Has anyone had tumor come back 4 times?

[tichinose]

I was wondering if anyone has to take the drastic approach and having their 7th and 8th nerves completely cut to get tumor out for good? What are the symptoms and problems you would face after this procedure? A last resort I am sure. Thx

[JAndrews]

the nerves dont need to be cut. you need to have a surgeon that can remove the tumor off the nerves. Call House in LA--they can do it. Any surgeon that can't remove this type of tumor without cutting a nerve--shouldn't be doing this kind of surgery

[tichinose]

Dr Friedman and dr Schwartz at house did last surgery and told me where it is they say the tumor is sticking on the nerves and that is only way it can be totally removed.

[PaulW]

Would it be worth trying radiation instead.
Radiation doesn't care if the tumour is sticky or not

[JAndrews]

the 8th nerve is the hearing nerve. Most are removed or cut (not sure of exact answer) thats why so many of us have ssd. the 7th nerve is the facial nerve--Although its difficult to remove this type of tumor it can be done. You may have some facial issues but it usually isn't significant if the right surgeon does the surgery. Maybe the information wasn't relaid the right way from Friedman? Friedman knows what he's doing

[mk]

I agree about the 8th nerve, it is most common than not to have it cut completely (except from hearing preservation surgery), since the tumor grows on it.
Sometimes the tumor is so sticky on the 7th (facial) nerve, that it is impossible to remove completely. Nowadays it is extremely uncommon for surgeons to sever completely the 7th nerve, because of the many issues this may case. This is why it is very common practice to leave a small sliver of the tumor on the nerve, hoping that it will not grow back.  I think that this is what Dr. Friedman may be referring to. Of course this can be a cause for regrowth.

I may have missed your previous posts, but did you really have regrowth 4 times? As PaulW pointed out, radiation to kill the remaining stuck tumor is a very common approach. Have you considered it?

Marianna

[tichinose]

I already did radiation and already have ssd....probably had everything

[Denise S]

Guess I'm a bit confused still to your question in the subject line...about tumor coming back 4 times.
SO, does that mean you had  a tumor surgically removed, then it came back, had removed again & keeps coming back???

Please give a little more info if you can.     OR was this  that you had some residual tumor left around the facial nerve that keeps enlarging or something.

THANKS,
Denise

[tichinose]

Surgically remove 2008 then grew  and radiation...then this summer surgically removed leaving a piece and in 10 weeks later it showing growing again....another mi in Dec...

[Denise S]

WOW, I just went to your profile and read your 1st post and see you started with a 6cm tumor, that is the biggest one I have heard or read about.  And NOW, that make a lot more sense as to what has been going on with you.   

Such a bummer that the radiation you had after surgery didn't help control the residual tumor from regrowing. 

Since you just had another surgery this summer, and you have already had radiation treatment, are you able to now have another round of radiation?

I am wishing you the BEST of luck!!!!   Hope you are doing o.k., you FOR SURE have been through a LOT....can't imagine, 1 surgery was enough for me..

Take Care,
Denise (MI)

[Denise S]

HOPEFULLY my last post will clarify some of the other peoples posts and questions.   

From what I read, this persons' tumor started out at 6cm.   And they have had surgery at HEI and has also had radiation. 

In my opinion you should start a new topic about the 7th nerve.  Maybe give a little about your history so people know a bit about your situation before trying to help you out     As for the 8th nerve, hearing nerve....I would assume you have already had that cut (have hearing loss already???).

Denise (MI)

[tichinose]

They said no more radiation.  Now the tumor is only 2.3 cm so I am getting MRI's about every 10 weeks since the tumor grows so much.  Yeah I lost hearing awhile back and now that darn tumor is sticking on nerves.  I am sort of getting used to things not being normal but who is really...lol

[Ellenmn]

Do you have movement in the AN side of the face now?
When they removed my tumor in 2007 they didn't severe the facial nerve however they did leave a bit of the tumor on it and the facial nerve never recovered. So I have right sided facial paralyzes. They did do a nerve splice after 18 months and I have had to work on it but I can actually move that side a bit. Before the nerve splice it was difficult to do sum things, mainly eating soups and things like that. ( I always had to make sure I got the spoon on the left side of my mouth.) Then it was also the fact that my face was really lopsided.

[tichinose]

I have that problem too eating....I got facial paralysis first time but it didn't get worse the 2nd surgery...li would say my vision is the worse problem now...thx