Hi, This is Andy's Wife Roelie...Andy had his surgery as planned on the 24th of September and at the moment he is wishing he had never had it and tried to stay on the Ocarbazepine even although it had horrible side effects. He is still having to take the Oxcarbazepine for another 6 weeks and then to try and reduce it gradually if things are ok for him to do so. The surgeon said the Surgery went well, he said he was amazed to find that it was actually the Main blood vessel that supplies the Brain Stem with Blood that was the culprit and it had squashed his Glossopharyngeal nerve so much that it had actually adhered to it, he said they decompressed it and it all looked well. Andy is worried because he is still having the neuralgia symptoms, but the surgeon said this is probably normal due to the fact that the nerve was so damaged it will take more time for it to heal. We are praying every day that this is the case and things will get better, because if he has had to go through this to be in the same state as before would be awful. Andy was in High Dependancy for 1 night and 1 day before being transferred to a 4 bed ward where he spent 9 days before being sent home. He is still feeling sickly and has pressure type headaches and numb horrible feeling on his head. This has got to have been the most difficult thing we have had to face and just pray pray pray that it will be successful!!. At the minute Andy is mentally low and thinking the surgery has been a waste of time and he has been left worse off, I am trying to keep him positive. He had difficulty swallowing and was choking after surgery and had to be fed through tube for 5 days and a speech therapist worked with him to try and overcome this, which helped and he can now swallow again, his voice is very weak and can't talk for very long and this was also a symptom of the GPN, but is also a post op symptom, so again this is making Andy think that it hasn't worked. He has muffled left ear and music sounds different to him...weird!! He just wanted his life back...lets pray he has !!!
I have noticed that some people say they have tried carmazepine which doesn't work, have you considered oxcarbazepine? It did control the pain side of the spasm for Andy but had side effects like photo sensitivity, having to be covered up in sunshine, feeling really sleepy all the time and generally feeling rotten all the time, possible causing urinary tract problems.
I am hoping Andy gets better with time. I was fortunate I awoke without pain, but the recovery was very difficult. I couldn’t see right for 2 or 3 days, I was unsteady for weeks, I choked and completely lost my sense of taste for months, my memory was affected for maybe 6 months, and I’m still a little weak. Thankfully my Mickey Mouse voice is now normal. I didn’t have the muffled sound. The worse the nerve damage, the longer it can take to recover. My thoughts go with both of you…
Tell Andy that I experienced some of the same things after I had MDV surgery, fortunately with time those symptoms dissipate. I thought I was in a tunnel most of the time because my hearing was affected, but now almost 2 months after surgery it's no longer the case. I do however, still have some ringing in the ear. The choking was immediate after the surgery as well as aspirating! I've been seen by a swallow/speech pathologist and underwent a swallow evaluation. Apparently, the muscles that prevent food and liquid from going down the wrong way are not functioning properly. I will most likely have to have Electrical Stimulation Therapy for a few weeks, 3-5 times per week until the muscles get stronger and start to do their job. As for the pain, I still experience it daily, mind you, it is NOT nearly as bad as prior to MVD. Talking is another issue, not only is it painful, but I get out of breath very quickly, this is also due to weak muscles so I will have speech therapy to help strengthen them! I'm not driving just yet because I still have pain turning my head. Like I said, time will heal, when I do have flair ups they are intense, but as time goes on I'm having less of them.
All in all, I am still very pleased with my decision to undergo MVD. I'm no longer on the Oxcarbazepine and I certainly don't miss it! Nor do I miss the Lyrica, it made me very loopy! Recovery varies for everyone, but being told the surgery was a success is a blessing, I know it was for me. I hope all who suffer with GPN success !
Give Andy a big hug and reassure him that although the residual effects of having GPN are present that angry blood vessel will no longer be an issue!
Sincerely,
Sandy
andybysea said:
Hi, This is Andy's Wife Roelie...Andy had his surgery as planned on the 24th of September and at the moment he is wishing he had never had it and tried to stay on the Ocarbazepine even although it had horrible side effects. He is still having to take the Oxcarbazepine for another 6 weeks and then to try and reduce it gradually if things are ok for him to do so. The surgeon said the Surgery went well, he said he was amazed to find that it was actually the Main blood vessel that supplies the Brain Stem with Blood that was the culprit and it had squashed his Glossopharyngeal nerve so much that it had actually adhered to it, he said they decompressed it and it all looked well. Andy is worried because he is still having the neuralgia symptoms, but the surgeon said this is probably normal due to the fact that the nerve was so damaged it will take more time for it to heal. We are praying every day that this is the case and things will get better, because if he has had to go through this to be in the same state as before would be awful. Andy was in High Dependancy for 1 night and 1 day before being transferred to a 4 bed ward where he spent 9 days before being sent home. He is still feeling sickly and has pressure type headaches and numb horrible feeling on his head. This has got to have been the most difficult thing we have had to face and just pray pray pray that it will be successful!!. At the minute Andy is mentally low and thinking the surgery has been a waste of time and he has been left worse off, I am trying to keep him positive. He had difficulty swallowing and was choking after surgery and had to be fed through tube for 5 days and a speech therapist worked with him to try and overcome this, which helped and he can now swallow again, his voice is very weak and can't talk for very long and this was also a symptom of the GPN, but is also a post op symptom, so again this is making Andy think that it hasn't worked. He has muffled left ear and music sounds different to him...weird!! He just wanted his life back...lets pray he has !!!
I have noticed that some people say they have tried carmazepine which doesn't work, have you considered oxcarbazepine? It did control the pain side of the spasm for Andy but had side effects like photo sensitivity, having to be covered up in sunshine, feeling really sleepy all the time and generally feeling rotten all the time, possible causing urinary tract problems.
Hi, it's Roelie again (Andy's wife) He is now 3 weeks post op and concerned that he is still having tightening/spasm like feelings in throat, does anyone agree that this is/could be normal for a bit yet? His Nerve was totally squashed by the main blood vessel which supplies the brain stem with blood and it had actually adhered to it. Does anyone agree with the surgeon that it will take longer for the nerve to heal and this is the reason he is still having symptoms of GPN. His voice is totally weak and he can't talk for very long, but we know that this can also take time. He is still on Oxcarbazepine and was told to stay on it for at least 6 weeks after surgery before lowering the dose. He is extremely low at the moment and I am finding it really hard to try and keep him positive about anything.....any advice would be greatly appreciated????
Yes, I do agree Roelie...I'm post op nearly 2 months and I still have the same feelings in my throat...My neuro says it is normal for some patients to experience. Again, I agree with, my pica vessel was completely entwined with my # 9 cranial nerve and for that reason recovery can be longer than most...it all depends on how severe the GPN.
Continue to encourage Andy telling him that his neurosurgeon is certain that the MVD was successful! My husband constantly reminds me of just how bad my GPN was and that it's going to take quite sometime to heal completely!
Hi, Thanks for taking time to reply. I know this makes me feel a bit more positive and I will tell Andy what you have said, it's very encouraging, thank you so much. I hope you are recovering well. Can I ask, are you still taking your meds? Andy is on oxcarbazepine and told to stay on it for at least another six weeks to see how he goes and then to reduce for a bit.