Author Topic: Mid fossa at HEI  (Read 3958 times)

ncbj

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Mid fossa at HEI
« on: August 22, 2012, 11:17:40 am »
Hi,

I have been reading a lot in this forum - not writing as much. This is just to thank you all for a very good forum and many good contributions.

I had mid fossa at HEI 8/8 and is now back in Denmark. I have especially benefited from Lisa and Liza who both have been through surgery during the past month. Lisa gave a very good description of her day of surgery, using the same doctors and same technique, on CaringBridge just the day before my surgery. So I was very well prepared. Furthermore, Kathy sent me pictures of Seton Hall - so we knew what to expect.

I am a kind of "control guy" so two things were very important to me: 1) I should be confident that HEI was the place to go, 2) I should have a clear picture of what I was to go through ... with no surprises. You all helped me achieving both.

I think that I have been quite lucky so far. No major problems after the surgery (no nausea, no vomiting, no strong pains). Only a minor facial weakness (HB 1,5 - now back to 99,9% of normal), couldn't open the mouth fully and hick-ups. The hick-up's were due to the steroids and that was the only thing that I wasn't really prepared for. Having hick-up's 6 days and nights (90% of the time) is stressful and increases the pain in the head. And my wife couldn't sleep either :o) At the follow-up meeting with Dr Stefan he told me to stop with the steroids immediately. After 12 hours the hick-ups stopped - and have not returned. A new life started ... and a lot of exercises to come.

By the way, I have lost the hearing. But that is not a major issue. I am just so glad that the process, so far, has been better than expected.

Once again: thank you all.

Regards,
Niels
 

Jim Scott

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Re: Mid fossa at HEI
« Reply #1 on: August 22, 2012, 01:00:48 pm »
Niels ~

Thank you for your generous words about the ANA discussion forums and congratulations on a successful surgery and recovery.  May your healing continue, unimpeded.

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.

lrobie

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Re: Mid fossa at HEI
« Reply #2 on: August 22, 2012, 02:08:40 pm »
Hi Niels,

I'm glad you were able to read my CaringBridge site and it assisted in preparing for your surgery.  It sounds like things worked out well for you.  Congratulations!  You didn't mention anything about dizziness or balance issues.  Have you had any of those issues or the bobble-head feeling?  I know that both LizAn and I have been dealing with that which has impeded our ability to feel safe while driving.  She was seven weeks post-op yesterday and I'm five weeks today.  It sounds like she has conquered driving and is improving. 

I wish you the best!

Lisa
6/2009 7mm x 4mm  W&W
8/2011 9.5mm x 5mm
2/2012 UPMC Follow-up , slight growth
Surgery on 7/18/12 w/Drs. Friedman & Schwartz (mid-fossa)
www.caringbridge.org/visit/lisarobie

ncbj

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Re: Mid fossa at HEI
« Reply #3 on: August 22, 2012, 11:39:43 pm »
Hi Lisa,

I don't think that any of us avoids having dizziness and balance issues. Neither did I. But I guess - and hope - that this to a large extent is a matter of training and exercise. At diagnosis I had a lot of problems with dizziness and vertigo. However, I adapted to the situation after a couple of months, so I feel that I have been here before. The test pre-op showed that I had lost app. 50% of the balance on the affected side. I know that things might develop differently this time and that I have to be patient.

W.r.t. driving I have not yet even had the wish to do so. However, being a passenger is slowly improving (being very bad at the beginning), so I hope that in a week or two I can take a step further.

I also have some problems with to much sunlight - makes me dizzy.

I must admit that I am not quite familiar with all the different descriptions, you know, wonkiness, lightheadedness, bobble-head feeling etc. I just say, that I have a strange feeling in my head :o) and I guess that it is also related to the healing process.

So still a lot things to improve - but still optimistic.

Niels

mindyandy

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Re: Mid fossa at HEI
« Reply #4 on: August 23, 2012, 05:29:50 am »
Niels
Congratulations yet another House alumni  ;D
I am almost 7 months post op Dr. Friedman/Dr. Schwartz/Dr. Stefan and am doing well. I did have some nausea/vomiting in the ICU from the anesthesia. I was dizzy for awhile but I kept walking. Went back to work just under 2 weeks post op and started driving around the same time. I'm thankful. I do still have facial twitches but no more pain knock on wood. (see old posts for my AN journey).

I hope your recovery is short and uneventful.

Mindy
14mm dx 9/07. CK done Seattle  1 year MRI showed some shrinkage. 4 year MRI 2mm growth nothing conclusive. Trigminal nerve involvment Retrosigmoid Friedmand/Schwartz HEI March 7,2012

It is what it is

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Re: Mid fossa at HEI
« Reply #5 on: August 23, 2012, 05:54:55 am »
Hi Niels,,

I was still at Seton Hall when you had your surgery.  I'm sad I didn't know you were there.  It would have been great to meet.  My middle fossa surgery was on 8/1 with Schwartz and Friedman.  Liz and Lisa's postings were also very helpful for me.  They still are.  It's reassuring to hear others are experiencing similar post surgery symptoms even though each of us will have our individual variations.  I'm walking and doing balance exercises every day.  It is amazing someone can go inside our brains to remove a tumor and we can function as well as we do weeks later! 

I hope for continued healing for all.

Karen
.7cm, left side AN , Tinnitus, Hearing preserved, Middle Fossa 8/1/12 at HEI, Drs Friedman and Schwartz, Sharing your story is extremely helpful to me.

millie

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Re: Mid fossa at HEI
« Reply #6 on: August 24, 2012, 12:04:26 am »
Niels and everyone-
Thank you for sharing your journeys. So many thoughts, feelings,  worries and hopes mirror my own You are a great help to those of us following in line for our own surgeries.  In unity there is strength.
Millie

LizAN

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Re: Mid fossa at HEI
« Reply #7 on: August 24, 2012, 01:25:45 pm »
Niels,

Yea, you made it through and you are home now!  It is so good to hear from you!

There is a special bond among us here on the forum.  I think it is especially strong among those who go through surgery around the same time. We need each other.  Thank goodness we have this resource!

Sounds like you are doing great.  Keep us posted on your progress!

Liz
8/20/2010 - 9mm AN on left side 
Fullness, tinnitus, mild hearing loss
2/20/2011 - 8mm
4/20/2012 - 12.4 mm
Moderate to severe hearing loss, LOUD tinnitus, deteriorating balance
Facial numbness and twitching, which subsided pre-surgery
Translab at House, 7/3/2012, Slattery and Schwartz