I'm in wait and watch mode

[Pam A]

Hi all,
  I saw a neurosurgeon Tues 11/22. As a retired RN I thought I could do this on my own without difficulty. Boy was I wrong..I was a nervous wreck. My blood pressure was sky high when I got there. I knew all the right questions to ask. He gave me most of the answers before I had to ask.
Since my AN is 8.5mm x 9mm we decided to wait and get another MRI in Feb. I think I'll take my daughter to that appointment if she can make it (might keep me calm).
  He didn't push surgury right away but said he was comfortable doing the Retromastoid or suboccipital approach in my case. He is a local Neurosurgeon here in Bangor, Maine.. not from a big specialty practice.
He also freely discussed the Gamma knife proceedure. He said he prefers Tuffs for that.
Pam A

[Kathleen_Mc]

Pam: As a nurse I am sure you are already researching this inside and out. When I was first diagnosed in 1990 I didn't have time to do any research and/or questioning of any kind, it was 1 1/2 weeks between diagnoses and surgery (life threatening). At that time here in Canada Gamma knife and Linac were not available so that was not my option. Between finding out about the regrowth and my second resection I researched all options and given that my 7 to 10th nerves were already gone I did not see any particular benifit, and another particular reason for choosing resection the second time around was I had spent 5 1/2 years being monitored and this was terribly emotional upsetting for me, the nurse in me knew too much of "what if's" and given how big the first one got I didn't ever want it that big again.
Best of luck in your research, Kathleen

[sally]

Pam-
You are not alone in feeling scared.  I've also been diagnosed with an AN and since the Sept. MRI report I haven't even been able to get anyone to tell me the size and location of my AN!  The ENT I saw says it is small and that he needs to consult with the radiologist to get specifics and the neurologist I saw because the MRI also confirmed that I have MS also told me nothing. Small is good, but how do I know if I should wait and watch or have surgery?  My husband minimizes everything and says if it was him, he'd have surgery and get it out, no big deal, but it is  IS a big deal-we're talking brain surgery!!  I'm 51 years old, owner of a small business and my primary symptoms are hearing loss, ringing in my ears, and feeling like something is jammed in my right ear.  How and when do you decide on treatment?  Can anyone give me any specific guide lines?
sally

[russ]

Hi Sally

  "How and when do you decide on treatment?"

  To me it seems wise to establish a growth pattern with successive MRIs if one's tumor is suspected as small. Increased symptomology might be something which pushes one into Tx also.
  If exact sizes are not told and the term, "small' used, my assumption is that the AN is still in the Inner Auditory Canal, IAC.
  Given MRI has an inherrant accuracy of + or - 1 - 2 mm. possibly the Drs are still questioning the validity of treating the AN now. It is known in many cases the most damage occurs during the treatment phase. From surgery, immediately; From radiation, down the road if anything were to crop up and given the AN is small, most likely that 'could' be a Tx failure or hit to the hearing.
  If this were my situation at 50 something, I would want to see an established growth pattern b-4 commencing Tx.
  Yes, I know the symptoms now are frustrating but Tx doesn't guarantee their going away. They could actually be worsened, esp. if the AN were irradiated and the AN became swollen in the IAC.
  A Middle Fossa requires a well experienced neurosurgeon in that particular procedure alone. The facial nerve lies right on top the opened top part of the IAC and the surgeon must work around it. That does increase facial nerve damage risk. Despite your husband's sense of, "let's get this thing out now", hold on, research your options, gain expert opinions from both neurosurgeons and radiation providers and be able to see a true growth pattern of more tha 1 mm. a year.
  Seems there may be an increasing number of watchers and waiters.
  Best wishes!
  Russ

[targa72e]

Hi Sally, Pam

I am also in wait and watch mode. I was diagnosis with an AN in June. My symptoms were sudden hearing loss (over night) in my right ear. At the time my hearing DB loss was such that it would not be considered serviceable and most would not consider trying to save. At that time I decided that since my hearing was shot I might as well wait until the tumor was closer to 10MM. I chose this size as the results from treatment tend to be better with smaller size tumors and this would mean that my tumor had more than doubled in size. Based on the typical slow growth rate of AN's I figured it would be 2-3 years before I would need to do anything.
I can appreciate your blood pressure going sky high at the surgeons mine was as well. I had already made up my mind about what I was going to do before I saw the neurosurgeon. I was quite relieved when he suggested doing exactly what I had already decided, do a follow up MRI in 6th months and see if it is growing as he said "You can have as much damage done removing the tumor as the tumor will do"
Since then my hearing has actually improved quite a bit and would now be considered worth saving. Also in that time I have had the onset of more symptoms, I have tinnitus that has gotten fairly loud and for the last 2 months have had a constant ache on the AN side. In the last month I have had two instances of extremely bad headaches (I previously only had mild headaches 2-3 times a year for most of my life) and all I could do was lay in bed and not move. With my hearing better and symptoms worse I am also struggling with what to do about treatment. Do I do something sooner in hopes of saving my hearing (with the possibility that treatment may cause me to go deaf in that ear) or continue to wait and risk going deaf from the AN. I also struggle with what treatment to choose. I flip between radiation and surgery. I am attracted to the low side effects from radiation but struggle with the "its still in my head and could start growing again" factor and little long term (more than 10 year) research on AN's vs. the more complications but now its out of my head and I know were I stand of surgery. I will be scheduling my 6-month MRI in the next couple days and am somewhat anxious about what it will show. Best of luck, you are not alone in your feelings.

