6 weeks post retrosig

[jenichol]

Hi all,

I just wanted to post an update on how I am doing.  I had my 6 week followup MRI and MD visits this week.  MRI was good with only a small piece of tumor remaining on the facial nerve.  I don't need another MRI for a year .  I currently only have minor facial weakness.  I have been instructed to practice frowning , so hopefully others will understand that I am only exercising. 

My biggest problem is continued wonky-woozyness, but I am exercising daily and am confident this will continue to improve.  Between disequilibrium and my hip , I am still using a cane when I go out in public. Furthermore, I have continued to experience some headaches but I believe they are more from my neck now and not nearly as intense as they were initially.  I am also learning to adjust to life as a "numbskull" (at least 1/2 of one anyway) but my surgeon says this will get better.  It kinda feels like the back right side of my head sticks out. 

The issues that I have accepted to live with include SSD and tinnitus.

Overall, I have so much to be thankful for!  I have had wonderful support from family, friends, and this forum.  Thanks for reading and responding to my posts.  It is always encouraging and motivating. 

I do have one question that I forgot to ask my surgeon about.  I get electric brain shocks when I am drifting off to sleep.  What is that?  Is this something I should call my doctor about or is it just part of the healing process?

Thanks again.

Jan

[LakeErie]

Congratulations on six weeks post-op. I had the bobble headed feeling following retrosigmoid approach for exactly 7 months. I woke up the day after the 7 month anniversary and wondered what had happened because I didn't feel like my head was moving around. I still have occasional, I'd say even rare, moments of wonky head especially when outside, but they are no more often than I experienced before diagnosis. I don't consider them a problem. At 3 months I was allowed to resume jogging. So, based on my case, you have some more time for improvement to show up.
Also like you, I had a subtotal removal - 95% to 97% - to save the facial nerve. I was grade II following surgery ( House-Brackmann scale ) but recovered grade I ( normal function ) quickly.
The numb skull from scalp nerves cut in surgery remains even at 10 months now, but has diminished in area with time. It is far less noticeable now.
I did not experience the " shocks ' you write about so I have no insight there. Our cases are similar, but my retrosigmoid was a minimally invasive one. The craniectomy was 2 cm across even though I had a large tumor. 2 cm is about the size of a quarter. My surgeon usually uses a dime sized opening for smaller tumors. Do you know the size of your opening? I ask because I wonder about the scalp numbness being related to size of the craniectomy. Also, did you have cranioplasty? My surgeon believes using a smaller incision that is placed between the occipital nerves, higher and lower occipitals, prevents headaches. Using his less invasive method means a smaller incision and craniectomy as well as smaller cranioplasty that avoids the occipital nerves. I never had a single headache. Maybe I was just lucky. Good luck.

[cindyj]

I do have one question that I forgot to ask my surgeon about.  I get electric brain shocks when I am drifting off to sleep.  What is that?  Is this something I should call my doctor about or is it just part of the healing process?

Thanks again.

Jan

Hey, Jan!  Sounds like you are really doing well!  The electric shocks you mention seem to be rather common post op for some...I had them for quite awhile - strangest thing, isn't it!  Mine would happen when I was watching tv at night mainly.  They did eventually go away, though.  Others have mentioned this also...think it's all part of things trying to get back to normal.  The wonkiness should get better also...though some of us continue to have a bit of residual wonkiness which is part of our "new normal" 

Take care and keep us posted on how things continue to go for you,

Cindy

[jenichol]

Thanks Cindy and LakeErie for your replies.

Glad to know others have experienced the brain shocks.  It is kind of freaky.  I emailed my surgeon's admin assistant to ask about them and he said they should subside over time.   

LakeErie, my incision is about 6 inches long.  It extends from the height of my ear to the my mid neck.  I have a titanium mesh for cranioplasty.   I also have clamps on my vertebral artery where it was cut .

It is good to hear from others who have traveled a similar road.  Glad to know I'm not alone in the wonky world. 

Thanks y'all.  I'll keep looking to get better with time. 

Jan

[LakeErie]

Thanks for your reply. We have another element in common. Both our tumors were large enough to involve the vetebral artery. My operative report states the dissection of tumor from the main trunk of the vetebral artery was difficult, but complete with preservation of the artery. I had involvement of a cerebellar artery and a major vein complex as well. It seems the C-P Angle is more than just cranial nerves, it is a sea of important blood vessels as well that make surgery that much more difficult.