ANA Discussion Forum

Watch and Wait => For those in the 'watch and wait' status => Topic started by: CHD63 on February 26, 2011, 11:41:41 am

Title: Just when I was relaxing .....
Post by: CHD63 on February 26, 2011, 11:41:41 am: Three years ago this week, a 2.6 cm acoustic neuroma was removed from my left side, via retrosigmoid (suboccipital) approach. The first MRI at six months stated that there was "some enhancement .....may be due to post-op change or residual tumor." MRI at one year stated "enhancing area .....compatible with a residual intracanalicular tumor." MRI at two years was not done with narrow slices, but the impression was "stable MRI of the brain." So I relaxed. Now the recent MRI (at three years out) states "enhancing mass seen ..... measuring 1.3 cm .....consistent with recurrent acoustic neuroma."

My neurosurgeon wanted a current audiogram, which I had done last week. Wonderfully, my hearing is the same as it was last year and the year before. Therefore, my neurosurgeon wants to wait for any further surgery until I have experienced significant hearing loss and then he would recommend doing a translab approach to completely remove the tumor.

I am troubled on a couple of fronts ..... what was the size of the enhancement at six months, one year, and two years? How much did it grow in the past year? Do I really have to wait for further hearing loss (which he said is inevitable anyway with a growing tumor, even if I do nothing) or facial nerve involvement before seeking additional treatment?

OK, here's the dilemma ..... I had massive doses of radium in my nose when I was a kid, following a tonsillectomy/adenoidectomy (still remember the awful burning). Does that preclude having any current radio-surgery treatment? Are there any stats out there on radiation treatment of recurrent tumors? Any different side effects from radiating a regrowth as opposed to initial tumor?

My initial tumor was a rapidly growing one ..... from not seen to 2.6 cm in about 15 months ..... so I was told that radiation was not recommended on fast growing tumors.

So there you have it ..... just when I was relaxing .....

Clarice
Title: Re: Just when I was relaxing .....
Post by: Chris P on February 26, 2011, 11:51:49 am: Clarice,

I am sorry to hear about your problem. I do not have any knowledge to offer I just wanted to let you know we are pulling for you and that all will go well. Have you thought of getting a second opinion. I did that at one point and it really helped me . It may help you decide what to do next. Hang in there.

Chris P.
Title: Re: Just when I was relaxing .....
Post by: TJ on February 26, 2011, 11:54:57 am: Clarice

I am so sorry to hear about the regrowth. Although I can't offer any advice, you have shown me that once in this wonderful world of AN's we always need to keep our guard up. Please keep us informed on your journey.

Best of Luck

TJ
Title: Re: Just when I was relaxing .....
Post by: wwarr on February 26, 2011, 12:04:29 pm: Clarice,

I want to tell you to keep your chin up!!! I am so sorry you got this news of regrowth. It is the news we all dread to hear but I do know that you can do this! You have offered so much encouragement to so many and I want to give it right back to you at this moment!! I am sending you a big hug!!

Do you have to wait until facial nerve problems could arise? I understand the hearing aspect of waiting especially if they're planning on removing it via a translab but I understand your concern with facial nerve problems. If you had a fast growing tumor in the past, aren't they concerned with the possibility with this tumor regrowth? Can you get a second opinion of what course you should pursue. Go with your gut feeling.

Hang in there! My thoughts are with you.

Wendy
Title: Re: Just when I was relaxing .....
Post by: Jackie on February 26, 2011, 12:20:36 pm: Clarice,

So sorry that you have these new issues to deal with. You are such a vital part of this forum and have been so generous with your love and advice,
seems so unfair that you have to deal again with this dilemma. You must get answers to your questions before you can make an informed decision.
Perhaps another fresh opinion would be helpful??? I will keep you in my prayers,
Blessings to you,
Jackie
Title: Re: Just when I was relaxing .....
Post by: CHD63 on February 26, 2011, 12:55:15 pm: Many thanks Chris, TJ, Wendy, and Jackie for all your comments and prayers!

Yes, I am mulling over whether to send my MRI(s)/Audiogram(s) to another medical center for an evaluation. Main thing I have to keep in mind is whether I want to sever ties with my neurosurgeon (whom I respect and trust) if I opt to go out on my own with another approach to treatment.

I really did not want to walk this road ...... but then, none of the rest of you did either! ::) Whatever happens, we are on the same (but at times with very different variations) journey.

Clarice
Title: Re: Just when I was relaxing .....
Post by: moe on February 26, 2011, 03:57:32 pm: Oh Clarice,
I'm so sorry to hear of this. The thought of having to go through it all again....
We are here for you-hang in there, and think positively. You are a great inspiration and source of comfort for so many.
Maureen
Title: Re: Just when I was relaxing .....
Post by: Jim Scott on February 26, 2011, 04:10:45 pm: Hi, Clarice ~

I'm sorry to learn about the apparent re-growth of your AN, 3 years after your removal surgery. This is every AN patient's greatest concern and when it occurs, it has to be discouraging. However, you obviously realize that being worried may be natural but accomplishes little and you're seeking a solution that will work for you. That's the sensible approach and I'm not the least bit surprised that its the one you chose. At this point, I wouldn't be so presumptuous as to offer specific advice but I wouldn't rule out another surgery. Still, radiation still seems like the logical approach but your concerns about the prior radiation you received as a child are quite relevant. A federal advisory committee recommends that the lifetime radiation exposure be limited to a person's age multiplied by 1,000 millirems (example: for a 65-year-old person, 65,000 millirems). Frankly, I'm not conversant with radiation measurements and they seem rather arcane to me but I'm sure you'll soon be posing your radiation questions to a radiation oncologist, who should be able to offer you the answers you need to have to plan your next move on addressing this newly-discovered tumor re-growth. Whatever the future holds Clarice, I'm confident you'll face it with an accurate mixture of aplomb and common sense. You'll certainly have my unequivocal support and the support (and prayers) of everyone that posts/reads on these forums. I know that I can state with confidence that we all wish you success as you venture forth on yet another quest to rid yourself of your obdurate AN.

Jim
Title: Re: Just when I was relaxing .....
Post by: mk on February 26, 2011, 07:04:46 pm: Hi Clarice,

Oh, I am so sorry to hear about this development. It may be OK to W&W this for a while, but in the meantime, it wouldn't be a bad idea to get an opinion from a radiation oncologist. Your concern about the total dose of radiation seems perfectly valid, but given that stereotactic radiation is much more focused, it might be like comparing apples and oranges. Wouldn't hurt to ask specifically about it.
When did your doctor say that you should get your next MRI? Can you ask him to have it a bit sooner, so that you can get some idea about the rate of growth (hopefully this time it will be a slow growing one).

My best wishes, please keep us informed.

Marianna
Title: Re: Just when I was relaxing .....
Post by: Kaybo on February 26, 2011, 07:33:05 pm: Sweet Clarice-
You know that you have been & will continue to at the top of my prayer list!

You know I love you & we will get through this!

K ;D
Title: Re: Just when I was relaxing .....
Post by: CHD63 on February 26, 2011, 10:28:12 pm: I knew I could count on the support from all of you! Thanks Maureen, Jim, Marianna, and Kay for your kind words and advice. I have known about the regrowth for a couple of weeks, but just could not bring myself to post it. I just sort of felt like I would be letting everyone down ...... when regrowth is every AN patient's fear.

Now I am relieved that I did post so I can feel the warmth of your care and your prayers. Thank you is a very inadequate expression of how grateful I am to all of you!

Clarice

P.S. Keep those pieces of advice coming ..... I am taking it all in and I know the answer will become clear.
Title: Re: Just when I was relaxing .....
Post by: sgerrard on February 27, 2011, 12:09:55 am: Dang, just when everything was settling down nice and quiet. Clarice, I hope this is A) a glitch, or B) something you can watch and not need to do anything with.

Your questions, though, would be great ones to post on the Cyberknife forum, where Dr. Medbery or Dr. Spunberg would be happy to answer them. Just post it in the Acoustic Neuroma section:

http://www.cyberknife.com/Forum.aspx

My guess is that as Marianna pointed out, the focused nature of AN radiation treatment would mean it is not a problem, and I don't know of any study suggesting that second growths are harder to treat. Also note that life time radiation limits are not so strictly enforced that they over-rule good judgement. Life-saving radiation treatment would not be denied to a terminal cancer patient merely on the grounds that treatment would pose a risk of future cancer, for instance. It is always in the end a question of what is the best approach for your specific case.

