Dr. Lunsford at UPMC

[WilliamS]

I recently found out that I have a 3.3cm Acoustic Neuron.  Like many of you, I have received various conflicting opinions about what the treatment should be.  At my age (70) I am not very interested in surgery.  I spoke with Dr. Linseed at UPMC and he told me that given my mild symptoms ( only hearing loss and slight balance issues) I would be accepted for GK.  The UPMC statistics for GK treatment of 3.0 to 4.0 acoustic neuromas that he sent me are very impressive.  My question is: Does anyone have an  opinions - good or bad?

[Jim Scott]

Hi, William - and welcome, although I'm sure you wish you didn't have the acoustic neuroma diagnosis that brought you here.

I won't venture to answer your question because I simply don't have the kind of medical expertise to offer a credible response.  I do know that your AN is on the outer edge of the usual parameters for radiation treatment but if Dr. Linseed at UMPC is confident that you're a candidate for Gamma Knife treatment, I won't argue the point.  I do suggest that you consult other doctors before making a treatment decision.

For what it's worth, In 2006, when I was just a lad of 63, I was diagnosed with a large (4.5 cm) acoustic neuroma that was impacting my brain stem and giving me real problems.  My neurosurgeon, (with 30+ years of AN removal experience) presented me with a plan to debulk the AN, sever it's blood supply and then (90 days later) radiate the remaining tumor using FSR.  His approach was intended to avoid facial immobility as a result of the surgery and to ensure (as much as possible) that the AN would not re-grow.  Long story short: his plan was a great success.  Tumor debulked, all pre-op AN symptoms disappeared, home from the hospital in 5 days, a relatively quick recovery.  FSR 3 months later was uneventful and later MRI scans showed the beginning of necrosis and shrinkage.  Today, almost 6 years later, I'm doing great!

AN surgery is no picnic, of course, but if your health is otherwise good (mine was) 'debulking' the tumor, then radiating it could be a solution.  However, only a medical doctor can offer you a credible opinion on the feasibility of this approach in your case and, as always, the ultimate decision for treatment lies with you, alone.  I trust this website and the discussion forums can be of help to you as you make that decision.

Jim

[WilliamS]

I probably should have phrased my question better.  What I was looking for was anyones' opinion, first,  of UPMC in general and Dr. Lunsford in particular and, second,  if he and UPNC have a reputation for producing good results.     

[lrobie]

I really like my doctors from UPMC, Dr. Paul Gardner, neurosurgeon and Dr. Barry Hirsh, neurotologist.  I have never had a problem with the facility.  Everyone has always been nice.

Lisa

[windy]

Hi William,

You might want to research cases of tumors your size. Like others, I am not a doctor, but your tumor size does seem to be reaching the outer limits of radiation from what I have read. Radiation takes a long time to work, if it does, and you want to have room for issues like post radiation swelling, etc..., without it affecting your brainstem.

I had GK in Pittsburgh in 2008. My tumor has not shrunk, but has enlarged. I am in fact in a wait and watch period to see if it is going to be considered a failure. I sincerely hope that is not the case and it will stabilize, but am not sure at this point. That is not to say that others have not had good results there, but that is just my story. I don't live anywhere near Pittsburgh, so issues post GK complicated my case. I had to seek help on a number of occasions with my local ENT and a neurologist who specialized in headaches. I still have some lingering issues with pain.

I do wish you the very best in your treatment. It never hurts to get all the information you can from various doctors and research all you have time for through this forum and on the internet. Best wishes to you in your treatment! Keep us posted.

[mk]

Hi William,

I agree with Windy that you should consider carefully the potential issues that patients with larger ANs in particular might face. The biggest concern is swelling of the tumor, which can make the  brainstem compression even worse, cause hydrocephalus, increase in symptoms etc. My understanding is that fractionated approaches, such as FSR and CK are considered a bit safer for larger tumors.

I had a larger AN (2.9 cm at the time) treated by GK. In an effort to avoid swelling, my doctors used a smaller radiation dose than what is usually used. If you look at the literature, the smaller the radiation dose, the larger the possibility that treatment might fail. Long story short, my AN continued to grow and I ended up having surgery anyway.

Beeing told that you can have GK because you don't have symptoms is IMHO not a good reason for having GK. I also was virtually asymptomatic, but still I had significant compression of the 4th ventricle, and the brainstem, at the time of my surgery. My advice is to seek as many opinions as you can about the risks of having radiation, both from an experienced CK centre, and from a centre specializing in microsurgery. I can understand that your age would be a consideration for microsurgery - after all this surgery is not an easy one. A debulking/radiation approach like the one that Jim described, may also be a very viable option.

Marianna

Marianna

[rupert]

Wiliam,    usually the upper limit has been 3 cm.  For reasons of swelling and less chance of successful treatment on larger AN's.   However it seems more and more they are bumping this up, not only with GK but CK as well.   If you wouldn't mind sharing,  what were their statistics on AN's between 3-4 cm and did you ask (or did they give you) any idea on how many they have done in that size range?

[WilliamS]

Between 1994 and 2008 they treated 65 patients with an acoustic neuroms between 3 and 4 cm.  All of them indented the brainstem.  At the most recent review (median of 36 months after SRS) the tumor control rate was 87%.  The article I was sent was published in the Journal of Neurosurgery, Volume 114, March, 2011 starting at page 801.

[WilliamS]

After talking to six different doctors, all of whom recommended their speciality, I decided to go with Gamma Knife and Dr. Lunsford.  I had the procedure Tuesday of this week (3/20/12) and it was pretty much a nonevent.  On Monday, my wife and I met with Dr Lunsford, his head nurse and then one of the residents that would be helping out.  Each of them took their time talking with us and explaining in detail what would happen the next day.   I arrived at the hospital at 6:00 AM and by 6:30 I was ready for Dr. Lunsford to put the frame on my head.  The last thing I remember was sitting up waiting for him and the next thing I remember is sitting up with the frame on.  There was no pain.  That was followed by an MRI and then a talk with my wife while they decided on how to program the machine.  Next I was taken into the operating room and my head was attached to the bed that would move into the Gamma Knife machine. The last thing I remember is them attaching my head.  The next thing I remember is them unlatching my head.  I was told the treatment took 50 minutes.  I was then taken back to my room, fed a very nice breakfast and discharged back to my hotel.  It was all over by noon.  I was one of three patients treated that day.  I took a nap that afternoon and that evening we found a restaurant near the hotel and had dinner.  We flew home the next day.  Thus, ends the first part of this treatment.  Now I wait to see what happens over the next two years.  From what I understand, by the time two years pass, most of the good or bad results will be known.     

[Jim Scott]

William ~

Thanks for the update.  It appears as if your GK treatment went exceedingly well.  As you noted, the results should be apparent within a few years. 

Jim