Dr. Suggesting a Trigeminal Nerve Graft or Wait?

[Mimispree]

Hi Friends:

Well, I just finished Day 1 of a two day visit with my medical team in Salt Lake City:  Today my surgeon's fellow (the surgeon cancelled at the last minutes) who debulked my tumor and a facial nerve specialist.  I received the proverbial, good-news-bad-news:  The good news is they got almost all of the tumor out during my surgery July 31, 2014; The bad news is that it looks like my facial paralysis is permanent.  The fellow looked at me and said, "Ah, I'm so disappointed.  We worked hard not to damage the facial nerve."  I told him, "You're not as disappointed as me," and I'm proud to say I didn't throttle him.  Then he told me that although my tumor was large, it was a Type #1 tumor and therefore very slow growing.  So why didn't they leave more of the tumor on the nerve?  You can't even see the tumor on my 6-month MRI.  So, I'm a bit upset.

Then the facial nerve specialist strongly recommended an EMG and the next day a "seven hour" Trigeminal Nerve Graft, as well as fixing my gold weight implant that slid-up too high, lift my eyebrow so it doesn't block my eye, lift the right side of my nose, and put fat into the creases (I don't know what he's talking about) around my eye and mouth.  I didn't like the idea of having him shoot my good side with Botox to slacken the muscles to make my face more symmetrical, but maybe some of you have good input.

Anyway, he is highly respected but he definitely had a rap, and I wondered if after having surgery with him was I going to be driving a "new-to-me" used car.

I'm sorry about being cynical, but I was told they had a 94% to 96% rate of facial nerve preservation.  I think that the surgeon cancelled at the last minutes because he didn't want to look me in my drooping eye.  He obviously took too much of a very slow-growing tumor...

I'm actually more upset about my constant dizziness and unbalance, but that's tomorrow:  I have almost 4-hours of balance testing, then seeing my other surgeon (ENT/craniotomy) afterwards.  Hopefully I'll get better news as far as vestibular therapy, but I may not be a pleasant and polite patient tomorrow.  This doc told me I'd be back at work in 6-weeks and I wouldn't have any balance or facial issues.  He did not give me a realistic idea of what the worst case recovery could be to make me a fully informed patient. 

My husband is at the end of his rope and I have no idea what I should do.  I don't even know if I'm willing to have another surgery. Some experience, strength and hope would be greatly appreciated.

Thank you dear friends,
Mimi (Michelle)

[Jill Marie]

Michelle,

I wish my computer would let me reach right through it and give you a BIG HUG of support!  Congratulations on not throttling the doctor, I would have wanted to.  I understand that they get frustrated when a surgery doesn't go the way they wanted but they should leave that conversation for there next doctor think tank.  He was obviously lacking in the bedside manner. 

I don't have the dizziness issues so not any help there.  I can understand your wanting that to get better more than the facial issues as the constant dizziness and unbalance feeling is a constant present, had a tiny bit of it so I can understand that.  Hoping that they have encouraging news tomorrow.

As for the Trigeminal Nerve Graft, I had that done over 20 years ago when they removed my tumor because they severed the facial nerve.  At rest my face looks normal, I don't smile (to lopsided), can grin just fine.  Have total feeling on that side, eye brow doesn't move quite like the other side (don't care).  Not sure about the other things they want to do for you, sounds like it might be something to help you now while you wait for the nerve graft to take hold. 

I completely understand your not wanting to go through another surgery when the outcome from your last one wasn't at all like they said it would be.  I wish I had a crystal ball that could show you how you would look and feel after the surgery so you wouldn't have to wonder if it's worth it. 

So much to think about and decide on in such a short time, good luck!  Jill

[alabamajane]

Hi Michelle,
I don't know exactly what to say except that I am deeply sorry for what you are going through right now ,, I know exactly how you feel.. you are grieving the loss of your facial function and it is very much like a death to us. I too lost my facial function due to my facial nerve being severed during translab surgery in 2011. I Had an AN though so not sure how that differs in recovery from what you
had. I knew going into surgery that paralysis was a possibility if tumor was involved with facial nerve and it was growing through it. I awoke after 12hour surgery in ICU and was informed of nerve having to be severed.. I know what you mean by Dissapointed,,, devastating was my feeling after initial shock!
I was scheduled for a 12/7 (severed facial nerve to "tongue" nerve) nerve graft 4 days later. This was to give my face movement from tongue movements,, it has worked wonderfully. I too had eyelid weight for one year.

I am not a Dr mind you but IF Drs think you can get healing of nerve and eventual function,, MAYBE you could wait a year before doing anything as involved as what he's talking about. I was told after my graft that the facial nerve would take 12-18 months to heal and begin working. Sure enough, after about 6 months, I began to see ever so slight movements. If he only stretched or disturbed nerve,, PERHAPS,,You would have some hope of healing with some time and BUNCHES of patience,, VERY slow process. I did have the EMG after graft early on and it showed slight response but enough Dr knew graft had worked and nerve would in time..

