Tumor connected to Brainstem

[Joseph]

After my first surgery (Med-fossa) and then second surgery(translabrynthe approach) only 50% of the 5cm dia. AN has been removed. Yes I too have a devated septum.

My main question is has anyone come across the situation where the tumor is directly and physically connected on the brain stem and what was your treatment with positive or negative results...?Who would you recommend?Where?How?Anything?

[Patti UT]

HI There,  is it Joseph or Stacy??
 anyway, I have a freind who's 2nd AN grew to such a size it had fingers on it and it was spread out everywhere, attached to the brain.  Her surery was 25 hrs long to get it all out.  I could put you in touch with her if you'd like. She does not come on this forum. I know her doc has recently retired.
  I am facing my 2nd AN surgery.  Like you, I had middle fossa the first time round,  will be going with Translab this next time.  I would be interested in knowing the recovery differences you experienced with each.  PM me if you'd like to chat.

thx
patti ut

[Patti UT]

OK, answered my own question, JOSEPH...........    your email had the stacy in it so I was unsure

[sgerrard]

Hi Joseph,

Your situation is quite unusual, and sounds like a particularly difficult case. My only advice is to contact the most experienced surgeons, who are more likely to have an idea of what to do in this circumstance. While there are many good surgical teams around the country, there are not many who have experience with really difficult cases like this one.

I would try Dr. Brackmann et. al. at the House Ear Clinic. You should be able to send them your most recent MRI and get a phone call consultation on what they recommend:
  http://www.houseearclinic.com/acousticneuromaconsultation.htm

Best wishes to you.

Steve

[Joseph]

Thanks Patti,

Well first I'll let you know the middle-fossa was not bad at all as you prob already know. The translabrythe is not a good one, first if all your hearing isn't gone on your tumor side it will as a result of surgery, Next it seemed much more painfull. I had some bad swelling issues both times but the second surgery required a lumbard (not sure on spelling)spinal tap to release pressure of csf fluid buildup.
You may even experience facial parallysis, best if not permanent but that will depend on surgery. Stretching the facial nerve will cause temp. facial parallysis but if the nerve is severed it is permanent and if so demand immediate re-attachment surgery so your face heals quicker.
Why? If you allow facial parallysis for too long you may experience dry eye which is bad because your eye won't blink and may dry out without constant moisture(eye drops and ointment). All will be very difficult to adjust to but plan to take some time to heal physically and try to focus your mental attention away from your conditions. Chances are you will have complications most important is to remain optimistic if possible and take some time to get to re-focus on your personal strengths.

Thanks Steve,

     I will definately look into that...

[jerseygirl]

Hi Joseph,

I had two surgeries, one in 1988 for a giant 6x3x3 cm AN and one in 2007 for a 2.5cm regrowth. Both tumors were connected to the brainstem and the second one was only at the brainstem (leftover from the first surgery), so I faced the same situation. Since the second surgery, I already regained my balance and most of the energy. Most of the hemiparesis I ended up with is gone, my facial nerve was saved both times. All of the tumor appears gone at  MRI. Life is good now. I am sorry you have to go through this but hope your nightmare will be over soon.

I visited a lot of neurosurgeons and radiation specialists before my second surgery and can recommend in your case only those that deal successfully with very large tumors at the brainstem. I noticed that you are in  CT, so my first recommendation is Dr. Sen (St. Lukes Roosevelt hospita in New York. He will explain your situation to you in detail without pressuring you to make a decision either way. He is absolutely worth a trip to NY. Another good thing about his consult is that he accepts so many insurances, so at least financial aspect will hopefully be taken care of. Secondly, House Ear Clinic (which you already got a recommendation for) has a stellar reputation. They do a lot of ANs of all sizes, give free consult over the phone and respond very quickly. Both Dr. Sen and HEI did repeat surgeries more than a few times.

I am really surprised that your first surgery was middle fossa. It is usually done on a small tumor in an attempt to preserve hearing. Are you sure it wasn't retrosigmoid? If that is the case, then endoscopic surgery at SBI can go through the existing metal in your head and you will end up with painless brain surgery, like I did. They are expensive though and that puts off a lot of people.

Who were the surgeons in your case and why only 50% of tumor was removed? What is their recommendation regarding the remaining part? You can PM me if have you want.


              Eve