Author Topic: Current status 7 days post op and more questions  (Read 3117 times)

Skishortstuff

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Current status 7 days post op and more questions
« on: April 10, 2014, 06:23:23 am »
Hi all,
I'm home from Seattle now, sleeping on a wacky schedule and am still in a bit of shock. My face is partially paralyzed, and the headaches rock me if I miss the pain dose. They were planning on doing a translab but my tumour was closer to 4.1!! Large! So they did the Retrosigmoid/Sub-occipital Approach instead. They said my facial nerve was very angry,but they did their best to save it. I've got lots of facial bruising and my eye won't close all the way. I've been using gel, drops, and a patch. They think the nerve will regenerate and new sensations do meet me everyday. I would love to hear your facial paralysis wisdom, maybe some echoes of hope. Also, the stitches from this surgery are so tight! I feel like they're squeezing my head. My tongue feeling on one side comes and goes and my eyesight in the effected eye isn't focusing well. My doctor said to wait two weeks and it should all be better. What do you think? Is that a fair assessment? His nurse then echoed this May take up to a year.  This pain plus new nerve pain hits me right at the 4-5 hour mark and wowza!! I am pleased that they got the tumor, but am trying now to navigate a new set of concerns. Also, they put about 10 stitches in my hip and a titanium plate in my head. How will they then do more MRI's? As always, thank you thank you for being here. I know I'm going to have to slow down and be patient with myself- but this AN has changed everything including just forced me to have a general humbleness- there's really only so much we control. Another new symptom is short term memory recall is pretty poor, but I'm thinking theseRetrosigmoid/Sub-occipital Approach: meds+ anesthetia don't help with the loopiness.
I look forward to hearing from you- and if you need to chat about my experience in ID/ WA personal message me! We can chat there or send me your #. I know how much this can help.
Sending love &light to all of you, Steph
« Last Edit: April 10, 2014, 06:44:37 am by Skishortstuff »
AN diagnosed 3/10/14 3cm ear- scheduled translab 4/1 at Swedish-- Retrosigmoid/Sub-occipital Approach:4/1/14 tumour was actually 4., SSD, complete vestibular removal

Hokiegal

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Re: Current status 7 days post op and more questions
« Reply #1 on: April 10, 2014, 09:57:04 am »
Hi Steph, just a quick note to say welcome home!  So sorry you're having a rough time.  I had many of the same difficulties.  Will send a longer response when I get home from work.  For now, just know things will get better!

Mary
3.0cm AN diagnosed 08/11, age 47
surgery 09/11, Dr. Patel (MUSC), 95% removed
SSD with tinnitus, right side facial paralysis, vision and balance issues
facial movement much improved, and still returning after 3yrs
"We are better than we think, and not quite what we want to be."  Nikki Giovanni

LakeErie

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Re: Current status 7 days post op and more questions
« Reply #2 on: April 10, 2014, 03:22:06 pm »
Steph, am glad your surgery is behind you. I had facial weakness after surgery, never any paralysis, and I was back to normal in two weeks, so I cannot address that issue for you. I did have other nerves adversely affected and it took them 16 months to get back to the  level of functioning I now have. So you may need to be patient in your recovery.
I can answer your question about future MRI's and the titanium plate. I, too, have a titanium plate, a large one, and MRI's are no problem because titanium is a non-magnetic metal and therefore unaffected by Magnetic Resonance Imaging. Good luck. Things will improve in time, but at their own pace. We all recover differently.
4.7 cm x 3.6 cm x 3.2 cm vestibular schwannoma
Simplified retrosigmoid @ Cleveland Clinic 10/06/2011
Rt SSD, numbness, vocal cord and swallowing problems
Vocal cord and swallowing normalized at 16 months. Numbness persists.
Regrowth 09/19/2016
GK 10/12/2016 Cleveland Clinic
facial weakness Jan 2017

Hokiegal

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Re: Current status 7 days post op and more questions
« Reply #3 on: April 10, 2014, 07:37:46 pm »
Hi Steph, Mary again.  I had complete facial paralysis for several months.  It was almost a year before I could close my right eye.  However in my case, the facial nerve was damaged in surgery -- not completely severed, but "nicked", and that was enough to cause complete paralysis.  Throughout the surgery, they were monitoring the various nerve functions, and they stopped when the facial nerve response showed a decline.  I think that's a fairly common practice -- nerve monitoring during surgery.  So I hope that means your nerve was NOT severed -- because if it was nicked, they would have measured a drop in response.  Also, I do remember them telling me the surgical trauma itself causes some swelling, and the swelling will cause temporary issues.  Their description of your facial nerve as "angry" may be consistent with swelling -- which will subside.  I think the fact that you came out of surgery with some facial movement is a very good sign.  Lots of reasons for hope!

