Info. from appointment and blues....

[Esperanza]

Hello all you lovely people,

I went to see my Otol. man last Fri. and have just not been able (mentally!) to post about it till now...

As it hasn't grown he is recommending continuing W & W with another MRI next July.  He said the tinnitus will improve - though he said that the last time and it has actually got worse with Tinnitus starting in the good ear..)  He said that this was my brain 'centralising' my T.  That it will eventually settle down to the middle of my head and be less intrusive??? - I was relieved to hear that he didn't consider it to be totally to emotions as some hearing therapists believe but a reaction to the sudden and total hearing loss..  anyway I don't like it because I was coping quite well thank you, all things considered, before the 'stereo' T started.

He said my facial sensations were caused by a chemicals (proteins being released) in reaction to the nerve being irritated and that basically I have to live with what I have now, although they can't tell how the nerve is behaving - this is based on a generalisation of how the nerve usually behaves (that it is a bit hardier) also that as long as I keep active and do balance exercises it will stave off problems on that score. 

He did explain why he thought my hearing loss may have been so sudden - could have been something I did to cause more stress to the nerve's blood supply (physical?)of which I may be one of the unlucky peeps to have just one vessel (some people have 2 or 3 vessels supplying the nerve).

That even if all my sympoms got worse, it did not mean that the tumour was growing... but that surgery wouldn't make me feel any better anyway and there were all the associated risks... 

Does all this make sense in relation to your own experiences and information you been given along the way?

Anyway, can't believe how low I have felt about things following the appointment, I seem to have gone down, down, down with each day since I saw him.  I should be feeling grateful it hasn't grown and I do...  I have worked really hard over these months since dx to live my life as normal as possible but I don't feel normal, I don't feel like me anymore and I think the fact that I will continue to W & W for the forseeable future with the symptoms I do have has really got to me.  This is going to be it forever.. 

Will be off here for a week or so -I am off for a break to the sun but am worried about flying a bit and how i will cope while I am away.  My goodness I have really got a fit of the 'feeling sorry for myself's', I can only apologise and hope I will pick my sorryness up and give it a bashing at some point!

Any comments on the info. would be most appreciated.

x

[Pooter]

Esperanza -

I'm sorry you're feeling a bit down about it all.  I don't know all the specifics of your case and symtoms you currently have (with the exception of the tinnitus on both sides), but I would be surprised if you can't go ahead and treat yours with radiation or surgery (whichever is best for you) and be done with it.  That's great that it hasn't gotten any bigger, but you still have some symptoms and they are likely to get worse if you watch and wait too long.  Some of the symptoms will likely be gone after treatment, or better, or changed.  I'm not a doctor, by any means because I don't even play one on TV, but I would think that treatment may help things.

Again, I'm sorry that you're in a bad place.  We've all been there at one time or another, or will be.  You have every reason in the world to be upset, angry, confused, etc..  We're here to help in any way that we can.

Regards,

Brian

[Syl]

Esperanza,

Your Dr. recommends W&W and it seems to be bringing you down. Maybe W&W isn't for you. Have you considered surgery or radiation? Your tumor is small, making you a good candidate for both.

I was also told by one dr. that my sudden hearing loss and dizziness were not necessarily indications of tumor growth, that inflammation alone could be the cause. Well, if doing nothing could give me so much grief, I prefered to risk the total losss of my hearing and facial palsy. What I wanted was to get the tumor out and deal with the outcome. I wanted so bad to move on with my life.

So I had surgery and am very pleased with the outcome. Had temporary slight facial palsy and my hearing is close to it's pre-op condition. Maybe at 2 months post-op, I'm not feeling better than I did before the surgery.  I'm dealing with headaches, which I didn't have before, and the dizziness is worse than pre-surgery. However, it's a great feeling to know that the tumor is out and that how I feel right now can only get better.

