Dad's Pain is UNBEARABLE!

Posted by Becky on April 16, 1999 at 10:07:04P3 years ago, my dad developed menigitis (meningitis)/encephalitis. On the day of admission, an MRI showed a 3cm lesion in the top of the brain stem. The neurologist started him on Rocephin and Acylovir and then proceeded to test for everything. CSF from his LP finally 10 days later showed lyme.  The Neurologist was a GOD sent person to persue a diagnosis. At the tie of his illness, only 2 other cases were known of lyme in the small SW VA town. The encephalitis was complicated with sleep deprivation, thus the MD placed dad on Chloral Hydrate and Trazadone and probably a few others(mom cannot remember) These meds caused dad more problems. He had to be restrained d/t falling out of bed(no lacerations or damage). He would also fish, work and fight in the war during the night. 14 days after admission, dad was sent home. There he was treated with IV Rocephin for 4 more weeks(and Acylovir for a time-mom does not remember how long as a precaution. After this course, dad was treated with IM Bicillin 3xw for 4 months. Dad slowly recuperated and went back to work at the beginning of the IM injections. During this time, dad developed electric shooting pains that would run his whole body and also developed neuralgia to the side of his head and ear. This pain was tremendous and constant. The Neurologist(declaring now that the pain must be from scar tissue in the brain stem- no follow up MRI after 3 in hosp) started him on Tegretol. THis did nothing except give him a constant hung over effect. So he switched to Neurontin. At the end of the IM injections another LP was done showing clearing CSF and the MD RX'd no futher abx. For 2 years now, dad has continued constant pain. He has been taking 3200mgs in divided doses of Neurontin. The Neurontin does diminish the pain ( he tried to take himself off several times, the pain becomes worse); however, the pain never goes away. It hurts worse in the wind, when mom cuts his hair around his ear and at the base of hisPosted by Becky on April 24, 1999 at 21:03:29

One more thing, please? If it is conceivable for this to be scar tissue causing all the problems; What else would there be for him to do? At this point if he continues to be told there is nothing else but to live with the pain for the rest of his life, I believe that this will cause him to seriously consider much more of an unthinkable solution. Is there any surgery, meds etc that may benefit him. Would it be out of line for the MD to go ahead and let him take stronger narcotics say duragesic even though the addiction may happen. Any thoughts on this would be greatly appreciated. Thanks Becky

Posted by CCF MD mdf on May 06, 1999 at 13:52:28
For difficult pain management problems, your dad should probably seek out a pain management expert. Usually there are multidisciplinary clinics making use of anesthesiologists, internists, psychiatrists, physical therapists, biofeedback experts, and so forth. Chronic pain is often quite challenging and you need every angle you can get, from coping strategies to just plain medications.
When I see someone with bad pain, after I am satisfied that I have ruled out some awful progressive neurologic disorder, I generally refer people to one of our multidisciplinary pain specialty clinics for that reason. If there is a way to make your dad's life easier, it should be tried.
I hope this helps. CCF MD mdf.