I joined this group about 5 months ago when my mother, 60, was diagnosed with GPN. She was hospitalised to manage the pain and do the tests and about 2 months after that the medication started working (Lyrica 300mg and 400 mg Tregatol twice daily). After a month she was feeling great and started to lower the dose to just 150mg Lyrica twice daily. Unfortunately the pain has returned about a month ago and she is back on 300mg Lyrica and 400 mg Tregatol daily. Is there anyone that has been able to use drugs to keep this thing under control successfully (pain free for a substantial amount of time) or is the ultimate solution to do the surgery, whether it's the rhizotomy or MVD ?
Hi sonelle everything that I read leads me to believe meds are only temporary, surgery seems to be the only permanent fix, a rizotomy. Some meds make the pain bearable if u can take the side effects. good luck
Thanks Chris, I was scared that would be the answer.
Did you have the surgery ?
My experience was that the drugs would do the job whenever the GPN would come back, which was perhaps every 1 to 1.5 years. It would come, get under control with drugs although the zombie part of it was not fun but at least i could function and work, finally go into remission where i could get off the drugs for maybe a year or more, and then it would repeat itself. That had gone on for 12-13 years (they really did not seem to be a lot of the surgeries that far back). But i would be pain and drug free for months, it would begin again and it would take the drugs a while to fully kick in (admittedly it would be hell for a while), then it would stop for a long time, and repeat. For a long time, that was acceptable.
the problem was that over all this time, the remissions were becoming not as long, the episodes of GPN went from a month to few or more months, and more importantly, it was taken more and more and different drugs, alone or in combo, to control it. The final and hopefully last episode was 5-6 months, very high levels of Neurotin and Tegretal (maybe Elavil but i can't remember; remember, I had brain surgery [now a good excuse when i can't remember someone's name which i have always been bad at]). My fear was that i was getting to a point where it might get even worse without the ability of the drugs to really work anymore. I think this increase in the problem over time and need for greater and more drugs is characteristic of GPN. But it finally got the to time where the surgery was the way to go. My decision to not have it earlier had more to do with the hassle and time needed for surgery rather than any fears. I have had a number of major surgeries, and they are what they are. It is just a hassle, but i decided that i had to do something different. And because the surgeries have become more common or at least accepted, i felt better about doing it. And as i have commented in previous posts, the rhizotomy was based on my surgeons refusal to do MVD for GPN. Good luck
Thanks fot the info. The pain has made the decision for us. My was admitted to the hospital over the weekend with severe pain, not even a 100 mg of morfene did anything. Any way id she booked to do a rhizotomy on Wednesday. I'm scared as hell, but she says she can't take it anymore. Does anyone know that the mortality rate on these kind of operations are. And are there any heavy complications that we should be aware of ? Also did you have a feeding tube after the operation ? More info on the operation and what you felt like when you first woke up would be great. Would like to prepare her the best i can for what to expect after.
I have no idea what the mortality rate is from this specific surgery. Keep in mind it is considered brain surgery, and all the general problems that can occur from surgery (i.e., infections, etc.). I personally did not feel that concerned when i had mine, although I had had two open hearts before so i was pretty used to all of it. I did not have a feeding tube or anything. Actually, was surprised on how not-a-big-thing everyone seemed to be. Actually, except for a headache and general just-had-surgery feeling, it wasn't that bad. However, i am not troubled by having anesthesia, while i know some people are. It does take me days to get over feeling drugged, but again, that is probably from anesthesia. However, i would rather be really tired for a few days than sick from the anesthesia. (I do have a problem with anesthesia and urinating, but that is a different problem and embarrassment). But just remember it is major surgery and you will feel it, although hopefully not that bad. Just tell yourself before and after the surgery that you will be going through or just having had a major hit on your body. In terms of getting better day by day, try to judge how you felt 2 days ago, and not yesterday. When i compared today with 2 days ago, i saw improvement. When i compared today with yesterday, it was often not that much better. Just keep up the spirits and believe it will get better! Good luck and just be there for her. And give it all time.
Thanks for the info Ron. My mom's op is going to be between 5 and 6 hours. How long was your op ? The doctor mentioned stroke and brainstem stroke as some of the complications on the table. Are you aware of any of these ? He mentioned that he might consider doing an MVD depending on what he finds when he opens her up. Any thoughts on that ?
Also, has anyone heard of any South African doctors that specialize in this prodecure ?
Sorry, I know my questions are all over the place, but this the only place where have been able to find answers.