phantom symptoms???

[Esperanza]

I have joined all you wait and watchers now after seeing the specialist.  Decided that because of it's size (10mm) and situation -  he judged it's going to be a while before any other nerves are comprised (I am particularly worried about my face!) depending on its growth that we have time to see how it goes.  He thought the pressure feeling would subside a bit as the cause of my SSD was due to it having a little bleed (what on earth caused that -  i know about cell changes but why then particilarly?) and that any oedema/swelling in the AN should decrease over the next 6 weeks or so.   However,  since i have been to see him I keep experiencing either a 'hot' or 'cold' feeling on the left side of my face/head particulary over my cheek just below my eye..   I know it's possible to be very sensitive to every twinge when something like this happens - am I being paranoid - in light of the fact he assured me my facial nerve was at no risk at the moment and I should experience no further symptoms than the ones I have already had (unless it grew markedly) .  Just wondered if this in another newbie experience when in the throes of trying to come to terms with it all...    Want to get my life back to normal as soon as possible as it has been very much on hold for the last few weeks.  Fuzzy head permitting of course!

Thanks.

[Esperanza]

So I am on my own with then then......   

[tony]

It is very easy to get into a state where
every little bump and scrape has to be "a sign"
and this has more to do with danger threatening and stress...
- the term "Brain Tumour" might have something to do with it ?
Its hard to predict outcomes - but at 10mm it is at the smaller
end of the scale - and at an average growth of 2-3mm per annum (?)
some while (years) before a crisis is reached (?)
I might suggest you check out the
"watch and wait" type threads for guidence
If you find all this too unsettling then
maybe an earlier treatment would better for you ?
- I am not pushing here - its your call
Best of Luck
Tony
maybe give it a month or so, and take a view ?

[goinbatty]

Just knowing it's there tends to make one a bit paranoid.  I'm particularly interested in what would have caused a bleed.  Could just be me, but I haven't heard of that before.  As for myself, my symptoms were minimal compared to most.  Once the second MRI showed growth, I chose to have it treated.  I can honestly say that even though I'm still in that period of time when side effects can occur, it's such a relief to have the treatment over with.  When was your AN diagnosed and when are you to have a repeat MRI?

[Derek]

Hi 'E...'

Be assured that your reactions at this early stage following diagnosis are perfectly normal whereby there is a general tendency to regard any aspect of change in your normal functioning as being attributable to the presence of the AN.  You have already taken positive action re having apparently found a neuro specialist who appears to be unbiased in that he has recommended that you 'watch & wait' at this juncture having obviously analysed your MRI scan in conjunction with discussing your antecedents and who has not railroaded you into early and in your case, unnecessary treatment intervention. You have also shown a positive desire to understand all aspects of your condition as evidenced by your obvious need to fully research your condition and to confer with others who have had to contend with what you are now going through, thereby learning from their experiences and hopefully gaining confidence to deal with any future issues.

Your AN is on the small side and the average rate of growth allows you plenty of time to monitor the situation in the 'watch & wait' mode. Continue with your research, maintain regular contact with your specialist and ensure that you have at least annual MRI scans with contrast dye added.

You are aware that I am approaching my 7th year since diagnosis with a 1.9cm AN and hopefully I aim to continue for much longer!

You are doing just great for now...try and keep your stress levels in check, relax in the knowledge that you are doing everything that you possibly can and consider yourself fortunate (like me) in that your unwanted new 'friend' is of a size whereby you will most probably never have to undergo open surgery.

Best Regards

Derek

[Esperanza]

Hi,
Yes I think you are all right - I am very very sensitive - sometimes I think the noises in my head (the wooshing) iare the tumour pulsating with my blood how sad it that!   My balance which I was told would get better and better seems be going down a bit on some days?

goingbatty - can't shed any light into what made it bleed, the specialist did say something about one or two of the cells being more fragile??  Guess I have been very unlucky as if I had more symptoms or a noticiable hearing loss I would have taken it further earlier.  You are fortunate to have found it before you had any real loss, hopefully you will retain all your hearing...

Yesterday I felt ok with the watch and wait - today I want it out or something done about it - I am pretty angry with it - not coping too well emotionally with the sudden hearing loss - I started a demanding course last Sept. which I have waited years to do (put the family first etc..)and this is now going to set me back a bit.

Derek you sounds so positive but then you have 20 years life experience over me...   I want to finish my course and live a full normal life - just not feeling good about life and not sure how I am going to cope at the moment.  Must admit i am really struggling to come to terms with it all at the moment even though I am trying to make myself see a positive slant.....

Thanks.

[Derek]

Hi 'E'...

There is no better therapy than to engage in an activity that will take your mind off the continual aspect of coming to terms with your AN condition. I can assure you that the passage of time will allow for compensation in dealing with the mental and physical adaption to your situation. Please be patient...you  are still in the very early stages of diagnosis with all of the attendant emotional responses that will naturally be overwhelming you. The course of demanding studies that you recently embarked upon after waiting many years to engage in may well be just what you need at this very trying time for you and your family.

Do NOT let the bloody AN control what you do. You are in control of it... give the AN a 'back seat' and channel all of your energy into successfully completing your studies...make it your personal goal to achieve the ultimate academic success that you have waited so long for...you CAN and WILL do it!.

Regards

Derek

[ZigZagGal]

 "I am very very sensitive - sometimes I think the noises in my head (the wooshing) are the tumour pulsating with my blood how sad it that!   My balance which I was told would get better and better seems be going down a bit on some days?"