Meanwhile, stay cheerful, there is no reason not to be. ;)

Steve
Title: Re: Just when I was relaxing .....
Post by: Suu on February 27, 2011, 03:03:59 am: Quote from: CHD63 on February 26, 2011, 12:55:15 pm

Yes, I am mulling over whether to send my MRI(s)/Audiogram(s) to another medical center for an evaluation. Main thing I have to keep in mind is whether I want to sever ties with my neurosurgeon (whom I respect and trust) if I opt to go out on my own with another approach to treatment.

Hi Clarice. I'm pretty new here but I can see how much you are loved and respected on this forum so my prayers are also going your way.

If you send your MRIs to another surgeon for a second opinion will you need to sever ties immediately with your current doctor or can you simply get a second opinion and go from there whether you want to go with another doctor?

Whatever you decide, it is going to be in your favour and for your wellbeing. I wish you all the best of luck that I can send.

Hugs,
Suu
Title: Re: Just when I was relaxing .....
Post by: ppearl214 on February 27, 2011, 05:34:17 am: Clarice

First and foremost.... HUGGLEZZZZ!!!! :-* :-* :-*

I'm with Steve...... maybe worth checking with the CK forum docs as they are well versed on this topic. Me still thinks relaxing is in order and hoping the docs (Medbery/Spunberg, who usually answer AN radiation questions) can help the cause.

xoxo
Phyl

Quote from: sgerrard on February 27, 2011, 12:09:55 am
Dang, just when everything was settling down nice and quiet. Clarice, I hope this is A) a glitch, or B) something you can watch and not need to do anything with.

Your questions, though, would be great ones to post on the Cyberknife forum, where Dr. Medbery or Dr. Spunberg would be happy to answer them. Just post it in the Acoustic Neuroma section:

http://www.cyberknife.com/Forum.aspx

My guess is that as Marianna pointed out, the focused nature of AN radiation treatment would mean it is not a problem, and I don't know of any study suggesting that second growths are harder to treat. Also note that life time radiation limits are not so strictly enforced that they over-rule good judgement. Life-saving radiation treatment would not be denied to a terminal cancer patient merely on the grounds that treatment would pose a risk of future cancer, for instance. It is always in the end a question of what is the best approach for your specific case.

Meanwhile, stay cheerful, there is no reason not to be. ;)

Steve
Title: Re: Just when I was relaxing .....
Post by: CHD63 on February 27, 2011, 06:53:31 am: Steve ..... Thanks for the suggestion about the Cyberknife Forum, I will do that. I had thought for 2 1/2 years that what was visible on the MRIs truly was scar tissue so it was unsettling, to say the least, to discover it was residual tumor that has now begun to grow. I will probably watch and wait for awhile ..... I'm just not very good at that! :o :o

Suu ..... No, I would not have to sever any ties if I get second or third opinions ..... only if I were to act upon any different recommendation. He does not do radio-surgery and I did not talk directly with him. However, I feel strongly he would not operate on me if I had radiation and it failed to arrest the growth.

Thanks for the huggles, Phyl!

Clarice
Title: Re: Just when I was relaxing .....
Post by: Melinda_australia on February 27, 2011, 09:07:30 am: Dear Clarice,

Oh love..
I am so sorry to hear this has happened again.
I wish I could advise you with my experience,
As you know I am new to having an AN,
I offer you my love and support and prayers, from Australia!
Do get some more doctors opinion's
Keep you chin up!
So many prayers are coming you way! :-*

Big Hugs and Kisses
Melinda :-*
Title: Re: Just when I was relaxing .....
Post by: Rivergirl on February 27, 2011, 10:12:05 am: Clarice,
Sorry for your regrowth, going through it once is bad enough but again, just not fair, hope you can find the right path to take and it is successful.
Title: Re: Just when I was relaxing .....
Post by: leapyrtwins on February 27, 2011, 10:19:43 am: Clarice -

I'm so sorry to hear this. I wish I had answers to your questions about radiation, but I don't. Steve's suggestions are wonderful though; definitely take his advice.

Know that we are thinking of you and hoping for the best possible outcome.

Jan
Title: Re: Just when I was relaxing .....
Post by: yardtick on February 27, 2011, 08:46:01 pm: Clarice,

So sorry you are having to deal with this yet again. You are a very strong, educated woman, and wisdom is another fine characteristic that you posses. Gratefully, you have shared your strength, education and wisdom with all of us on this forum. You have supported so many of us when we needed support and now it is our turn to support you.

Take care,
Anne Marie
Title: Re: Just when I was relaxing .....
Post by: CHD63 on February 27, 2011, 11:36:24 pm: Melinda, Rivergirl, Jan, and Anne Marie .....

Thanks so much for all of your love, care, and prayers.

I did not know about this Forum until after my original surgery in 2008 so I did not have the much needed support during those awful weeks of diagnosis, decision, and treatment. As a result, I have made a conscious decision to do what I can to ease the fears of those who are newly diagnosed or struggling with some of the potential after effects.

Little did I know that I would become a recipient of the tremendous support from you wonderful people! We are all in this together and that is what makes it bearable now!

Clarice
Title: Re: Just when I was relaxing .....
Post by: Mickey on February 28, 2011, 08:22:07 am: Hi Clarice! I just wanted to wish you the best going fowards. Your a strong person who has been so helpful to many people in our AN community. You have many good vibes coming your way. Keep positive as you are to whatever you feel you need to. Everythings going to be allright. Prayers and Best wishes, Mickey
Title: Re: Just when I was relaxing .....
Post by: cindyj on February 28, 2011, 08:49:13 am: Hey, Clarice...wow, so sorry you're having to deal w/ the stress of this again...I have no advice, but agree w/ Steve's comment to "stay cheerful" as I know you will :-*

Cindy
Title: Re: Just when I was relaxing .....
Post by: ombrerose4 on February 28, 2011, 09:14:23 am: Dear Clarice,

I am so sorry to hear your news. It is something all of us hope will never happen again and it makes me feel that all our post op MRI's that say "normal post op changes" may not be quite true. You have supported me so many times and I just want to let you know we are all here for you. You have such great insights and so much knowledge, I know you will make an educated decision. I am sending you a hug and a :) Please keep us informed-we care very much!
Title: Re: Just when I was relaxing .....
Post by: BostonBill on February 28, 2011, 07:39:05 pm: Hi Clarice,
I truly wish I had some great advise or point you in the right direction. I am sure anything I could offer would be redundant.
So I will send my best wishes and keep you in my thoughts and prayers!
Be well,
Bill
Title: Re: Just when I was relaxing .....
Post by: CHD63 on February 28, 2011, 10:19:28 pm: Mickey, Cindy, Lauren, and Bill .....

Thanks for being here ..... not only for me at the moment, but for all of the others out there being diagnosed for the first time and scared to death. I am not in the panic mode I was the first time, just unhappy to have to be dealing with the decision again. Most of us can agree that making the decision for treatment (or watching and waiting) is the most stressful part of this whole thing.

Things are definitely looking up as I move farther along this course of gaining advice and opinions from all of you, as well as some expert medical advice.

We are in this together ..... like it or not! ::)

Clarice
Title: Re: Just when I was relaxing .....
Post by: SML on March 01, 2011, 10:06:04 am: Clarice,

I'm really sorry that you are going through this again. You are a very strong woman and you certainly have our support and prayers as you continue with your journey. :-*

Scarlett & Rich
Title: Re: Just when I was relaxing .....
Post by: pjb on March 01, 2011, 01:14:14 pm: Clarice I am so sorry to hear of your news I have not been on the forum I am having problems with an upcoming different rare surgery for my daughter (My special caregiver) .. You have been such a help to all of us on this forum and I feel so bad you to have to go through this again.. I am in a W&W mode also and hoping my residual does not grow.. We hope that the first time we go through the surgery that it is gone and then to find out it is still there is very upsetting.. I hope you will decide what will be the best approach for you and maybe you will inspire me to follow your decision because right now I am very confused as what approach I should take..

Best Wishes,

Pat
Title: Re: Just when I was relaxing .....
Post by: kenneth_k on March 01, 2011, 01:32:49 pm: Hi Clarice.

I truly hope that everything works out fine.

