mjminer's Post surgery

[mjminer]

Hello ANer's  I thought I'd give an update to my Middle Fossa Approach surgery on September 2nd.  I had the middle fossa approach done by Dr. Driscol, and Dr. Link, with Dr. Cody Kook and Dr. Park also highly invovled with my treatment at the Mayo Clinic.  The resection of the Acoustic Neuroma went well it was approx 4mm.    The pathological report came back negative for cancer, Woo Hoo!

Unfortunately 2 days later I developed a spinal fluid leak out of my nose.  A spinal Lumbar drain was installed into my back and  I lay in the hospital getting it drained every 2 hours untill September 7th, Labor Day, when the doctors decided I would have to go back to the Operating Room to get reopened and Resealed with  fat and Bone sealant.    Since then the spinal fluid seems to have seized and I was released from the hospital on September 10th.

The only other issue I'm experiencing now is that my facial nerve has become very week on the tumor side of my face since I've left the hospital.  The Doctors think I have a case of Bells Palsy, and have prescribed an anti-viral and steroids for the issue.   

All and all things seem to be getting a little better every day, my balance is improving daily and I seem to be getting some Eye function back on the right side.  That's the worst part, I can't blink very well, so my eye dries out constantly and I have to keep wearing bubble humidification Patches.

The care received at Mayo was pretty good, I wish they would have got my head sealed up right the first time, but I guess at least they were on top of the issue.  The doctors came in every day to check the leak status. 

I think a person with an AN going to Mayo is in good hands, the nursing staff in the ICU is second to none, I can't say the same for the Neurological floor at St. Mary's hospital though.  The Nursing staff seemed to be having some issues.  You either had an excellent  nurse or one who wouldn't give you the time of day.  I'm just glad my wife was there to assist me through the 8 days of my hospital stay.

[Jim Scott]

Hi, Mike ~

Thanks for taking the time and making the effort to post a comprehensive surgery update.  The CSF leak was definitely unfortunate but I'm pleased to learn that you're home and recovering, albeit with a few issues such as the dry eye.  I trust that and the facial weakness will soon resolve.  Your analysis of the Mayo Clinic and Saint Mary's hospital nursing staff was informative.  We always recommend an AN patient have an advocate when in the hospital.  I'm glad that you had your wife to advocate for you.  I'm also glad to learn that you appear to have a realistic but positive attitude.  I hope and will pray that your recovery continues apace.  Thanks again for the information.  It's appreciated.

Jim

[leapyrtwins]

MJ -

thanks for the update on your recovery.  Although 99.9% of all ANs are benign, it's always a relief to get confirmation of that post op.

Sorry to hear about the CSF leak - they happen sometimes - but glad to hear that's all over with.

As Jim said, the dry eye and the facial weakness should resolve themselves over time. 

Please keep us posted.

Best,

Jan

[moe]

Thanks for the post op update.
Sounds like you handled the hurdle and you are doing great, improving slowly every day. You're actually doing GREAT!!
All I can say is, listen to your body cues and you will know when  you over do it, because you'll feel hammered the next day!
Slow and steady, lots of rest, fluids, walking. Use the recovery (I say up to 6 weeks) to your advantage to just heal. Brain surgery is a BIG DEAL.
When the real world slaps you in the face, the fatigue usually increases.
The eye/face thing should resolve like your doc said. Might want to get some eye ointment for night time to keep the eye, especially the cornea protected.
Refresh is a brand many people use and like. There is a thick liqui gel too that might work for you.
Let us know how things continue to go and if you have any further issues
Maureen

[mjminer]

Well, its been about a month since the 2nd surgery and I'm doing fairly well.  My facial nerve function hasn't come back fully yet but my uncle who's a Chiropractor gave me a little Electo-therapy machine that is supposed to stimulate the facial nerve and he's had patients with Bells Paulsy have very good results from this.  Thought it wouldn't hurt to try it. 

I started driving a few days ago, and ended up having to drive my wife to my uncle to get worked on which is about an hour car ride, and did fairly well.  I still have trouble turning my head from side to side in the car so I have to adjust my mirrors accordingly to check my blindspots.  I'm sure it'll get better with time. 

The incision's are healing fairly well, one word of advise though for people post op.  My doctor never told me when to stop putting bacterian zinc (Neo-Sporin) on my incision post op and my skin reacted to it and I ended up getting dermititis all over the incision and the area I was putting the goop on.  My allergist told me to stop putting anything on it now that it was closed up and let it air out to heal.  Glad I talked to him, because I just kept putting more on it because if I didn't it itched horribly.  Oh well live and learn.

I would say my balance is somewhere between 75-80% depending on how tired I am and those balance exercises my Physical therapist gave me really help.

Well gotta go, time to try another drive to go pick up a Pizza.  Sure glad to be out of St. Mary's so I can eat some real food, hospital food YUCH!!

[moe]

Good to hear that you are doing better!
Interesting about the elctro-therapy machine. I recently learned that it is NOT recommended after surgery. Just let the facial nerve heal on its own and allow the facial movement to come back naturally... I also have one one of those handheld devices.

I myself went to a speech therapist and got E stim for my droopy face, about 6 months post AN surgery where the face nerve was cut and directly connected. I was having  little function come back. The doctor said
"Don't do anything."  (he said  I could do exercises if I wanted but didn't give any specifics. ) They forget to mention WHY it was important not to "do anything."

