Trying to get through the paralysis

[william5822]

Good evening.
I'm posting for my husband.
He is 53 and just had a 3cm AN removed on December 3rd, 2013.
We are two weeks post op today.
The removed almost all the tumor, a small portion was left so that the facial nerve could be saved. The surgeon said that the nerve was responding to stimulation after the tumor removal.
From waking up in recovery to now he has had complete left side facial paralysis. His eye will not close without manipulation and can not smile or eat. Eating is the most difficult thing for him.
At this point he totally wishes he never would of done this surgery. we were hoping to see some kind of improvement with the facial paralysis by now but so far nothing.
My first question is - is there a typical time frame as to when he may see improvement
Does anyone have any pointers on how to eat? He is so tired of milkshakes and soups. And as of today he has lost 20 lbs. I'm at a loss on what to do to help.

We go back to the ENT surgeon this thursday for a preop but we don't go back to the neurosurgeon until the 31st and that is just suture removal.

Any tips, suggestions, comments, help, reassuance....anything is greatly appreciated. This has been more difficult of a ride than we both thought it would be.

[saralynn143]

Here is a good article about facial paralysis: http://neurosurgery.mgh.harvard.edu/CranialBaseCenter/b95.htm - pay special attention to the section on predicting facial recovery.

In my opinion, the best thing to do right now is wait. It's tough, but it takes time for the nerve to recover. My facial nerve specialist told me not to do anything but heal for the entire first year.

As far as eating goes, there is no reason to limit his diet to milkshakes and soup. Try softer foods at first such as oatmeal, applesauce, cottage cheese and such. Then move up to meatloaf, mashed potatoes, steamed veggies. He can do most of his chewing on the unaffected side, but unless there is some other underlying reason, he should be fine returning to a regular diet.

When you see the ENT surgeon, inquire about an EMG (I think that's right - electromagnetic stimulation of the nerve). That might shed some light on the extent of injury to the nerve.

Best wishes to you both.

[sroch1]

Hello,
I cannot speak much to the facial paralysis since I have not seen much improvement with my own facial paralysis. I do however remeber eating difficulties and how tough that was especially since the steroids they gave me made more hungry. What I did was cut up my food into small pieces and place it in my mouth on the side of my mouth that was not paralyzed. I ate very slowly and small portions at a time then eventually my mouth got used to eating again. It just takes patience and practice. Good luck!!

[LakeErie]

Your husband is very early in the recovery process. It takes time for cranial nerves to heal.  While I did not have facial paralysis, I did have paralysis/paresis of the vocal cord and swallowing muscles ( cranial nerve # 10 or the Vagus nerve.) I lost 24 pounds before I figured out how to manage food - small amounts and drink water with each swallow. I could barely speak for 8 months and then began to improve. It was 16 months before I reached my present ability to speak and swallow, both of which are now near normal. Believe it or not, your husband will get better with time. He will regain nerve function, or steps can be taken to improve his situation. Where was his surgery done and by whom? Good luck.

[Tod]

First, tell your husband to hang in there and not give up as sometimes this can take awhile.

Second, recovery sometimes requires that we adapt and do things differently. I spent two weeks in ICU, with the first days being intubated. Between the trauma from from the 32-hour surgery and the breathing tube, my left vocal cord was completely paralyzed for awhile. I also lost a lot of the involuntary swallowing functionality of the smooth muscles of the throat.

I went through a swallowing test and the doc suggested that I get a feeding tube semi-permanently involved and that I learn to eat (and talk) by turning my head all the way to the right until my chin was almost over my shoulder. This did a couple of things that allowed to me to swallow and speak somewhat normally.

I turned him down on the feeding tube and agreed to a soft food/thickened liquid diet. So he approved removing the NG tube I had at the time for the next day. When the nurses didn't move fast enough the next day, I removed it myself.

From that point on I experimented very carefully and found ways I could eat and learned what foods I could not eat (typically breads and dense meats) without care or special handling.

About week after I got home I went back to the hospital for injection to plump up my paralyzed vocal cord. While this did not help my voice for very long, it did allow me to eat more normally.

Most my facial paralysis was gone in three months, about the time I returned to work. I still have some issues in that my left eye doesn't tear well and I have to use ointment nightly and I have been coughing for four years now because of the swallowing problem, but it is not bad. I'm more normal than a lot of people I know.

-Tod

[alabamajane]

Hi, so sorry you and your husband are going through such a hard time ,, it is quite an adjustment when the facial nerve is so impacted, however like Sara says,, you have to give it time to heal and that patience can be extremely hard to develop but you soon realize there is no rushing cranial nerve healing,, this is not like "regular" surgery that takes 6 weeks to recover from for most people . He had a large tumor removed ( mine was about 2.7 cm) and probably the facial nerve was stretched and must heal,, non medical opinion ,,, my facial nerve was severed so my situation is a little different,, however I was told 12-18 months for mine to regenerate,, his probably won't be that long, but you see the length of time it takes these nerves to respond,,, this is all just my experience /opinion ..