Best regards, Kenneth
Title: Re: Just when I was relaxing .....
Post by: jerseygirl on March 01, 2011, 02:51:21 pm: Dear Clarice,

So sorry you have to live through this nightmare. I really think everything will be fine because your original tumor, although fast growing, was medium sized and did not present an impossible situation at the time of its removal. Therefore, any residuals are not big yet and are easily removed. Question is where are they and how big are they now. You can request a copy of your radiologist's (MRI) report, if you didn't yet and it should be specific on both accounts. My guess is that the residual is around the hearing nerve. In an attempt to save it, the surgeon left some cells there. Was the tumor removal considered complete and total or where there any questions?

Sending big hugs,

Eve
Title: Re: Just when I was relaxing .....
Post by: Mei Mei on March 01, 2011, 07:49:45 pm: Dear Clarice,
Sorry to hear about this "excitement" in your life. You were just relaxing and settling in for a nice future. I would suggest Dr. Konziolka at the University of Pittsburgh. I have his email address if you'd like it to send your reports. I have it from years ago when I was contacting to take my cousin over there. It's worth the trip. Someone in my local support group went there and was very satisfied.
Hugs to you, Clarice...you are in my thoughts and prayers. My email is posted on my information if you want to write.

Mei Mei
Title: Re: Just when I was relaxing .....
Post by: CHD63 on March 01, 2011, 09:50:03 pm: 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
Title: Re: Just when I was relaxing .....
Post by: CHD63 on March 04, 2011, 09:47:35 pm: 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
Title: Re: Just when I was relaxing .....
Post by: Sheryl on March 11, 2011, 06:58:37 pm: 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
Title: Re: Just when I was relaxing .....
Post by: CHD63 on March 12, 2011, 07:23:03 pm: 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
Title: Re: Just when I was relaxing .....
Post by: Mei Mei on March 13, 2011, 09:00:54 am: 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 8)
Title: Re: Just when I was relaxing .....
Post by: jaylogs on March 13, 2011, 11:41:40 am: 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
Title: Re: Just when I was relaxing .....
Post by: Mei Mei on March 16, 2011, 09:32:23 am: 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
Title: Re: Just when I was relaxing .....
Post by: CHD63 on March 16, 2011, 02:48:40 pm: 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
Title: Re: Just when I was relaxing .....
Post by: Mei Mei on March 17, 2011, 06:43:55 pm: 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
Title: Re: Just when I was relaxing .....
Post by: CHD63 on April 08, 2011, 05:33:06 pm: 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
Title: Re: Just when I was relaxing .....
Post by: Tod on April 08, 2011, 06:04:54 pm: 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
Title: Re: Just when I was relaxing .....
Post by: moe on April 09, 2011, 10:33:48 am: 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
Title: Re: Just when I was relaxing .....
Post by: Mei Mei on April 09, 2011, 03:21:00 pm: 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
Title: Re: Just when I was relaxing .....
Post by: Sheryl on April 10, 2011, 12:24:49 am: 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
Title: Re: Just when I was relaxing .....
Post by: Derek on April 10, 2011, 10:17:26 am: Very best wishes Clarice for a totally successful outcome...you deserve it.

Regards

Derek
Title: Re: Just when I was relaxing .....
Post by: CHD63 on April 10, 2011, 01:40:23 pm: Thanks, all of you .....

Really feel at peace with all of this ..... but I'm still not sleeping very well so my subconscious thinking is most likely in overload mode. In a way I wish we were flying out to California tomorrow instead of 4 weeks from now ...... patiently waiting is NOT a strength of mine for much of anything. ::) However, I do have much to do between now and then, so ........

I jokingly told my husband last week ...... since we have a month's notice now, there is time to clean out the garage! He did not find it amusing ..... :o

Clarice
Title: Re: Just when I was relaxing .....
Post by: kenneth_k on April 10, 2011, 10:24:15 pm: Hi Clarice.

I wish you luck with surgery. Sounds like that you are in the best of hands.

Kenneth
Title: Re: Just when I was relaxing .....
Post by: Suu on April 11, 2011, 03:06:00 am: Quote from: CHD63 on April 10, 2011, 01:40:23 pm
Thanks, all of you .....

Really feel at peace with all of this ..... but I'm still not sleeping very well so my subconscious thinking is most likely in overload mode. so ........

Clarice

I just wrote this to Marianna on the other thread - have you tried camomile tea? I've been having it before bed for the past few months now and it seems to have been working. I sleep well and don't roll over as much during the night.

Regards,
Suu xxoo
Title: Re: Just when I was relaxing .....
Post by: CHD63 on April 11, 2011, 05:03:19 am: Thanks for the reminder about camomile tea, Suu. Used to do that when I was still working full-time and had trouble shutting my brain off at night sometimes. Just thought ..... I used to drink hot milk with honey in it sometimes also. I actually slept better last night so that is good!

Clarice
Title: Re: Just when I was relaxing .....
Post by: ombrerose4 on April 11, 2011, 11:02:37 am: Hi Clarice,

I just wanted to let you know you and your husband are in my thoughts. I hope he is feeling better. It was good to hear that you made your decision and I know you will be in good hands at HEI. Waiting around till the date gets near can be an anxious time, so try to keep busy with family and friends. Most of all just want to wish you an easy surgery with a speedy recovery :)
Title: Re: Just when I was relaxing .....
Post by: Jackie on April 11, 2011, 11:55:04 am: Dearest Clarice,

So glad your decision is made and that you are going to HEI. Your experience there I am sure will be wonderful, as all who have been before you!
You're fortunate to be in thae position of choosing them for your surgery. I'll be praying for you, knowing full well that you're in the best of care.
Hope your hubby is doing better, when all this is over, treat yourselves big time!
Keeping you in my heart and thoughts,
Jackie
Title: Re: Just when I was relaxing .....
Post by: CHD63 on April 11, 2011, 12:00:17 pm: It's funny ...... but yesterday our minister jokingly said to us after church "When you both are finally all fixed up, what are you going to do?" My response was "Be very bored, but that kind of boredom I can handle." We really had planned on traveling in our retirement, not spending it in hospitals ...... so next thing up is the Symposium in Cincinnati in June, Colorado Springs in July, and northern Wisconsin in August. If we manage all of those things OK, hopefully we can venture a bit farther from home. Yes, we plan on treating ourselves big time!! ;D

Thanks, Jackie.

Clarice
Title: Re: Just when I was relaxing .....
Post by: Mei Mei on April 11, 2011, 01:45:22 pm: Good plans! Heal well and get going to far off lovely places!
Mei Mei
Title: Re: Just when I was relaxing .....
Post by: msmaggie on April 11, 2011, 07:18:55 pm: God's peace and strength be with you both! My thoughts and prayers are with you, that God will bless you with all you need.

Priscilla
Title: Re: Just when I was relaxing .....
Post by: CHD63 on April 12, 2011, 06:27:26 am: Thanks! You know, it may be weird, but I am strangely calm about all of this. Although in my heart and mind, I know it is from all of the prayers being said ..... much better and safer than tranquilizers! :) Just would like to have it over and done with so I can move to the recovery phase and get on with my life.

This forum has been such a source of strength and friendship with so many of you I have not met ..... and yet I feel like I know you all because we have this tremendous bond of not needing to explain how we feel ..... we all know!

Thank you, ANA, for providing this wonderful resource!

Clarice
Title: Re: Just when I was relaxing .....
Post by: cindyj on April 12, 2011, 12:48:38 pm: You will be in very good hands out there...yes, I'm a bit partial to Drs Friedman and Schwartz ;) Hoping it all goes very smoothly for you and that you can put this AN problem behind you once and for all!

Let me know if you have any questions about the LA experience 8)

Cindy
Title: Re: Just when I was relaxing .....
Post by: Mei Mei on April 12, 2011, 01:37:46 pm: I'm partial to them too and never met them. Dr. Friedman wrote me a note and said see you in Cincinnati. What a special doctor. You are in good hands. We are determined to put this episode behind us but not the wonderful Friends we've met along the way.
Mei Mei
Title: Re: Just when I was relaxing .....
Post by: Jim Scott on April 12, 2011, 01:57:56 pm: Clarice ~

Like you, I felt quite calm just prior to my AN surgery and for the same reason. Also like you, I was anxious to get past it and return to my 'normal' life. I pray that your surgery goes smoothly, without complications, and that the doctors can remove the entire tumor. I 'm confident you'll do great and we'll be thinking of and praying for you, as you know. Your contributions to these forums are very much appreciated, Clarice, and we look forward to seeing more of them in the future.

