today feeling sick of my normal

[CMC]

I have plans today to have lunch with the girls and go shopping but all I wanna do is sleep.  Once again I will push through it because I know this spaced out headachey ear pulsing is my life. Its never gonna be better than this and I cant let it keep me from enjoying my life. I remind myself that other people have much bigger problems. Some days though I just feel like crying and I wish it could be fixed! Except for this website I am alone. I read other posts often to help me through the bad days. Today I post!

[CHD63]

Hi Tina .....

Bummer to feel so lousy!  I read back through your previous posts and I see where your January MRI showed no change in your tumor size.

If you didn't watch it, Dr. Tamargo from Johns Hopkins gave a different explanation about tumor growth on his ANA Webinar last Monday.  I cannot remember it word for word but he explained something like most acoustic neuromas (vestibular schwannomas) are not a single entity, but made up of several pieces grouped together.  He said there are spaces between them so that even when the MRI measurements are the same, some of those spaces are being filled in as it grows.  Not sure that makes sense.  If you are an ANA member you can access the webinar on the anausa.org website next week where you can hear/see the real explanation.

All that is to say, that besides MRI measurements, a wait and watch patient needs to monitor his/her symptoms very carefully.  If your symptoms are making this much impact on your life, maybe it is time to consider treatment.  I am concerned that you feel it is never going to be any better than it is now.  Your symptoms should lessen (if not go away) following treatment, if you choose your treating doctors carefully (which I believe you have).

Many thoughts and prayers.

Clarice

[ANGuy]

Clarice, what symptoms typically improve following treatment?

[CHD63]

Typically balance issues improve following treatment ......  sometimes hearing and/or tinnitus improves ..... facial numbness can improve if the tumor is skillfully removed and/or reduced in size by radiation .....  etc.

All of us are unique so there are no guarantees with any treatment or lack of treatment.  Typically one's hearing level does not improve over time ..... and in fact frequently worsens no matter if a patient watches and waits, has radiation treatment, or surgical removal.  However, there have been instances of improvement if treated early by skilled physicians.

Clarice

[ANGuy]

I was curious since so many of our members have emerged from treatment with worse symptoms and many with equal symptoms.  It seems like a lot of members have to deal with facial issues post-treatment that they did not have pre-treatment. 

[alabamajane]

Tina,
I agree with Clarice, who always gives wise advice by the way.

I think your symptoms are causing you undo grief and unhappiness and it is probably time to think of moving forward because this is not the way it has to be for now on. For one thing, yours is small enough right now for consideration of radiosurgery if you are so inclined. If you wait for growth,  you may surpass that threshold, which is usually just less than a 3 CM size, I believe. Another, if you aren't interested in radiation, surgery on a smaller tumor may lend better results than waiting for it to grow and perhaps involve facial nerve.

I respectfully disagree with ANGuy that " a lot of members have to deal with facial issues..." A little too much generalization for me. For one thing, members who have NO lingering issues tend not to return to forum very much as they need little support and move on. Even those that return occasionally and reply to specific subjects to lend constructive suggestions will say that they have very minor issues, some/maybe most will have hearing loss or reduction and tinnitus to some degree. The possibility of Facial issues after treatment is not something to keep you from moving forward if your symptoms are becoming debilitating or restricting desire to socialize. Yes, there are those of us that have facial paralysis to some degree,, it's bad at first, but not life ending. To tell you the truth,, I was diagnosed in 2008 and W&W till symptoms worsened and tumor grew and I HAD to have surgery due to brainstem compression,, no choice at that point.

I FIRMLY believe that by my W&W for so long I "let" tumor grow into facial nerve and "caused" the results I had. I take responsibility for my decision. I'm not saying all W&W will result like this, but you have to be prepared to accept results you get if you wait AND notice symptoms worsen even in the slightest. Not to scare you or anyone else. As we say on here, " results will vary",,,,
As Clarice says, it is hurtful to hear the pain in your words about your quality of life. Even small tumors can cause large problems and symptoms. Location of the bulk of the tumor is as important if not moreso than mere size.
As my Dr told me, tumors can be measured differently by different Drs / radiologist,, some measure entire length of tumor and some measure just what extends out from IAC,,I had a different measurement from radiologist than from surgeon,, turns out, surgeon was right and it was much larger than I was "banking " on. 

