Author Topic: 3 month post-retrosigmoid update  (Read 2658 times)

mk

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3 month post-retrosigmoid update
« on: August 17, 2011, 02:03:15 pm »
Hi everyone,

It is now 3 and a half months post my retrosigmoid surgery. I already had my 3 month MRI but didn't post an update yet because so many things are going on (non AN related: see flooded basement).

I am happy to report that everything is almost back to normal. The numbness is completely gone (even though it came back with a vengeance at 2 months post-op, only to disappear again) and the only neurological deficit I have right now, other than SSD, is the lack of tears in my eye. I didn't experience any balance problems, and I have been riding my bike (I even rode a mountain bike). I couldn't have asked for a better result and I can't say enough good things about Dr. Akagami and his team. Best of all, Dr. Akagami reviewed my MRI and he said that he is very pleased with how everything has moved back and that the tiny sliver that he left on my facial nerve is not visible. He asked for another MRI in one year - this is the first time in years that I feel that I am "off the hook" at least for now.

Out of the recovery journey, what I found most difficult to deal with was the neck/shoulder pain, which was something that I didn't expect. The shoulder pain was due to an older injury that was aggravated because of the positioning during surgery. The back of my neck at the base of the skull was very sore (and still hasn't healed completely), I suppose because the muscles/nerves in the area were cut. I experienced quite a bit of pain which made me miserable for a few weeks, but I am much better now. The sore neck prevented me from driving before 6 weeks post-op, even though I didn't have any balance problems or dizziness, and I would have been otherwise ready to drive earlier.

For the newbies here, and for those that don't know my story, I had retrosigmoid after failed GK. I consulted with many neurosurgeons and I was given doom-and-gloom scenarios which basically gave me 50-100% chance of facial paralysis. Fortunately because of this forum I found a very skilled, talented and compassionate neurosurgeon who together with his team was able to remove the tumor without further damage to the cranial nerves (my hearing was pretty much lost before surgery). So for those who are facing negative prognosis, don't despair, just keep looking for the right doctor(s).

Lastly I have a question for the people who like to read MRIs: The radiology report that I just received mentions an "enhancement of the pontine  medullary junction" in the area where the tumor was. Of course I scanned it and sent it to Dr. Akagami for his opinion, but I was wondering if anyone else has read in their reports about an "enhancement" post-op.

Marianna
GK on April 23rd 2008 for 2.9 cm AN at Toronto Western Hospital. Subsequent MRIs showed darkening initially, then growth. Retrosigmoid surgery on April 26th, 2011 with Drs. Akagami and Westerberg at Vancouver General Hospital. Graduallly lost hearing after GK and now SSD but no other issues.

Jim Scott

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Re: 3 month post-retrosigmoid update
« Reply #1 on: August 17, 2011, 02:36:37 pm »
Marianna ~

Thanks for that very positive 3-month post-op update.  I'm delighted to learn that another AN (retrosigmoid) surgical patient had an outcome similar to my own, which was excellent.  I wholeheartedly agree that finding a skilled, compassionate doctor is a key to having a good surgical outcome. 

I can't offer an explanation of the terminology in your MRI report but I trust that it isn't anything to worry about.   Please let us know.  Thanks - and enjoy your continuing recovery!

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.

Phillies

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Re: 3 month post-retrosigmoid update
« Reply #2 on: August 17, 2011, 02:38:39 pm »
Glad to hear you are doing well. Will the tears return to that one eye at some point?

mk

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Re: 3 month post-retrosigmoid update
« Reply #3 on: August 18, 2011, 07:29:35 pm »
My understanding is that tears may or may not return. It all depends on the healing of the facial nerve which can be very slow. From what I have seen here on the forum  dry eye, at least to some degree, is a very common complaint, even years after surgery. I must admit that it is quite annoying and a cause for frequent infections for me. Actually I think I am experiencing the onset of such an infection now, and I am trying to deal with it with some steroid/antibiotic drops that my optometrist prescribed.

Marianna
GK on April 23rd 2008 for 2.9 cm AN at Toronto Western Hospital. Subsequent MRIs showed darkening initially, then growth. Retrosigmoid surgery on April 26th, 2011 with Drs. Akagami and Westerberg at Vancouver General Hospital. Graduallly lost hearing after GK and now SSD but no other issues.

Heidi in Omaha

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Re: 3 month post-retrosigmoid update
« Reply #4 on: August 22, 2011, 09:13:32 pm »
Marianna-
I'm happy to hear so many positive things about your experience. I'm scheduled for retrosigmoid in September. I'm glad for you and the things you've been able to accomplish. I hope everything else continues to improve.