Just when I was relaxing .....

[CHD63]

Thanks again to all of you .....

Scarlett & Rich ..... I truly hope both of you are doing OK.  I miss the contact with you through Rich's updates.

Pat ..... You know exactly what it feels like to watch and wait ..... not easy, I am finding out!

Kenneth ..... You have been through so much.  I sincerely hope you will find answers soon.

Eve ..... I learned my lesson on the first go around and I pick up both a copy of the CD and the radiologist's report after every MRI.  I'm even one of those who sticks the CD into the computer when I come home ..... still not very good at interpreting what I see, however.     Actually, for many years I have always asked for copies of every lab test report, surgical report, etc. so I have a very complete file.  I have a somewhat complicated medical history so a long time ago I condensed my whole medical history onto an 8.5 x 11 page.  It includes the significant medical aspects of my family, my medical history, my surgical & significant testing procedures, my drug allergies, my current medications (including OTC ones ..... vitamins, etc.), and contact information.  I have it on the computer, update it as needed, and carry a current copy with me at all times.  I did one on my husband's medical information, as well.  Sure saves a whale of a lot of time when going to see a new doctor ..... put "see attached" for anything I have already covered on their forms.  They are always so grateful to have it written out clearly and it saves my poor fingers.

The original tumor removal was considered complete.  That is why the surgeon felt it was scar tissue at first (when it was seen on the very first post-op MRI).

Mei Mei ..... thanks for the suggestion of Dr. Konziolka.  I was very impressed by his presentation at the Chicago ANA Symposium in 2009.  He is on my list of people to contact, should I choose to explore that route.

Still waiting to hear back from a second opinion ..... should have the answer to that tomorrow.  The answer to that will most likely either end my quest for answers or cause me to seek additional ones.  Ah, the life of a patient with a growing acoustic neuroma!

Thanks again, everyone, for your thoughts and prayers.  I really feel like I have a warm, fuzzy blanket wrapped around me.

Clarice

[CHD63]

This week has been a whirlwind in the process of fact-finding, opinions, decisions, etc.  Thanks to a very dear friend, I had a wonderful conversation with Dr. Rick Friedman at House Ear Clinic yesterday.  I'm still mulling over his assessment of my MRIs and his recommendations.  Yes, that is correct ..... recommendations.  I cannot say enough good things about not only what he had to say, but how he said it!  He is a true professional in the best sense of the word.  As we have been saying on here for a long time, ultimately the decision to watch and wait, treat with surgery, or treat with radiation has to be the patient's own decision ..... and I so much appreciate Dr. Friedman's insistence that this needs to be my decision.

He basically gave me all three options (with these caveats) ..... watch and wait (but for no more than six months before another MRI or my symptoms become worse), surgically remove the regrowth via translab which would make me SSD but the total tumor would be gone (sooner I do it, the less risk of facial involvement), or treat with radiotherapy (he does not know if I would be a candidate with my childhood radiation exposure).

I am waiting to talk with my PCP soon and hopefully make a decision in the near future.

Thanks again for all of your prayers.

Clarice

[Sheryl]

Hi - been following along on the sidelines and wanted to send my thoughts and prayers to you.  I am a 9-year wait and watcher with a 9th cranial nerve schwannoma - sort of like an acoustic neuroma but not on the 8th cranial nerve.  My husband has a persistent meningioma (another type of benign brain tumor) that was operated on twice and in between treated with Cyberknife.  They say he now has a 50% chance of it recurring again (but I try to think about the other 50%)!! 

What really caught my eye on one of your recent posts was your having your medical history on the computer and all other pertinent health info.  OMG - I thought I was reading about myself - especially the part about "see attached"!! Hubby and I sit in the doctor's waiting room and chuckle with each "see attached" we write.  I have gotten so many thank you's from the nurses and doctors alike.  I carry a spare with me at all times and have one posted on our refrigerator which came in handy once when I had to call "911".  We both have very complicated medical issues too.  I even have pharmacy phone number and dates of recent vaccinations - flu shot, pneumonia shot, tetanus, etc.  I'm hoping not to have to go on to page 2 - so far have been able to condense it on to one page!!

Take care - keep us informed,
Sheryl

[CHD63]

Sheryl .....

Thanks for your post!  Yes, I have all of my contact information, shots, allergies, etc. on my sheet.  So far I have been able to use very tiny font and keep it all on one page, except I put the contact info on the back.  Part of the length is because I list all of the various supplemental vitamins I take.  Everything you read these days, talks about drug interaction, even with vitamins so I list everything to be safe.  ..... and yes, we chuckle, as well at how quickly we can fill out the forms with all of the "see attached" notations.

WOW, both you and your husband watching tumors.  That has to be an incredibly stressful situation.

It looks like I will be a wait and watcher for a bit longer than I had planned.  At least until I can get cardiac clearance.  If that does not happen, I may be forced into considering radiation, whether I want to or not.  Something about radiation that bothers me in my particular case is that if it did not arrest the growth, and subsequent surgery had to be tried ..... there would be scar tissue not only from previous surgery, but from previous radiation, as well.

I guess no one ever said life would be easy ..... and I am well aware it could be much worse!

Thoughts and prayers for you, as well.