Jim
Title: Re: Just when I was relaxing .....
Post by: JerseyGirl2 on April 12, 2011, 02:03:12 pm: Clarice,

You will definitely be in great hands at House! The entire experience -- Seton Hall, St. Vincent's, all the medical staff -- is still quite vivid in my mind even though I was there a little over three years ago. These folks know what they're doing and they do it well. I still marvel at the fact that even though they have it down to a science, I never felt as though I was one of a zillion patients -- it all felt very personalized and focused. I hope you'll have a wonderful experience there.

Catherine (JerseyGirl2)
Title: Re: Just when I was relaxing .....
Post by: CHD63 on April 12, 2011, 02:53:32 pm: Thank you all. Sometimes I mull over the "what ifs," but I still come around to knowing and believing that things happen for a prescribed reason. One "what if" is what if I had gone to House for my first surgery three years ago and then I know and fully realize that the ultimate outcome of regrowth could surely have happened anyway.

Dr. Friedman at House is incredible. He calls or emails me, just to check on me and make sure all is in order, questions answered, etc. Unheard of by me anywhere else ..... well, except for our primary care doc, who calls to check on us. Dr. Friedman is one of the reasons I am so at peace with this whole thing. I know he cares and is making sure everything goes well.

..... but the reassurances of those of you who have walked this path is also what is easing the load so I thank you from the bottom of my heart!

Clarice
Title: Re: Just when I was relaxing .....
Post by: CHD63 on April 13, 2011, 08:23:07 pm: Just have to share!!! My insurance approval came through for both the translab surgery at House on May 11th and the Oticon Ponto Pro BAHA. So, I am all set to go to California in a little over three weeks! How many people do you know that got very excited when they were approved to not only have another hole drilled in their head, but a rod screwed into their skull! :o ::) :o

Clarice
Title: Re: Just when I was relaxing .....
Post by: yardtick on April 13, 2011, 11:24:16 pm: Clarice,

I too experienced a calm before my surgery, I knew something wasn't right and surgery would get some answers. I feel the same way now about my "nose job". I don't understand the calmness, since I am normally a very high strung person (don't tell my husband I said that) :-X

You are going to enjoy your "hotel room with a view", met the LA gang and be posting on this forum before you can shake a stick ;)

Take care Clarice,
Anne Marie XO
Title: Re: Just when I was relaxing .....
Post by: Mei Mei on April 14, 2011, 05:04:44 am: Of course, Clarice! You've thought this through and waited for this. No doubt you're looking forward to it. Try several walks a day to get yourself ready. It's so nice to know that you are going to be in the good hands of the docs out at House. I'll be thinking of you on the 11th and thereafter for your speedy recovery!
Hugs,
Mei Mei
Title: Re: Just when I was relaxing .....
Post by: CHD63 on April 14, 2011, 06:14:08 am: Thanks, all of you, for the well wishes.

Looking forward to my "room with a view" ...... which reminds me ..... any of you recent HEI alums ..... did you have a private room at St. Vincent's? Does Seton Hall and/or the hospital have wi-fi? We would much rather take our own computer than use a communal one.

We have been going to the Y every other day to walk on the treadmill and use the nautilus machines ...... nothing terribly strenous, but we are both trying to be in as good a shape as possible before we go ...... and listening to Podcasts, using my ScanSound single-side earbud keeps my mind off things for awhile. ;D

Clarice
Title: Re: Just when I was relaxing .....
Post by: suboo73 on April 14, 2011, 06:31:42 am: Hi Clarice!

WONDERFUL to hear that your insurance is all approved! Congrats on passing that major hurdle!!

Sounds like you have everything in order, and are at total peace with your decision.
Yes, I would want to choose Dr. Friedman as well - i spoke to him on the phone once and he was so nice!
----------
So now, as others have suggested, keep busy and before you know it, you will be on that plane and California bound!

Wishing you all the best for a successful surgery and quick recovery.
Continuing prayers.

Sue

PS - we cleaned out the garage last year and painted ceiling, walls and floor (with that fancy epoxy paint). But, my basement is still a mess if you need something to do! ;D
Title: Re: Just when I was relaxing .....
Post by: Cheryl R on April 14, 2011, 07:06:10 am: Clarice, I'm thrilled for you and one less worry out of the way! May is coming fast and then it will be over. I hope you are up to the rest of the summer events. Just think how many prayers will be coming your way!
Cheryl R
Title: Re: Just when I was relaxing .....
Post by: JerseyGirl2 on April 14, 2011, 07:55:59 am: Quote from: CHD63 on April 14, 2011, 06:14:08 am
Thanks, all of you, for the well wishes.

Looking forward to my "room with a view" ...... which reminds me ..... any of you recent HEI alums ..... did you have a private room at St. Vincent's? Does Seton Hall and/or the hospital have wi-fi? We would much rather take our own computer than use a communal one.

All the rooms at St. Vincent's are private. I had a great view of the "Hollywood" sign from my room, which added greatly to the expericence. Definitely take your own computer -- the communal ones are old and slow!!! Wi-fi is available.

Catherine (JerseyGirl2)
Title: Re: Just when I was relaxing .....
Post by: CHD63 on April 14, 2011, 11:09:05 am: Catherine .....

Thanks so much for HEI info. You know, it is funny, but I find myself obsessing over the little things. Maybe it is because I have no control over the big things, but have some control over the little ones ...... or my emotions just do not want to deal with the big things ..... ???

Clarice
Title: Re: Just when I was relaxing .....
Post by: cindyj on April 14, 2011, 11:54:25 am: Yes, some great views avail from the rooms at St. Vincent's! Also, you'll be on a whole floor of practically nothing but other ANer's - my mom and husband were able to talk w/ many family members of the other AN patients and it was comforting to all, I believe.

And, yes, take your laptop! As Catherine said, the ones in Seton are old...make that ancient...and very slow.

Love your new pic, by the way :)

Cindy
Title: Re: Just when I was relaxing .....
Post by: CHD63 on April 14, 2011, 12:54:32 pm: Thanks, Cindy .....

Pic was taken while watching my granddaughters play with their new toys on Christmas Day. :)

Thanks for the additional confirmation to take our laptop. My husband just did not want to lug it out there on the plane if it would be useless with no wi-fi.

Gee, do I get to pick my "room with a view?" :o :o ..... just kidding!

Clarice
Title: Re: Just when I was relaxing .....
Post by: ppearl214 on April 14, 2011, 03:58:31 pm: Clarice..... lordy, I hate the thought of you going through this again.... BUT!!!! (and in my case, BIG BUTTT ;) )..... I'm glad you are comfortable with choice, decision and moving forward. BTW, does this mean you are not making it to Cinci? :'(

Hugglez!!!!!!
xoxo
Phyl
Title: Re: Just when I was relaxing .....
Post by: CHD63 on April 14, 2011, 04:16:49 pm: Phyl ....

Still planning to make it to Cincinnati ..... "Lord willin' and the crick don't rise." We are only a 3 1/2 hour drive from there so that should be doable after flying more hours than that across country three weeks before. We are staying in the Hilton so I may just have to miss more sessions than I'd like to, to go rest. I will be Exhibit S (scar or shaved :o). How could I possibly miss the chance to see you anyway??? :o

Clarice
Title: Re: Just when I was relaxing .....
Post by: moe on April 16, 2011, 11:01:27 am: Clarice,
Yes, we are a little warped here,~ excited about brain surgery AND a titanium screw! :P
I had the BAHA with my TRANSLAB with the original surgery. My BAHA site didn't too too well, probably because I was obsessed with everything else going on (the surgical incision, eye being stitched shut.)
So you know the routine, just keep good tabs on BOTH incisions!
Good luck, God speed, it'll be over before you know it ;)
Maureen
I also like your pic :)
Title: Re: Just when I was relaxing .....
Post by: CHD63 on May 06, 2011, 12:46:01 pm: Well, dear friends .....

My husband and I fly to LA tomorrow, translab surgery and BAHA abutment placed next Wednesday, May 11th. Thanks to so many of you wonderful cheerleaders on this forum (if I started naming you, I would surely leave someone out!), I am amazingly calm about the whole surgical process. I will have to admit I am a bit anxious about making sure I have everything I need before getting on that plane in the morning. Made lists and checking them off so here's hoping .......

Taking laptop so either Hubby or I will post and let you know how it all went.

Thanks so much for all of your prayers.

Clarice
Title: Re: Just when I was relaxing .....
Post by: Jim Scott on May 06, 2011, 01:16:46 pm: Clarice ~

Godspeed and many good thoughts and prayers for you as you and your husband fly to Los Angeles. You're attitude is exemplary and I'm confident you'll have a smooth surgery and a great result. You know you're in the best of care and of course, we'll be anxiously awaiting your updates.

