bone removal to allow tumour to grow

[yardtick]

On Thurs I saw the specialist and he had the operating notes from my surgery back in Sept '06.  The original dr who preformed the surgery never disclosed any info to me.  I was surprised to hear a bone was removed to allow the tumour to decompress and give it room to grow.  He also debulked what he could of the tumour and sent it off to be biopsied.  I've never heard of this and I've been search the net for info and I'm at a loss.  I have a facial neuroma, so I was wondering if anyone out there has heard of this or had the bone removed.

I had a lot of questions to ask but when the Dr was explaining to me that this is an acceptable procedure I was at a loss for words.  He is sending me for another MRI and a follow up appointment.  He put me on Toradol for pain and inflamation and I have noticed some relief.  I was on Naproxen prior but I'm very clumsy and I would bruise like an 80 yr old woman, so I went off of them. 

My face has a noted difference from my last visit with him in the fall.  My eye is more buggier and a have a slight droop in my face.  Yesterday  morning I was in the tub and my husband came in to brush his teeth, he looked at me and asked it I was all right.  It's the first time he has noticed the change in my face.  I find now when I'm applying mascara and eyeliner I feel a definite tug from the side of my nose, down my face, allow my jaw and a portion of my neck.  It takes me longer to do the left eye than the right.  My left eye is also drier.

The Dr still feels the best course of treatment for the time being is for me to watch and wait.  If I should wake up one morning and my face has a very distinct droop I'm to call his service and to meet him at the hospital.  I live 90 mins away.  I really feel this Dr is more competent than the one who preformed the 1st surgery.  I never thought chronic ear infections would lead to this.

I also had a hearing test done....no surprises there, I have 70% hearing loss in my left ear. 

Anne Marie

[lori67]

Anne Marie... Wow.  I've never heard of giving a tumor room to grow!  Isn't the idea for it NOT to grow?  The only reason I've ever seen for removing part of the skull would be to allow for swelling, that way the brain, if it swells, isn't pushing on the hard bone, causing more damage.  I used to work in the neuro unit of a trauma center, and they did that a lot with traumatic injuries, like car accidents and falls, but I've never seen it done to allow something that shouldn't be there in the first place room to grow.  I don't know much about facial neuromas as opposed to other types, so it's very possible this is normal, but it sounds strange to me.

As far as sending it off to be biopsied, don't be worried about that.  If you have anything removed in a hospital, it all has to go to be biopsied.  That's just standard procedure.  I had my wisdom teeth out in a hospital and they had to send them to pathology too.  Turns out they were wisdom teeth - gosh, who knew?  Glad we spent all that extra money for the pathology lab to give us that expert opinion.  I think a 5 year old could have looked in the jar and told me that.

If you and your husband notice changes, I'd have it checked out.  If it's nothing to worry about, I know i'd feel better hearing that from the doctor.  And if it's something that needs to be addressed, it's better to know that now.

I hope you get to the bottom of this.  It must be really frustrating!
Lori

[nancyann]

Hi Anne Marie:  I hadn't heard of that either re: bone being removed to make room for the tumor.
I was told after my surgery that the tumor had eaten some of the petrous bone.

I totally agree with Lori to have any changes checked out by your doctor.
Take care my friend,  Nancy

[OMG16]

Anne Marie I had a facial bone tumor removed last may and they removed allot of the bone.  I was seen on Friday with swelling, numbness, tingling, fever and pain by a specialist at the UW and it seems that they recommend the same as the other Drs I've seen that I have to have more bone removed and this time they are going to remove so much that they said I would have a hole in the bone that would not heal completely closed thus decompressing the area.  It is along VII just closer to the nose and the middle of my face.  I think that from reading your post that yours is closer to your ear, and a nerve soft tissue tumor.   Mine affects the nerve due to the bone is actually swollen and pressing on that nerve.  I also have swelling that goes up into my eye.  Mine is now infected which is causing the fever and I now have a drainage area that has appeared under the eye.  This is not exactly the same as yours but they are talking about taking more bone out just like you had so hopefully this helps a little.  Are you seeing a Dr at a University?  These are the only Drs I found that have seen this sort of thing which is comforting to me because the local Drs had not seen this sort of thing.  They all however are in agreement as to what should be done.  You can PM me anytime and tell me more about it if you would like to.  It sounds very interesting and the closest to what I need to have done.  I want to thank you for posting your story I now feel like I am not the only one even it is not exactly the same as mine.  Kiss to your forehead.  16