As far as eating, I agree that he will have to learn to eat again using the other side of his mouth,, small bites and soft foods that don't require much chewing for awhile. A straw will become his best friend for drinking ,, I bought them by the box for months,, I had to cut everything up in very small pieces and place it in my mouth,, no biting off a sandwich or burger etc. I also lost 30 lbs the first few months but as he learns to eat he should gain some of that back,, right now just getting something in him is important ,, pudding, oatmeal , rice and gravy, scrambled eggs,, he will just eat very slowly and deliberately too so as not to choke,,

It's a hard time of year also to be dealing with all of this ,, I know as I had my surgery in Oct. 2011, and was not anticipating the Holidays with facial paralysis in addition to brain surgery recovery,, try to encourage him to be patient, rest and try to heal knowing it is going to take time for his brain to re-learn and recover,,, it will get better!  We are all here to help with non medical advice and encouragement ,, give it some time and he will see improvements ,, I am sure,, take care and best wishes to you both,, let us hear from you ,, we want to help if we can,,, Jane

[Gloria Nailor]

I think all of us with facial paralysis can empathize with your husband. And I know it is hard for you also, to see your husband dealing with this.  My right side of my face had total paralysis after my surgery, they left a portion of my tumor also to save the facial function. My nerves also showed a reaction to stimulation after the surgery. It was extremely difficult to accept at first.  I only chewed on my good side when I ate. I was extremely depressed, it really helped to see a therapist and be on an anti-depressant.  Is he seeing anyone to try facial PT ?  I saw a therapist who gave me certain excercises to do in hopes of improving my paralysis.  These sessions were very difficult, they made me realize what I couldn't do also, but I believe they were helpful.  I will say it is a long hard road, but he can get through this.  I took over 2 years to recover mentally. And now the good news..... I regained a lopsided smile a week before my year anniversary of my surgery ! My eye does not close on it's own, I had a gold weight placed and a stitch placed in the outer area of the eye, stitching the top lid slightly to the bottom, and I can blink when I tell it to blink, I no longer need eye drops!  It has been over 2 years and people who haven't seen me say they see even more movement in my face.  My tumor did start to regrow and I had Gamma Knife radiation this summer, I now have an uncontrollable twitch above my lip on the slightly paralyzed side, it might be a side effect of the radiation, but I actually am starting to think I can force a wider smile than in the past!  So, don't give up hope, it is a slow journey, they say that what you have for movement at 2 years post op is usually what you will regain, but I am seeing differently. I never saw myself and someone who was wrapped up in how she looked but having a face that is paralyzed is a huge blow to your ego.  I smile for pictures with a closed mouth, I still don't like my open-mouthed smile.  So, both of you have to hang in there and pray to God to help you get through this. Take care, Gloria

[Gloria Nailor]

PS --- I had an EMG and do not recommend it, is was very painful and they told me I would not gain anything back and I did....I truthfully think they only tell you your facial function at the time of the test....It was incredibly discouraging to hear the results of the test and it was wrong in my case, just my 2 cents worth!

[leapyrtwins]

I don't have any significant firsthand experience with facial paralysis, but I can tell you what I've read on the Forum over the years.

It's way too early to be concerned about facial paralysis - your husband's surgery wasn't even a month ago.  There are stories here from people who didn't see improvement in their facial nerve for a year or more.  Facial nerves are very fragile and they take time to heal.  The fact that your husband's facial nerve was responding to stimulation post op is a very good thing.

I can't even imagine what your husband is going through - or how frustrating it is - but please tell him that he is not alone.  Lots on this Forum have had a similar experience to his and they got through it.

Keep the faith.

Prayers,

Jan

[mesafinn]

William and Family:  I can only try to imagine what you and your family are going through.  My own experience is quite limited and not at all the same.  I had Gamma Knife eight months ago to the day, and I experience hemifacial spasms whereby the left side of my face will go paralyzed.  Each time it happens, I am convinced that my face will lock, and I will have facial paralysis on the left side permanently.  And then, as soon as the thought enters my head, my face starts to relax and slowly return to "normal."

I can only hope for you that slowly, slowly this is what will happen....and after the trauma and shock that your nerves and everything inside your head have gone through with your recent surgery that things will only start to improve...and improve very soon.

My moments last for just that....a few moments.  Your reality has lasted for days, and I can sense the fear and discouragement which is very real.

You and yours are in my thoughts.  I wish for you the very best, and I hope you're able to eat soon; re-nourish your heart, soul, and mind; and even smile before too much longer.

