No one asks anymore....

[TP]

Thank you Vonda. I am so happy you now have a new companion. I agree one pet does not replace another. We had a lab when we first got married and she was the friendliest and happiest dog and we still cry over the lost of her and she died 20 years ago. However, a shepherd is a totally different dog from a lab and shepherds are so loyal to their owners (my lab loved everyone). Our shepherd sat at our feet always, she was our security, if we were sad or sick she could sense it and would try to make us happy, she protected our yard and home, we could take her anywhere without a leash and she stayed by our side, she was noble in her life and noble at death. I don't know if I will get another dog anytime soon but I know if I get one it will be another shepherd. In the meantime my three cats are trying to be loyal like Steffi, a little hard for cats but they are trying very hard. They miss her too.

[Lizard]

Thank you Vonda. I am so happy you now have a new companion. I agree one pet does not replace another. We had a lab when we first got married and she was the friendliest and happiest dog and we still cry over the lost of her and she died 20 years ago. However, a shepherd is a totally different dog from a lab and shepherds are so loyal to their owners (my lab loved everyone). Our shepherd sat at our feet always, she was our security, if we were sad or sick she could sense it and would try to make us happy, she protected our yard and home, we could take her anywhere without a leash and she stayed by our side, she was noble in her life and noble at death. I don't know if I will get another dog anytime soon but I know if I get one it will be another shepherd. In the meantime my three cats are trying to be loyal like Steffi, a little hard for cats but they are trying very hard. They miss her too.

I think it depends on the lab, one of mine is very intuitive and territorial, while the other one just wants to play and be scratched, however they both protect their yard!  It really is so tough to lose a pet.  My chocolate has not been interested in food for the last few weeks, so were doing all sorts of tests to see what's up.  Its really scares me when they don't act like themselves.  I lost my last dog to cancer and this one is just way to young to be sick...anyway they are both amazing but I feel like my chocolate understands me better than most humans do!

Just my 2 cents,
Liz

[Captain Deb]

bdsgurl,

There is a lot that can be done to alleviate post-op headaches, including not relying on your surgeons for help and finding a headache specialist.  Head over the the headache section of the forum for tons of discussion and experience!

Capt Deb

[Dusty]

   Not sure if I'm the right one to comment.  I'm actually this AN's wife of 27 years.  I don't understand or can't even imagine what my husband and all of you are going through!  But, I DO care!  I don't know what to do anymore to help him.  He is angry and in pain all the time.  He had his surgery in March of 2009 and it is over a year and he says he feels no better.  We went through months and months of physical therapy  to work on the balance issues, but he still walks like he has had too much to drink.  His headaches are horrible and I try to help by rubbing his head (when he lets me, most of the time he just pushes me away, physically and emotionally!  I want to understand, I want to help, I want the love of my life back.    He thinks that nobody cares about him, but they do!  Most family and friends ask ME how he is doing rather than ask him.  He just does not seem to be "available"  to most people.  So while he thinks no one cares, I'm having to constantly tell people that "no he is not well, he is miserable and I don't know what to do anymore"  I think one of your replies said it right when they said that "loved ones just want you to be normal again".  Of course we want our loved ones to be normal again, who would want anything like this to go one for someone you love sooo much!  Most people do have a hard time understanding constant pain, especially when they can't see it.  He does put on a "normal" face for people when we do venture out, but at home, you can see just how miserable he is.  He does not believe that there is any real life left for him.  I love him so much and wish I could make him happy and healthy again.    We have been through so much these past two years, I don't know how we are still together except that we made a commitment and believe in it.  When we heard that he had this tumor, our lives stopped.  EVERYTHING HAS CHANGED!  We almost  lost our 14 year old daughter three times to suicide (because she thought her Daddy was going to die from this tumor and surgery)  She was Baker Acted one week before my husbands surgery, and again the night before his surgery and one more time Easter Sunday a couple of weeks after his surgery.  I spent two week in Gainesville going from one part of Gainesville to another part of Gaiensville trying to help my husband get better enough to go home and the other trying to convince our daughter that we loved her very much and that her Daddy was not going to die, although he often says he wishes he would!  I hate what this tumor has done to my family!!  I know he was the one who had the tumor growing in his head and the one who had the surgery to remove it.  I know that he is the one who is STILL dealing with the (JET ENGINE' noise in his head from the tinnitis (caused by the tumor), I know that he is the one who is dealing with the contant  pain and dizziness as well as the emotional effects all of this has on him, BUT, he is the love of my life and I too am affected by all of this!!  I am heart broken and torn because I don't know what he needs or what to do for him.  Please understand that I am so sorry that any of you have and are still dealing with this life changing "crap", but some of us really do CARE!!!!

[Jim Scott]

Hi, Dusty's wife ~

I'm so sorry to learn that your husband is having such a difficult recovery and that you're struggling to find ways to help him.  I re-read Dusty's earlier posts and it seemed as if he was doing O.K., post-op, except for a stubborn, aggravating problem with persistent tinnitus and some balance issues.   Apparently, his condition has deteriorated in the past few months.   

