quote from my Doc

[msswartz]

Hi there,

Thanks for the read on that.  I am hopeful that it will come back.  So far I am just enduring the annoying side-effects of the surgery.  I am grateful to be alive tho.  There are a lot of ways to die and I am glad that I don't have any of them yet.  I only wish that I also didn't have this and I could be more normal.   But I am grateful for family who love me, friends who stick with me, a good job and people like you to talk about this with. 

I thank you again for your insights and encouragement and wish you and all the best.

Michael

[Kaybee]

Hi Michael, thank you for posting your report.  I found it very interesting and I realize I should ask for mine!  I am in the same position as you.  My facial nerve was not severed and stimulated at low voltage post-surgery.  The surgeons were very encouraged by this even though I woke up with full left side paralysis.  My neuro-otologist told me that the tumor stretched the facial nerve and that removal of the tumor stunned the nerve.  The facial nerve is delicate in that it does not care for trauma--the nerve is angry (I wish I had a better, more technical definition!).  I am hopefully waiting as well.  I am 3 months post surgery and have no movement.  Tone is better, which my ENT informed me returns prior to movement.  I have tingling and zapping and somedays I feel like my nose is twitching...but it's not visible.  I take diligent care of my eye with a Blinkeze eye weight (just got it!) and lots of drops and lube.  I only use lube at night now.  Please keep us updated.  This time is frightening and frustrating for me but I read other's stories about months/years of recovery so I know it can happen, albeit so slowly!  Truly, I appreciate facial updates from all users on this site more than they will ever know! 
Kay

[mimoore]

Hi Michael.
Welcome!
I do understand how you are feeling. In my AN journey I have come across a handful of insensitive doctor, many great doctors who fortunately have made a mark.  A little hope goes a long way. I am able to tell them that now hoping that it may help another patient down the road.

Patience ~ oh it is an ugly word but this is a lesson that I learned - you can not make it happen any sooner. Exercise, eat well, get full body massages and take your vitamins (including a B complex, apparently it helps for tissue regrowth).
We are here for you!
Michelle  
See my link below for some encouragement and hope...

http://anausa.org/forum/index.php?topic=8760.0

I just read your operative report and it sounds good to me. Yes, you lost your hearing because of the inability to remove the tumor from the eight CN but it sounds like it came off of the 7th pretty good. It also says that it responded well when tested, which is another great sign that things will come back. Think of your facial nerve as if it is having a little sleep after being through a lot. it is slow to wake up but your report sounds promising to me (I teach kindergarten not a doctor but of course I have a vested interest in understand the reports).

[moe]

Michael,
After seeing Michelle's photos again, there is HOPE!
Enjoyed seeing those photos, again,Michelle . That is great that you have that for others to see.
Hopefully I'll be able to make my chronological photos of my smile coming back this year. (I am getting muscle tone and  some movement with acupuncture! Just can't get the upper lip to budge).
Keep truck'n, Michael, it will come back.
Maureen

[kford]

Michael,

Your smile is beautiful! I am a couple of years out from having Gamma knife radiation. I had a complication which has my smile "broken" so to speak. We do have to look forward. When one door shuts, a window opens!

[msswartz]

Hello all,

Thank you again for your comments and encouragement.  I was able to get some more info from my doctor.  This is what he said about the 8th nerve

"I don't remember the details of what happened. However, my routine when trying to save hearing is that I cut the nerve once we have lost hearing as indicated by our electrical monitoring. The loss of hearing can occur from manipulation of the tumor, from the trauma of dissecting the nerve from the tumor, or from loosing blood circulation to the nerve. I cut the nerve at that point because it will not recover and  it makes removing the tumor easier and safer to remove. I don't think that I have more to say about it than that."

And here is what he said about the 7th nerve

I think that most of these questions have to do with the usual finding in these tumors and are not ominous, unusual or relevant to your understanding. Xanthomatous degeneration and vascularity are just variations of the gross pathological findings. The compression of brainstem is not significant in your case. The trauma to the nerve has to do with the necessary handling during dissection. The exact mechanisms are complex and debated and you might do a literature search of the research and perhaps take some advance course in biology and medicine to understand this. I am not up on the details myself and don't think that they will help you much. The response of the nerve to stimulation indicates that it was intact and working at the end of the procedure and that it will recover. Yes, the threshold to stimulation was higher than usual suggesting some early decrease in function, but I can make nothing more of this. It usually recovers better in cases where it responds well to low threshold stimulation throughout, but time is the only way to see how well it will actually work. The nerve is composed of a bundle of nerve fibres each surrounded by insulation. The insulation stays intact, but the fibres die off. However the cells from which the fibres arise are still alive and grow down the insulating sheath at 1 inch per month needing 6 months to reach their destination ( the muscles). They don't all grow to their original destination and this is why recovery is not perfect. I am going over information that I know that I have discussed before and I don't think that I will be able to help you understand any better in the future."

That pretty much covers it.  That along with your very helpful comments is all I know.

Michael

[msswartz]

Just for your amusement....  here are some pics from my surgery

http://www.itsupportnet.com/surgery/op-prep1.jpg

http://www.itsupportnet.com/surgery/op-prep2.jpg

http://www.itsupportnet.com/surgery/op-prep3.jpg

http://www.itsupportnet.com/surgery/operation1.jpg

http://www.itsupportnet.com/surgery/operation2.jpg

http://www.itsupportnet.com/surgery/monitor.jpg

http://www.itsupportnet.com/surgery/suture.jpg

and here is a pic of my loving and supportive wife and me.  This is what my face looks like at 2-1/2 months after surgery.
http://www.itsupportnet.com/surgery/lovebirds.jpg

Looking forward and hoping for the best.

