What about the hole in my head?

[arcteryx]

Could somebody please explain the process for "replacing" the surgical hole which is drilled? I've heard that various methods have been used, mostly involving fat cells from the abdomen. In general, how large is the hole in your head? Is the same skull bone which was removed usually replaced? If not, what protects the brain from intrusion afterwards? Is there a preferred method?

Also, I've read that retrosigmoid has fewer post-operative complications (ex: headaches) IF intradural drilling and the use of metal retractors are both avoided. Anybody know what intradural drilling is and whether these things can be avoided?

HEI seems very pro-translab, but I'd like to at least TRY to save my hearing with retrosigmoid or debulking & radiation (even if the chance is slim). Several other neurosurgeons I've spoken with all agree that retrosigmoid would be preferrable in my case. I'd like to go to HEI because of the great things I've heard about them on here, but I'm worried because I feel like I'm "forcing" them to attempt retrosigmoid over their own translab preferenace. Any comments? Anybody ever had debulking performed at HEI?

Thanks for your help!

[Patti]

I had RS 5 years ago (4 cm tumor) and have a hole in my head.  I thought that was normal but I hear of everyone else getting their hole covered.  Maybe because it is cosmetically not-visible.  I will have to ask the doctor when I see him.  Patti

[Rex]

I had translab, with this approach they just use abdominal fat to fill the void left by the bone that is cut away.  So there is an arc  around my ear (about 1/3 of a circle) where the bone has been cut away and replaced with fat.

My understanding is that for midda fossa and retrosig that the piece of skull that is cut out to gain access to the tumor is put back in place and secured with either titanium plates or mesh.

Like you I would be hesitant to have a surgeon perform a procedure which he did not seem "bought into" performing.  How big is your tumor?   If traveling to Silicon Valley is an option, my surgeon (Dr. Jackler) is excellent and very experienced with both translab and retrosig.

[stein78]

Here is how it was explained to me, they used the retrosigmoid approach:

They drill out your mastoid bone in your skull, about the size of a quarter.  The mastoid bone is honeycomb like so it has air pockets in it, so it comes out in chunks I guess.  When they went to put everything back, they packed fat in along with the bone that they just took about.  The fat helps everything seal together.

At first my AN side looked a bit puffy after surgery and it even was pushing my ear out a little.  But after everything settled down, it is sunk in just a little, but you can't even tell.  So I don't have a whole in my head, just what I call a valley or dent on the side of my head by my ear. 

[Jeff]

Hello,

When I was first diagnosed with NF2, I spoke with Dr. Friedman at HEI and Dr. Spetzler at Barrow Neuosurgical Associates in Phoenix. HEI recommended translab (my tumor was large, but my hearing was perfect), but Dr. Spetzler was willing to use the retrosigmoid approach in attempt to preserve my hearing (I was a middle school band instructor). I chose to go to Barrow and at least try to save some hearing. Unfortunately, it didn't work for me. I have since gome to HEI and had the remainder of that tumor removed using the translab approach.

If I had to do it again, I would still try to save my hearing first, especially since I have a large AN on the other side. To me, although having 2 surgeries was tough, it was worth a try. Dr. Friedman also talked to me about a middle fossa decompression surgery. Basically, some bone is removed that allows the tumor to grow away from the brainstem and nerves in hopes of preserving hearing for a longer period of time. I am not sure that any non-NF2 patients would be interested in such a treatment. I decided that I didn't want to do it.

My doctors at HEI used both the fat-pack and a titanium plate for my translab surgery.

I hope I have said something that helps,

Jeff

[dgrummer]

My husband’s surgery is next Thursday and we just returned from his pre-op appointment last week.  I asked this specific question b/c I couldn’t remember what they had told me in the beginning.

Since he is having RS approach – they will drill about a quarter size hole - replace the bone when they are done and secure it with titanium plates.

We talked to two other NS who suggested translab (one of which was Dr. Brackman)– but it was before anyone had done a hearing test – and they all assumed his hearing was gone already.  They both said they would use fat from his abdomen to ‘plug the hole’. 

His tumor is 2.8cm and his hearing is perfect.  My husband is having RS because that is what our neurosurgeon suggested.  His reasoning was he wanted to try and save some of the hearing – if possible (although unlikely) – but also in his opinion was the better approach giving the size and location of the tumor.

I have also read that in the past the bone was not replaced in the RS approach – leaving an indention – and some theories are that could cause additional headaches that are often reported by the RS approach.  Some have gone back in – covered the hole and the headaches subside.  I don’t know how much truth is in that though.

I agree with Rex – that whichever approach your surgeon feels more comfortable with is what I'd go with.  My husband didn’t want to travel to California and wanted to stay close to home.  We discussed having the TL approach done here and our neurosurgeon strongly advised against it – so we felt we were better off trusting him – since we certainly didn’t want to talk him into doing something he felt so strongly against.

[Jeanlea]

Hello,

I had the translab procedure on my 3.5 tumor.  Because of the size of my tumor (and maybe its location) my doctors said they couldn't save my hearing which was nearly normal.  My doctors cut a hole in the bone about the size of a quarter.  They covered it with titanium mesh and used bone cement to fill in the hole.  I can't even tell where it is.  I can barely even find the scar under my hair and it's only been 5 months.  I have been lucky in that I haven't had a problem with headaches.