Esperanza,
I understand what you mean.   I have a tiny AN and have all kinds of symptoms that get my mind whirling.    Sometimes my ear feels like it is stuffed with cotton and the tinnitus is very piercing and distracting.....and it sure seems like I get more headaches on that side....and sometimes I swear my face is tingly on that side......I can really get myself worked up.  When I feel that way I try to distract myself with some dumb little task I've been meaning to do,  like transfer all my addresses from my old address book to my new one, or clean out that junky kitchen drawer.  I find that I often will forget about it for a short time.  I also give myself permission to be mad, sad, and scared about it for a while, and to call my physician if I really think a new symptom has come to stay.  I've never gotten to that point.  I also find that my balance varies a LOT depending on how much sleep I have gotten, if I have a cold, and what the environment is like.  Overall though, it is gradually improving.  I know your situation is different from mine.  I do not have SSD and don't know how I'd react if I did, but just wanted you to know you are not alone. 
About sleep, something that helps me with the tinnitus is a clock radio that plays nature sounds like rain, wind or the ocean.  I have a little under-the-pillow speaker that I plug into it that delivers a quiet little hush to my noisy ear.  Sometimes it drives me crazy and I just want that whale to SHUT UP, but often it is calming.
Hang in there,
Tracie

[Esperanza]

Thank you so much Derek for your positive words, they make sense and they really help.
Thank you Tracie also for your tips and words of encouragement.

[HCSTARWIND]

Esperanza- After reading your post, it brought me back to where I was 18months ago. I too am in watch and wait mode with my AN. I have approx 50-70% hearing loss on that side and also experience numbness and tingling into my left face. I does get better emotionally though. Coming to terms with this diagnosis takes some adjusting. What I did was educated my self on this and in doing so became more accepting of this inconvenience. I trust my doctors in guiding me in the right direction. The dizzyness and balance issues got better over time for me. The body has a wonderful way of adapting. I work in a NICU where there are alot of alarms and noise. It has been diffucult at times and by the end of a 12 hour shift, I am plagued with fatigue and consistant deafening tinnitus. Hang in there and continue to post here. You will find alot of support on this site. Stay strong. Helen

[Nancy Drew]

Esperanza,

I also feel like I have phantom symptoms especially since I found out my AN grew this past year, and my hearing has been affected enough that it is bothersome.  You report some things that seem to worry you--the bleeding and facial stuff.  Personally I would be freaking out, and I think I would "run" for a second opinion.  Maybe it would give you some comfort in knowing if your doc is being up front with you.  Just because some of the tiny ANs are ok for Watch and Wait doesn't mean they should be downplayed either.  I don't think it is necessary to be in a "small AN club" and feel like you are overreacting.  It is an AN, and it is in your ear.  You have a right to be concerned about each and every thing.  I am in the process of deciding if I should get treated and leave the W & W club.  Yes, it is best to W & W if you can, but at some point you have to decide what it is that you personally are willing to live with.  There are risks with everything, and I might end up making my hearing worse or lose it altogether if I W & W or have treatment.  Big decision to make, but if you don't trust what is going on with you, go for that second opinion and find the best doctor you can.  Doctors do make mistakes even if they are good doctors.  Just my two cents worth.

Nancy

[Annie]

Hi ,Im new to the forum as well, I have been on W&W for 7 years I was 42 then ,Iv been lucky as it was 2cm then and it hasnt grown in this time,I had already lost all the hearing in my left ear my MRI is Jan so hope its the same .If my AN had grown in the first couple of years I would have opted for surgery ,Anne

[leapyrtwins]

I could be wrong here, but I don't think the age of the patient has anything to do with the rate their AN grows.

My AN almost doubled in the six weeks between my diagnosis and surgery and I was 45 1/2 (not relatively young) at the time.  Why the rapid growth?  No known reason; just lucky I guess 

That said, W &W is a very good option for those with small ANs that aren't causing them any "issues".   The key is to monitor the AN's growth through regular MRIs.

Research on radiation has shown extremely positive results - it's not a "substandard" treatment option - and while there has been much debate on whether or not it makes subsequent surgery more difficult or not I don't believe that research has shown this to be true.

As for surgery for older patients being considered more difficult to recover from, there are lots of older patients who do extremely well with surgery; a lot depends on their overall health.  Many members of this forum have had surgery in their 50's and 60s and had no recovery issues.

Jan

[Mickey]

From my research 40% of an reach a point of growth then stop. I also research that the older you are the better chance that growth has come to its end. Seems to make sense to me. An Italian study had 8 patients 65 years of age. Results were 6 had no growth with 2 having minor growth with all having no intervention for the rest of their lives. Best Wishes, Mickey

[sgerrard]

Jan, I think 45 is relatively young - or at least not old - for having an AN. The general sense is that over 65, anyway, ANs do tend to grow less or not at all. Like the rest of the body at that age, they are in the process of shutting down.   

CWood,

Some younger patients do have ANs that don't grow, so it doesn't hurt to watch for a while and see, unless the onset of symptoms makes it clear that something needs to be done. I'm not sure where you got the 10 year figure on radiation treatments. Gammaknife was started 40 years ago in Sweden, and has been in the US at least 30 years. The Pittsburgh reports on post GK experience included 10 and 15 year follow ups, and that was published in 1998.

Now that old chestnut: "they don't know if radiation therapy could build scar tissue making removal more difficult in years to come." Both surgery and radiation will produce scar tissue; both surgery and radiation have a chance of regrowth in later years. A follow up surgery may be more difficult, meaning it takes longer, but not necessarily more post-surgery symptoms (see Kathleen5306 for a recent case). It doesn't really make sense to worry about a "what if" that has a 1-2% chance of happening, and in any event, the issue is the same regardless of which treatment you have the first time.

Steve