Thanks!
Michael

[saralynn143]

Who took the pictures? Interesting to say the least.

Sorry your doctor is such a condescending jerk. So you need an advanced course in biology and medicine . . . how about some continuing education in compassion, humility and bedside manner for your doctor instead?

Anyway, there is a really great site about post-op facial paralysis at http://neurosurgery.mgh.harvard.edu/CranialBaseCenter/b95.htm - pay special attention to Predicting Facial Recovery, especially the third point titled "Facial nerve is anatomically intact, stimulates at low voltage, but no movement immediately after surgery" as that sounds most like your situation.

It took a full three months before I saw a tiny movement at the corner of my nose. At six months I had an equally tiny movement at the corner of my mouth. Now, at nineteen months I have "symmetry at rest," meaning that the average person passing me on the street wouldn't notice anything amiss unless I were to smile or say something. You can see from my avatar picture (taken at 14 months post-op) that I have a passable closed-lip smile.

Also, I highly recommend an eyelid weight implant. It improved my life immensely.

Take care,
Sara

[moe]

I am going over information that I know that I have discussed before and I don't think that I will be able to help you understand any better in the future."

That pretty much covers it.  That along with your very helpful comments is all I know.

My thoughts exactly about the condescending jerk. I felt my blood boil well, excccccuuuuuuuse me doctor!
Be optimistic that that you will get that facial movement back, it will just take time.Your eyes look good.  :)You and your wife look great too.
Keep the faith,
Maureen

[msswartz]

Thanks,

I was also really surprised at his tone.  I had really hoped for a little compassion and help rather than made to feel as if I was bothering him by asking, that I was somehow being abnormal or bad by worrying about my experience and hoping for some help or asking for information.  I told him that it wasn't about him, I was not questioning him or his work, I was just wanting to know what happened and what to expect so that I would know why I was having the specific after effects and what to tell my family who love and depend on me what to expect.  That's all.  But I should not have to explain that to a man who has 30 or 40 years of experience with patients.

Anyway, that you for understanding and being supportive.

Michael

[calimama]

so anyway....

(does anyone else that trouble when they do a largish post and the bottom line drops off the bottom and you cant see what you are typing??

i have not been back to facial therapy (i only went a few times toward end of pregnancy) because i am too swamped, and have enough doctors to deal with.

anyway, i will try to get some pictures up soon.

hang in there everyone, times flies fast.

Trish

[sgerrard]

Hi Trish,

Nice to hear from you again. Judging by your profile pic, you are looking good. It sounds like the twins are keeping you busy; I hope you still have some time for that cutie Cali as well.   

Since I want to see pictures of all of them (and you of course), I will give you some hints. If you can get the pics onto photobucket, like you did with the profile pic, it is not hard from there.

This is what your profile pic on photobucket looks like as a plain link:

http://i806.photobucket.com/albums/yy348/calimama_photo/th_Picture309.jpg

if you click the Image button while composing a post (second one in the bottom row), and paste the link in between the brackets, it will look like this:

Code: [Select]

[img]http://i806.photobucket.com/albums/yy348/calimama_photo/th_Picture309.jpg[/img]
Or you can find a link labeled IMG Code on photobucket, which already has the img codes in place, and copy and paste that.

When you preview that, and when you actually post it, it will look like this:



Hope that helps.

Steve

[yardtick]

You look great Trish!!  Can't wait to see the pictures of your children.  I have thought of you often.  I see the famous Dr Rutka next Thurs. 

Thanks Steve for posting Trish's picture.

Anne Marie

[Debbi]

Hey, Trish - nice to "see" you again!  And glad the twins are doing well.  I agree with Steve - you're looking good.

Michael, I also felt my blood boiling when I read what your doctor said - he obviously missed the compassion part of med school.  I admire you for continuing to push to get answers - keep doing it!  No doctor should feel threatened by a patient asking for information.  Grrr.   Hang in there with the facial recovery - mine has taken a long time, but it continues to improve.  I posted some pictures on the Jackie Diels thread I started a few weeks ago - the good, that bad, and scary - mostly good now, though.

hang in there.

Debbi

[james e]

We all want some level of understanding from any type of human contact...or even from our pets. Come home and your dog bites you, that's not what you expect. But, we all have different levels of "understanding". If your physician was the patient, his level of understanding would be very different than his lack of human kindness is here...but you are the patient. You were the one that was hurting. I was a cop for eight years, and worked in a drug ridden neighborhood. The people were the worst of the worst. I soon lost any thoughts of compassion for these people (and their victims), and this just carried over into my personal life. I lost my "understanding" of human compassion, and I became a hard and cold person. One day I looked in the mirror, and decided I did not like my cold heart. I quit my job as a cop. I'm sure that a lot of the victims of the druggies in that neighborhood thought I was an awful big jerk...and I was. They wanted me to understand how much they were hurting, because their 12 year old daughter was a prostitute so she could buy heroin, or that their 15 year old son quit school, because he was earning more in one day selling drugs than his dad earned in a week.

Not making excuses for you physician, but he sounds like he is where I used to be. He has no human compassion left in his heart. I would rather be in your shoes (or mine too) rather than be in his. Don't let him drag you into his quagmire. His job has resolved into a scientific exploration of peoples head, rather than healing people. Hopefully he will look in the mirror one day, and change his life.