Thank you for sharing your journey. I am having MVD on January 14th and it is so comforting to be able to see what others have experienced. Similar to what they found with you, the neurosurgeon was not able to confirm that there is an artery compressing on a nerve in previous MRI's and MRA's but we are going through with the surgery. He feels that it just might not be seen on the MRI which frequently occurs or I guess like they discovered with you it was something slightly different when they got in there. Perhaps your video will be posted before my surgery and I can show my surgeon so he can be prepared for that possibility too. He is a great surgeon so I am sure he will be able to handle whatever he finds but it can't hurt to see something different is what I say. I hope your recovery is continuing and your pain and discomfort are declining with each day.
Hey Holly unfourtunatly for me the Mri showed a artery compressing the nerve my surgeon pointed it out and printed it for me were he circled the area but once he went in there was no compression he even said he wasnt very impressed with what he saw he did clear some scar tissue and still add the teflon but im feeling this wasnt my issue my throat still has a acid reflux,mild burnin sensation just above the throat in the back of my mouth on the right side and the same feeling of infection ive had for the last 13 years my ear feels slightly better but the more I heal up the more im feeling that this surgey didnt work for me I never experinecd the shocking pain described on the internet my was more a 24/7 dull feeling in the back of my throat ear fullness ,swollen lymphnode feeling all on the right side which has also been present since it started 13 years ago.I saw you had eagles ruled out but must warn you that if your neuroligist did not know to look at your ct in a 3d type image I think called a tomograph he will tell you ,you dont have eagles it took me 10 years to get diagnoised correctly and even with the diagnoises and panoramic x ray tooken by a oral surgeon in hand the ct was ordered by a ent and he told me I didnt have it the part 3 video i point it out might be worth getting a copy a panoramic from your last dental visit and look for yourelf ,my scar is healing fine and been driving and walked around I do have the surgery video up as part 4 but only the last 14 ,minutes will try to get the first half up had trouble editing it but should get to it by next week also will post a video of how feeling in a week or 2 Take care and Good luck
I am so sorry that your surgery was not the success that you and all of us had hoped it would be. It is hard taking the chance with MVD knowing the risks and knowing the outcome is not guaranteed and going through with it. I know with many of us, me included, the pain has just gotten to a point that we are willing to try anything. I am sorry that your journey for a solution will continue. My prayers will continue to be said to help in finding a painfree solution to whatever it is that is causing you all of this pain and discomfort. I want to thank you for all of the information you have given me. I have recently had a panoramic at my dentist so I am going to obtain that this week. I know I did not have a 3d type image to rule out eagles syndrome years ago when they did rule it out. I like you only have the pain on my right side but I do have the debilitating waves of "electrical" shocks to go along with the constant soar throat and constant ear ache that I experience. I have multiple sclerosis which could be also causing the gpn and if that is the case my surgeon has told me that the MVD surgery will not work. I could have a lesion on the nerve causing the gpn if I am understanding my surgeon correctly and not an artery pressing on the nerve. I think I will have to wait and see at this point, but I am going to bring up the point you mentioned. Thank you so much. Now I am off to watch your video.
Thanks Holly interested if you find a caulcified styloid that’s the problem with eagle syndrome it seems like a little less then half the people who get the styloid removed still have symptoms it helped a lot but there is no answer for what to do next if the symptoms are still there .Since I read the styloid can cause gpn I went to see a brain surgeon to check for it ,really looked like a compression he even printed up 2 pages and circled it for me just my luck it showed on the symptom side at least any thing I do from here will be a walk in the park lol I’ve seen 7 Ent the last 13 years but it seems so strange to have a sore throat with no sight of infection my next step is to work on allergies and maybe see a rheumatologist but I’m just describing my symptoms and history hopefully my surgeon will help with answer I think the fact I don’t have the shock like electrical pain should of been a concern to him but the MRI showed something oh well good luck
How are you doing? I am praying that some good came out of your procedure. I can't imagine having gone through all that and no benefit. Do you have any side effects from the procedure?