Today,, over three years later, I have pretty good movement, facial tone, and symmetry. To look at me at rest, I look pretty good,, when I speak though I talk like a pirate as I like to say ,, I do have Botox around my eye every three months or so to help with synkenesis and it has helped greatly.
I wish you well,, it is hard to hear and deal with at first and I sympathize with you and your husband.
You can PM me if you like and I will be glad to talk with you. Take a little time to adjust to this I would say before doing anything. Maybe there is someone else who will post that has had the same type tumor who could help you a little more. There is hope , believe me, but it will be a very slow process that you can not rush. Nerves heal very slowly and at their own rate,,, please let us know how you get and what you decide to do. Your Dr was not very empathetic today in his delivery of the news. It's ok to have your say with them too by the way! They need to hear sometimes from patients just how their words affect us!!!  My thoughts and best wishes to you both!
Jane

[NYLady]

Hi Michelle,

Truly hard to find words to express how sorry I am that you are going through this difficult time.    You and your husband are in my thoughts and in my prayers. 

One thing comes to mind...sometimes very dire situations turn out well after time, despite what is expected.  Very few absolutes in medicine.  Faith, strength and optimism have overcome some really devastating problems.  I know its hard right now, in the depths of your disappointment, to really believe things can get better...but somehow Michelle I know you will find a way to cope and hope....

Wish I could do or say something more to offer you support .... but I care and I wish you peace and strength, as well as continued healing.

NYL

[CHD63]

Hi Michelle .....

As the others have said, this was bummer news that you were not expecting to hear.  So sorry, but please do not give up seeking the best result possible given the situation.

Before you have any more surgical interventions, if you have not done so already, make contact with Jackie Diels.  She is an occupational therapist specializing in facial nerve function.  She comes highly recommended and even does Skype evaluations/interventions with her patients when they live far away.  She works primarily at the University of Wisconsin in Madison, but also travels to Los Angeles to work with Dr. Azizzadeh at the Facial Paralysis Institute.

http://www.uwhealth.org/findadoctor/profile/jackie-diels-ot/9744
http://www.facialparalysisinstitute.com/Our_Team.html

Many thoughts and prayers for leading you in the right direction for treatment.

Clarice

[Cheryl R]

Michelle, that was not news you ever wanted to hear.       If it was me and from what I have heard from people on here, I would still wait and see what time brings.     I can fully understand how waiting is hard and frustrating as have been there too.     I had the nerve put in from the ear area at the same time as my facial nerve was severed with my facial neuroma and was told 8 mo or more before would start to see movement.   That was about the time and did slowly for a long time after.     I do not have full movement esp around the eye but enough that look ok at rest.         I have seen Jackie Diels for a half day session just for tightness and synkinesis.    Plus her talks at the AN symposiums held in the past.    She usually does not want to see patients until some movement starts or is a year or more.        She could still give you some info on her views of your situation.            I am curious as to what nos your drs have had similar to your case and what those did go ahead and do or not do.   Jackie is such a nice lady and wants to be of what help she can be.                What you do has to be your own decision and wish you well.
                                                      Cheryl R

[ANGuy]

I think you should hear and weigh what your current Drs have to say.  Then, I would RUN to different Drs and get their side of things.  I would not let these guys do anything to ME.  Either they should have done a better job, or even if it was one of those things that couldn't be avoided, I still don't see any reason to let these particular Drs work on me again.  The one Dr not even showing up is a big red flag for me.  He did the job, but won't find the time to follow up with one of his patients who clearly is in the worst case scenario zone?  You're there, you have the appointment tomorrow, keep it and see what this guy has to say, and find other Drs and people like this Diehls lady and see what they have to say before getting opened up again.

As for the balance issue, I can't understand it.  This may be too simplistic, and I am not any kind of expert or even a novice, but my understanding is that the vestibular nerve has to be severed during the tumor removal.  There shouldn't be any signal going to your brain from it.  With no signal from that side, it shouldn't take this long for your brain to compensate.  I wonder if they left part of the vestibular nerve intact and that is causing a varying bad signal to make it to your brain and causing you misery.

[Jill Marie]

Michelle,

I had forgotten that you had your surgery in July, so I totally agree with what the others have said about waiting.  I wasn't sold on the idea in the first place but certainly don't see why they are anxious to do it so soon.  I first started noticing small changes at 6 months, as you know you just passed the 7th month, who knows what will happen in the next year?  I don't see how they can possibly know you won't get better, a quick fix to improve things some is no trade off for waiting to see what will come naturally. 

As I've mentioned before, my doctor said my eye wouldn't blink after surgery, it did, said my eye would probably tear again, it doesn't, he said I wouldn't be able to drink out of a straw after surgery, I did the next day.  They know a lot of things that can help us but they have NO way of knowing exactly how each of us will be after surgery, we just have to wait and see.