[yardtick]

The Dr I'm seeing came highly recommended by Windsong, for some of the newer forum members she past away Sept 24/07 from another illness and is missed very much.  This Dr is amazing and he did note the difference  on Thurs.  He is at Toronto General hospital which is affiliated with Toronto University.  He feels I should watch and wait for awhile longer.  My husband never pays attention to anything.  I could come home from my girlfriend's (she's my hairdresser) with green hair and he wouldn't notice for weeks.  I was just a little startled yesterday when he noticed the difference.  I see it all the time.  You know we are more critical of ourselves.  I find when I'm very tired or stressed it is more noticeable.

The 1st surgeon did tell me the tumour wiped out the 3 bones in my middle ear, but he never said anything about removing any bone.  The neurosurgeon he referred me to wanted to chop out the nerve and with a nerve graft like yesterday.  When I questioned him about watching and waiting he got miffed, but the kicker is he got me confused with another patient because his internet was down.   I'm just so grateful to have a caring Dr who called the 1st Dr for the surgery notes and he took the time to talk to me about it.  I froze and couldn't think afterwards.  I was concerned about having an another MRI and thankfully that is being booked.   

The new meds so far have helped.  Dr Rutka said the next course of action is steriods if these meds do not help.  I was on steriods a month before my surgery and I do not want to repeat that if I can help it.  I have faxed Dr Rutka from work with concerns and he has called me back.  The other Dr never returned any of my calls.  This forum has been a lifesaver for me.  Everyone has been so understanding and supportive not to mention a wealth of information.  If anyone else has an insight on the bone removal, I'm all ears.

Thanks my friends.  OMG 16 thanks for the kiss on the forehead.  I needed that.  Your not Marie from Everyone Loves Raymond are you?  She always Kissed foreheads when any of them were sick. 

Anne Marie 

[leapyrtwins]

I have never heard of having bone removed so an AN can grow, but that's probably just because it wasn't something that was done in my case.

They did do a biopsy of my tumor though.  Even though ANs are 99.9% benign, it's standard procedure to check them out.

[lori67]

Anne Marie - I guess I'm a little confused (ok, well, I KNOW I'm normally a little confused, but you know what I mean..).  Are you saying there was bone removed during your translab procedure?  Because I had that done.  I'm missing part of my temporal bone - kinda right above and behind my ear.  It feels like a soft spot - like on a baby's head.  The reason they do that is to compensate for any swelling in the brain - like i said in my earlier post, it's harder to deal with if it's pushing up against your skull.  I know some people have the bone put back with screws and things after, but some doctors prefer this method.  I guess it's worked in my case since I haven't had any leaks, headaches, etc.  I'm not sure if this is what you're talking about or if I totally misunderstood...

They do take out the 3 small bones in your ear also, but since you're deaf in that ear anyway, you don't really need them.

I know what you mean about your husband not noticing anything.  Mine's the same way.  But, if yours noticed a difference in your face, it must be noticeable - usually I think the people who see us every day don't notice the subtle changes.

I hope this helped and didn't just confuse things even more!  I'm good at that!
Lori

[sgerrard]

I was surprised to hear a bone was removed to allow the tumour to decompress and give it room to grow.
I also had a hearing test done....no surprises there, I have 70% hearing loss in my left ear. 

I could come home from my girlfriend's (she's my hairdresser) with green hair and he wouldn't notice for weeks.
If anyone else has an insight on the bone removal, I'm all ears.
Anne Marie
Sept 8/06 Translab to repair bulging ear drum, turned out to be facial neuroma. Destroyed ear drum & 3 bones in middle ear. 

How do you have a translab, lose the ear drum and the middle ear bones, and still have 30% hearing in the left ear? I've got all that stuff, but I've lost 50%. 

You say you are all ears, but I think you mean you are 65% ears. 

