Need advice...

[Joseph]

Only one week till Gamma Knife...

  I am not sure this is the best option at this particular point in the tumor resection. I have undergone 3 surgeries thus far and have taken the tumor from a very large tumor (compressed 4cm+) back in 2008, to a now medium (2.5cm x 3.3cm). I have facial parallysis, SSD and have passed two blood clots inside my head within the last two years. With the third surgery being the most successful one I have also incurred some addition problems such as swallowing problems, frequent coughing spells, and all other sorts of issues in which my ENT stated I may have slightly disrupted my 10th cranial nerve during surgery #3. However the surgeon denies any damage to that nerve and stated " if in fact that nerve was damaged I would have lost my vocal abilities".
  I am getting mixed signals from all doctors and don't know who to believe. All I know is the way I feel and thats confused, so I have experienced all these problems and now am faced with mixed signals from the pros. So, now I turn to here to ask help from former patients who have undergone these obsticles and may enlighten me. The Gamma Knife team is the best in this area and believe statistically I am in advantage to this treatment option. However my tumor is a little above the maximum size allowed for treatment and the residual tumor rests directly beside the brainstem on my left side. They stated 5% of that portion which touches the brainstem will be unable to be treated. Addition surgery may come with complications of additional nerve damage and I have only recently begun to enjoy being able to swallow food without coughing, so another surgery worries me but is my other option to consider. I am scheduled for treatment on the 13th of August 2010. Looking for advice...Thanks 
   

[Jim Scott]

Joseph ~

With your experience, you certainly have reason to be hesitant with undergoing GammaKnife.  While I'm sorry to learn of the complications you've endured with attempting to rid yourself of your AN, I'm not a doctor and so, cannot offer you 'medical' advice.  I will comment that it shouldn't be this hard to destroy an acoustic neuroma and that many of us know what receiving mixed signals from doctors is like: confusing.  

As you may recall, I had my almost-5 cm AN 'debulked' (surgically reduced) to approximately 2.5 cm, then underwent FSR (26 sessions) which effectively destroyed the remaining tumor's DNA.  Fortunately, I had next to no complications, even though the tumor had been pressing hard on my brainstem, pre-op.  On that basis, I can state that FSR was very effective - for me.  Although I sense that you may be leaning toward yet another surgery, alas, no one, least of all, me, can assure you that having your remaining tumor undergo the GK procedure or surgery will not produce any complications.  We hope, we pray, we encourage but we simply cannot guarantee anything.  I know you're seeking a more definitive answer but I don't see how anyone can give you that.  Ultimately, your treatment is a very personal decision.  My best advice is to go with your instincts (also known as 'your gut').  I wish you success in whatever approach you choose.  

Jim

[free2be]

Joseph,

I cannot even relate to a tumor that size, nor the issues you have had getting rid of it. I certainly am sorry you've had such and time and understand your frustration, concern, and more! The only thought I have is if you aren't sure and you aren't comfortable with what you are being told, get yet another opinion. There are many excellent doctors noted throughout this forum who have a lot of experience with ANs. It never hurts to get another consult before moving forward.

My best to you.
Connie

[Tumbleweed]

I agree with Connie. The best people to advise you are the experts -- neurosurgeons and CK/GK/FSR practitioners. If you can afford to, I would get a few more highly qualified opinions on what is your best option, before you do something you're not comfortable with.

A few world-renowned experts will consult you for free:
Dr. Derald Brackmann (House Ear Institute, L.A.); specializes in surgical resection
Dr. Steven Chang (Stanford U Medical Center; sdchang@stanford.edu); specializes in CK but is also a neurosurgeon
Doctor(s) at Pittsburgh U Medical Center (sorry, I can't remember any names; it's been awhile); widely regarded as the pre-eminent center for GK in the U.S. (longest track record)

Don't let anyone rush you into this. Don't put it off for no good reason, either. But take the time to fully research your options.

Best wishes,
TW

[Joseph]

Thank you everyone for the advice...

I have decided to postpone my GK so I can look into this more. I was recommended to seek advice from Dr. Jho on whether another surgery may or may not be a better option. I would like to debulk this thing a little more before hitting it with radiation to avoid any swelling issues, but if this is not possible I may have to settle with GK. Unfortunately insurance issues always arise with any additional advice from the pros and it takes so much for my people to make these things happen. I don't know where this will lead me or even if I'll be satisfied with the results, but handling this on my own it's good to know I have some people who know what I am going through and take the time out of their own lives to offer some advice. So once again thank you all and I will keep you posted...

[leapyrtwins]

Joseph -

my two cents on this, for what it's worth - consult with Dr. Chang @ Stanford.

Good luck with whatever you ultimately decision; and please keep us posted.