Clarice

[Mei Mei]

Ah, it's the dying that's easy and the living that's hard.    That's what my co worker said before my surgery.    I will never forget it and keep plugging away.   I love life, friends and family.
Hugs,
Mei Mei   

[jaylogs]

Ahh Clarice....I am so sorry you've had to go through all this, but your spirit seems to be very positive so I just know that will get you through this.  You know the drill by now...deep breaths, keep us updated, and hang in there! Hugs!!
Jay

[Mei Mei]

How do you know if you have a narrow canal?   I don't know what to do, whether to get the TransEar or the Sonitus.   I don't know anything about the shape of my canal.    I guess  i should go for a consult to an audiologist.
Mei Mei

[CHD63]

When my audiologist was making the impression for my hearing aid, she commented on how tiny my ear canal was.  Also, my ENT told me it is difficult to see my eardrum well because of my tiny ear canal.

Definitely check with an experienced audiologist for a recommendation on your potential success with a TransEar.  I would definitely demo both before purchasing either one.  I do not know about Sonitus or TransEar for sure, but I do not think either one is covered by most insurance ...... whereas a BAHA is.  Just a thought.

Clarice

[Mei Mei]

Dear Clarice<
 
I'm so sorry you are going through all of this.   You have been through enough.   I wish I could tell you what to do.  My blessings are with you for the best decision and outcome ever.   Take a deep breath and make a list of all the comments to help you visualize the comments and opinions.
My heart is with you.
Hugs,
Mei Mei

[CHD63]

Well, dear friends ...... here it is three weeks since my last post on this thread and the decisions have been made for the treatment of my regrowing AN.  Ironically the subject line for this thread seems to be still holding true so I will just tack this post on to here.

Just when I was relaxing ...... at peace after making my treatment decision ....... when WHAM! ...... another crisis.  We had a horrendous wind/rain storm roll through our area last Monday night, taking down trees and power lines all over the place.  Blissfully we had no damage to our property but downed power lines created a nightmare, to say nothing of losing electric power for well over 24 hours and internet/phone/TV cable for over three days.  However, the crisis was not that, but my husband collapsing in a department store, where we had gone during the day on Tuesday to warm up a bit.  He ended up being hospitalized for two days to determine the cause and decide a treatment.  It seems to have been caused from a change in blood pressure meds, coupled with standing too long in one position.  Does not seem to be his heart, but he will wear a heart monitor for a couple of weeks to be sure.

He needs to be healthy because we have plane reservations to fly to Los Angeles in May, where Dr. Friedman and Dr. Schwartz at HEI will remove my pesky regrowing tumor on May 11th, via translab ...... hopefully for the last time.  Assuming the BAHA approval from my insurance comes through, they will put in the abutment at the same time.  Then after a three month period of healing, the processor will be able to be attached.  The anticipation of having the BAHA is what is making this all seem worthwhile going through again.  Not sure I could psych myself up for another procedure to have the abutment implanted later.  Everything has fallen in place so neatly, it just feels right.  I was really apprehensive about telling my first neurosurgeon at Duke about these plans, but felt obligated to explain.  I sent an email to his assistant and had a neat response that they had great respect for my doctors at HEI and wished me well ..... so even my fears about that have been eased.

All arrangements have been made so now to clean up some loose ends here in preparation to be gone a couple of weeks should keep me occupied.  The diversion this week really was not in the plans but hopefully it is behind us and the next four weeks will go by quickly!

Clarice

[Tod]

You've been though so much, Clarice. I wish you the very best of luck in your continuing journey.

My prayers will be with you.

-Tod

[moe]

Clarice,
Oh my you poor thing, and your husband too! It's like we have this sign on us that says "Abuse ME!" I know personally that all those other negative things going on really adds the stress to my already stretched body

Anyway, good thing they found this out now and not early May and am feeling confident that all will be good to go. With your nursing background, I'm sure his BP will be just fine, now that the meds have been adjusted.

Another surgery. You can do this! And the BAHA is an added plus. I had translab, and did great, other than the blood loss which was because of the nature of my tumor, and short term headaches.

You will rock this. Keep truckn
Maureen

[Mei Mei]

Oh, Clarice, when it rains it pours...no pun intended.   You two really have a load on your shoulders.   The thought of another operation would certainly put me in a very worried spot, but we all know here as survivors of this AN, you just have to bite the bullet and grin and bear it till your health is back and you and your husband can get back to having a time to relax.

It's good that he's on a heart monitor.   I remember when I was working in Cardiology back in the 80s, they were just beginning to have Trans Telephonic Monitoring, so you can call the doc's office and send the EKG when you think you are having trouble.   I hope he has that available to him, especially with the trip coming up next month.

Dr. Friedman you can really depend on and I'm sorry I didn't use him ... he still answers my questions within an hour of my sending them and I was never his patient.  Rest assured you are in good hands.   You have to do what's best for you and your Duke people understand that.

I will be thinking of you and wishing you a speedy recovery.
Mei Mei

[Sheryl]

Clarice - you sound so relieved now that the awful decision making process has been solved.  I wish you the best of luck and thoughts and prayers willl be going your way.  Keep us updated.
Sheryl

[Derek]

Very best wishes Clarice for a totally successful outcome...you  deserve it.

Regards

Derek