Only a stiff neck under the incision but im sure now it didnt do anything he saw a compression on the mri but there was nothing inside me even when I watch the surgery video I got there is no artery or blood vessel yet he still put teflon in its been almost 2 months started working 3 weeks ago not sure what to do now my talk to my insurace they say I can file a grievence were they will investigate what went on ugh my pain is in the back of my throat on the right side its kind of a light burning sensation followed by a cool spot almost like there is pepperment on my throat in one spot not sure what to do now really feel like this set me back Are you back to work?
Oh my goodness. I am so sorry that you went through all of that and still have pain. Keep your spirits up. Something has got to give. I will continue to hold you in prayer for healing and answers. I am not back to work yet, due to vocal cord paresis, but should have been. It was paralyzed from the MVD. The 10th nerve, vagus, plays a role with the laryngeal muscles. Both the 9th and 10th nerves were bruised during the procedure, resulting in this condition. It is improving ever so slowly with speech therapy, yoga, and prayer. I run out of breath speaking, have choking fits, unproductive coughs, and can't carry a conversation with more than one person, drowned out by background noise. My voice is getting stronger, less squeaky. Eating is still problematic, from the paresis. It is hard to swallow most foods. Speaking is my livelihood. I teach in a middle school. I feel good beside all of that. No pain. It can heal spontaneously or continue at its own pace. Only time will tell, but at least I feel small bits of progress each day. I am making the most of this healing opportunity. I just pray that there is some relief for you and the others of us that suffer from this miserable condition.
Donna I am sorry that you are having trouble with your vocal cords and such. But, I am so happy that your MVD was successful. It seems that your vocal cords and difficulties swallowing will resolve themselves in time whereas the pain from gpn just seems to never end. I will pray for a return to full function of your vocal cords and swallowing capabilities. I myself had MVD on January 14th of this year. The surgeon says he found just what he was looking for and put the teflon in and all of that but I feel no relief from the nagging ear ache and the soar throat that I have suffered from for the last 15 years or so plus the electric shocks that run through my body that seem to, as we say 'break thru' the high dose of topamax that I am on. The main reason I had the surgery was to try to get off of the topamax or at least to be able to lower the dose. The medicine has been effective for me when no other medicine or combination of medicine had offered me any relief from the 'electrical shock like' pains that would course through my body periodically. But the side effects of topamax on my brain and cognitive thinking abilities are barely worth the trade off. After surgery I, like I said continue to have a very soar throat and ear ache. The surgeon feels that this may be caused by the surgery and his manipulating the nerve may have traumatized it. From my last appointment they said to give the nerve another 4 weeks to heal so on that time table I still have another 2 weeks to be patient and wait. Hopefully I will be able to say that the surgery worked then, but at this time, 4 weeks post surgery I have no relief, but I am trying to be optimistic that I am still going to get some relief. For those contemplating MVD surgery, the surgery was a breeze. Listen to your doctors instructions. Do as much as they suggest, don't over do things, you are going to be tired and not understand why listen to your body.
Sorry to hear that Donna must be rough dealing with voice and throat issues,that’s to bad Holly that you are not feeling any relief I still got the sore throat on one side they tried to tell me up to 3 months I’m not sure if I even want to go back to my Dr I feel like he failed me and set me back .
Deleone,
I didn't realize you had and are still having throat pain on one side. I don't think I said it, but my throat pain is also on the one side, of course, the side they worked on. I feel a bit frustrated because the doctor found exactly what he was looking for in that he, if you recall, didn't have any MRI's or MRA's showing the Ninth cranial nerve let alone pictures of it compressing or even touching the artery but I wanted to go ahead with the surgery hoping that was what they would find and not that a lesion was causing the problems or it was something different altogether. When the surgeon came out of surgery and told my husband that he found exactly what he was looking for in the nerve was compressed against the artery and he was able to clear the two apart and insert the teflon or whatever and everything went text book if he could ever have a text book surgery and now I am 4 weeks post surgery and no relief at all AND I have new problems. I am trying to stay positive but some days I feel defeated. I think though that those thoughts are of no good to me and I need to just stay positive.
I am so sorry that the surgeon didn't find the cranial nerve compressed when he got in there. That has to be so frustrating for you, especially since you have had so many other procedures to eliminate other possible causes for your pain. I was really praying for this to be the solution to all of your pain. I know and understand your frustration. I have no suggestions for you but I do hope you find answers for your pain.