Practical matters -- first, take extra good care of that eye!  I used Lacri-lube, especially at night.  It is very thick, and it's like looking through vaseline, but it's very durable and long-lasting.  Keeping that eye lubed, especially at night, is super important.  They sent me home from the hospital with a tube of Lacri-lube and instructions to apply every two hours.  Later, we were able to buy it at Wal-Mart.  It makes a gooey mess, but it's very effective.  Hopefully it won't be long before your eye starts tearing on its own again -- that's all part of the nerve regeneration process.

About facial therapy -- there's lots I can tell you about facial exercises and some really effective techniques my speech therapist used, but for now they probably want you to rest and let that angry nerve calm down.  The paralysis may soon resolve on its own.

Short-term memory?  Anesthesia + pain meds + general trauma breeds the perfect environment for short-term memory loss!  Mine started off pretty bad.  It has improved greatly, and I returned to work after four months, but I still have some nagging memory issues.  However, fatigue also plays a role.  My memory has improved along with the physical recovery.  The remaining issues seem to be associated with the hearing loss, and I'm just now learning how to cope with that.  If you still have issues down the road, you might want to ask your doctor about neuropsychological testing -- it measures memory and such.  But at this point you're a long way from that.  Time and rest are good medicine!

I didn't have stitches or a plate, so I can't address that.  However, I had neck pain from trying to hold my head up off the surgical site (behind the ear).  Some nice muscle relaxers, along with some trial and error with pillows, took care of that. 

Random thoughts -- watch out for the Lifetime channel, it's addictive.  While I was out of work, I got hooked on reruns of Grey's Anatomy and Desperate Housewives.  My poor husband got hooked right along with me lol!

Spring must be beautiful in Idaho, and it's just around the corner, right?  And speaking of Idaho, are you in Boise?  One of my goals is to visit Boise St. and watch a football game on the smurf turf during a snowstorm. :)

Hang in there!  Please feel free to message me if you have any questions or just want to talk.  That tumor's gone and you're on the road to recovery!

3.0cm AN diagnosed 08/11, age 47
surgery 09/11, Dr. Patel (MUSC), 95% removed
SSD with tinnitus, right side facial paralysis, vision and balance issues
facial movement much improved, and still returning after 3yrs
"We are better than we think, and not quite what we want to be."  Nikki Giovanni

rodneyd

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Re: Current status 7 days post op and more questions
« Reply #4 on: April 11, 2014, 01:14:02 pm »
Hi Steph,

It is hard to believe you have had this much happen to you in such a short space of time!!  As I recall, you did have rather severe symptoms pre-op and are still dealing with significant post-op issues.  You are one strong lady!

I am on W & W and have no idea how I would feel if I were in your shoes.  But reading lots of the traffic on this web-site, I can only encourage you to be patient and try and follow the surgeons advice.  As many have said, the response to an AN is so individual that it is very difficult to develop a common response to the surgery or the radiation or even just the symptoms experienced on W & W, so patience is a must.

As others have mentioned, Titanium is a non-ferrous metal and magnetism does not affect it so any further MRI's can be done without worrying about that. 

It does seem that it sometimes takes a rather long time for the symptoms to either manifest themselves or to improve.  For someone like you who interacts with the public and colleagues, I am sure it is a rather daunting proposition, with lots of questions about why it happened to you and what will it all mean going forward.  And your concern with your career is also weighing on your mind.

I hope it is some consolation that many AN patients are pulling for you and wish you all the best.  Please keep us posted on your progress because we all care.

Rod
74year old male, 8.3x7.3x6.5 mm AN on 10-28-13.  MRI on 12-30-13 showed no growth.  Imbalance issues and mild tinnitus.  MRI on July 13, 2014 showed no growth.  Still on W & W and taking baby-aspirin regimen.  MRI in July, 2016 show slow growth (1.1 cm).  MRI on July 24, 2017 was 8.2 x 8.6 x 8 mm!

