Author Topic: New member seeking advice  (Read 4736 times)

sbass6508

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New member seeking advice
« on: May 22, 2016, 07:55:52 pm »
Hello everyone! I am so thankful to have found this post. It seems relieving to see so many others who can relate to this issue. Tomorrow will be 13 days since I had surgery to remove an Vestibular Schwannoma (Acostic Neuroma). I was someone who had their tumor found by accident with no symptoms although the tumor was midsize at a little more Han 2 x 3 cm. I had been having a lot of digestive problems that I couldn't seem to get figured out despite gluten free diets and removal of gallbladder. None of these prob have anything to do with the Scwannoma and its discovery is coincidental. I was also discovered to have Lynch syndrome which can cause abnormal tumors and a lot of colon issues. I'm 36 years old and very healthy considering. I work in the field of law enforcement and I tend a small family farm where i live. Back in 97, my only other sibling passed from a cancerous gleoblastoma brain tumor so finding out I had any type of brain tumor was scary for the entire family. I was recommended by one Doctor the gamma knife surgery and two others recommended surgery to remove. I chose removal just because of my Lynch syndrome history although the gamma knife sounded much more appealing. I was told with my lynch syndrome that radiation to a benign tumor could actually cause cancer. Although rare. Iwent to sleep Tuesday morning for surgery with no symptoms and woke up with poor vision, a lot of head pain, dizziness, one eye that won't close and facial paralysis across majority of my right side. I also lost my hearing in my right ear after surgery despite having had perfect hearing prior to the operation. It's certainly been a scary feeling to go into surgery feeling fine and waking up with so many new issues. I remain positive as I know these  Things take time. I felt a little saddened to know that the doctors can't really give any idea as to how long to expect these types of things and that it seems to be that everyone is different and so is their recovery time. I look forward to hearing from you and I enjoy reading about your experiences. I look forward getting to know many of you and I wish you all the best in your roads to recovery!
« Last Edit: May 23, 2016, 07:25:06 am by sbass6508 »
22x22mm
Dr. Tamargo Johns Hopkins 5/12/2016
Suboccipital craniectomy
Near total resection with small fleck of tumor left on facial nerve
fleck extensively bipolared with electrical current
Facial nerve anatomically in tact but stopped stimulating late stages of dissection

Greece Lover

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Re: New member seeking advice
« Reply #1 on: May 23, 2016, 06:38:01 am »
I had surgery on May 9. Doctor saved my hearing but I'm dealing with facial weakness as well. Also dizziness is very slow to resolve. Just trying to be a patient with patience.

I just started a steroid to hopefully alleviate the facial weakness. Hasn't really kicked in yet. But these things take time, hopefully.

Good luck to you!
Vestibular Schwannoma 1.2 cm. Right side.
Middle fossa surgery at University of Iowa on May 9 2016.
Hearing saved.  Face is fine. Balance pretty darn good most days.
One year follow up MRI showed no tumor. 
Five year follow up showed no tumor, so I'm in the clear.

researcher

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Re: New member seeking advice
« Reply #2 on: May 23, 2016, 02:21:09 pm »
Hi sbass!  I woke up after surgery with similar symptoms. I was still glad the tumor was gone.

Over the last 6 months:
1. my balance has improved
2. I drive but not at night
3. my hearing is still gone
4. my eye closes now
5. my eye tears when I eat. why? I am glad because my eye used to    not close and it was dry! The worst!
6. AN side of face wouldn't move after surgery. Now it's nearly normal

It takes time. Give yourself a good 6 months to be nearly the way you were. That is no guarantee of course, just a general guideline. The facial nerve was the weird one. I felt tingling, buzzing, and twitching as time went on. Look for weekly improvements. Good luck to you!

Greece Lover

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Re: New member seeking advice
« Reply #3 on: May 23, 2016, 04:53:23 pm »
Thanks researcher. This is helpful to hear.
Vestibular Schwannoma 1.2 cm. Right side.
Middle fossa surgery at University of Iowa on May 9 2016.
Hearing saved.  Face is fine. Balance pretty darn good most days.
One year follow up MRI showed no tumor. 
Five year follow up showed no tumor, so I'm in the clear.

v357139

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Re: New member seeking advice
« Reply #4 on: August 01, 2016, 06:15:51 pm »
Sbass,
Sorry for your troubles.  As you said, many of these things take time.  For many people, the issues you describe have resolved over time.  So there is a good chance yours will resolve also.  Stay positive.  Get lots of rest.  Things will come around.  Keep us posted, we are here for you.
Rich
Dx 2.6 cm Nov 2012, 35% hearing loss.  Grew to 3.5 cm Oct 2013.  Pre-op total hearing loss, left side tongue numb.  Translab Nov 2013 House Clinic.  Post-op no permanent facial or other issues.  Tongue much improved.  Great result!!