Syl

[MAlegant]

Hi Esperanza,
I agree with our friends here. W and W was NOT for me.  I was told I could wait a month or so and I just couldn't imagine doing that.  Once I made a decision, found a doctor and all that, I was so much better.  Now that surgery is behind me, things get better every day.  So, perhaps you should go ahead and take care of the tumor now while it's small. 
Wishing you the best,
Marci

[yardtick]

Esperanza,

I am also watching & waiting.  I have a facial neuroma that was debulked 2 years ago.  I have debilitating headaches and been on several different meds to help me cope with the neuropathic pain. I developed high cholesterol as a result of the last med I was on.   I also developed a scar neuroma and had surgery for that a month ago.  Now I think I have another scar neuroma developing.  Since I have gone of the meds my headaches have increased ten fold and all of the facial issues are back.  My face hurts.  I am not a candidate for radiation.  I will need a nerve graft in the future. 

I understand your frustrations.  It seems every other day is another battle.  I don't know what I can tell you.  You just have to get through it the best way you can.  I had to go off of work in April.  I can honestly say at this moment in time I do not know when I will be returning.  Headaches can disrupt my vision and than I make errors and that just adds to my stress level.  Having a husband and four sons keeps me busy enough.  I too get very depressed over this whole situation I'm in.  Your Dr said the same thing my did, "the surgery wouldn't make me feel any better and there were all the associated risks....."

I wish I was the only person who has to deal with this.  It really breaks my heart to know you too are suffering.  My life has changed, I am not the same person I was 2 years ago.  I'm grateful I know what I'm dealing with, but the symptoms at times are overwhelming and depressing.  You have every right too feel down and there is no need for you to apologise.  Enjoy your holiday in the sun.

Anne Marie

[Jim Scott]

Esperanza:

As with the posters who preceded me in this thread, I'm sorry to learn of your melancholy following your doctor visit.  I won't attempt to address every problem you raise but I will readily concur with Brian, Syl, Marci and Anne Marie that observation ('Watch-and-Wait') is obviously not working for you.  No AN growth is great but the peripheral AN-related issues seem to be acting as a depressant and that isn't good, to put it charitably.

I believe that choosing a treatment, be it radiation or surgery, is your best option at this point.  That will end the feeling of near-helplessness you seem to be having and put some finality on the situation.  It's a big and difficult decision to make but it also seems as if it would be beneficial to your emotional well-being and remove the source of your problems at the same time.  Of course, removing or radiating the AN won't absolutely guarantee every symptom will instantly disappear (the tinnitus probably won't) but at least you'll be doing something that has the potential to help your situation.  If this doctor isn't interested, find one who is.  It's your health and your life, don't allow any doctor to control your decision on possible treatment when the AN is obviously causing you such distress.

You'll have our full support and encouragement in whatever decision you ultimately make, Esperanza.  Meanwhile, try to enjoy your vacation.  See you when you return. 

Jim

[ppearl214]

Hi Esperanza.....

Question... have you checked for another opinion?  You note you met with your Otol. dr... I'm not 100% of all those you have already met, but possible 2nd opinion?  Even if another (2nd opinion) adviced to Watch/Wait... the question is this... how do we keep your mental strength up during that time?

Many radio patients go through this... we go throught the W/W of diagnosis and decision making process... we got through the wait, post radiation, to find out if these dang things are dying its fugly deaths.... to me.. and I note many times to others... the key is mental strength. Now, you KNOW you have all of our support.. and I'm thrilled you are taking time away to relax (get a suntan for me, will ya?)....... but to me... the key is maintaining the mental strength during the process.  Now, knowing you have us... what do you have available to you locally to help you during this time?  ANA support group meetings?  A professional who can offer advice for "coping mechinsms" (did I spell that right?)..... what can we do to keep you mentally strong and ready to have you forge forward?

I got the huggles.. and the wishes... you can count on that!
Phyl

[leapyrtwins]

Esperanza -

thank you for sharing your feelings with us.  I'm sorry to hear you are feeling so blue, but I hope your "break in the sun" helps.