Skishortstuff

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Re: Current status 7 days post op and more questions
« Reply #5 on: April 11, 2014, 09:55:53 pm »
I've forgotten to add the good things! My face is bothering me- and as Mary said probably from swelling (they just ordered me more steroids) that I forgot to mention... My balance is good! Headaches aren't too bad and the fullness is gone from my right side. Thought I'd add those... And yes it's beautiful in Boise right now everything is blooming!!
AN diagnosed 3/10/14 3cm ear- scheduled translab 4/1 at Swedish-- Retrosigmoid/Sub-occipital Approach:4/1/14 tumour was actually 4., SSD, complete vestibular removal

Jill Marie

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Re: Current status 7 days post op and more questions
« Reply #6 on: April 11, 2014, 10:40:06 pm »
Hi Steph,

So sorry to hear that you are having so many issues, it's not surprising considering some of the issues you were having before surgery and of course the fact that the tumor was large.  The fact that your face is partially paralyzed and you notice things daily is a good sign believe it or not.  My face was totally paralyzed and felt nothing for 6 months.  Be good to your self and make sure you take the pain medicine on schedule, I did as you did thinking you didn't need it and then it was to late. 

Your facial nerve is angry but not cut so things will return, how much one doesn't know but please keep in mind that with mine cut I still hold down a job where I deal with the public on a daily basis.   I was fortune to not be working when I had my surgery, so I didn't have to worry about getting back to work as soon as possible.  Hopefully you aren't feeling pressured to return to work as that won't help your mind or body at all. 

My eye still doesn't close completely, I do as you are doing, put in ointment and patch it at night.  During the day I have a lens that keeps my eye moist as I don't tear/water at all.  Does your eye tear/water?  Make sure anything you put in your eye is preservative free, if it's not it will end up irritating your eye.  The eye focusing will improve soon, as I mentioned in a post before your surgery, I had issues with my eye and my balance but it soon changed/adapted. 

All my stitches were taken out before I left the hospital so I'm no help there.  Why the stitches in the hip?  I still can't smile but it doesn't bother me anymore, when I had severe eye issues and couldn't smile it bothered me.  Now that my eye is so much better the smile part doesn't bother me because I'm so happy my eye isn't such an issue.  I of course don't know for sure but from what I have read here I don't think your not being able to smile is a permanent thing anyway.  Just want to let you know that if by some chance you can't smile like you use to you will be fine.  I work with a lady that smiles at you but you can tell by the look in her eyes and her body language that she really doesn't like you, while I can't smile I can show you with my eyes and my body language that I am smiling at you and glad I'm talking to you. 

Feel free to go with the, "Why Me", we all do!  My husband brought everything from the hospital home with us, pitcher, spit bowl, etc.  One day not long after my surgery while he was at work and the boys were off playing with friends I looked at all the things he brought home, gathered them in a pile on the floor (my leg was in a cast so I sat on the floor) and proceeded to bust everything apart, the bag they put my clothes in before surgery was cut to shreds as it was the bag that held what I wore when I was someone else, not the person I was after surgery.  Then I CRIED!!  Felt a lot better afterwards!

Yes, it is a VERY HUMBLING experience!  I was raising two young children, just moved into a new house and life was looking good.  It's unfortunate that you are going through this but you will find as most of us do that you are a more compassionate person because of it.  You will be more aware of others issues both medical & personal. 

I echo what you and the others that care about you have said, PLEASE try and be patient!  Your body has been through a lot and you need to let it heal. 

Take Care Jill  :)



Facial Nerve Neuroma removed 6/15/92 by Dr. Charles Mangham, Seattle Ear Clinic. Deaf/left ear, left eye doesn't water.

Gloria Nailor

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Re: Current status 7 days post op and more questions
« Reply #7 on: April 12, 2014, 08:43:40 pm »
I am so glad your surgery is behind you.  You can still have an MRI with your titanium plate, no problem there.  I was told you can regain facial movement for up to 2 years post-op.  I had total facial paralysis and no closure of my eye.  I regained a crooked smile a year post-op and have gained more movement near my mouth and cheek since then.  I am three years post op and people still say they are seeing change in my facial movement. I have read of people gaining everything back a few weeks after surgery.  You just don't know how much you will regain or over what period of time, which is as frustrating as heck. I had severe depression for a long time learning to deal with my side effects of surgery.  I highly suggest talking with a therapist to help sort out your feelings. This might not be what you wanted to hear, all I can say is don't give up hope, try and be positive and I hate to say it, but take one day at a time.  So sorry you have had to go through this. message me if you'd like.  Rest up and take your pain meds on schedule :)
4/2011 diagnosed with 3 cm AN on right side
6/15/2011 retrosigmoid craniotomy which resulted in SSD, severe facial paralysis
7/2011 gold weight placed right eye lid
5/2012 tarsorrpapny right eye
6/2012 woke up with a smile
1/2013 cranioplasty because a screw came out of my head!
6-7/13 regrowth, GK