Acoustic neuroma-ReGrowth

[VTSurvivor]

Has anyone every had their acoustic neuroma regrow. The doctors were not able to remove all of mine and now I am having some double vision. My oeye doctor is concerned and is sending me back to my neurologist and another MRI. He states I have a weakness in my sixth nerve and is concerned my tumor might be regrowing. I am 7 years out from my surgery.

[TJ]

Hevesqu

We just had our support group meeting, and they played the audio talk from the seminar about re-growth.  The doctor on the tape said that they estimate that about 7 % of AN's will grow after surgery.  It was also noted that about the same percentage of regrowth happens with radiation as well.

Probably not what you wanted to hear, but that information seems to be current as it was given at the last AN conferance.

TJ

[CHD63]

Hi llevesqu and welcome to this forum .....

Sorry you are experiencing new symptoms this many years post-op.  I am not a doctor, but double vision is not a typical symptom of tumor regrowth.  However, everyone is individual/unique so you definitely need another MRI with contrast to be sure.

I had surgery to remove a 2.6 cm acoustic neuroma (via retrosigmoid/suboccipital approach) in February, 2008, with the surgeon assuring me it was total tumor removal.  On the first MRI 5 months post-op, there was an "area of enhancement" that both the reading radiologist and the neurosurgeon felt was surgical changes/scar tissue.  Subsequent MRIs continued to show this same area until February, 2011 when it had grown 3 mm from the previous year.  It was then read as a 1.3 cm recurring acoustic neuroma.  My only new symptoms were a tiny bit of additional hearing loss (I had maintained 20% of my hearing after surgery.)

Yes, current research still says that treated ANs can regrow 5-9% of the time.

Because of massive doses of radiation to my head as a teenager, I am not a good candidate for radiation treatment.  Therefore, my AN was surgically removed a second time, via translabyrinthine approach in May, 2011.

I am, of course, deaf in my AN ear now and have some stability issues due to no vestibular system on either side ...... but, otherwise, doing everything I would have been doing if none of this had happened.  I feel very fortunate in so many ways.

Private message me if you have any specific questions on my situation.

Clarice

[VTSurvivor]

Thank You for the information. I guess I just need to wait until I have the MRI. One thing I have learned through this experience is patience! Not like we have a choice in the matter. 

[Crazycat]

  llevesqu,

     You sound like me. I'm six years out from surgery and have only recently started getting headaches. My double vision has been constant well before and after surgery. My head feels like a lead balloon filled with Helium (if that makes any sense).

      My yearly MRI was on August 17th.  Beyond showing evidence of AN surgery and some cerebellar compression, there is no sign of regrowth. Yet, over time, things (nerves) shift around as our bodies change and can cause quirky problems that may appear to be alarming at first.

     I had a visit with Dr. McKenna at Mass Eye & Ear last week and apprised him of what I was feeling. He said it is very common with many A.N. patients to either develop or grow out of headaches over time. He referred me to an Anesthesiologist that is also a pain specialist for AN patients and practices out of Caritas Carney Hospital in Dorchester, MA. I haven't made an appointment with him yet. For any local patients that may be interested....

     His full title and address is:

     Martin A. Acquadaro, M.C., D.M.D.
     Director—Department of Anesthesiology and Pain Services
     2100 Dorchester Avenue
     Suite 2210
     Dorchester, MA 02124
     Tel: 617-296-7246
     FAX: 617-474-3874

     Dr. McKenna had some very good things to say about this doctor and recommended him very highly.

     I now have a prescription for Fioricet (provided by my PCP); a combo of Acetaminophen,  Caffeine (a vasoconstrictor) & Bitubital (a barbiturate). I'd taken this stuff only on rare occasions since my release from the Rehab Hospital in October, '05.  They had sent me home with a card holding 32 pills of which maybe ten had been used. As of last week, I still had 5 left. That attests to how often I needed them. I've been finding though, that while the drug is effective, the caffeine portion keeps me awake at night and is troublesome.

     It has come to my attention that there is a version of this combo called "Fiorinal" which contains Aspirin (instead of  Acetaminophen) and Codeine (that can help for sleeping) along with the Bitubital and Caffeine. There is also a version of Fiorocet w/Codeine that keeps the Acetaminophen (instead of the Aspirin).

     I'm looking into getting some Fiorinal for nighttime use when I really need it.

     But the point is that while I was concerned about regrowth, only an MRI with contrast dye bore out whether or not I had regrowth and that any residual ticks or aches and pains we have need not necessarily be considered signs of regrowth.

Take care and all the best....

[VTSurvivor]

I actually wasn't even aware there could be a regrowth. My doctor is the one who is concerned so that makes me more concerned! I understand the "Helium Head". Luckly it doesn't happen to me often. The severe headaches have started again but only in the last month or so. I  usually have head pain so really don't count that. A person would think after a period of time, our bodies would reregulate and we would stop having different side effects from our surgeries.

[leapyrtwins]

Regrowth does happen.  There are several folks on this Forum who've had regrowth.

My AN was completely removed during surgery, but I was still told that I have a 1-2% chance that it might grow back.

Even one cell left behind in surgery has the potential to regrow.

Jan

[JAndrews]

If the tumor is not removed completely there is always a chance it will continue to grow. A much higher chance than when its all removed. If it is growing I would definitely consult with House in LA. I would get all of that tumor out of my head and be done with it! There is a very,very, slight chance of recurrence when all is removed.

[Jim Scott]

llevesqu ~

I think that, by now, you are convinced that even after AN removal surgery, re-growth is still possible, if not probable.  This is why, among other reasons, my neurosurgeon decided to 'de-bulk' my large (4.5 cm) AN, basically 'hollowing it out', in the process severing it's blood supply.  He then teamed with a radiation oncologist to 'map' an extended FSR treatment (26 separate sessions) to destroy the remaining tumor's DNA, effectively 'killing' it.  That was over five years ago.  I came through the surgery with no complications, recovered relatively quickly and 90 days later underwent the 5-week FSR regimen.  I'm pleased to report that I'm doing great.  My last MRI (2008) indicated tumor necrosis and the beginnings of shrinkage.  My AN symptoms never returned. On the basis of my experience, I believe that the 'de-bulking' plus radiation approach (for large ANs) seems to be very effective and, although nothing can be guaranteed, offers extra 'insurance' against the possibility of tumor re-growth.

Jim

[vicki1967]

I just found out that my tumor is back and I had surgery in '08. I don't know what to do.

[elsie]

Vicki,

How large is the re-growth?  Was it a total removal or was some of the original tumor left behind? 

My jumbo AN was completely removed in 1988, with 10 year follow-up showing all clear.  I had surprise regrowth confirmed in January 2014 - on w&w until Nov. for a one year follow-up MRI.  not happy about that, but had quite a few top docs confirm plan.

you need to listen to what your dr. says and then get a second opinion.  i think the second time is pyschologically harder in many ways because we have been through it and know the pitfalls, but have heard that physically it is not as hard if surgery or other treatment is advised.

the (slightly) good thing is that you are not alone and there are others to help guide.