Author Topic: New symptoms after almost 7 years  (Read 4006 times)

Pembo

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New symptoms after almost 7 years
« on: April 06, 2011, 04:17:47 pm »
I had surgery 7 years ago in June. The tumor was 100% removed.

This past month, on the An side,  I've had eye twitching of the upper eye lid and some noncontrolled closing of the eye. I have also had some pain near the scar.

I am overdue for my MRI but I admit I'm scared to go. I don't want to see anything on the MRI.

Any long time posties have any opinions on these symptoms?
Surgery June 3, 2004, University Hospitals Cleveland, BAHA received in 2005, Facial Therapy at UPMC 2006

Suu

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Re: New symptoms after almost 7 years
« Reply #1 on: April 07, 2011, 04:29:11 am »
While I don't fit the category of 'long time', I do feel for you mate. Gosh, you must be going through a lot of emotions that none of us would want to think about but you are also helping others that may go through a similar thing in the future so thanks for letting us know.

Please go and get the scan ASAP and then come back here and let us help you to either celebrate the non-return or 'listen' and help you to go through whatever happens next.

Best of wishes and all is crossed for you.
Suu xxoo
4cm Left side AN Translab August 18th 2010
Facial nerve not working
Nerve conduction Jan '11 Repeated 23rd May '11
SSD left side
5 ops in 6 weeks to fix CSF leaks
Tarsorrhaphy 9 Mar '11 Extended 26 Aug '13
Sling Thur 16 June '11
12/7 nerve graft 9 Feb '12

Chances3

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Re: New symptoms after almost 7 years
« Reply #2 on: April 07, 2011, 11:32:29 am »
Scar tissue can be a problem for a long time.  Besides having my AN removed 5 months ago, I have had other operations
scar tissue do weird things.  For the eye twiching, could be a nerve acting up, or some stress.  Don't get yourself all upset about it, but be proactive and get an MRI.

Jim Scott

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Re: New symptoms after almost 7 years
« Reply #3 on: April 07, 2011, 03:54:58 pm »
Hi, Barb ~

I'm sorry you're being stressed out by these sudden twitches and pain. 

I underwent Retrosigmoid approach AN debulking surgery almost 5 years ago (June, 2006) followed by FSR.  Both were successful and I did not suffer any real complications.  However, from time to time I get a very unpleasant pain in the mastoid bone where my surgery incision is .  Fortunately, one Ibuprofen tablet usually calms it.  Even rarer, I experience a slight twinge in my left ('surgery side') eye.  That generally passes very quickly and is barely noticeable.  I also experience a slight case of 'dry eye' in my left eye once in awhile, but rapid blinking always subdues it.  I just consider these little 'reminders' of my AN and the surgery and don't worry about them.  I had my last MRI in '08 and it showed the remaining tumor was developing necrosis (cell death) and had even shrunk a tiny bit.  My doctor has not mentioned my needing to have another MRI and, unless I suddenly develop real symptoms, I'll probably wait another year.  However, in your case, because you have these concerns and say you are 'overdue' for an MRI scan, I would suggest that you seriously consider scheduling an MRI, just for your peace of mind. 

Jim
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

leapyrtwins

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Re: New symptoms after almost 7 years
« Reply #4 on: April 08, 2011, 06:10:31 am »
I'm almost 4 years post op and haven't experienced any of this except eye twitching - which I get all the time due to stress.

Although MRIs can be frightening, especially if you suspect that something is going on, you should schedule one sooner rather than later.

If it's clean you'll be relieved and can stop worrying that your symptoms are related to regrowth; if it's not clean, you can do something to solve the problem.

Please keep us updated.

Hoping for the best for you,

Jan
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

Pembo

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Re: New symptoms after almost 7 years
« Reply #5 on: April 09, 2011, 10:56:34 am »
I go for my MRI on the 12th and see my doc on the 20th. He wanted me to have one in Dec...this is supposed to be last MRI for 5 yrs. I'm hoping that it is just the nerve still wakening...
Surgery June 3, 2004, University Hospitals Cleveland, BAHA received in 2005, Facial Therapy at UPMC 2006

ddaybrat

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Re: New symptoms after almost 7 years
« Reply #6 on: April 09, 2011, 08:32:44 pm »
I hope so to...will be praying for you.
1.4 x 1.5 x 0.4 cm AN on left side
retromastoid craniectomy 3/31/2010
Dr. Randy Gehring - Lafayette, IN
Tinnitis, deafness
Vestibular nerves destroyed
4 months post-op:
Facial movement returning
Paralytic ectopic repair on lower lid
Transverse ligament adjustment on upper lid

JAndrews

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Re: New symptoms after almost 7 years
« Reply #7 on: April 16, 2011, 05:40:30 pm »
eye twitching is almost always from stress..I think its pretty rare after a total removal for it to come back
2.5cm x2.0cm cerebellapontine angle meningioma. 100% removal 2/2009. House Ear Institute. Dr Brackmann and Dr. Schwartz. SSD right ear. No balance problems except when really tired, no headaches. Transear hearing aide made no difference, tried it for 4 months.

Pembo

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Re: New symptoms after almost 7 years
« Reply #8 on: April 20, 2011, 03:27:55 pm »
Saw my surgeon today. My MRI is totally clean! And he defiinitely thinks that the eye movement is nerve regeneration. I have also spoken with Jackie Diels in WI and she agrees. Looks like a road trip to WI may be in my future. Jackie thinks that she can help harness this new energy.

Nerve recovery continues after almost 7 years...keep the faith everyone.
Surgery June 3, 2004, University Hospitals Cleveland, BAHA received in 2005, Facial Therapy at UPMC 2006

CHD63

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Re: New symptoms after almost 7 years
« Reply #9 on: April 20, 2011, 03:37:02 pm »
Barb .....

What a relief for the clean MRI!  ...... and what good news that you are experiencing nerve regeneration this long post-op.  Jackie Diels has done amazing things so I sure hope you can get there to work with her.

Clarice
Right MVD for trigeminal neuralgia, 1994, Pittsburgh, PA
Left retrosigmoid 2.6 cm AN removal, February, 2008, Duke U
Tumor regrew to 1.3 cm in February, 2011
Translab AN removal, May, 2011 at HEI, Friedman & Schwartz
Oticon Ponto Pro abutment implant at same time; processor added August, 2011