Although I enjoyed a fairly smooth and rapid post-op recovery from my AN surgery, my wife suffers from spinal problems (3 major surgeries) as well as Crohn's disease (colitis/IBS), Fibromyalgia and some lesser issues, so I understand what living with someone in constant pain can be like.  She is on various medications but refuses to take opioids (narcotics) .  She is very active and refuses to allow her pain to define her or control her life.   I greatly admire her for this, and she knows it.  I doubt that I could be as stoic if I had I her pain to deal with.  I truly believe that women handle pain much better than most men.  However, I can relate to your husband's adverse reactions and negative outlook because most men (including this one) hate to be seen as weak and resent needing to be 'helped', unless they ask for it....which we usually won't.....because that would make us appear weak.  It's a vicious cycle - and I suspect that your husband is caught in it due to his pain and lack of progress in his recovery.  Chronic headaches can be very debilitating and certainly contribute to depression and withdrawal. 

Your anguish (from not being able to alleviate your husband's pain) is palpable and heartbreaking to read but I'm glad you posted your message because others have been where you are or your husband is today, and come through it.  Your dedication to the man you love is touching and certainly admirable.  This kind of love and caring is becoming all-too rare, today.  I'm happy to report that my wife (of 40 years) was  equally solicitous following my AN surgery in 2006.  I was a 'bear' for a few weeks, as I was furiously impatient to 'get back to normal' (even though my neurosurgeon commented that I was 'breaking all the records' for post AN surgery recovery.  Not fast enough for me, apparently.  My wife has told me that I was grouchy and, like your husband, would push her away when she attempted to make me comfortable.  I recall doing that, to my shame, because I didn't want to be 'dependent' or appear 'needy', which I now see was ridiculous.  My wife has confided to me that she worried I might remain a 'grumpy guy' and if so, she wondered whether our marriage (great, up until then) would survive. Fortunately for all concerned, I got past this 'stage' of my (splendid) recovery and she says that I was back to my old, congenial self a few weeks later.  I still admire her patience that came from her love for me and I'm still deeply appreciative of my wife's ability to look past my then-grumpy demeanor, not take it 'personally' and persevere until I was better.

I hope you can get through this, too.  I would suggest that your husband consider consulting a pain management doctor for help.  My wife has such a physician and he has been very helpful in many ways, including surgically installing a patient-controlled (electronically) nerve-blocking device in my wife's body (last year) that has helped lessen a lot of the serious pain she was enduring for a long time.  Modern medicine is astounding and there are a host of medications available to help those in chronic pain. I trust that you and your husband will look into this possibility.

Meanwhile, you'll likely receive some replies to your post that will, I assume, offer you hope and encouragement as well as some practical advice.   Of course, you and your husband will be in the prayers of many, including me.  Please post here whenever you feel the need - and I hope that you'll both have better days ahead.

Jim

[CHD63]

Oh, Dusty's wife .....

I am so sorry Dusty is still suffering so ..... and you, along with him.  As married couples we signed on "in sickness and in health."  Sometimes the "in sickness" part becomes quite overwhelming.

Jim has very eloquently responded to your post and I hope you can take some consolation from it.  The only thing I would like to emphasize is to please try to encourage Dusty to seek out medical professionals who will continue to try other avenues for relief from not only the physical (and severe tinnitus is physical) aspects of his post-AN treatment, but the emotional aspects, as well.  As most of us can attest, having an AN was life-changing.  However, it should not mean the end of useful living ..... just changed from what it was before.  Life is not the same when you are suddenly SSD, but there are ways to deal with it.  Do not give up seeking answers and other treatments.

New advances are being made all the time in treatment of tinnitus.  Vasilike Rauch, AuD was an excellent presenter at the Chicago ANAUSA Conference last summer and she spoke on new advances in the treatment of tinnitus.  If you go to:  http://www.ctran.com/cgi/relycart.cgi?DN=ctran.com&FILE=/orders/ANA/orderform.htm  you can order a transcript of her session.  If you join ANAUSA, the newsletters carry the latest information on treatments.  The American Tinnitus Association is another good resource (see http://www.ata.org/) as well.

And please know that we care on this forum so encourage Dusty to vent and share with us the walk he is taking.

Many thoughts and prayers for relief.

Clarice

[moe]

Hi Dusty's wife,
I can understand and empathize a lot with what you are going through! I don't even know what my husband would say if he were to type on this problem, but he would probably say, I'm not as happy as I used to be. The AN kind of stole the "joi la vie" from my persona. I am hopefully turning a corner now, 4 years post op-Actually tomorrow is my 4 year anniversary! (I kind of blocked the exact date out of my mind for some reason. It was a crazy time- we were geographically/military separated, it was a mess.....)

