Recovery so far- USC with Dr. Friedman and Dr. Giannotta - absolutely brilliant

[Natalie29]

Hi everyone,

Reading this forum and your experiences helped me with my journey through treatment. I am now 13 days post-op and want to share my recovery so far  .

I had a translabyrinthine craniotomy at Keck Medicine of USC with Dr. Friedman and Dr. Giannotta. I travelled from far away for the surgery, it was completely worth it, and I can’t thank enough everyone there. As it was my second surgery (the first being retrosigmoid done 8 years ago elsewhere with only half removed), I was very anxious remembering the difficult and long recovery I had last time. However, this time I can say it was a corrective (emotional and otherwise) experience. The whole medical team at USC was very professional, helpful and comforting - the doctors, Kris the patient navigator (who helped and is still helping with any question or concern I have), the pre-op team, the anaesthesiologist I had (I had no nausea after the anaesthesia!), the nurses, the physiotherapists, the occupational therapist, the administrative staff and Kris from "Keck Suits" where I am staying during recovery before flying home (very nice and convenient apartments inside the hospital).

Dr. Friedman and Dr. Giannotta explained the procedure, patiently answered all my questions and made me feel I am in great hands!!! My surgery was 4 hours. I was up and walking short distance the following day while still at the ICU, and was discharged after two nights in total.
My acoustic neuroma turned out to be originally misdiagnosed, and was a facial nerve schwannoma, so they were able remove 95%, leaving a de-vascularised tiny residual to avoid disrupting the facial nerve. Hopefully, it will not change in size, and might even decrease with the lack of blood supply, but will be monitored (MRI) in 6 months from now.
They were able to completely preserve my facial nerve, no weakness at all! The first few days after surgery I had a slight numbness on the right side of my tongue and face, which already resolved. Also, the first days I had pretty bad headaches, but medication helped, and now I am completely off pain meds. Besides losing my hearing on the right side (which I knew would happen due to the translabyrinthine approach) no major issues so far. I had a strange feeling that my ear (operation side) was full of liquids for about a week, and it is still slightly misplaced (the doc's say it will 'migrate' back with time  ). One weird post-operative symptom I do have is night sweats, which are improving (not sure it is related, but did not have them before). So i'll be happy to hear if anyone else is familiar with this.

I am a little nervous about the possibility for the CSF leak complication, especially if it happens after I am back home. What are the chances to have a leak more than a couple of weeks after surgery? I have been suffering from a runny nose pretty often the past years, and when it’s cold my nose can just start dripping. Can I really be sure that I will know if I have it?

The past week I was already walking about 5 kilometres a day, slowly increasing pace and distance. Probably due to the vestibular nerve being damaged in the first surgery, I didn't suffer from vertigo and I am also able to take car-rides (as a passenger), which I was not able to do last time. I feel better and stronger every day. I truly am so very grateful, and hope to continue with an uneventful recovery.     
 
All the best,
Natalie

[ANSydney]

Hi Natalie,

Thanks for sharing your experience.

Are you saying your original surgery did not identify (or tell you) that it was a facial schwannoma? Given that only half of the tumor was removed in the first operation, it suggests that the surgeons were aware that it was a facial schwanomma.

With the night sweats, were you given any steroids?

Not sure about the CSF leak, particularly if you have a runny nose otherwise. Maybe ask the doctors how to differentiate between a runny nose and a CSF leak before you leave for home.

Yes, vertigo the second time around would not be an issue since the vestibular portion of the nerve was cut (however, if it was a facial schwannoma, why cut the vestibular portion of the vestibulocochlear nerve?).

Good luck with your recovery and I hope everything turns out well.

[ColleenS]

Natalie, thanks so much for sharing on how you are doing. I am awaiting my first surgery and as you can imagine - I am a bit overwhelmed  When I read stories and experiences that turn out okay - it really helps!

[sheren]

I had the same experience u had with the same team of doctors! Cannot thank them enough n say how glad i am to have chosen them (: so happy to hear your experience. as for the cfs leak, you should go back and check with the doctors. i remember how many times i went back to check because i had a few drips of fluid coming out of my wounds(turned out it was nothing but better safe than sorry right). hope everything is well!

[Yigalr3010]

Dear Natalie
I understand that you origanlly from Israel but desided
To make the surgery in USA.
I  have AN found two weeks ago and from Isreal as well.
I am now trying to figure the best options.
My AN is 15*6 mm.
Do you think it is butter to do it in USA?