Author Topic: New on site and post surgery  (Read 599 times)

Pman

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New on site and post surgery
« on: January 27, 2018, 01:26:37 am »
My name is Princewill and I am 34yrs old, diagnosed with AN of 4.6cm and my surgery happened in july 2017 performed by Prof. M. T. Shokunbi at the University College Hospital, Ibadan. I developed facial paralysis following the surgery and my surgeon advised me to wait patiently that some of my facial functions might start coming back with time. I also have balance and coordination issues, my eye ball on the affected side doesn’t move to mid point and it does not close properly, my speech was also affected.
 There are some tingling and what feels like warms crawling below the affected skin are these signs of nerve recovery?
Pls I will be eternally grateful for any information that will help me psychologically, emotionally and physically try to deal with this situation.
I live in Nigeria and i don’t have these support groups and systems available to me. I practically live indoors now with my parents and don’t go out or socialize, I find myself discouraging friends from visiting or calling, even extended relatives. I feel so ashamed of my looks and speech ability especially when I get this pitying looks from people.
Sometimes I think of myself before surgery and I consider what I am going through now and I wonder if its all worth it. Finding this group and reading most of the write-ups and comments has gone a long way in helping me.
I hope I post more and participate more in this community.
Princewill

Patti

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Re: New on site and post surgery
« Reply #1 on: January 27, 2018, 08:27:17 am »
Princewill, I am so sorry to hear of your troubles! I, too, have a crooked face and smile, deaf in one ear, and so much more (read my signature).  All I can say is that I am not shy or embarrassed and that has helped. In fact, there were a couple of friends who withdrew from me and I just invited myself over for tea and they realized I was still the same person.  And I do believe there was nerve repair for years.  I can actually look good now.  And all my friends and family know i drip food and liquid from the side of my mouth and they just give me a quiet sign that i need a napkin.  They tell me when it looks like i need eyedrops. they always ask what would be the best seating arrangements for me and my hearing.  I have cognitive issues and we all can laugh when i make blunders.  I can't tell you the importance of putting yourself out there and letting people into your life.  Talking about it is crucial to mentally healing.  Eventually you will not feel defined by your disability, you will be your old self but may look different.  But when your personality wins over your embarrassment, people will not care what your face looks like.  Happiness is contagious!  Good luck my friend!  Patti
4 cm AN removed 12/2000
subsequent brain swelling
removal of part of cerebellum
face, scalp,tongue numbness and partial paralysis
no corneal sensation and no tears-frequent eye issues
cognitive issues
Regrowth (3.1 x ..86 cm) treated by SRS on November 6, 2015

LakeErie

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Re: New on site and post surgery
« Reply #2 on: January 27, 2018, 10:36:05 pm »
Prinewill, I am more than 6 years past surgery for a similarly large tumor and still have some issues. I am a little over a year from Gamma Knife treatment for regrowth of the tumor, and its complications, which are still with me. Cranial nerve function can return with time, and what does not return we seem to adjust to. My vocal cord is still impaired, but I can speak and project my voice, that took over a year after surgery. I had facial paralysis after both microsurgery and radiation. The facial weakness is improved but still present. My eye still does not close completely and the corner of my mouth is still weak. My eye is more narrow than the unaffected one. I developed synkinesis, involuntary muscle movement in my face which is a real problem for me, but very few people actually notice it. You need to give yourself time to see if your nerve heals and to what degree. There are medical options to restore what does not come back, though I am not certain what is available in your country or even on your continent. Your surgeon should be able to guide you in finding how to deal with your issues. How have his previous patients dealt with them? You will find people here who have dealt with the same complications you are now experiencing and can relate to your feelings very well.
It is difficult to answer all questions in one reply and address the negatives you feel now, but keep coming back and you will hopefully find the interaction a helpful process. Things do usually get better, many people improve with time and effort. You should too. Good luck
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

Pman

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Re: New on site and post surgery
« Reply #3 on: January 28, 2018, 04:47:25 am »
Thank you so much  Patti and LakeErie for your responses and stories shared with me, i am grateful. I may not have Patti`s out going spirit being an introvert but your story is an inspiration for me. Please LakeErie was your initial surgery a complete removal? my surgeon said mine was a complete removal and that the chances of it regrowing is very low to non existence. I hope most of my complications resolve with time because even if the corrective medical options are available here i cannot afford them.

Princewill

LakeErie

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Re: New on site and post surgery
« Reply #4 on: January 28, 2018, 04:42:44 pm »
To answer your question, my original surgery in 2011 was a radical subtotal removal, meaning 95% of the tumor was removed with remnants left on my brain stem and facial nerve. The brain stem remnant died with no blood supply. The facial nerve fragment regrew in years 4 and 5 and required radiosurgery.
As far as future options, some posters here have recently reported facial therapy helping their facial "droop." ( See the poster Tod.) Such therapy is provided by physical, speech, or occupational therapists and is not expensive like nerve grafts for example. I believe the rule of thumb for AN complications is one year to allow for healing.
Also, you should be seeing an eye doctor about protecting your cornea if you have incomplete lid closure or else you risk exposure keratopathy. Dry eye can become a serious issue.
I really think you can best address your negative feelings by discussing your options with your surgeon or with a medical social worker. Having a sense of some control over your situation can alleviate some of your concerns about your future.
Looking forward with no sense of direction can be worrisome for anyone.
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

juliawilson

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Re: New on site and post surgery
« Reply #5 on: January 29, 2018, 04:04:14 pm »
Early in my diagnosis, I received an emotional lifeline that has greatly aided me through this journey. Read Dr. Ana-Maria Vranceanu's piece on resiliency in the December newsletter. She also gave a fabulous Webinar early last year, and I strongly recommend that you listen to it. I remember one example of resiliency that made so much sense: Your tinnitus comes back after a period of quiet. You can go, "Oh, no! Why me? Arrgh!" Or, you can say, "Hmm, interesting that it is back." (It probably makes more sense when she tells it!) But that philosophy of resiliency--of moving forward with determination, one step at a time-- will serve you well on this journey. Thank you for reaching out to the discussion forum.