Jim
Title: Re: Just when I was relaxing .....
Post by: JerseyGirl2 on May 06, 2011, 01:29:57 pm: Clarice,

Best wishes for a successful surgery! You will be in wonderful hands at House -- they'll all take great care of you during your stay. Hope you'll have time to see some of the sights around L.A. -- my husband and I took in quite a few tourist-y things both before and after my surgery. It was fun, plus a wonderful way of keeping your mind focused on more enjoyable things than surgery.

Catherine (JerseyGirl 2)
Title: Re: Just when I was relaxing .....
Post by: mk on May 06, 2011, 01:49:27 pm: I wish you all the best Clarice, you are in great hands and everything will go really well. Please keep us updated.

Marianna
Title: Re: Just when I was relaxing .....
Post by: Kaybo on May 06, 2011, 02:13:16 pm: Clarice~
Remember that anything left at home (except Truman) can be gotten there easily!!

You are going to rock it!!

143!
K ;D
Title: Re: Just when I was relaxing .....
Post by: CHD63 on May 06, 2011, 04:23:00 pm: Thanks all of you!!! You are the greatest!!

Clarice

143 too Kay ..... ;)
Title: Re: Just when I was relaxing .....
Post by: Jackie on May 06, 2011, 04:37:14 pm: Dearest Clarice,

May I add to the long list of admirers that you are such a dear sweet caring and warm person, who is so very well thought of, I will be praying for a swift recovery
with no ill affects. Yes, you are in good hands and will be embraced with His loving guidance! Be strong Truman, and let us hear from you soon!
Wishing you the very best of outcomes,
Jackie
Title: Re: Just when I was relaxing .....
Post by: Cheryl R on May 06, 2011, 05:14:16 pm: Clarice, you know that you are such a dear friend and I will be thinking of you Weds. The angels will be watching over you and keeping you safe! Have a good trip with some enjoyment too and will be looking forward to hearing how it goes.
Cheryl R
Title: Re: Just when I was relaxing .....
Post by: Mei Mei on May 06, 2011, 06:18:56 pm: Dear Clarice,

I will be sending wonderful vibes from the surgery through `the recovery.

In 1989 I had surgery nearby there at UC Irvine. I was all alone and took public buses down to Newport Beach and Balboa. Balboa is my dream place to visit. You walk out on the pier and there is a hamburger restaurant called Ruby's. Take your order upstairs and eat your hamburger and milkshake facing west...all you can see is the ocean and Catalina Island. Ir's incredible. They also make breakfast. Then walk back a few blocks to town and take the ferry to Balboa Island where there's a village of cute little beach homes and very friendly people.

May the wind be behind you!
Mei Mei
Title: Re: Just when I was relaxing .....
Post by: suboo73 on May 07, 2011, 04:24:56 am: Clarice,

Prayers all around for you, Truman and the extended family.

Will be thinking of you on Wednesday.

Sue
Title: Re: Just when I was relaxing .....
Post by: ombrerose4 on May 07, 2011, 08:23:48 am: Clarice,

You and your family will be in my thoughts. I am confident that your surgery will go smoothly and that you will have an easy, speedy recovery.
Title: Re: Just when I was relaxing .....
Post by: moe on May 07, 2011, 09:55:41 am: Clarice,
You are probably enjoying sunny CA by now. Hopefully you can enjoy the beach and burgers like Mei Mei suggested. That sounds like so much fun, and so simple! Ah those simple joys of life.

You will be in my prayers especially on Wednesday. I'll be flying to TX (again!) for my son's graduation from college in SAntonio, so will keep you in prayer as I'm flying the friendly skies. (Sorry, K, no trip to Houston this time ;) )

You will do marvelously, I am confident.

Peace to you and Truman,
Maureen
Title: Re: Just when I was relaxing .....
Post by: msmaggie on May 07, 2011, 11:50:38 am: Prayers are going up that all will proceed according to plan. God is keeping you in His hands!

Priscilla
Title: Re: Just when I was relaxing .....
Post by: CHD63 on May 09, 2011, 09:14:42 am: We arrived safely in LA on Saturday. Seton Hall is perfect for our needs. Did a bit of sightseeing yesterday. Seeing relatives today. Pre-op stuff tomorrow. Surgery on Wednesday. Thanks so much for all of your well wishes and prayers.

Clarice
Title: Re: Just when I was relaxing .....
Post by: ppearl214 on May 09, 2011, 09:57:47 am: Clarice

I do believe that you know how much I am sending my hugglez your way..... good vibes, good vibes just for you!
xoxox
Phyl
Title: Re: Just when I was relaxing .....
Post by: suboo73 on May 09, 2011, 10:29:40 am: Clarice,

Glad you have arrived safely and soon it will be your big day!
Many, MANY prayers coming your way as you go thru this surgery.

Hi to Truman!
God speed.

Sue
Title: Re: Just when I was relaxing .....
Post by: Keri on May 09, 2011, 11:27:53 am: OH NO!!!!! i thought i had just missed a couple of weeks on the forum. i come back and i see all this talk of clarice's surgery and couldn't find it anywhere. now that i've found out about the surgery, i am also realizing that i missed 3 months of your life, clarice! how did i do that? i don't know. i never saw this thread before.

so, i am glad you are settling in there and now that i know what's up with you i will be praying for you.

big hugs and lots of prayers and love and concern from the east coast, for both you and your hubby,
keri
Title: Re: Just when I was relaxing .....
Post by: Anomar11 on May 09, 2011, 06:58:34 pm: Clarice,

I'm just now catching up with your story. All the best to you. You'll be in my prayers.

Mona
Title: Re: Just when I was relaxing .....
Post by: leapyrtwins on May 09, 2011, 07:33:38 pm: Good luck, Clarice.

Godspeed :-*

Jan
Title: Re: Just when I was relaxing .....
Post by: yardtick on May 09, 2011, 08:33:09 pm: You are in my thoughts Clarice. I can't wait for you to start posting your own updates.

Anne Marie
Title: Re: Just when I was relaxing .....
Post by: Mei Mei on May 09, 2011, 10:05:19 pm: You're going to be OK, you're in good hands.
I'm praying hard for you.
Hugs,
Mei Mei
Title: Re: Just when I was relaxing .....
Post by: Denise S on May 10, 2011, 07:12:38 pm: Clarice,

I am sending BEST WISHES for your surgery tomorrow!! I will keep you, your medical staff, and your family in my prayers!

Denise (MI)
Title: Re: Just when I was relaxing .....
Post by: ombrerose4 on May 10, 2011, 08:18:26 pm: Clarice,

Keeping you in my thoughts :)
Title: Re: Just when I was relaxing .....
Post by: Keri on May 10, 2011, 09:18:45 pm: Clarice,
I'll be praying for you tomorrow.

Keri
Title: Re: Just when I was relaxing .....
Post by: Kaybo on May 10, 2011, 09:44:12 pm: You know you have my prayers tomorrow...& tonight...for a good nights sleep. PEACE to Truman tomorrow as he waits!

K ;D
Title: Re: Just when I was relaxing .....
Post by: CHD63 on May 10, 2011, 10:49:09 pm: It was a grueling day of tests and interviews ..... so glad that part of over. See Dr. Friedman at 8:30 in the morning, surgery is scheduled for 11:00. Hopefully Truman will update this thread after surgery tomorrow. On my way to bed and hopefully a good night's rest.

Thank you all for your prayers and well wishes.

Clarice
Title: Re: Just when I was relaxing .....
Post by: Derek on May 11, 2011, 03:22:06 am: All our thoughts and prayers are with you for a successful outcome Clarice.

Best Wishes

Derek
Title: Re: Just when I was relaxing .....
Post by: ppearl214 on May 11, 2011, 04:19:58 am: Clarice,

Not sure if you will see this but..... sending best of wishes to you! Prayers and wishes to you!

xoxooxox
Phyl
Title: Re: Just when I was relaxing .....
Post by: saralynn143 on May 11, 2011, 01:18:32 pm: I've been praying for you and your surgeons all morning, Clarice and will continue.
Title: Re: Just when I was relaxing .....
Post by: Kaybo on May 11, 2011, 06:08:58 pm: OK...I know this is Truman's job & I'm sure he'll be along later with a better update, but I also know how we all worry!! Clarice is out of surgery and the doctors said it went well!

