Author Topic: 6 month post op  (Read 2047 times)

JLR

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6 month post op
« on: April 26, 2017, 03:39:17 pm »
I am now 6 months post op. My balance has greatly improved. Still have PT twice a week at a great facility. But my facial nerve damage is coming along very very slowly.  Does anyone have a timeline for that recovery?  Today I feel like my face, the right side is in a vice. My head does feel better but the side, the affected side, the right side is still somewhat numb.  It's very frustrating. My eye actually is improving. I can sort of blink. I get my eyes checked monthly. hope everyone is well. Joan

lablove

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Re: 6 month post op
« Reply #1 on: May 05, 2017, 06:41:08 pm »
Hi Joan, Good news about your balance and sorry to hear about your facial nerve paralysis. It does sound like you are improving and based on a lot of other folks here it seems improvement can be made long after the surgery. I am jealous about your eye! I wish I could blink mine completely. I am having great difficulty with closing my eye and have corneal damage. I'm 3 weeks out from surgery and have had tons of complications, but I am hopeful and positive. I hope you continue to improve and the vice feeling in your face calms down.

LakeErie

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Re: 6 month post op
« Reply #2 on: May 06, 2017, 10:50:37 am »
JLR and Lablove sorry to read of your complications. After my subtotal removal surgery in 2011 I had minor facial weakness ( HB Grade 2 ) that resolved quickly with decadron. I was told then that the facial nerve can heal for as long as a year after the weakness / paralysis begins. That's the only timetable I am aware of.
I had regrowth of my tumor remnant in Sept 2106 and GK in Oct 2016. Because I had a large tumor originally and facial weakness from the surgery, I was told I had increased risk for facial nerve complications from the GK. 3 months after GK, Jan 24th, 2017,I experienced Grade 4 (on HB scale )
facial weakness with incomplete eyelid closure including exposure keratitis. The ophthamologist inserted a tear duct plug that helped a great deal. A one month, tapered, decadron Rx has helped some. I have complete eyelid closure now and the corneal damage has resolved. My mouth is still crooked but the strength has improved and I no longer have difficulty keeping liquid in my mouth. I cannot close my eye as tightly as the other side, but it works.
I had central tumor necrosis from the GK and that is an edema generator and my last MRI on Feb 10, 2017 showed fluid in my brain adjacent to the tumor as well in the tumor itself. It is unpredictable whether the edema resolves. I have a follow up MRI May 22nd
to check on the brain swelling.
Summary, I can now close my eye, but movement in general is asymmetrical from the corner of my mouth on the affected side to my eyebrow and forehead, though it is somewhat improved subsequent to the steroids. Hope this helps some and 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

JLR

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Re: 6 month post op
« Reply #3 on: May 07, 2017, 02:09:40 pm »
Hi LakeErie I have my follow up MRI next Wednesday. I think my paralysis would have gotten better with decadrone. I did ask for steroids in the beginning but was told it wouldn't help.  But I really disagree. After the MRI if there's continued growth I'm going to request steroids. All the best. Joan
By the way I'm 6 months post op and hoping my paralysis continues to get better and totally resolves within the next 6 months.

JLR

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Re: 6 month post op
« Reply #4 on: May 21, 2017, 01:31:55 pm »
Had follow up MRI and thank goodness the 5% residual AN is stable. I did get a script for steroids. They are helping. I had some swelling puffiness on face which is way bette but I noticed the last day or so that my mouth is a bit crooked. It was crooked a couple of days after surgery but that has resolved but I notice the right side of mouth is crooked. When I was at doctor I was told it's all part of the recovering process. I'm getting pretty annoyed. No choice. Oh well we must "stay the course".

LakeErie

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Re: 6 month post op
« Reply #5 on: May 22, 2017, 03:02:10 pm »
I had my 3 month follow up MRI today, the 22nd of May, and the brain swelling from GK is down by about a third. My cranial nerve function has improved even if it is incomplete. Neurosurgeon said the reduction in edema is the start of the healing process and once it begins, it usually continues. It would be highly unlikely that my symptoms will get worse, if they do. I will be back on steroids. I'll need another scan in 6 months to further evaluate. All in all it could have been worse. Hope your situation resolves favorably'.
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

ColleenS

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Re: 6 month post op
« Reply #6 on: May 22, 2017, 06:24:33 pm »
I think my paralysis would have gotten better with decadrone. I did ask for steroids in the beginning but was told it wouldn't help.  But I really disagree. After the MRI if there's continued growth I'm going to request steroids.
Not getting steroids after surgery? I assumed that was a given in order to combat any issues due to swelling. I am so sorry you were not treated properly!
Surgery date 5/2/2017 @ Vanderbilt Translab approach with Drs. Haynes & Chambless. Love them :)
Success: removed 99.9% of tumor; no facial issues
Readmitted on 5/7/17 for CFL, had a lumbar drain inserted; CFL repair surgery on 5/14/17 and sprung on 5/15/17.

JLR

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Re: 6 month post op
« Reply #7 on: May 22, 2017, 06:48:53 pm »
Hi Colleen, Of course I had Decadrone after my surgery for at least 4 weeks, but I felt another course might really help the paralysis. Anyway I am taking now.  I feel better. Although my smile is a bit crooked I don't have that pulling sensation on my face so I do think the steroids are helping. I really had no choice having this surgery as I had Trigeminal Neuralgia. The tumor had grown and besides the brain stem it was leaning on the root of that nerve.  It was unbearable.  I may be crooked but I'm pain free. I hope your recovering well. Joan
« Last Edit: May 22, 2017, 07:05:42 pm by JLR »

ColleenS

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Re: 6 month post op
« Reply #8 on: May 25, 2017, 10:34:05 am »
Oh, thanks for the clarification Joan. I am glad that extra dose helped. I have read that some people have benefitted from a longer period of steroids. I am on my last day of them today - hoping I do not need more. They have really interfered with my sleep. I have been taking Melatonin and that has really helped some.
Surgery date 5/2/2017 @ Vanderbilt Translab approach with Drs. Haynes & Chambless. Love them :)
Success: removed 99.9% of tumor; no facial issues
Readmitted on 5/7/17 for CFL, had a lumbar drain inserted; CFL repair surgery on 5/14/17 and sprung on 5/15/17.

 


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