AN growing after radiation treatment

[debi94]

Good Morning:
I am hoping someone (in Florida)can help me out with some information to help me make the best decision possible for me from their experiences, so here goes:
2008- diagnosed with 1.5cm AN and I had Stereotactic radiosurgery and have had MRI's every year since.
2012- MRI showed AN has grown to 2.5 cm so the SRS was not a success, the doctor who treated me at a big hospital here in Florida(do not want to name)and who is tracking it with the MRI's yearly never did contact me to tell me of the continued growth even after countless phone calls from me which prompted me to contact another Doctor whose name I got from the ANA site, he has given me the his opinion that he would recommend  the Retrosigmoid approach, I would like to talk to someone who has had this procedure and their experience and if there is anyone who has had a different approach or maybe I should get yet another opinion and a suggestion on physician.   I am just nervous about this and am wanting to make the best informed decision that I can. I would enjoy any or all replies, I specified Florida because of physician possibilities close to where I live which is southeast coast of Florida.
Thank You for any and all help in your sharing.   

[Jim Scott]

Hi, Debi ~

Welcome to the ANA discussion forums.  I'm sorry to learn about your regrowth but glad you discovered our website and decided to register and post your questions.

I'm not a Floridian so I cannot offer you specific doctor recommendations but we have a number of members that are Florida residents who will be glad to offer suggestions.
I did undergo the Retrosigmoid procedure on my AN (in 2006) and it was highly successful with no real complications.  My hearing had been lost in the AN-affected ear so hearing preservation was not a concern for me but the Retrosigmoid approach does offer a small (20%) chance of preserving whatever hearing you may have in that ear.

The Retrosigmoid surgical approach is a very common one that many doctors will employ if the AN is situated in a position where this procedure will be most effective and enable the doctor to see as much of the tumor as possible. 

Seeking numerous physician opinions is usually a good idea but if the advice varies a lot it can be confusing.  However, if a few doctors with AN experience concur on a surgical approach then that pretty much validates it.  The ANA strongly suggests seeking a doctor with much experience in AN surgery so you're being prudent to look for suggestions here and I'm sure our members will rise to help you as they usually do.

Jim

[CHD63]

Hi debi94 and welcome to this forum .....

I did not have radiation for my original AN ..... I had retrosigmoid approach for the first surgery/treatment in 2008.  I did, however, experience regrowth so a little bit similar to your situation.

Upon the advice of several AN friends, in 2011 I sent my MRIs and audiograms to Dr. Rick Friedman at House Ear Clinic.  House will do free consultations/evaluations with no expectation of having treatment there.  See:  http://www.houseearclinic.com/consultation/acousticneuroma  For me it was the best advice I ever followed!  (See my signature below.)

Even though you may not want to go to Los Angeles for treatment, the evaluation would either confirm your local doctor's recommendation or give you another option to think about.

Jim is correct that this is one time when vast experience treating specifically acoustic neuromas is essential.

Best thoughts and many prayers for you making the best decision for you, in your own situation.

Clarice

[mk]

Hi,

I am sorry for the regrowth and for the fact that your doctor didn't contact you to alert you about it. I am not from Florida, but I had surgery after failed GK, so I can relate to your situation. You really need to find a surgeon who is highly skilled and experienced in these surgeries, and who has experience in operating on previously radiated tumors. Get as many opinions as possible. Some surgeons claim that previously radiated tumors are more difficult to remove, and some believe that there is no difference.  The opinions I got ranged from 100% chance of facial paralysis because my tumor had been radiated, to only 5% by the surgeon that I eventually chose.
Different surgeons might suggest retrosigmoid or translab, depending on the location of the tumor and their individual expertise/preference. In my opinion in this case the type of surgery is secondary compared to the choice of the surgeon/team.
Clarice's suggestion about contacting HEI is a good one - we have heard quite a few success stories of patients with previously radiated tumors who went there. We have heard of good surgeons in Florida as well, I am sure someone will chime in soon.

Good luck
Marianna

[debi94]

Hello All;
I am writing to say that upon investigation on internet and a referral from someone who had been there with good luck and great results , that I have scheduled surgery for the 26th of February at House Ear Institute with Dr. William Luxsford and Slattery they have selected the Translab procedure as being the best one for my case. I hate to have to travel so far but I understand HEI is one of the best places to go and after speaking with the Dr. Luxsford and researching him  I am confident that it is the right decision for me. I want to Thank the people who did answer my initial question, though there wasn't anyone else who came forward with any additional information for the state of Florida I am sure there are qualified Surgeons here but I was at a loss to choose and I had read excellent things on House. So now it is wait and pray for a great recovery and few side effects I know everyone's outcome is as different as their individual tumors are different and that my new normal will require some getting used too but I will be glad to have that part finally over and look forward to them being able to remove all of the tumor and learning to deal with the new me. I will post after surgery as soon as I can  to let people know the outcome and progress for any future "special and unique" people who also will be diagnosed with an AN and wondering what to do and maybe where to go for treatment. .   
Thank You

[rjbarker]

Hi Debi,
We did a couple of articles in our ANA/NJ newsletter about failed Gamma Knife radiosurgery, available to read online at www.ananj.org, October 2010 and Sept 2008 issues, go to News/newsletters. Might be of interest to you.
d***

[rmcgurran]