YEA!!

K ;D
Title: Re: Just when I was relaxing .....
Post by: lori67 on May 11, 2011, 06:57:21 pm: Yea is right!

Thanks, Kay!! If you talk to Truman, let him know we're thinking of both of them!

Lori
Title: Re: Just when I was relaxing .....
Post by: Keri on May 11, 2011, 09:10:42 pm: Ditto! Praying for Clarice and Truman and have been thinking of them all day.

I hope Clarice is still resting well.

Keri
Title: Re: Just when I was relaxing .....
Post by: ksiwek on May 11, 2011, 09:14:02 pm: Clarice...I have been thinking about you all day. SO GLAD to read that surgery went well! Good things!
Title: Re: Just when I was relaxing .....
Post by: suboo73 on May 12, 2011, 04:00:47 am: Kaybo,

THANK YOU for the update on Clarice - i had an all-day meeting yesterday, and my personal webmail/email was all messed up, so I am just now reading the news.

Clarice & Truman - continued prayers for healing during this time.

Sincerely,
Sue
Title: Re: Just when I was relaxing .....
Post by: cindyj on May 12, 2011, 07:23:24 am: Excellent!

;D

cindy
Title: Re: Just when I was relaxing .....
Post by: CHD63 on May 12, 2011, 12:34:00 pm: Truman for Clarice here (hope I get this right). Her surgery went well. Thanks for posting, Kaybo. She is in ICU and will move to a private room this afternoon. The docs report complete AN removal, no facial nerve involvement, and BAHA abutment "installation". We could not have asked for a better result. Thanks to all of her dear friends on the Forum for your love, support, prayers, etc. It is palpable to us.
Truman
Title: Re: Just when I was relaxing .....
Post by: mk on May 12, 2011, 12:53:07 pm: Great, thank you for the update. I am so glad that everything went well, as you already know the first couple of days are rough but the worse will be over soon. Give Clarice all our love.

Marianna
Title: Re: Just when I was relaxing .....
Post by: msmaggie on May 12, 2011, 02:50:08 pm: Whew! I have been waiting for an update. I am so glad everything is going well!! :D :D :D Hope it continues to do the same.

Priscilla
Title: Re: Just when I was relaxing .....
Post by: Jim Scott on May 12, 2011, 03:18:59 pm: Truman ~

Thanks for that splendidly positive update on your wife, Clarice.

She is a much respected and admired member of these forums and her contributions have been invaluable. I trust that will continue. For now, though, we're delighted to learn that everything went so smoothly. I believe that prayers were definitely answered. I know you'll pass along our collective 'high-fives' and wishes for a speedy recovery (and quick hospital discharge) to Clarice and let her know that our thoughts remain with her. You can tell her that you were able to post just fine, too. :)

Jim
Title: Re: Just when I was relaxing .....
Post by: ombrerose4 on May 12, 2011, 03:49:43 pm: What wonderful news :D :D :D
Title: Re: Just when I was relaxing .....
Post by: yardtick on May 12, 2011, 05:50:35 pm: Thanks Truman for the update.

All I have to say is way to go Clarice :-*

Anne Marie
Title: Re: Just when I was relaxing .....
Post by: Kaybo on May 12, 2011, 09:41:22 pm: I think Truman might give Jim Scott a run for his money in the vocabulary department!! ::) Jan, we are in trouble!!

K ;D

Fixed the mis-spelling.
Title: Re: Just when I was relaxing .....
Post by: Keri on May 12, 2011, 09:52:59 pm: i like hearing, 'we could have not asked for a better result.' great news!! tell clarice hello!!

kay - that's funny!

keri
Title: Re: Just when I was relaxing .....
Post by: Kaybo on May 12, 2011, 10:07:16 pm: Mobey...like Mobey d***? Stupid phone, I meant $MONEY$!!!
Title: Re: Just when I was relaxing .....
Post by: ppearl214 on May 13, 2011, 04:14:47 am: Truman (Clarice),

Thank you SO very much for this update! Thrilled to hear that wellness wishes from all of us here (as you can see, there are MANY!) are working. Speedy recovery to Clarice......

Sending MAJOR healing hugglez!
xo
Phyl
Title: Re: Just when I was relaxing .....
Post by: leapyrtwins on May 13, 2011, 04:45:26 am: So happy that things went so well for Clarice. What a relief to hear such great news ;D

Give her our best, Truman.

Jan

- message to Kaybo. Funny, very funny :D
Title: Re: Just when I was relaxing .....
Post by: kenneth_k on May 13, 2011, 05:38:35 am: So happy to hear the good news.

Kenneth
Title: Re: Just when I was relaxing .....
Post by: texsooner on May 13, 2011, 06:10:43 am: Great to hear all went well for Clarice. Thanks for the update.

Patrick
Title: Re: Just when I was relaxing .....
Post by: Kaybo on May 13, 2011, 07:11:27 am: OK - slight highjack here - did someone change the title of a classic book to make it look like I was using a bad word? Come on guys, I ABSOLUTEY was not trying to be bad here...did I get the name wrong or something? ???
That makes me look bad... :-[

K

No worries, Kay. I fixed the mis-spelling. All is well. :)
Title: Re: Just when I was relaxing .....
Post by: CHD63 on May 13, 2011, 10:07:09 pm: Dear Friends,
I only have my phone to reply but wanted to tell you how much I appreciate all of your thoughts, love, concern, and many, many prayers!! It all truly paid off because everything has gone so well. A few headaches but manageable and better every day.

Thanks so much!!!

Clarice
Title: Re: Just when I was relaxing .....
Post by: Kaybo on May 13, 2011, 10:37:14 pm: Surgery Wednesday afternoon and texting Friday night - you rock, little lady! Praise the Lord for an answer to prayers!

Love you!

K ;D
Title: Re: Just when I was relaxing .....
Post by: cindyj on May 14, 2011, 07:11:46 am: Well, my goodness! It's you, yourself, already - very impressed! Thanks for letting us know you're doing so well...take it easy now, though, ok! You'll be walking that tunnel from Seton in no time!

Hugs,

Cindy
Title: Re: Just when I was relaxing .....
Post by: Cheryl R on May 14, 2011, 08:13:19 am: Clarice, Such good news to hear and glad it is going as well as can be! I hope this continues and recovery goes well!
Cheryl R
Title: Re: Just when I was relaxing .....
Post by: Jim Scott on May 14, 2011, 12:03:25 pm: Hi, Clarice ~

I won't burden you with a long post but just want to offer my personal congratulations on your successful and apparently uncomplicated AN surgery. You are an inspiration. Rest and be well.

Jim
Title: Re: Just when I was relaxing .....
Post by: Keri on May 14, 2011, 12:07:24 pm: I agree, rest and recover well, Clarice!! We are praying for you!

Keri
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Post by: Jill Marie on May 14, 2011, 09:31:51 pm: Good to know that Clarice is doing well, looking forward to her first post op post! Jill
Title: Re: Just when I was relaxing .....
Post by: Kaybo on May 15, 2011, 05:53:18 am: Jill-
She already has posted & not only that, is texting and playing Words With Friends!! How incredible is that?? :o

K ;D
Title: Re: Just when I was relaxing .....
Post by: Jill Marie on May 15, 2011, 07:31:55 pm: Thanks Kay, guess I should have read more of the posts. I was just so glad that I found the thread. Read a couple posts that said she was doing well, never would have imagined she would be posting already.

Clarice I'm so glad to see you posting already, hoping that your recovery continues to go well. At this rate you will be out walking in the sunshine in no time! Take Care, Jill :D
Title: Re: Just when I was relaxing .....
Post by: CHD63 on May 15, 2011, 08:44:02 pm: Yes, I am back to posting from Seton Guest Center!!! I was sprung from St. Vincent's Hospital just before noon today.

This has been the most amazing surgery and recovery ever! I initially had some headaches (F3D, you know), but nothing but extra strength Tylenol once or twice a day since then, which takes care of both the back and the head easily. Balance is back to about what it was before surgery. Of course, I am totally deaf in my left ear now, but you know what, it really does not seem all that much worse than without my hearing aid before. Really looking forward to getting the processor in three months.

More hair shaved this time, I guess because Dr. Friedman just shaved a bigger swath to do the translab and place the abutment for the Ponto Pro at the same time, instead of two swaths.