Being impatient, I pursued the treatment on my own. I have not developed any synkenesis which is a possible outcome when trying to get the nerve going. It did help my droopy left side of the mouth though.

So who really knows??

Good luck with your continued recovery.
Maureen

[ilsemor]

Hello mjminer – Please, please, please be patient!  It does take a while, for some it takes longer.
I had my surgery exactly 3 months ago and I had facial paralysis three days after surgery, I used to look at the mirror everyday hoping to see a total nerve come back until my doctor said it would be better for me to think it would be a matter of months, so being thankful for my overall results, I decided just to do that.  Today, I still don’t blink and my paralysis has improved some.  People tell me I look better, I have the freaky eye look, my lower eyelid is working better and I can do a little bit of pulling on my lip when I try to smile. 
I have been told by friends and family to chew gum, get acupuncture or massage my face.  I tried chewing gum and massaging it, it made it more painful by the next day.  Dr. Slattery at House told me “Do Nothing,” he and all the team there believe it can take up to a year before they suggest anything else.  They believe the nerve will come back by itself.  Easy to say but hard to do for us the patients because we get so frustrated with it.  Last night for the first time I cried, because I felt tired of this condition, but I really need to keep praying for patience and to be thankful this is the worse I need to deal with today.  Just by ready the postings in this forum I realize how thankful I have to be.
Hang in there, it will happen, focus on your life, continue living and don’t look too much at the mirror and everyday look for something to be thankful about, you’ll feel better that way.
Remember to practice this....be patient and be thankful.

[Cheryl R]

The website  www.bellspalsy.ws      has good info and while we are not true bells palsy the end result is similar.   Plus ANs are mentioned.            They also talk of not doing any treatment too soon.                                    Many of us well know how the waiting is hard.    The muscles won't work till the nerve is healed enough to make them work.         I had the facial neuroma with the nerve graft and was told would be 8 months till saw any improvement and was about right.     I do not have full movement but enough that get by.             We all vary in how it goes!
                                                                                   Cheryl R

[Jim Scott]

Mjminer ~

It was good to learn that your recovery is moving right along.  The resumption of driving is a huge milestone in the recovery process and you seem to have that well in hand.  Regaining 75 to 80% balance is pretty good and close to what I experienced.  Time may well find that percentage increasing as you continue to heal.  The incision issue must have been unpleasant but thankfully, it's past, now.   Thanks again for the update - and enjoy the pizza! 

Jim

[moe]

mjminer,
Speaking of acupuncture, I have started it for my face for long term facial paralysis.
(face nerve cut)
I had the nerve cut during the original surgery, reattached,and then the other nerve transposition surgery 18 months later.
 Some results, not enough.
I've been in acupuncture for about 2 weeks and am seeing  tiny results already.
The needles go into the feet/legs/hands- not the face of course.
I'm using this as a last ditch effort before more invasive surgery.

So I say it can't hurt because there is no facial manipulation.
They recommend treatment immediately after a nerve injury to get blood flow/oxygen to the nerve.
So it is a personal choice and a $$$$$$$$$$$$$ choice, as not covered by my insurance.
Also takes time.

Let us know how things go.
Really, patience is the key, and you will notice gradual improvement.
Maureen

[Goldie]

Just wanted to say I'm sorry you had a less than ideal experience going through the surgery and recovery.  I had translab a week ago today with Drs. Link and Driscoll and thankfully am doing better than everyone expected. 

One thing I did want to comment on is that Mayo and its hospitals are teaching facilities, and I did ask in advance who would be doing the actual surgery.  I was told that residents/fellows may be doing the opening and closing but that the actual tumor removal would be done by Dr. Link and Dr. Driscoll.  That was the most important part to me, but after reading your comments about the CSF leak, I might have pushed that a little more myself.  Not something anyone wants to deal with, although I understand it does happen.

Also, I guess I was one of the lucky ones who had excellent nursing care throughout and good food to boot!  I think nursing care is a big variable wherever you go just depending on the person, and I'm sorry yours wasn't what you or your wife hoped for. 

Sounds like you're making progress and I hope you can see a light at the end of the tunnel.  Things will get better!

Denise

[epc1970]

  They believe the nerve will come back by itself.  Easy to say but hard to do for us the patients because we get so frustrated with it.  Last night for the first time I cried, because I felt tired of this condition, but I really need to keep praying for patience and to be thankful this is the worse I need to deal with today.  Just by ready the postings in this forum I realize how thankful I have to be.
Hang in there, it will happen, focus on your life, continue living and don’t look too much at the mirror and everyday look for something to be thankful about, you’ll feel better that way.
Remember to practice this....be patient and be thankful.

Islemor-I came home from work today really exhausted and I came across your post and you inspired me with these words. I am so impressed at your spirit-I have been where you are and I know how frusrating the waiting is and your words of "I am tired of this condition" brought tears to my eyes cause I have been in your shoes. I wish both you an mjminer the best of luck in your continued recovery. One of the things I have learned thru my recovery is the true meaning of patience. Your body will do what it needs to do in it's own time. Your job is to take care of yourselves as best you can so it can heal. Take Care!

Erin

[ilsemor]

Erin - It's paying back what I'm doing here, I have gotten so much out of this forum that it makes me happy to know that my words can inspire others.  Thank you for your support!  Best wishes to you too!