After having MVD last Sept due to an artery compressing the nerve, pain slowly started to return in Jan. I secured an appointment after waiting over three months and with many cancellations from the neurosurgical team at my public hospital, where an MRI was requested to see if there was any obvious cause of why the pain had flared up. Then after a five week wait to get results, I was called up an hour before my appointment today to be told that my MRI results were missing, and if they couldn’t be located my appointment would have to be cancelled and rescheduled for another day.
Moments later the phone rang again, they had located my results but didn’t have time to review my case before my scheduled time with the neurosurgeon. My appointment was cancelled. Devastated I burst into tears while on the phone, something I have never done before.
Obviously I am stressed and very anxious which does nothing for pain levels. Am now awaiting a “virtual appointment” - basically a phone call, with the MRI results as I am tired of cancelled appointments and having to take time off work. I have no time line as to when this will happen.
Am so tired of trying to stay positive and keep soldiering on and having to cope with anxiety from the unknown. It would be so nice to be treated like a person whom has feelings, rather than just a case.
It is awful that this has happened, sometimes I wish they could experience this terrible disease for just one day, you can bet your life if it was them they would be more than just crying on the phone. Stay positive and try not to stress too much as that makes it wworse as I'm sure you know. You are coping with so much just know and my heart goes out to you. Keep phoning them if you can to get more than a virtual appointment. Sometimes we have to take the bull by the horns and insist on appointment. I feel at times they don't mean to be unkind they are just thoughtless and are afraid of an illness that shows up how much little they actually know how to help.
At this point I am not considering further surgical treatment, definitely not a second MVD. I have been offered a ballon compression, or more medication. I am terrified of both options and do not really want to choose either option. My MVD has left me with partial numbness near mouth on side of face that was operated on, that makes me feel like a freak. The medications scare me due to having acute pancreatitis a few months after my surgery which they could not find a reason for, and suggested it may be due to the large dosage of carbamazepine I was on. I am scared that taking meds at high rates again will cause other issues somewhere down the track. Besides the other effects of medication - especially the drowsiness is not ideal with four children to care for - also I have just started helping teach children this year as a remedial teacher, this I love and am worried I won’t have my wits about me to continue if I start taking meds again.
I live in New Zealand, yes my neurosurgeon is highly skilled and has done plenty of successful MVD’s according to his word. I think it was just a regular MRI they took, it showed up clearly the last time. I do not expect anything to show on this scan, I feel so very silly feeling so emotional when I already am partially aware of the outcome. I have pain and there is no guaranteed solution, yet I still find myself feeling devastated after each appointment. As deep inside I think I am holding out for a miracle. So very hard to explain.
Thank you so much for your support, it means so very much.
Melissa
I understand your fear of another surgery, but have you looked into peripheral nerve stimulation? It is a surgically implanted electronic device that is for pain control. The procedure is very minor, as the wires and battery are implanted just under your skin, and it is done on an out patient basis. I had mine implanted in August, after an MVD in January failed to control the burning boring ATN pain, and it is working very well!
Feel free to ask me any questions,
Christine
I am not sure if they do implants over here, I have not heard of it being an option, it definitely has not been offered to me. As far as I am aware there are three options; meds, MVD, and if this fails balloon compression surgery. We are a little archaic when it comes to some parts of our healthcare. There is no where else to go, as the surgeons that work at our public hospitals also hold private clinics as there just isn’t the population to support them otherwise. It sounds very backwater country, lol!
I am on my second nerve stimulator and believe I was one of the first in the US to get one. My first one was put in May 2008. At that time I had never heard of it and it wasn’t offered to me anywhere. I found it after my Neurosurgeon told me about a surgeon who normally implants them in your back, but might consider putting on in my face.
I really lucked out, he took my case and put one in. If that had not happened I would not be alive today and would recommend it to anyone suffering with this pain. It only helps with the pain above and below my left eye, but boy does it help those areas!
The pain directly in my left eye stills hurts terribly, but ill take it. It’s worth it if you can get it.
Unfortunately no one is going to offer this to us yet, we just need to keep pushing until we get them. In my case, my insurance company approved it, even though it is not approved by the FDA, because I was in the ER 2 - 3 times PER WEEK for over three years! I’m surprised I’m alive because our bodies just can’t take after the severity of our pain.
Currently, the PNS manufacturers are petitioning the FDA for approval because of the amount of success we are having.
I hope you find relief soon!
The pain management group i was recommended to also adapted it from a back procedure.Can i ask?Why did you need a second one?I've recently had a successful gamma knife procedure,but this will be my next weapon if or when the monster returns.
MSandTN said:
I am on my second nerve stimulator and believe I was one of the first in the US to get one. My first one was put in May 2008. At that time I had never heard of it and it wasn't offered to me anywhere. I found it after my Neurosurgeon told me about a surgeon who normally implants them in your back, but might consider putting on in my face. I really lucked out, he took my case and put one in. If that had not happened I would not be alive today and would recommend it to anyone suffering with this pain. It only helps with the pain above and below my left eye, but boy does it help those areas! The pain directly in my left eye stills hurts terribly, but ill take it. It's worth it if you can get it. Unfortunately no one is going to offer this to us yet, we just need to keep pushing until we get them. In my case, my insurance company approved it, even though it is not approved by the FDA, because I was in the ER 2 - 3 times PER WEEK for over three years! I'm surprised I'm alive because our bodies just can't take after the severity of our pain. Currently, the PNS manufacturers are petitioning the FDA for approval because of the amount of success we are having. I hope you find relief soon!
I had a second one put in because the first failed. All of a sudden my pain started feeling like it had before the implant. It was supposed to last ten years, but mine failed after only three years. It was never proven that the battery failed because the charger I was using wasn’t the one “paired” with the battery. It was quite the ordeal and to this day, my rep still doesn’t understand why I wanted a new charger when they replaced my entire device. In fact he never even ordered it, a new charger that is. We went rounds and eventually I received a new charger, the one that was paired with the device.
So if you get one, and I wouldn’t live a single day without now, make sure the manufacturer rep that attends the surgery knows what the are doing.