Decided that I'm going to go through with the MVD surgery. Have a consult this Monday to tell him I'm ready to get this over with and go through with it. It's gotten to the point that it has affected my quality of life. Family members yelling at me to speak up, mocking me, and saying that I'm crazy. I just want to get better and be normal again. I've had terrible neck pain as of late accompanied with my throat pain, but this neck pain has radiated down into the upper part of my shoulder. It constantly spasms whenever i swallow and feels swollen on the side of my neck where my gpn is. Also feel like I've had excess saliva ever since this all started. Don't know if any of you had this. I had a vein pressing on my nerve in the mri that convinced my neurosurgeon and the story of my symptoms. His name is Dr. Ken Casey. He is chairman of the face pain organization and has done thousands of MVD procedures. He's said he's done about 60 gpn procedures. He does not allow cutting of the 9th nerve but resection if he views if my nerve is damaged. he said he doesn't like to see cutting because a patient can have an acute hypertensive crisis and die in operating rooms. So I'm assuming he's only going to do MVD. Scared for the procedure, scared of the side effects, and scared this may not work and still be in pain. Any input on what to expect before and after surgery would be greatly appreciated. Like I said in my previous post, Im 23 years old and I have a whole life ahead of me. I just want to move on from this nightmare. Thanks.
You have one of the most top notch, experienced and well liked/respected neurosurgeon in the US. You should feel very comfortable with Dr. Casey's recommendation. I do understand that recovery can be rough, being young is in your favor. I will be thinking good thoughts for you for positive results and a speedy recovery.
It IS scary…and that’s perfectly normal. You sound like you are ready mentally and emotionally and that’s very important. Also, you sound like you have confidence in
your doctor and that is important
too. I’m sorry your family is not more of a support for you. You will need one of them or a good friend that will help you in your recovery those first few days home. For some strange reason, and no one knows why, I was very nauseated after surgery. It just happens sometimes, but is definitely not normal. It just required a couple if unexpected days in the hospital. I only tell you this because you asked about what it was like. Also after surgery, there was NO MORE pain, so you can look forward to that. It made that first week all worth it once I made it through. Then there was no strenuous exercises for at least 3 months. I could walk or get on a seated elliptical, but no jogging or weight lifting. You need to give the soft tissue in your head a chance to heal, so just plan on taking it easy. Also, the area of the incision is still a bit numb (I had my surgery in Dec. 2013), but I have slowly been getting the feeling back there as well. My hearing in that right ear (my GPN was on the right side) was affected right after surgery, but that lasted only 2 weeks and came back to normal. I’m sure you will be fine and you may experience your own set of bumps, but to not have the pain is getting your life back! You can do it! Just stay positive and have folks praying for you. Let me know when your surgery is and you can add me to your list of prayers warriors.
My best to you - caroline
I’m so sorry that your family is not more supportive. Unfortunately this is one of those conditions which is hard for others to really understand.
I had excessive saliva, pain when speaking, and the sound of my voice affected with my GPN as well as other symptoms. By the time I had my surgery I was finally admitting how bad I was and I was really in a great deal of pain. I don’t know how it will be for you, but I felt better and my voice sounded normal in recovery. The Dr knew my voice was affected and he was still shocked by how different I sounded. I felt like my Fairy Godmother had waved her magic wand.
Being scared is perfectly normal! I ended up watching videos of the type of surgery on YouTube before mine, but I’m weird and like that kind of thing.
I do remember that I wasn’t allowed to pick up anything over 5 pounds for a couple of weeks after. That ammount gradually increased. I had my kids picking things up for me all the time.
I was a wee bit unsteady for a few days after, but still able to go for walks. My hearing was affected on the right side for a month or two, but seemed to be limited to music. I would leave during that portion of church. It wasn’t that I couldn’t hear rather that it seemed too loud.
I will be thinking about you and wishing you the best possible outcome.
I too had some fear, but the fear of the surgery was far outweighed by the reality of the pain. I knew I couldn’t live with it for much longer.I looked forward to the surgery as a salvation from my living hell. I was a prisoner in my own body and the warden: I had control of the pain. All I had to do was starve to death by not eating, and not swallowing, talking, laughing, coughing, stretching…
Good luck. Those of us who have had GPN know how bad it can be.
I awoke from my MVD with no pain, but in respiratory distress, and postop nausea was bad. Dizziness, double vision, later difficulty swallowing, Mickey Mouse voice, took days to months to improve, but it all went away. I also lost my sense of taste for months, but that too returned over time. Above all, I was weak/tired and my judgement suffered. But it was all worth it. I have my life back.
Get lots of rest. If your sleeping patterns get disrupted get help with that… I Wish you well! Your recovery should go better since you’re young…
Dear Lord: Watch over our friend Tony. Give him the strength and peace that only you can provide. Let him know he is lifted up with a host of friends, far and wide. Watch over the physicians. Be with them and hold their healing hands in yours. AMEN
FYI on the salivation. I have also had excess salivation problems (and the feel of a lump in my throat)--usually when I have a sinus infection. My ENT prescribed Robinul, a gastric/ulcer med that has a side effect of slowing salivation. I get some relief from that.