I'd never heard of removing bone to let a tumor breathe until now. It makes sense to me if the idea is to preserve the facial nerve as much as possible, by giving the tumor somewhere else to go. As Nancy will attest, it is worth all efforts to preserve as much facial nerve function as possible.

I hope you have good luck with the medication; I also did not like my experience with steroids. Hang in there, we are pulling for you.

So when do we get to see the green hairdo? I promise I will sit up and take notice.

Steve

[Static]

I agree with what Steve said, it makes sense to let the tumor go somewhere else and off the facial nerve, if that's possible.  I hope things work out for you.  We are all here pulling for you.  But if you're going to color your hair something other than brown, black or blonde, I'd say go with purple, it's one of my favs 
~Karen

[Cheryl R]

Bone decompression surgery is occ done for NF2 pts.  They have tumor removal on one side and then try to keep the hearing on the other side as long as possible so do the bone decompression one to allow the tumor room to grow and hopefully not press on the acoustic nerve.     I know of a lady who had it done but did not really help.                There is a person from here who had it done awhile back but he  gave it another name.             At one time ,my surgeon mentioned it as a possibilty for me as I am NF2.
I am surprised it was not explained to you more at the time of your first surgery.   
                                          Cheryl R

[marie]

I have had the bone removal surgery.  I am NF2 and am deaf on the left side.  When  a right side AN was discovered in 1993,  we started  my ongoing watching and waiting.  In 2002 the tumor had grown to the point where it was beginning to affect my hearing.  In November of 2002 I flew to Los Angeles to have the decompression done.  At my last hearing test in October, 2007 they said that I still have 80% of my hearing.  I have gotten a hearing aid, and it helps.   I was told that they hoped for usable hearing for anywhere from five to twenty years.

If anyone has questions, I will be glad to answer them.
Marie

[Raven]

I'm NF2 and deaf in the left ear. Had the AN on the left side removed a few months ago via the middle fossa approach and 8 days later had bone decompression done on the right side, this was also thru the middle fossa approach. The facial nerve is not touched during bone decompression. Hearing on the right / good side went up from 40% to 82%, worked great for me.

John

[yardtick]

Oh but my hair is now puprle and red.  The base is an eggplant colour with blue red chunk highlights.  My husband just looks and says oh yeah that's nice, how much?  I'll have to get one of my son's to take a new photo and post it.  Steve you better be paying attention

Now back to this bone removal.  Just so you know the first ENT surgeon only decided to operate on a whim.  I had no MRI done prior only a 2 minute CT scan.  I complained about the the shooting pain from the top of my ear across my temple and of numbness in face.  I thought the numbness was a result of headaches and sinus inflamation.  The tumour eroded the 3 bones in the middle ear. Thank goodness he did use a facial monitor on me, and gosh was my chest bruised.  He never ever explained a blessed thing to me.  I cried many times to his receptionist about post-op headaches, not being able to open my mouth to brush my teeth, eat or yawn and dizziness.  I would beg her to have him call and guess what I'd still be waiting. 

Last night I had a very weird sensation.  It almost felt like an elastic band snapped where my cheek bone joins my ear.  It was painful and I had a difficult night sleeping.  Today I'm sensitive to touch and I can't open my mouth fully.  Can anyone relate to this?  No pounding headache so I guess that's a good thing.

Anne Marie

[OMG16]

Anne Marie  I sure hope my kisses help more than Marie's on Everybody Loves Raymond.  I sure do miss that show.

I can't wait for your pictue.  How much fun and isn't it just like a man to say nice and what did that cost you.

My problem was only visible on a CT and the ENT said that the numbness and the sharp pains that are similar to the rubber band thing you describe is the compression of that nerve.  It also happened after the tumor surgery in May when they had stretched that nerve and the numbness was going away and the nerve was regenerating.

My son after having a very bad seizure dislocated his jaw and he had the rubber band snapping and could not open his mouth without it dislocating and after about a week he could not eat, open his mouth all the way and the area was sensitive to the touch.  So maybe it could be your joint there?  I would make an appt with your dentist and Dr and see what they have to say.  You should not have to suffer and I think they owe you an explanation at the very least.

Let me know if this info is any help.  Also let us know what you find out.  Lots of kisses to your forehead and a great big hug. 16