Best,

Jan

[pjb]

I am so sorry that you are going through this I too might be thinking of radiation and but have no advice for you I have to research my options.  But I just wanted to talk to you about the 10th cranial nerve I too have been having trouble with swallowing and issues with my stomach.. I went for a test for the stomach and was advised I now have after my surgery a sluggish stomach in researching it, it is called gastroparesis and could be due to the 10th nerve so of course no doctors are agreeing to this but I had these problems right after the surgery last year. So I just wanted you to maybe see about an endoscope to see if you too are having problems further down...I know your main concern is the AN and do not need anymore tests or problems.. I believe there is a test for the 10th but I have to research it more as to who and how it is done... The only thing with my AN was small 1 cm and not as large as yours and it does make sense that you have a problem with the 10th... cannot understand why I would ..

My thoughts and prayers are with you,

Pat

[jerseygirl]

Hi Joseph,

I think you made a very wise decision to postpone GK. There is one other type of radiation you might want to look into: Novalis by BrainLAb. It is fairly new, newer than CK but is used extensively in Europe where it has a long track record. GK is the oldest type of radiation for ANs and the first installation in US is in Pittsburgh where all the studies on GK came from.

Very often residual tumors that cannot be removed surgically (your case) or regrowths (my case) are irregularly shaped and GK in this case creates "hot" and "cold" spots which are treated with more or less radiation. Novalis conforms to the shape of the tumor and spreads the radiation evenly throughout the entire tumor. That's its main advantage. My neurologist explained all this to me and recommended that I look into it. Another possibility was CK for the same reason. GK, unfortunately, is good mainly for regularly shaped tumors. There is one installation of Novalis in NYC in Mount Sinai hospital. The treatment is done by Dr. Isabelle Germain. (I hope I spelled the name right). I don't know what it entails and if your tumor is too big for it.

I had consultation with Dr. Jho while I was researching my surgery. I would love to know what he tells you. My situation was not good. He has done only one recurrence the year I spoke to him and stated that the original surgery destroyed landmarks on the skull he uses to insert an endoscope. Therefore, he would be doing it sort of blindly, which is a perilous situation to my facial nerve. During the entry, he could potentially destroy it. He did have references from people with new tumors whose surgeries he performed but obviously no references from recurrencies because he has not done any. He was also very weary of the scar tissue from my past surgery which could present an problem. However "he could do it if I wanted it".  I went with SBI as you know.

Please, keep us posted and best of luck in your research!

                    Eve

[6pick]

Hi Joseph,

Just to add one more resource: You might look into Jay Loeffler, MD, Chief: Radiation Oncology at Massachusetts General in Boston. His Clinical Interests are Benign and malignant brain Tumors and is an authority on Proton Therapy, Radiosurgery, and Intracranial vascular malformation.
Phone: 617-724-1548

http://www.mgh.harvard.edu/radiationoncology/doctors/doctor.aspx?id=17145

Very best of luck,

Mark

[free2be]

Joseph,

For what it is worth, I can, at least in part, reiterate what Eve has to say about GK. I was offered LINAC by Novalis, which is what I believe Eve is referring to. Also, from my research I understand that LINAC by Novalis may be as little bit more accurate than CK (like 0.7 mm). It was also explained to me how the cones (I forget the technical term) that narrow the radiation down to fit the tumor are more accurate/flexible with LINAC by Novalis. It was further explained to me that GK uses only (larger, I believe) circular cones and therefore many have to be used to hit an odd shaped tumor and there is overlap and I believe more chance of hitting good tissue. I did not choose to go with LINAC because of the single dose or multiple (28) dose treatment and because the radiologist I saw did not have a tried protocol of treatment sessions for my age. It was more a matter of being uncomfortable with the radiologist than the type of machine. I agree with Eve, that GK is older technology and less adaptable to odd shapes and with all you've been through, I'd agree that another type of radiation might be worth checking into.

I hope you find what you need to be comfortable with further treatment.

Take care,
Connie

[Tumbleweed]

Also, from my research I understand that LINAC by Novalis may be as little bit more accurate than CK (like 0.7 mm).

Hmmm... it was my understanding that CK and GK were the most accurate types of radiation treatments. I thought FSR other than CK had a larger margin of error.

It's also my understanding that the treatment planning has a big influence on accuracy. The most accurate radiation-delivery system becomes less so if imaging and treatment planning are not optimal. That's the reason why it always pays to put your care in the hands of a treatment team with tons of experience.

Best wishes to all,
TW

[Jim Scott]

It's also my understanding that the treatment planning has a big influence on accuracy. The most accurate radiation-delivery system becomes less so if imaging and treatment planning are not optimal. That's the reason why it always pays to put your care in the hands of a treatment team with tons of experience.

That was my circumstance.  A very AN-experienced neurosurgeon (who had 'debulked' my large AN) and a brilliant radiation oncologist (also with AN experience) took over 4 hours working together (with my MRI and CT scans) to 'map' my FSR, because they wanted the best result possible, as I did, of course.  I'm happy to report that they were eminently successful.     Experience counts.

Jim