Hypoglossal-Facial Anastomosis -Kaiser Northern California

[duongvan]

Hi all,

I am new to this website and thanks you all for the great comments, It's very helpful. Anyway, I have a question:
Has anyone ever have Hypoglossal Facial Nerve procedure done? I had a surgery in Janurary of this year 06 with 3.5 cm Retrosigmoid/Sub-occipital Approach. I completely lost my right hearing along with facial paralysis. I went to see a Dr. 2 weeks ago he recommended for Hypoglossal-Facial Anastomosis procedure done in which he will use tongue nerve to connect to facial nerve.

Please write. Thanks

3.5 cm AN Retrosigmoid/Sub-occipital - Dr. Stephen Nutik - Kaiser Northern CA.

[Kathleen_Mc]

Yes I had that done about 3 months after the orginal surgery. It helped with facial tone some and it helped with eye closure. It allowed some movement of that side of my face if I thought about it and pressed my tongue to the roof of my mouth and things like that. It was a simple surgery in terms of recovery and helped the other things I have had done since (muscle transfer, nerve transfer and grafting and facia transfer). Kathleen

[duongvan]

Kathleen, Thanks you for your responde;
How long was the Hypoglossal-Facial Anastomosis surgery? How long did you stay in the hospital? how were your speech and swallowance? Did you have any sensation in you tongue? were there any complications after the surgery? Did it work after the recovery? Did you have all the procedures done at the same time? Thanks Kat.

[Kathleen_Mc]

duongvan: I cannot rememver the length of that OR, I think it was around 3-4 hours and I stayed in hospital 3 days post-op and was off work 6 weeks post-op (gold standard for operations here in Canada to be off 6 weeks). I do believe I had a period of adjustment for speech but not long, I really was still adjusting my speech from the orginal surgery. Swallowing was not an issue and I had already learned not to chew on that side or I'd choke, and it remains that way to this day. I was still using straws for a period after this surgery. I do have deminished sensation on that side of my tongue but it is not of any real issue and the tongue is contracted on that side but this is not an issue in daily life either. When I had it done the sole purpose was to keep the area "stimulated" and it was to "babysit" the area to prevent contractors of the muscles there and I didn't know I could even have any plastic repairs done to my face at that time. It wasn't until a few years later that I contacted a plasitic surgeon and had the remainder of the repairs done to my face. As you may have read elsewhere I have had many things done and the end result is an appearance at rest that I am very pleased with and one I can live with when smiling, talking etc. Kathleen

[duongvan]

Kathleen: Thanks for the information but I have more questions: When was your original surgery? How long was recurrence tumor from the first surgery? And Did you consider other treatment beside surgery for your recurrence? When did the nerve start to function again after Hypoglossal?

Yes, The standard for Disability is 6 weeks here in Calif as well but I extended my disability for 4 more week, I am still at home for 2 more weeks, I'll be back to work this months 20th.

My Dr. recommended that I should go with Hypoglossal procedure done in June 06 but I am so afraid of surgery and the hospital environment.  Please write. Thanks Van.,

[Kathleen_Mc]

Van: My orginal surgery was Nov. 1990, the 7-12 was done in Mar. 1991 and I think it started functioning around 6 months post-op. My regrowth was found in 1997 although I wasn't told until 1999 (long story about an unethical nuerologist) and during the 5 years that followed I did a considerable amount of research into Gamma Knife and the Linac (we had Linac here in Canada and then got Gamma Knife just last fall). In the end I decided to stick with what I know.  The main reason I needed treatment was I couldn't psychologically handle having something growing inside my head, there was no physical need for the regrowth to be removed at this time, I was just terrified it would grow to the size the orginal one was and I would have to undergo 15 hours of surgery again, the doctor's reassurances that this likely wouldn't happen, that close monitoring would stop that didn't help, with each passing year it grew and I knew that meant a longer surgery and higher risk of having something bad happen while in the OR.
I can understand being afraid of surgery, despite having had many I sill am afraid and thank my lucky stars each time I awaken in the recovery room/intensive care and realise I made it through unscathed. Kathleen

[antoinette]

I know of many people who had it done. It works well and is an usual procedure following the cutting of the facial nerve.
I also know personally 2 patients who had it done. it takes a few months to give satisfactory results.
Best wishes,
ant

[ld_runner]

I had the H-FA procedure done in 2004 at the University Of Maryland Hospital.  Unfortunately, it had no impact on my right side paralysis. I hope you have better results.  Good luck.

[duongvan]

Id_runner,

I had mine done last Month 6/15/06, Dr. told me I have to wait at least 6 months before I can see any results. I had my AN surgery in January 06 so I believed the timing of your original AN and H-FA is crucial.

So When was your AN Surgery? Thanks

I had the H-FA procedure done in 2004 at the University Of Maryland Hospital. Unfortunately, it had no impact on my right side paralysis. I hope you have better results. Good luck.

[Karen]

I had the hypo done Jan 2004.  It worked well for me.  I have movement on the bad side now.  In fact too much I am going to facial retraining with Jackie Diels in Wisconsin.  Any questions feel free to e-mail or ask..  Karen