As several others have suggested, maybe you shouldn't continue to watch & wait; maybe you should decide on a treatment option.

As others pointed out, watch & wait is not for everyone.  I know for a fact that it wouldn't have worked well for me - personally, it would have just stressed me out.

Keep your chin up,

Jan   

[Pooter]

..."coping mechinsms" (did I spell that right?)...

Phyl

It's "coping mechanisms".

Brian - Your friendly neighborhood speller.

[wendysig]

Hi Esperanza,
I'm sorry to hear you are feeling so down.  I have to agree wth everyone else - maybe even though watch and wait is a medical option it is not the right emotional option for you and emotions play a big part in ANs.  If you haven't already done so, you should get other opinions.  I hope your vacation puts you in a better frame of mind and helps you reach a decision on how to proceed.

Sending you a big hug,
Wendy

[kat]

HI Esperanza

Sorry to hear that you are having such a hard time with W&W. I agree also that maybe W&W is not for you and think that you will feel relief if you decide on treatment and have a fixed date . I know I felt better immediately after making my decision and then did not mind waiting for the treatment . You should enjoy your holiday and just chill out since by nature ANs are slow growing and will remain the same size after your holiday as it was before . I personally have not had any problems flying apart from boredom and jetlag and the customary kid kicking the back of my seat all the way ... Do not ruin a good holiday worrying about things which may never happen . Wishing you Bon voyage .

Regards Kat

[ppearl214]

thanks, my Pooter!  I stand corrected!

Esperanza..... day by day, inch by inch.... and don't forget the SPF60!

Phyl

..."coping mechinsms" (did I spell that right?)...

Phyl

It's "coping mechanisms".

Brian - Your friendly neighborhood speller.

[HeadCase2]

Esperanza,
 One of the damnable things about AN is uncertainty, and some worry that can go along with uncertainty.  As Phyl mentioned, radiosurgery patients worry that the treatment didn't work and the tumor will continue to grow.  Surgery patients worry whether the surgeon "got it all", or if a few tumor cells remain and will continue to grow.  And Esperanza, as you know, watch and wait has its own uncertainty wondering if the risks of further potential damage from the AN outweighs potential treatmet risks.  The reason I mention all this is that even having an AN treated will not free a person completely from wondering if they will again be affected by AN troubles.  For the majority of patients, AN treatment will be affective with no further treatment needed.  But there is no certainty about that.  AN treatment is not a panacea for worry.   The good part about treatment is that you can at least tell yourself that you've done what you can, and the odds are with you that it won't come back. 
  I think most of use go through periods after AN diagnosis when it can seem a bit overwelming, and it's hard to think about anything else.  One thing that helps is talking to others about your concerns, to spouse, here on the forum where other AN patients understand well, or even a professional.
  I hope things are going better for you today.
Regards,
  Rob

[Debbi]

Esperanza-

So sorry that you are feeling blue.  I'd agree with everyone else here - maybe W & W isn't the right option for YOU.  This is such a personal thing for each of us and you will know yourself better than anyone in terms of whether you have the stamina to wait.  In my case, I knew that I had to act - and the sooner the better.  Fortunately, the stars aligned and I was able to get in to see surgeons within a couple of weeks of diagnosis, which helped to move things along.

And, of course, I think we have all experienced those times of extreme anxiety, no matter what treatment option we chose.  Try to find some peaceful moments for yourself, Esperanza.  We're all here for you.

Debbi

[leapyrtwins]

Surgery patients worry whether the surgeon "got it all", or if a few tumor cells remain and will continue to grow. 

I may be strange, but I don't worry that my surgeons "got it all".  They said they did, and although I know no doc is 100% infallible, I take confidence in their confidence.

I confess I did worry a little bit prior to my 1st annual MRI, but other than that my AN worries are gone.

Maybe I'm just in the minority here.

Jan