Author Topic: ten months and counting.  (Read 2210 times)

stevecms

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ten months and counting.
« on: June 13, 2010, 02:23:39 pm »
Hi, i know im getting boring but its doing my head in.The constant eye twitching,wonky head and everything tasting yuk i can handle,but the constant pulsing from the scar area is a nightmare.Its been there from day 1 and gets worse if i strain or bend over or even going up the stairs.Is there nobody out there with similair symptons or just me,please help Steve
4 cm acc neuroma 99.9% removed queen elizabeth hospital 6 sept 09 by dr walsh.thought it was trigeminal neuralga,lots of facial pain for 18mths,now deaf on rh side little taste and ear pressure.13 hour surgery.

Jim Scott

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Re: ten months and counting.
« Reply #1 on: June 13, 2010, 02:44:41 pm »
Steve ~

I'm so sorry to learn about your post-op problems.  I don't have any easy answers but your doctor should know that you're suffering....he may have a remedy.   You'll be in my prayers.

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.

Tod

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Re: ten months and counting.
« Reply #2 on: June 13, 2010, 03:25:21 pm »
Steve,

I'm sorry about what you are going through. My head does not feel that constantly, but it does when I exert myself or am very tired. My limited understanding is that this feeling is caused by pressure. Have you discussed this with your doc? How is your blood pressure? Your hydration? These things may well be way off the mark, but I don't feel we can allow ourselves to lose site of the basics.

What you may also wish to consider is trying to document any highs and lows of discomfort and see if you can find a pattern and perhaps identify potential causes.

Whatever you do, make sure your doctors understand what you are going through.

Best of luck to you,

Tos
Bob the tumor: 4.4cm x 3.9cm x 4.1 cm.
Trans-Lab and Retro-sigmoid at MCV on 2/12/2010.

Removed 90-95% in a 32 hour surgery. Two weeks in ICU.  SSD Left.

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BAHA implant 1/25/11.

28 Sessions of FSR @ MCV ended 2/9/12.

jaylogs

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Re: ten months and counting.
« Reply #3 on: June 17, 2010, 06:08:46 am »
Steve, I am sure there's been more than one person out there who's had similar experiences.  And Jim's right, I hope your doc knows what's going on so they can take some steps to ease your suffering...Let us know if you have gone back for this and what's the plan of action if you have...take care and good luck!
Jay
8.1mm x 7.8mm x 8.2mm AN, Left Ear, Middle Fossa surgery performed on 12/9/09 at House by Drs. Brackmann/Schwartz. Some hearing left, but got BAHA 2/25/11 (Ponto Pro) To see how I did through my Middle Fossa surgery, click here: http://www.caringbridge.org/visit/jaylogston

cin605

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Re: ten months and counting.
« Reply #4 on: June 17, 2010, 11:46:07 am »
Maybe you can ask your Dr about Gabepenton(neorntin) it is doing wonders for me.1 really bad day since i started it....muscle spasms are gone and i do not have to lay down after being up for 3 hours.
Yesterday had "relapse" no balance and my whole face hurt.The day before felt so good considered riding my bike...DAM!
2cm removed retrosig 6/26/08
DartmouthHitchcock medical center lebanon,N.H.
43yrs old

Lizard

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Re: ten months and counting.
« Reply #5 on: June 17, 2010, 08:54:14 pm »
Steve,
You are not alone, find yourself a good headache specialist (yes this is considered a headache)  indocin (indomethecin) has helped with the pulsing and hopefully you can find relief.  Don't wait for it to get better, find something that gives you relief.  Its a great feeling to bend over and pick something up off the ground without pain.

Good luck to you and hopefully the info on this forum will help find good treatments  for your pain as they have me.
Other meds that I've heard help are gabapentin(neurontin) and Topomax...just some ideas for you to toss around with a Dr. and another note, don't waste time with any Dr even a neurologist who is not a headache or AN expert.  Its amazing the difference in options when they know about your condition.

Please feel free to ask anything,
Liz
Left AN 2.5CM,retrosigmoid 11/2008, second surgery to repair CSF leak. 
Headaches began immediately.  Dr. Ducic occipital nerve resection, December 2011!!!!!

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