Hi Debi,
I'm not in Florida so have no info for you on doctors but other than that we have a similar tumor history.
I had Gamma Knife radiation treatment on my acoustic neuroma (2.5 cm) in 2008.  I had MRIs each year and my MRI in September 2011 showed growth.  The doctors recommended that I have surgery, just like you, retrosigmoid surgery.  I asked about radiating it a second time instead and they said they didn’t recommend it because they didn’t know the long term effects of radiation and if radiation didn’t work the first time, it probably wouldn’t work this time either.  I decided to have the surgery right away thinking better not to wait and have tumor growth continue.  I had the retrosigmoid surgery in late January 2012.  The surgery was 5 hours and all went well.  The tumor was removed completely!  The negatives were that I lost the hearing on the right side of my head and I came out paralyzed on the right side of my face.  I’m still completely paralyzed on the right side of my face.  I had a gold weight inserted in my eyelid so it will close and that gave me some relief from eye pain because otherwise going into any lighted area was painful for me. 
I think you’re making the right decision in waiting until you’ve researched and heard a number of opinions.  Having the right doctor is so important with your history!  Ask the doctor the question:  ‘How many times have you done this type of surgery on someone who has already had their tumor radiated?”  If you aren’t having any painful symptoms from the tumor, perhaps you could wait a year or two = perhaps a new method will be available that will give you a simpler fix.  Maybe the next MRI will show no additional growth.  It could happen. 
I hope this helps you make your decision.  It’s a hard decision to make.  Robbie

[dtorres135]

Would you try GK again?  My doctor said he would recommend it if it grew back.

[panos]

If you would go for a second GK treatment in a regrown AN would there be a chance of the radiation to paralyse the facial nerve?  should you instead choose  a fractionated radiation treatment? Does any one have information about proto treatment as a second radiation option?
My wife has had an operation then a GK then a second operation and now after the regrowth what?

[nftwoed]

Hello;
   Were you meaning to write: "Proton Beam"? If so, that is a primary, first choice Tx option.
   Just my personal opinion, but if GK irradiation failed 1st try, why seek GK radiation as the 4th Tx unless it's a different form of radiation?
   I was thinking FSR?

If you would go for a second GK treatment in a regrown AN would there be a chance of the radiation to paralyse the facial nerve?  should you instead choose  a fractionated radiation treatment? Does any one have information about proto treatment as a second radiation option?
My wife has had an operation then a GK then a second operation and now after the regrowth what?

[panos]

As I am not yet acquainted with the different forms of radiation treatment,  do you suggest that the proton beam and the GK treatment are of similar forms of radiation whilst FSR is of a different form, so it is worthy giving a try for FSR?
From what I understood from the doctor who operated, one big issue is to preserve the facial nerve which is weak due to the prior treatments and go for FSR because the single dose of radiation will be less and so it will give the facial nerve a chance to stay intact. He did not mention that it is of a different form of radiation. But from what I know the GK consists of gamma  radiation while the proton beam radiation consists of protons and which method  is claimed to be new and more accurate as it regards to the penetration depth of the radiation with the result to protect adjacent sensitive organs. The doctor said that proton radiation is heavy for an AN.
We' ll be glad to receive some thoughts or some experience to the matter so to help us make the right choice..  My very best regards to our old friends angels mk and CHD63 and thanks to everybody for helping!

[panos]

I am sorry debbie94 for taking your space asking my questions but I think that this touches your problem too and might give you an idea of an alternative treatment! Best of luck to you!!

[nftwoed]

  Hello, Proton Beam is indeed a very different form of radiation than GK or FSR. There are many successes with AN though a few have commented on temporary facial nerve weakness. Re, Dr's satements, each Dr. has their favorite and likely develops a bias. There are no guaranteers of any Tx type.
   One of the main advantages of PB, is the beam stops at target AN and does not pass through the head. This halves potential interference with nearby tissue and nerves.
   My personal feeling is different forms of radiation beyond GK were possibly financed by companies in order that they have a market share in radiolgical Tx. To my knowledge, there is not one specific kind which stands heads and shoulders above another in success rate and lack of morbidity, though, FSR does have marvelous theory behind it. GK today, is the best ever, however.
   PB is expensive by way of comparison. I'm unsure if all insurances would cover it.

As I am not yet acquainted with the different forms of radiation treatment,  do you suggest that the proton beam and the GK treatment are of similar forms of radiation whilst FSR is of a different form, so it is worthy giving a try for FSR?
From what I understood from the doctor who operated, one big issue is to preserve the facial nerve which is weak due to the prior treatments and go for FSR because the single dose of radiation will be less and so it will give the facial nerve a chance to stay intact. He did not mention that it is of a different form of radiation. But from what I know the GK consists of gamma  radiation while the proton beam radiation consists of protons and which method  is claimed to be new and more accurate as it regards to the penetration depth of the radiation with the result to protect adjacent sensitive organs. The doctor said that proton radiation is heavy for an AN.
We' ll be glad to receive some thoughts or some experience to the matter so to help us make the right choice..  My very best regards to our old friends angels mk and CHD63 and thanks to everybody for helping!

[nftwoed]

Hello;
   You wrote: "and go for FSR because the single dose of radiation will be less." FSR is not single dose. It consists of several small doses. The overall dose is higher than GK at about 50 gy. but there is a short rest period between Txs. It is accurate and a plastic face mask is designed for each individual to hold the head in place. Dr. Mederry ( St Anthony's, OKC, OK ) did state on the Cyberknife Pt. Forum they are aware people do move around under the masks.

   GK enters at full dose ( now a days, about 12 or 13 gy, strikes target in 201 rays, and exits at half the strength it enters. Dose planning tries to keep the 12 or 13 gys. from directly striking delicate nerves. It is accurate to tumor margin at about .5 mm. The head is retstrained by a metal head frame.

[hoops1106]

I had GK with Dr. Dade Lunsford of UPitt in January 2008.  Recent MRIs have indicated continued growth in the AN.  I saw Dr. Bentley Welling of OSU yesterday and he is suggesting that we remove it micro-surgically.  Does anyone have experience with this... is another GK or CK treatment an option?  Any thoughts you can send my way will be appreciated.