impossible not to scream out in pain. They start at the base of my skull and shoot up into my head. It hurts worse if I bend over, lift my arms, lift anything over 10 pounds. It is like someone is shocking me with a prod.

The past two ablations I had pretty bad pain afterwards, but this time it takes the cake. My doctor is amazing and very uinderstanding, but nothing has worked! I am on neurontin (which only helps with sleep), Topomax, lidocaine cream and patches, therapy... nothing works. Pain pills do not work... nothing.

Life is difficult, to say the least. I have learned over the years (36 since a horrific auto accident) that pain is a very lonely experience, no one can understand, you are alone with it.

Does anyone have any ideas or experiences to help me? I am desperate.

Thank you, Happygma

Hi Happygma,

How long do these after-effect pains go on? Is the DR doing the RFA a headache specialist? Is this all the same DR, or are two or three involved? (Trying to fit the pieces...)

A headache specialist may know of another treatment (or another way of doing the RFA) that wouldn't result in the after-effects.

Doc

You may have suffered either transient or permanent nerve damage.

There are two types of Rf; high temperature thermal ablation (this damages the nerve) and low temperature pulsed Rf (this temporarily impairs the functioning of nerves but doesn't do any permanent/irreversible damage).

By your description it is not clear which technique was used or if you had the lesioning done peripherally on the occipital nerves (upper neck/skull base) or at the C2 ganglions and possibly C3 nerves (deep in the neck at the level of the spine). Each location has its own set of potential complications, some similar and some different.

One potential side effect of the high temperature thermal ablation Rf is that it can produce worse pain then the original complaint being treated in some people (anesthesia dolorosa which describes a terrible pain in an area that is numb because the nerve was damaged).

Unfortunately there are just too many "pain specialists" who end up doing high temperature thermal ablations. Some patients are lucky and may do OK but life can be torturous for the ones that have unwanted side effects from the procedure. Headaches are best treated by a headache specialist and not a typical pain management doctor.