Went for a lovely walk in the garden outside Seton. The huge, gorgeous roses are in full bloom. Not exactly a 5 star hotel, but we lucked out and got one of the three rooms with a king-sized bed (it's the little things that count, can you tell?). It is very comfortable here and hope to do a bit of sight-seeing with another couple from here sometime this week. Lots of wonderful people, both patients and personnel, etc.

Well, my dear friends ...... thank you ever so much for all of your posts of caring and praying. Couldn't have done it without you!!

Clarice
Title: Re: Just when I was relaxing .....
Post by: Cheryl R on May 15, 2011, 09:31:19 pm: Clarice, We just knew it had to go well for you with the cheering section you have had! Cheryl R
Title: Re: Just when I was relaxing .....
Post by: moe on May 16, 2011, 10:44:49 am: Clarice,
Just now returning from TX and soooo glad to hear how great everything went and to see you are posting already! I knew you would rock this.
What a relief. Now just make sure you take it real easy, you hear????
So happy for you!
Maureen :D
Title: Re: Just when I was relaxing .....
Post by: CHD63 on May 16, 2011, 03:29:43 pm: Hi Maureen .....

Well, I more like "rockered" it ..... but very grateful for the skills of Friedman and Schwartz ..... they are tough to beat for success.

I continue to do well at 5 days out. Only Tylenol for minor aches and pains. Course the insomnia inducing steroids are doing their thing. Noticed a tiny bit of possible facial weakness today so may have to up the steroids again ..... oh joy!! They warned me it could happen and would be temporary until all the swelling was down.

It has been very cool in sunny California so sweaters and jackets needed. Did not expect that so layering a lot. Flowers are still gorgeous so a calming influence.

Glad you are back home. We plan to fly home a week from today.

Clarice
Title: Re: Just when I was relaxing .....
Post by: leapyrtwins on May 16, 2011, 08:59:03 pm: Clarice, it's fantastic to hear that you are doing so well ;D

Jan
Title: Re: Just when I was relaxing .....
Post by: CHD63 on May 16, 2011, 11:44:32 pm: Thanks, Jan .....

Couldn't have done it without all of you forumites, who have been there, done that!

Clarice
Title: Re: Just when I was relaxing .....
Post by: suboo73 on May 17, 2011, 04:22:05 am: Hi Clarice & Truman,

SO GLAD to hear everything is going so well for you since surgery...amazing!
Enjoy the gardens, even with the cool weather - we have unending rain back here in the Shenandoah Valley, so an umbrella is definitely needed.

My best to you as you continue your recovery!
Thank you for the initial postings, Truman!

Sue
Title: Re: Just when I was relaxing .....
Post by: JerseyGirl2 on May 17, 2011, 07:09:58 am: Clarice,

It's so good to hear that your surgery went well and that you're experiencing a good recovery. I think that many people have the preconceived notion that those of us who've traveled far for our surgery are going to have a more difficult time and feel stranded in a distant city. I attended a taping of "Jeopardy!" in Culver City (about a 30-minute drive from House) the Tuesday after my Sunday afternoon release to Seton Hall from the hospital and ate lunch in Hollywood the next day. My cross-country flight home ten days after surgery was as routine as any flight I've taken. That being said, everyone is different and there are no guarantees as to how you're going to feel, but folks shouldn't just make the assumption that travelling for surgery is a bad idea.

Hope you continue to do well and have a good trip home.

Catherine (JerseyGirl 2)
Title: Re: Just when I was relaxing .....
Post by: CHD63 on May 17, 2011, 07:23:43 am: Catherine .....

So true. So true. I wouldn't exactly call this a vacation trip, but we are going down to Newport today for an overnight at the beach. Would love to go see a Jeopardy taping. The hyperacussis I have makes me a tad uneasy if it might be loud music.

Best decision we ever made to come out here for surgery.

Clarice
Title: Re: Just when I was relaxing .....
Post by: Kaybo on May 17, 2011, 07:59:28 am: Now, see, I disagree...I have never thought that travelling would be any different than having surgery anywhere else. I think it just all depends on the individual, surgery and the way they recover! I went to Johns-Hopkins for my T3 surgery and it was no different than the surgeries I have had in my hometown...maybe a bit unfamiliar surroundings, but nothing a GPS couldn't help! ;)

Just my opinion...

K ;D
Title: Re: Just when I was relaxing .....
Post by: ombrerose4 on May 17, 2011, 09:13:48 am: Clarice,

You are such an inspiration to all of us! I am so glad your surgery went well and you are getting to relax and enjoy some of the California scenery! Have a safe trip home.
Title: Re: Just when I was relaxing .....
Post by: ksiwek on May 17, 2011, 11:09:37 am: Yay! I am soooo happy to read your posts! I was there a year ago now....can you believe it!?!? I wonder if you are in the same room I was? They gave us a bigger room since we had a baby ;D

I am glad you are getting to do some sight seeing. The weather and scenery in CA make it ideal for those important post op walks to iron out the balance! We headed down to Malibu one day and it was amazing just to sit in the sun and hear the ocean waves!

Really though, I am just so happy for your outcome. I can't wait for you to get your processor! When I had my translab, Dr F barely shaved any hair...I was surprised! I had much more hair shaved for my subsequent BAHA surgery, so I assume more hair shaving is the product of both at once.

Man oh man do I remember the steroid insomnia! I remember on day 3 or 4 before my eyes could focus much (so I couldn't read the clock) I was convinced it was going to be morning soon. So, I rang for the nurse to get me a new gown (due to steroids and post pregnancy I sweat through multiple) and get me cleaned up for breakfast. When the nurse came I told her I wanted to get ready for breakfast and a visit from my husband and baby. She said sure, but you know that it is only 1am right?!?! Shoot! That was a long wait for company! Funny looking back!

Keep posting and we'll keep praying!

Best,
Kris
Title: Re: Just when I was relaxing .....
Post by: jerseygirl on May 17, 2011, 05:54:04 pm: Clarice,

It is such a pleasure to read about your phenomenally good outcome! Continued good recovery to you!

Eve
Title: Re: Just when I was relaxing .....
Post by: Denise S on May 17, 2011, 07:40:57 pm: YIPEE!!! ;D

I am so glad to be reading posts from you so sound that all sound overall positive!! I hope things continue to go well for you and glad to hear the docs jumped on the steroids when needed. Hopefully you won't have much with the delayed paralysis part. Hopefully you can really enjoy some of your time out there....sounds like you are for sure going to try!! Take Care, Denise (MI)

BEST WISHES for a speedy & healthy RECOVERY!!!
Title: Re: Just when I was relaxing .....
Post by: cdove on May 19, 2011, 11:35:32 am: Hello and sorry to hear about your apparent recurrence. I am 10 years W&W this month and have posted only once or twice. Regarding the radium treatments, I had dozens of x-rays as a child during pre- and post-surgical treatment for a sub-occiptal cyst and I would absolutely not have FSR for my AN unless I had not other choice OR I was over 80 years old (53 right now). BUT, all of life's a risk. Do your research, get a few opinions, and get on with it. You have spunk...you'll make the right decision and be fine!

My very best to you,
Chris
Title: Re: Just when I was relaxing .....
Post by: Sheryl on May 19, 2011, 02:32:47 pm: Hey Chris - didn't know there was another long-term W&Wer out there. I'll be 10 years in November and Derek is right behind me.
Continued success with W&W,
Sheryl
Title: Re: Just when I was relaxing .....
Post by: Keri on May 20, 2011, 08:28:01 am: Clarice,
I'm hoping and praying recovery is still going well! So happy for you! Enjoy the rest of your time in CA. Tell David "hello"!!
Keri
Title: Re: Just when I was relaxing .....
Post by: mk on May 20, 2011, 02:07:40 pm: Hi Clarice,

Since our surgeries were so close together I feel like we are "surgery buddies". It seems like you really did awesome and I hope things are getting even better every day.

Marianna
Title: Re: Just when I was relaxing .....
Post by: CHD63 on May 20, 2011, 07:45:25 pm: Yes, I continue to do far better than I ever dreamed I would. These guys are awesome out here. Just picked up both surgical reports and Dr. Schwartz had some tough scar tissue (from the surgery three years ago) to cut through to get out the regrowth, but he successfully did it, with no permanent damage to the facial nerve!

I still have a teensy, teensy bit of facial weakness. Really only noticeable when I grin. A weird feeling like a burning thread running across my lower left lip. Food still does not taste normal. Some dry eye so yes all of you mother hens out there, I am vigorously putting eye drops in my eye!! Dr. Friedman assured me this is a very temporary and very minimal reaction and I believe him.

