Monday, November 30, 2009

The Surgery - Are you sitting down?

The surgery again is a very typical procedure for NF2. Since the hallmark of NF2 is bilateral acoustic neuromas -AKA vesitbular schwannomas (tumors on both auditory nerves in the brain on each side of the head), most have this type of surgery at least twice.

Above is a comparison of MRI images taken of my brain over the last 5 years. The top left is the latest date and the bottom right image is the most recent.

Top row left to right:

1) August 2004 2) April 2006 3) September 2006

Bottom row left to right:

1) December 2007 2) March 2009 3) August 2009

As you can see, I have been dealing with a number of tumors and just not one or two. In the first image from 2004, the large tumor on the left (which is actually my right side) had become larger after the radiosurgery attempt to stop growth in July 2004. Although it begins to blacken on the consecutive images, the outer perimeter was bright white indicating the tumor was very much alive. In September 2006 you can see how my brainstem is getting squeezed between the 2 tumors and was nearly pinched off within milimeters prior to my first surgery a year later in september 2007.

on the bottom is what it looked liked after the September 2007 surgery. As you can see there is still tumor left behind because it is attached to my brainstem. The removal of it could be very disasterous and cause me harm. Therefore, as much of the tumor is removed that the surgical team feels is safe to protect me from damage.

How this is done for such a large tumor from what I understand is that they get inside the tumor (sort of like puncturing an orange). Then they use a sonicator which vibrates and breaks up the inner material which is then sucked out. What is left behind is the outer portion or "shell" of the tumor adhered to the brainstem. This procedure is what is know as a "debulking" surgery. It means they make the tumor smaller and take out as much as safely possible but do not do a full removal.

Now about the other tumors everywhere.....In 2007, they were able to remove the tumor adjacent to the vestibular schwannoma. This additional tumor was of a different type known as a "meningioma" and was not adhered to nerves. Therefore, they were able to entirely remove that one.

Now, to the surgery this October......Since 2004, we were very aware that I would most likely need to have surgery on the other vestibular schwannoma which was not radiated. Further, with the great degree of difficulty I encountered from the radiosurgery for the first tumor, it was not a good idea to try radiosurgery again for this tumor type. It just took me this long to accept it. I was told I needed to have surgery again a year and a half ago but I was not ready yet. :-) In January 2008, I was doing pretty well with recovery from the first surgery and I felt I really needed a break before doing it again. By September 2008 I was doing great and there did not appear to be significant growth so we postponed surgery.

Unfortunately, my scan in March 2009 revealed signifcant growth where the tumors needed to be seriously addressed. The tumors seemed to merge making it unclear that it was not one large tumor. We believed it was just 2 tumors again but when they opened me up, they discovered the mass to be a cluster of 3 tumors in addition to the vestibular schwannoma on the acoustic nerve.

At my checkup last month, the pathology report indicated the cluster of 3 tumors to be of 2 different types (a trigeminal schwannoma on the trigeminal nerve and 2 more meningioma). I believe those tumors were removed entirely. It will take some time to see the result on an MRI scan because the swelling needs to go down of the scar tissue. If you will notice the tumor removed in 2007, continues to get smaller. It takes a long time for swelling to go away.

The picture of the incision is from a day or 2 after the surgery. It is very typical and the approach is known as "retrosigmoid". It healed quite nicely and I feel that it is covered by new hair.

Question you may be pondering.....

If some tumor is left behind, will it still grow?

Yup! Hopefully mine will not grow back for a long while and not until some other treatment becomes affected. There is no cure. That is why it is important to me that you help me to support and fund NF2 research.

Please feel free to ask me any questions on the blog and you can ask anonymously if you prefer.


Derrick said...

Hi there! I am 23, and was told that I have NF2 last week. Could you talk to me a little about the surgery? I know it's really the least of my worries, but the breathing tube idea scares me something fierce. Thanks!

Anonymous said...

I was recently DX with NF2 and I am actually scared to see what the specialist has to say! But I am glad that I cam across this page! Good Luck! Prayers

John Dudley said...
This comment has been removed by a blog administrator.
Rebecca said...

Hi Derrick and Anonymous! I would be happy to talk to you about your upcoming surgeries as well as put you in contact with other patients I know both nationally and internationally. I have not blogged for awhile but I am the administrator on facebook for 4 different patient and family support groups. You can send me an email to bluediverbeck AT yahoo DOT com

Rebecca said...

By the way, at this time I have successfully endured and recovered from 3 brain surgeries. :) My last one I ran a full marathon less than 5 months after undergoing the knife.

Anonymous said...

Hi there my partner is undergoing this today as we speak 3 tumors compressing his spinal cord I'm currently 5 months pregnant and we were told he had nf2 2months ago all so much so fast u really are a insperation and just wondered how u are today as I seen these posts were a wile ago and hearing speach balance ect how were u? does it improve? All the best u can email me at many thanks

Anonymous said...

I came across this post via google sorry new to this