I hope today went better for you!  Take Care of yourself and your husband!  Jill

[NYLady]

Thinking of you and your husband as you travel home....sending positive thoughts and prayers.  Hope day 2 was better than day 1. 

NYL

[Kristena]

I would definitely wait. Unless they know your facial nerve was severed, there’s no reason to rush into surgery. All you need to do it watch Mark Ruffalo’s video on the home page to know there is still hope. 10 months of facial paralysis—and his face shows no effects today!

[Mimispree]

Dear Friends:

Thank you for your kind words and sharing your experience. 

Day Two of my medical visits went much better.  First, I had 4-hours of vestibular testing and therapy.  It was facinating.  It was discovered that my good (left) side's nerve is not helping my bad side's functions in the slightest.  They said this is very unusual for someone who is being as I have been in recovery.  So, I need to force my left-side vestibular nerve to react.  They explained to me that my eye on my paralyzed side looks in the opposite direction before it looks in the right direction--this is what has been causing me so much dizziness.

I left with three pages of vestibular therapy exercises that I know will help me.

Then I saw my chief surgeon, Dr. Clough Shelton and he confirmed that they can't even see the tumor remnants on my six month MRI.  He also told me that I should be getting some signals that my facial nerve is healing soon.  I told him that the facial nerve specialist I saw the day before warned me not to wait, and to get the Trigeminal nerve graft right away.  He was pissed!  He said he's going to talk to him right away.  He assured me that he is still hopeful that I will get my facial nerve function back, and I should wait.  He did say that if one year post-op my facial nerve is not back he will do a nerve graft with my tongue nerve and not my Trigeminal nerve.  He said if I need that surgery, it is best to do between 12 months and 18 months after surgery so I would have it done this summer.

I told Dr. Shelton I only want him to do my surgery and he agreed.  I was mistaken to think Dr. Couldwell, who debulked my tumor, did wrong by me by taking out too much of my tumor.  He and Dr. Shelton did an incredible job and I'm very lucky to have had two nationally respected surgeons work on me. 

I also found out I didn't have an AN, and that's why I didn't experience the same symptoms as many of you before discovery of the tumor.  That explains why I didn't have any hearing or balance loss before surgery.  Instead I had horrendous facial pain because my tumor stemmed from my Trigeminal nerve and it litterally engulfed my facial nerve as well.  It's incredible they were able to remove as much of the tumor as they did because of how much the tumor enveloped the facial nerve.

Anyway, I know there is a very good chance that I will need the tongue nerve graft this summer, but I feel a lot better about waiting until then before having another surgery.  I also feel very good about the vestibular therapy exercises.  I was told I should see a big difference in three weeks.

Thank you all again!

Love,
Michelle

[ANGuy]

I am very glad that you were able to get to the bottom of a lot of this problem.  There were so many things that didn't make sense, but now they do.  That must be a big relief to you even though it won't have an immediate effect on your symptoms.

Unfortunately, we will be revoking your membership in the AN community and forwarding your file to the ON (Other Neuroma) Association.

[Mimispree]

Why thank you, ANGuy!  I learn far too much from this forum to give it up until I am completely healed.  After that I'll try to be more helpful to newbies.

It was a big relief to speak to Dr. Shelton.  I was very unwilling to have another surgery, but now, I will be willing to have the nerve graft with Dr. Shelton if needed.  I know I can trust him and he was at House Ear Clinic and headed-up Stanford's department too.  I did my homework on my neurosurgeons and I knew I was in good hands.  I have come to understand that they were not convinced my tumor wasn't malignant because of it's uneven shape and edges, but they don't find out if it's cancer or not until the tumor is analyzed after surgery.  So, thank goodness it wasn't cancer and it is remarkable they got almost all of the tumor out.  I can completely recommend my surgeons.

I cannot recommend the knucklehead who wanted to do my facial reconstruction right a way.  I am so glad Dr. Shelton is going to have a word with him.   

Okay, thank you very much!

Michelle

[Jill Marie]

Welcome Back Michelle,

So very glad to hear the trip ended up a lot better then it started.  You learned a lot, thanks for sharing what you learned and the process it took to get there, it helps all of us.  As you no the unknown can be very scary, now you know what you need to do and better understand what your body is doing.  Please keep us updated on how the therapy goes.  I see no rush on the surgery, got my fingers crossed that you start seeing facial improvements soon.  Jill

[Kaybo]

PLEASE DO NOT get any more surgery done until AT LEAST a year (& really, if I had it to do over again, I would wait MUCH LONGER)!!! I still have improvements to this day (19 years) and really wonder what all would have come back if I had waited longer before all my different surgeries!  I am not (& will not) live my life in the "what if" world but every once in a while I wonder. AND always get a second opinion.  Any Dr worth anything will say, "Please feel free to get a 2nd or 3rd, even..." If a Dr gets upset about you wanting a second opinion, RUN as fast as you can away from them!! 
Kaybo