Meeting with LADavid, Nancy, and Lainie tomorrow to go out to eat at The Yardtown in LALive!! Should be fun!

Pack on Sunday, early flight home on Monday. Yaaaaaaaaaaaaaay!

Clarice
Title: Re: Just when I was relaxing .....
Post by: ombrerose4 on May 20, 2011, 08:49:20 pm: Clarice,

You a truly one spunky lady! I am so glad everything is going so well for you ;D
Title: Re: Just when I was relaxing .....
Post by: Jackie on May 21, 2011, 12:30:09 am: Clarice my dear,

Just so very excited that your recovery is going so well! I must say you are so deserving!!!
Continued Blessings and answer to prayers!!! Please say hello to La David and the gang!!
Lovingly
Jackie
Title: Re: Just when I was relaxing .....
Post by: ppearl214 on May 21, 2011, 06:46:21 am: Clarice

You amaze me... I am in utter awe! :) Continued wellness wishes to you! Please give my love to David, Nancy and Lainie... have a fantastic visit!

xoxooxox
Phyl
Title: Re: Just when I was relaxing .....
Post by: Kaybo on May 21, 2011, 06:53:44 am: Clarice is one pretty amazing lady in many ways!!

K ;D
Title: Re: Just when I was relaxing .....
Post by: mk on May 21, 2011, 07:49:25 am: Hi Clarice,

it is interesting that we have exactly the same issues: I also have the very weird taste, very slight facial weakness and eye dryness. I realized yesterday that my AN side eye does not tear. I think that all these symptoms are the result of the facial nerve weakness, as I was reading that the facial nerve controls the taste on the anterior 2/3 of the tongue. Let's hope these will improve with time as the nerve heals. Have a great flight home on Monday.

Marianna
Title: Re: Just when I was relaxing .....
Post by: Keeping Up on May 21, 2011, 10:33:16 am: Clarice

Great progress - you (and your surgery buddy MK) have had a rough and long road with this AN thing. Glad to hear your recovery is going as well as can be expected.

Hope you can just go ahead and relax now, you deserve it!

Ann
Title: Re: Just when I was relaxing .....
Post by: CHD63 on May 21, 2011, 12:37:34 pm: Hi All .....

Phyl and Kay ...... You two are the amazing ladies on this forum!!! Both of you have had far more issues than I have, but you still continue to be a tremendous influence and support to all of us on here!

Marianna ..... That is interesting that you have the same weird stuff going on post-op. You know exactly what I am talking about then. Really just minor annoyances at this point and I know it will get better before long. This morning was my last Decadron pill so we'll see if that makes any difference in a few days. It's always possible I may need to have another countdown to relieve the symptoms. Sure not anxious for that, because I am looking forward to sleeping more than an hour at a time!!! But you know that drill, as well!

..... and yes, Ann, I do definitely plan to relax for good now! Dr. Friedman said no MRI for a year (he is that confident that the tumor is ALL gone this time), another in 4 years and that would be it. I am choosing to believe him!!!

Hope I remember everyone who said to tell the LA Gang "hi" from them! ;D Nancy is picking us up at 2:00 and we are meeting David and Lainie at The Yardtown in LALive for lunch/dinner and talking!!!! Just know it will be a fun "chatter-filled" time.

Thanks to all of you for your tremendous encouragement and support!!

Love, Clarice
Title: Re: Just when I was relaxing .....
Post by: Denise S on June 23, 2011, 09:32:38 pm: Clarice, I was wondering how you are doing? Figure it must be about 6 weeks since your surgery! I hope things are coming along well. Do you think this translab procedure and healing, etc. were easier, better or worse than previous surgery?

Are you on facebook?
Take care & wishing you well!!
Denise (MI)
Title: Re: Just when I was relaxing .....
Post by: CHD63 on June 23, 2011, 09:38:57 pm: Hi Denise again .....

Just answered your other question about Medicare coverage. Yes, it was six weeks ago yesterday ...... seems like a year ago, in many ways. I am doing extremely well. The healing/recovery was hugely easier than three years ago ..... mainly because all of my compensating for balance had been done. Far less fatigue this time, as well. I still have ongoing balance issues because of my lack of any vestibular systems and still a tiny bit of gaze stabilization problems when I am tired. But overall, doing great.

Went to the symposium last week-end and had such a warm, fuzzy time with fellow AN patients!

Yes I am on Facebook. PM me your Facebook name and I'll look for you.

Clarice
Title: Re: Just when I was relaxing .....
Post by: Denise S on June 23, 2011, 10:25:42 pm: That is GREAT News!!

So glad that it already seems 'like' a year ago...that means the recovery & healing is going smoothly ;D Definately makes a lot of sense that it can be easier because of the vestibular stuff already affected!! O.K., what exactly is gaze stabilization? I know I heard it before, but not sure what it really is. So, your abutment area must be healing up well too!?!? Only a couple more months to go and hopefully the BAHA will be awesome for you! 8)

Glad you had a good time and were able to go to the symposium, bet it was fun too ;) I think I would have liked to go more to meet others from here than anything.

Take care...will pm ya
Title: Re: Just when I was relaxing .....
Post by: CHD63 on June 24, 2011, 05:49:43 am: Hi Denise .....

Gaze stabilization is being able to keep one's eyes from jumping around when looking at an object or something. Sometimes I turn to look at something else and my eyes just keep moving around for a few seconds before holding still. I really need to go back and resume the vestibular exercises I used to do on a regular basis following my first surgery three years ago. The best one is putting a large black letter on a sticky note, put it at eye level on a wall, back up about 6 feet, then hold my gaze on it while moving my head back and forth ..... first sideways, then up and down. Just thought it would eventually settle down on its own. It's always worse when I'm tired or stressed.

Re: the abutment. There were two Oticon reps at the symposium that I was able to spend time with. One of them is a nurse. She looked at my abutment and said it had healed beautifully and in fact looked fully osseointegrated already. FDA requires both Cochlear and Oticon to recommend not attaching the processor for three months. In my opinion it is to protect themselves from the worst case scenario patient who takes that long to osseointegrate. I am still in the process of finding where I can most easily go for the processor to be programmed (I already have the Ponto Pro from HEI.)

Yes, one of the most valuable aspects of the symposium is the networking with other ANers. I met a whole bunch of new people ...... many not on the forum and it was exhilarating to be able to share with each other. Of course, I still learned many more things from the presenters, as well.

See you on FB. Clarice
Title: Re: Just when I was relaxing .....
Post by: Denise S on June 27, 2011, 11:51:07 am: Now I get it ;) I remember doing those same exercises after my surgery. I was glad someone showed me how to do that one plus many others before leaving the hospital, otherwise I don't think I would have been able to really understand the vestibular things. Due to my delayed facial paralysis it seemed like I needed to do all kinds of those excersises for a long time. I do say I still have some eye issues too, when I am more tired or stressed. Actually at a recent thourough eye exam she was a bit concerned still over my eye and was doing everything to purposley see how fast it would fatigue because my eye actually seemed like it got stuck (or something). She then figured a lot had to do with how dry my eye on my surgical side is because for some reason I never got the tears back there. ugh!

Thanks for updating me on the terms ;)
Denise
Title: Re: Just when I was relaxing .....
Post by: Keri on June 28, 2011, 09:38:53 pm: i believe 'osseointegrate; is about the coolest sounding word i've heard in a long time!
Title: Re: Just when I was relaxing .....
Post by: CHD63 on June 29, 2011, 05:00:33 pm: Just made the appointment today for a date for my Ponto Pro "hook up" in Lexington, KY. AUGUST 4TH. Yaaaaaaaaaaay! I can hardly wait! Really tired of saying "Will you repeat that please? I did not understand you."

Plus, the other day my 2-year-old granddaughter was talking to me on my deaf side (out of my line of vision) and I did not see nor hear her until the person on my hearing side said, "Uhhhhhhh, Rachel is trying to talk to you."

36 days!!!!!!!!!!!!

Clarice
Title: Re: Just when I was relaxing .....
Post by: Mei Mei on June 29, 2011, 06:06:47 pm: Good Luck to you. I was thinking of going to Tenn to get the TransEar. You are right to go the distance. There are too many problems with bad fittings by audiologists that don't know what they are doing. The bad fittings set us up for failure.
Hugs,
Mei Mei
Title: Re: Just when I was relaxing .....
Post by: Kaybo on June 30, 2011, 07:14:44 am: So excited for you!! Can't wait to hear all about it...

K ;D