John

4mm x4mm AN right side

[Jeff]

Hello all,

I can certainly empathize. I was diagnosed with NF2 nearly 4 years ago. I hae already had two surgeries on my right side, which is now deaf. I have been watching my left side for these four years. It has grown from 2.3 to 3.5 cm in this time span. However, I have perfect hearing. It is amazing how these tumors affect people differently! Anyway, I have been mulling over my (limited) options and certainly  understand the feelings that you have expressed. It's true that there are no guarantees with any of this. We can only weigh the posssible outcomes as we understand the statistical possiblities against our life priorities, make a choice, and pray for the best. I will have surgery. I have decided that. My dilema is when? When do I give up perfect hearing? How much larger can I let this thing get? The larger the tumor, the more chance for facial nerve damage.Now,  I am moving away from hearing preservatin to facial nerve function as a goal. I think that it is normal to be afraid. I certainly am at times. Best wishes to all of you and hang in there.

Jeff

[Bonnie]

Hi All,
My experience with wait & watch has been the right approach for me. When my AN was first diagnosed 9 years ago by MRI it was only 4mm and had already robbed me of 100% of my hearing in the left ear. My neuro-otologist recommended wait & watch because considering size and risk etc , there was nothing to be gained at the time. MRIs have been done every two years and it has now increased to 15mm (1.5cm). My physician recommends surgery now (trans-labyrinthie approach) due to the size and while I am young enough to withstand the surgery. (He calls me young at 51 anyway   ). I am scheduled for February 2006
Regards
Bonnie

[Eve143]

Hi everyone - I am also new here - was diagnosed Sept 26 - two weeks after my divorce, and since my insurance was running out the doctors rushed my treatment plan in case my TCC didn't pick up - and without much thought I went through the 6 weeks of Linac everyday wearing the mask and just finished up monday.  Had I researched more I don't know I would have changed anything - I am 44, have two young daughters to raise and was willing to try anything other than surgery.  The hearing loss has progressed - almost to non hearing - the ringing increased and the full feeling in my ear also has worsened since radiation.  I have also lost some of my taste sensation this week - which I am trying to adjust to, along with some numbness on the left side of my face.  I was put on steriods two weeks ago due to inflammation and severe headaches and am reducing to be off by this weekend - I think the steriods are worse than the radiation treatments - can't stand the way I feel on them - although for the first time in months I have headache free days!  Anyway, when radiation was done I cried - at least I felt I had some control over my treatment and that I was actively doing something - this wait and see what happens next I find more stressful than anything - since my only option now is surgery if the Linac didn't work.   My AN is 14mmx14mm - which according to the report extends thru the canal 7mm - flattened pituitary and empty cella - which the neurologist says not to worry about - no, I guess not - just worry every six months at the next MRI and hope some of the symptoms from radiation subside - I don't know if others have had this, but even my co-ordination if off, I don't feel like myself, I feel clumsy (tipping over was one of my early symptoms) - I hope it's just radiation effects and in a few months I feel more like myself - too bad it wasnt quite so simple as getting the thing out - I now am more concerned with preserving facial nerves at this point and smiling at my daughters, at least I can hear well with one ear - I just wish the other one would quiet down!

[sally]

Russ, John and all,
You don't know how much better I feel after reading your responses.  I've decided that another MRI in 6 months to check on growth of the AN is a smart choice. If any of my symptoms become acute, I'll go back to the ENT.  He has ordered an ENG test for later this month.  I was going to ask for a 2nd opinion/consult down in Boston, but perhaps it's premature for that.  I live in Vermont and we've got a great hospital in Burlington, but I don't think my ENT has much experience with ANs.
Thank you, thank you everyone for your entries and replies.  The more info the better!
Sally

[Larry]

Sally and everyone else,

The watch and wait approach is starting to take momentum. I had a 2cm AN removed using middle fossa, 3 years ago. I have lost most of my hearing in that ear and have high tinitus. I can live with that. Unfortunately, I have had very debilitating headaches for 3 years, due to the cutting of the muscles etc - i have tried conventional drugs (including nerve suppressants, steroids injected into my head and accupuncture all to no avail. 6 mths ago, I had an MRI and my tumour had grown back. i was not impressed. After a gruelling and invasive op and recovery period, I find that its returned. Anyway, I had a follow up MRI the other day and it hasn't grown at all since the last MRI.

I was all set for CK treatment but my ENT surgeon said that recent studies suggest to wait and see before doing anything. My surgeon was very good about radiation treatment as a possibility (even though he doesn't do it) but he now will not operate on small AN's nor will he do any further middle fossa surgery. If surgery is required, he will do translab only. I think recurrence is too frequent under middle fossa. Anyway, everyone has different circumstances and the tumor can affect people differently. For myself, I have no facial nerve issues, I have slight balance problems (but a good party joke when asked to walk a straight line without being drunk). Therefore, my scenario is to wait. Evidence is starting to now appear that these AN's may not grow into a major concern issue for some years, particularly if you have a small one. It's likely that its been growing for many years already without notice.

My view is that technology is improving all the time and who knows what sort of treatment will be available in a few years time.


Larry