Sorry for length of post,, but I just wanted to emphasize that only you know how you feel and how this tumor is impacting you and your life,,, you will be the one to decide when and how you proceed. No Dr can make the entire decision for you,, and you are the one that will live with or without this tumor,,, I wish you well and peace with the decision you make, and more peace in your daily life.
I hope you went out with the girls today and enjoyed it! Maybe you came home and took a good  long nap  . Let us hear from you!! We care!!
Jane

[CMC]

Thanks Clarice I will definitely check out that webinar you suggested.  I am always looking for information to confirm my symptoms are real. It is good for my sanity :-)

As for seeking treatment,  doctor said I am not a candidate for middle fossa which has the best chance for saving my hearing due to the location of my tumor. With retrosigmoid only 50/50 chance. Since my hearing scores are still very good I decided im not willing to lose my hearing just yet. Also I am not even considering radiation.  At first I thought it sounded great and less intrusive to everyday life. But knowing myself I would worry about the tumor turning malignant 20 years from now. If I was older than my 44 yrs of life I may think differently.  Lost my dad to cancer 15 years ago which has left me very fearful of the C word.

Then there is timing. I know surgery will require a substantial time of recovery.  And I have some doubts wether I will be able to do my job as a dental hygienist with single sided deafness. I make a very good wage and couldnt replace it doing anything else. Our son has two years left of college so I at least want to hold on until then.

Therefore, even though my quality of life is somewhat deminished I am waiting as long as possible before having treatment. If this my cross to bear in life, i consider myself lucky. But I promise to see my doctor if symtoms get worse. Thanks for the advice friends.  I find comfort in your words, pros and cons alike.

Tina

[ANGuy]

Thanks Clarice I will definitely check out that webinar you suggested.  I am always looking for information to confirm my symptoms are real. It is good for my sanity :-)

As for seeking treatment,  doctor said I am not a candidate for middle fossa which has the best chance for saving my hearing due to the location of my tumor. With retrosigmoid only 50/50 chance. Since my hearing scores are still very good I decided im not willing to lose my hearing just yet. Also I am not even considering radiation.  At first I thought it sounded great and less intrusive to everyday life. But knowing myself I would worry about the tumor turning malignant 20 years from now. If I was older than my 44 yrs of life I may think differently.  Lost my dad to cancer 15 years ago which has left me very fearful of the C word.

Then there is timing. I know surgery will require a substantial time of recovery.  And I have some doubts wether I will be able to do my job as a dental hygienist with single sided deafness. I make a very good wage and couldnt replace it doing anything else. Our son has two years left of college so I at least want to hold on until then.

Therefore, even though my quality of life is somewhat deminished I am waiting as long as possible before having treatment. If this my cross to bear in life, i consider myself lucky. But I promise to see my doctor if symtoms get worse. Thanks for the advice friends.  I find comfort in your words, pros and cons alike.

Tina

We are in similar situations.  Age, size of tumor, raising children, losing the ability to work at our trade, having good hearing, not wanting radiation.  The symptoms I have are as likely to get worse as they are better through treatment.  I have had too many Drs tell me to wait, and read of too many anecdotal information to go through having a hole drilled in my head all the way to the brain stem for a 1cm tumor. 

I feel for people with larger tumors who had no choice but to get treatment, especially the younger ones.  The older ones were basically in the same situation as you and I, but they didn't know it.  When they were our age they were waiting without the watching because they didn't know they had a tumor.  Then, when they were in late 50's and 60's they found out they had a 2.5-3.0cm tumor.  When they were our age, it was our size, and they unwittingly "waited".

[CMC]

ANGUY so true but still stinks! So here we wait. Good luck to you!

[Gearbox123]

Hi, I haven't been on the site in a long while , but have had a lot pain ,fullness , pressure and problems with imbalance.  I was just recently diagnosed with a type of dystonia. One thing I thought might interest you and something to look into is a drug that I have now taken for about a month which has helped somewhat with the headaches and some of the fullness.  The drug name is Orphenadrine E.R 100 mg. It has some muscle relaxing and antihistamine properties that might help, it's worth looking into and discussing with your doctors. My tumor is only 4mm very small, and Dr's will not touch mine. I think Clarice is very informative and has giving me some insight, and will look at that web video she mentioned.  Good luck with everything.

[CMC]

Interesting Gearbox...Sometimes I take claratin D and it helps. Our symptoms are so weird and frustrating. Naps seem to be the best medicine.  I wish I could take one at work at say 2:00 lol.

[Gearbox123]

Hi again . Yes sleep if you can get any with the pain and pressure right?  I take Tylenol with a Sleep aid, which is just Benadryl.  I have taken Claratin and that helped a bit too but not as good as the Benadryl .When I first mentioned that too my movement specialist,  he was very interested. For the Dystonia problem he then prescribed a drug called Artane which also works for Parkinson's.  Artane was a drug that Benadryl came out of. Artane was too powerful so then he gave me Orphenadrine, which does help me some what. Don't get me wrong , I am taking it for a whole different problem,  but amazingly it has helped me with some of the tumors issues, mostly the fullness and headaches, like I said not totally gone, but better. I wish you the best luck.

[MG]

CMC & Gearbox,

I take Advil Gel-caps and it works for the pain and fullness.

Best of luck to both of you!
MG