Guys, I am still considering Pittsburgh; I would be prepared to find an apartment and stay a month to six weeks. I am unable to fly as it exacerbates the gpn pain. Is 4-6 weeks enough post-op time to know you are doing OK? I'd rather stay than travel back and forth. It takes us two days driving to get there. I'd still go back for further check ups, but I am mainly wondering if the first six weeks goes well that it would be safe to go home. Once I have surgery out of town, I don't think the locals are going to want to treat me.
Tony, if you are going to the University of Pittsburgh there are several Family House's (familyhouse.org; 412-647-7777) that have lodging with shared kitchens, family rooms.... and there are buses that go routinely to the hospital and campus. They are there for families going thru chemotherapy, long recoveries any thing from a short visit to a long one (you don't need to give them notice of how long you will be there. Once you have a room, you have it for the duration). I highly recommend them.
Wow, sounds the "cards" are lined up in your favor. From everything have heard and seen on U-tube Dr. Casey is your guy. He seems so down to earth and knows that you and your family are nervous (rightly so) and will address that as he would his own family member. Keep us posted - I think good things are in store for you.
Tony,
I had the MVD for the 9th and 10th as well as the cutting of a vein that was tangled in the 5th.
It’s great that Dr Casey is so close to you now! If you do end up going to Pittsburgh, I too recommend Family House. They were wonderful! My surgery was the day before Thanksgiving and I felt so much better knowing that my husband would be with such caring people. They even had Thanksgiving Dinner.
As far as needing 4-6 weeks, everyone is different, but I think you’ll be surprised. When I had mine I drove from Tennessee to Pittsburgh on Monday, had my pre-op appointments on Tuesday, surgery on Wednesday, spent two nights in the hospital, follow-up on Monday or Tuesday (sorry, I can’t remember), and was home by Wednesday night. I had a check-up with my primary care doc when I returned later the next week. I was surprised by how quickly I was feeling better.
I must say being able to eat without pain goes a long way towards recovery especially when the thought of eating was something I had to force myself to do before. I think you will be pleasantly surprised by how much better you’ll feel. I was able to manage any discomfort I felt with plain old Tylenol.
Hi everyone. My Jane is Sandy. I live in England. I have been reading and re reading all your comments and advice to each other. Wish I lived in the Us as I have glossophrayngeal neuralgia . I finally got to see a neurosurgeon in London last Friday and he told me he suspects I have a blood vessel pulsating on my g. Nerve .He wants me to go into the national hospital for neurology and neurosurgery which is in London for fueprther test including an MRI and 3d ct scan plus other tests including EET as the other acts and the other MRI tess I had done are not the ones I should have had etc. he said he thinks I will need an MVD and I am really scared of this. Reading all your comments though helps me. If there are any people in England or the United Kingdom or anywhere else who have had an MRI in this hospital please post a reply to me. The specialist I saw was a guy called mr kitchen. Do so hope your MRI works out really successfully and that it ends for good your GN pains. Xxxx
Hi, my name is Andy and I live in Scotland and I am having MVD next Wednesday 24th Sept..Yikes...i am terrified but due to me having no quality of life at all and my family are suffering so much, I have no choice. The meds I am on Oxcarpazepine are only just controlling the spasms and since being on them I have managed to put all the weight I lost when I was at my worst (almost 3 stone). The meds have horrendous side effects too which doesn't help. I needed to get healthier or they wouldn't consider the Brain Surgery when I was at my worst, I was way to weak. I wanted to give up on life itself I was so bad. I have gone from being a very active guy who loved to do exercise, weights, going for walks, camping with the kids etc to being able to do NOTHING! This is a horrendous Disease and no one should have to live with it.
Andy
Wish you well. I’ve been in your shoes, had horrible pain off and on for 6 years, last episode was six months. My MVD was successful, but it was a long road back. Be prepared for weakness and odd side effects.
You have youth on your side! Stay positive and strong. You can also feel extremely confident in your neurosurgeons ability to perform MVD surgery being he's got 60 GPN's under his belt! My neurosurgeon told me the same about NOT cutting the 9th nerve or the Pica artery, that's also a positive. Keep in mind that everyone's post op and recovery are different.
I underwent MVD on my right side (craniectomy decompression of Glossopharyngeal nerve) on August 28th, 2014. My stay in ICC was longer than expected due to migraine headaches, nausea and vomiting, although the GPN pain was nearly gone! I could move my neck, swallow, and talk with a lot less pain. The surgery was a success! But I have to tell you I was really cautious when it came to the area of the incision! I didn't even want to look at it!
As for my recovery, I take it day by day! I was told recovery can take 4 to 8 weeks.(or longer) The hardest thing for me is not being able to things. I've always been very active, but I have very low blood pressure, so I tend to get dizzy when I get up too fast. My Dr. says I should only drive if I'm not having any pain turning my head, but because of the low blood pressure I'm not able to just yet. I'm so enjoying eating again! I pray daily and I thank God for seeing me through all of this. I stay positive, knowing that things can always be so much worse!
You'll be in my prayers. Any questions, please write me and if I can help, I will.