Peace, always,

Patrick

[millie]

Yes, it is very early in the recovery period.  I am 14 months after trans-lab. It gets better very very slowly. I think I looked best five moths after surgery, then, my healing became more aggressive and the nerve started to pull up=which gave me the illusion of a facelift! Actually I have some synkenisis right now, mostly a tight feeling in my cheek and my eye looks a little slanty when I smile.  However folks who don't know my experience or me think I look perfect. 
I am still hoping for more improvement. Like your husband, chewing power was impacted on the surgery side but it came back.  I can remember not being able to blow up both cheeks with air, but today, I can-although my surgery side is bubble is not as strong. .. I have been lax in doing my exercises, but every day is a new beginning.
 At one of the support group meetings, a fellow told me he saw improvement continue over a ten year period!  Yay!  He was 21 at the time of his surgery.  We are in our sixties, so maybe it takes more time to improve.
Keep the faith.  It will get better... but I know it is so hard right now.  One day at a time.
Mil

[elsie]

we had just moved into our home when i was diagnosed...6 weeks post-op, with full right side paralysis, my family and i went to the neighborhood annual block party.  i admit it took all my will power to walk into that party, but i knew that i had a choice in how people viewed me.  i could be "poor beth, she had that tumor that just destroyed her" or "brave beth, look what she went through and she just plowed through it".  i chose brave and it was the best thing i ever did.  that tumor did not win.  i live with the after effects every day, not as bad as many on this site - severe dry eye (i had a tarrsophy that helps a little), 60% facial return, right side deafness, roaring tinnitits, some balance issues - but i'm not the old me.  when i start to get down, i go back to my choice...very sappy and corny i know, but we all have to find our way through.

my face remained completely paralyzed for 6 months and slowly made its way back.  the camera is not my friend, but as long as i stay away from one, i'm fine.  25 years after surgery, most people didn't know me before AN and many are truly surprised to hear about it.  60% doesn't sound like much, but my calm face looks very normal.  i even had one woman who had no clue comment on my lovely smile (it's not, but i'll take what i can!). 

this is hard, but you and your husband have to keep pushing.  he'll find his new normal, physically and mentally.  as has been said, it is still very early in the recovery process.  his body is still healing.

[william5822]

Thank you everyone.
It's so hard when a dr says "you should see improvement in 2 weeks" and of course you don't. Makes you feel as though things are not going the way they should. But reading everyone's post just confirms with me that time is our friend now. Now to just get him to take a step back and just go with time.

We had his post op appointment yesterday. The sutures were removed 2 weeks early so he was happy about that. We ended up doing a battery of tests, one of which was at the voice center to make sure he was not swallowing his food down the wrong pipe. He has managed to chew a divot in his tongue   They ran a tube down his throat and watched him eat several things and drink. The test did reveal that his vocal cords are also paralyzed which we did not know. But now makes since with his voice sounding "off". But luckily there was no evidence at that time of him swallowing his food and it going down the wrong way.

We did end up in X-ray because of his cough....which resulted in pneumonia in his left lung. So now he is on some strong antibiotics.

He also met with the Physical Therapist yesterday to see how his balance is after the surgery. We did a pre-visit before surgery as a baseline. There were some big differences but not as bad as we thought. He had a long, exhausting day but I think the good baby steps out weighed the bad ones.

He does not go back to the dr until January 10th and this will be a visit with the neurosurgeon.

Oh on a bright note....I remember the day after surgery they would take feathers and touch his face on both sides. He could not feel you touching him on the left side. Yesterday she did the same and he could feel a light touch YEAH.

[TexasSprinter]

Mrs. William5822--that is great news to hear about the feather test. I had complete right-side facial paralysis for one day after my first AN surgery one year ago, so I dealt with only a fraction of the angst you and your husband are going through.  I hope things continue to improve day by day. Please keep us posted on your husband's progress.

[deborahgordon]

I too had surgery on dec 3 and have complete paralysis on left side.  I got a food processor for Christmas and looked up recipes as I was tired of smothering everything in gravy to get it down.  eating is a chore and drinking my morning coffee from a straw stinks but I have hope.  I get my eye unstitched and the weight put in on jan 2.  if things don't improve by spring I will get a face sling inserted so I will speak a little clearer and the droop wont be as pronounced.  I am so sorry he is having a hard time adjusting, I know how hard it is.  My daughter reminds me I am here, it was not cancer and even though things are different I am still grandma to 2 great boys who are happy I can be with them even if its not the same.  allow 5 minutes a day for mourning the loss of the old you, then spend the next 23 hrs and 55 min being thankful for all we still have and that your life still matters it just it took a new direction,  good luck in the future and see the posts of people who are getting feeling back after months and sometimes years.  Don't give up I am not letting this little bump in the road stop me, don't let it stop you