facial paralysis

[macehall]

Hi,

I had an 1.5 cm AN removed August 6, 2019 using the RS approach. After surgery, the surgeon said my facial nerve was preserved; however, he wasn't sure about my cochlear. By 24 hours after surgery, I had complete facial paralysis (HB 6). Since, I have some improvement probably HB 4. Now, I am being told that I need to look at doing nerve graft surgery.... Geez! The last thing I want is more surgery.

I see a wonderful OT/PT who specializes in facial paralysis and vestibular issues. She has me doing all kinds of facial exercises. I am also taking extra vitamin D, C, B complex, St John's wort and a multi-vitamin as well as eating a diet high in plant based protein to promote healing. At month 3-4, I saw lots of improvement. However, now this seems to have slowed.

At times, I have severe shooting pain in my affected ear canal. Could this be nerve re-growth? I also get shooting pains in my head on the affected side as well as the sensation of worms crawling under my skin. Frankly, I look at all this as a positive as it means something is alive. I am wondering when I should give up on FN recovery .... and anything that can further assist in my healing.

Thanks, Mace

[golfguy49]

After the doctor told you the nerve was "preserved" and then you had severe, paralysis, what did he say?  Did he represent that he thought you should have full function and yet you have serious paralysis?  That seems like a huge swing in actual results vs. expectations.  I don't know much about the FN recovery process, but I have read about nerve grafting and such, so it seems recovery may be possible with the right doctor and approach.

[alabamajane]

Mace,,
Sorry for your post surgery symptoms,,, like Golfguy says that seems like a huge swing in experience vs expectations,,,, wonder what your Dr thinks is going on. It’s rather odd that he would jump to a graft if he felt the nerve was intact after surgery. Perhaps, and this is just my anecdotal thoughts,, the nerve was injured and will improve with some more time and healing,,, is there another Dr with whom you could consult ,, or did consult before surgery,,  that you could get some advice?? Second opinion??
 
As far as the nerve graft,, I had the 12/7 nerve graft done 4 days after my AN translab surgery. But then my facial nerve was severed during surgery due to tumor had grown through the nerve. So I knew my nerve would not get better on its own. The graft was not a “ bad” experience as far as a surgery goes but then I was sorta out of it since I’d just had the AN surgery,,, it’s all a blur,,,, this was 8 years ago also.

I was told it would take 12-18 months for the graft to take and I would begin to see improvement,,,, i did begin to see improvements within about 6 months but the entire process was much longer.

I would think that the feelings you mention would be positive signs that some improvement in facial movement were happening,, just my thoughts,,, I remember some tingling sensation when my nerve was regenerating after the graft surgery.

These are just my thoughts,,, take it for what it’s worth,, but I wanted to respond and let you know you aren’t alone in this struggle. My graft was very successful and to look at me you can’t tell face is still a little paralyzed,, of course, I don’t have a full smile,, but there are other surgeries that will give you a better smile.

Good luck in your recovery,,,,
Jane

[macehall]

Thanks y'all,

So you know, I consulted a number of doctors around the country before surgery. All have done over 500 of these surgeries. The two at Duke and House wanted to do TL. Then, the doctor at Johns Hopkins wanted to to do RS but didn't give me much hope of preserving my hearing. So,  I went with a doctor in Seattle bc he thought he could preserve both my hearing and FN. He's done over 700 surgeries, one of which was for a friend of mine which turned out very successfully.

Unfortunately, mine wasn't as successful!!! With the facial paralysis, hearing loss (I have a tiny bit), vision issues, loss of balance, etc. .... I'm not nearly as healthy as I was pre-surgery! I am a lawyer and an ordained minster, so speaking in front of large groups is what I do which I can't do now given the disfigurement combined with the newly acquired disabilities. I'm plugging away at this trying to re-gain my health. I have had Botox which has helped tremendously with the hyper firing of the nerves on my unaffected side.

After the surgery, the doctor did say the FN nerve was intact. (He was less sure about the cochlear) At first, he has said without a doubt I'd get full function -"HB1". He also told me this would take 2-3 months. Well, I am nearing 5 months.... The truth is that now he's pretty much unreachable. The last communication said that facial paralysis is a risk of surgery and that looking into a graft is a good idea.  I felt like he had washed his hands of me ... So, I went to another doctor, an otolaryngologist, who told me unquestionably to do the graft. Of course, he a surgeon, so that's what he sees as my best option. However,  I am going to wait on that though. I'm not ready for any more surgery!!!!

I have a wonderful OT/PT who specializes in facial paralysis. She agrees I should wait... Waiting is hard. I keep hoping things will start improving and I will see noticeable improvement soon. My thought is to give it some more time before agreeing to more surgery. For now, I just want to make sure I am doing everything I possibly can and that I do not wait so long that I jeopardize my facial muscles atrophying to the point that a graft won't help.

I appreciate your feedback and advice.

Best, Mace

[golfguy49]

I am sorry to hear about all of that.  It's pretty shocking actually.  It is amazing to me how these doctors lack consistency on their approach to treating the same tumor.  Ask 6 and get 6 different answers.  They all see the same scans!!  It is also shocking that your Seattle doctor has basically ghosted you...I won't be so blunt as to ask his name, but I will not be getting surgery done in Seattle!  For all doctors reading this who may think that is a harsh reality - as the business world says: "in any industry, we are only as good as our worst competitor".   

I wish you the best on recovery and possible grafting.  I can only pray a solution or improvement comes your way soon.

[lablove]

Hello! I am so very sorry you are having these complications. I am 2 yrs & 3 months postop with many of the same complications...complete loss of hearing (no hearing loss preop), tinitus, complete facial palsy with synekinesis non responsive almost a year but truly gradually improving even now with extensive facial pt/ot & quarterly botox in a synekinesis clinic. I sure miss my smiling old self & I am sure you do too. The pain & contractions are significant & eery tiring. I just want to be a support & let you know healing will continue very slow. My facial nerve also was reported to be functioning postop until a few hours in the ICU when the entire left side fell unresponsive. I have had great results also with craniosacral massage over the past 4 months. Since summer, I can finally see the tips of my teeth.....it's a slow process but keep the faith & continue your hard work!!!! ~Colleen