Anyway, I too am dealing with many issues, thankfully not the headaches, but it is a long road dealing with all the things that come at you all the time. I have bad tinnitus, (I don't think as bad as your husband), SSD of course, facial nerve cut, so dealing with all the issues there (eye issues,  etc.) It wears me down. I try to put on the happy face when away and really try at home, but it is hard. (I have a dear husband who unfortunately sees the glass half empty while I try to see it half full, so that is not conducive to positive healing).

If there is an AN support group nearby, I would definitely have both of you go.  I have never given up hope to feel better, so it all depends on how persistent or motivated your husband is to "feel" better.
I recently had facial micro/neuro/vascular reconstructive surgery  for facial movement and smile restoration. I will hopefully begin to see movement to the face in a couple of months. Right now things are "cooking". There is the masseter nerve supply to a transplanted muscle into my cheek area. Pretty intense surgery. I refer it as my "miracle surgery." I take XANAX for the tinnitus which helps to tone it down from a scream to a 24/7 high pitch shrilly sound.
I'm going to get some eye procedures done in the fall, and get the BAHA restarted. (Had it inserted during the original surgery, but it wasn't working well, so they "unscrewed" it and said I could try again later.

So I keep pluggn along,and am looking forward to much better times and function, but it is hard, day after day, and depressing at times (then there's female hormones!) You are probably feeling like "danged" if you do, "danged" if you don't when it comes to supporting your husband. I know my husband feels that way!

I'm also on antidepressants. Some people do not like to take pills, but it is a necessity.

Anyway could  you  encourage your husband to see a psychiatrist for antidepressants? there are many meds out there that also  treat chronic pain (elavil, neurontin come to mind).
I feel like it is a part time job just taking care of myself,- always going to some sort of doctor. I also tried acupuncture- which some people find relief from headaches if they find the right chinese acupuncturist.
I'm rambling a bit, but just hang in there and give lots of hugs. It is an inner hell that he's experiencing, but he has to want to seek treatment to feel better. Does he work full time, is there insurance issues?

You and Dusty are in my prayers. It is a hard road- hang in there.

I get stuff from the ANA, and ATA, because I want to know when the cure for tinnitus comes!

Okay enough rambling.... I feel better anyway!
Maureen

[moe]

Hi  Dusty's wife,
There is a support group meeting in Jacksonville-don't know  how far you are, or if you and Dusty are even interested, but food for thought:

FLORIDA - Jacksonville
Date:    Saturday, June 26, 2010
Time:    1:00 pm
Location:    Mandarin United Methodist Church
Room 303
11270 San Jose Boulevard (State Road 13)
Jacksonville, FL  32223
Directions:    The church is 3/4 mile south of I-295 on san Jose Boulevard.
Topic:    Caring & Sharing
RSVP:    Joan Vanderbilt at 904-287-8132 or joanvanderbilt@gmail.com
Johnny Diaz at 904-284-6192 or johnny.diaz@yahoo.com
More Info:    Family members, caregivers, friends and interested persons are encouraged to attend.

Maureen
     

[Dusty]

OK.  Now that my wife has vented her frustrations I guess it is my turn.  I could not make it day to day without my wife Tracy.  As hard as it is to understand my situation she is always positive and supportive.  I think everyone else wonders why I have 'issues' when the tumor is gone! 
To expand a little on Tracy's emotional cry for help on this forum let me say I 'was better'  6 months out from my March 2009 surgery.  When my employer decided to demote me due to 'too much sick leave' I think I lost all faith in the people I thought I knew.  Even the coworkers I considered friends completely stopped communication.  This includes spouses of coworkers who had become friends of my wife.  We have been through hell as a family and now have lost our home.  Replaceable but not forgetable.  At least not right now.  As for my doctors they have all been helpful in their own way but I ask myself constantly why the patient has to coordinate with so many doctors.  How am I to know what I 'need' to manage sever tinnitus, daily headaches, dizziness, depression, etc......  The medical profession is too much about getting you in and out I don't know why we need them at all.  Let me deal directly with the pharmacist and I will eventually find something that will ease the misery.  Until then no sleep, headaches, jet engines in my head, etc......  I have a lot on my mind but I will stop here.  Just want everyone who has read and responded to my wife to know that we are fine, it's everyone around us that is truly crazy!

[saralynn143]

When my employer decided to demote me due to 'too much sick leave' I think I lost all faith in the people I thought I knew. 

Dusty, I'm very sorry for all you have gone through, and continue to go through. This statement really disturbs me. Did you take any more sick leave than you had earned? Had you received any warnings about your performance?

That just does not sound right. Have you considered speaking with a labor law attorney?

Sara

[Dusty]

Sara,

Thank you for your concerns.  As for the job issue it is just another example how people can't or won't try to understand an invisible handicap or medical condition.  I was well aware of where this was going but my health was the primary concern at the time.  I was sitting with 2000 hours of sick leave so that was never an issue.  In the position I was in I was and technically still am in an 'at will' position subject to termination at any time for no cause. The bottom line is that I was too much a people person and expected the same from my superiors.  Life goes on and health is more important to me than any job.  As long as my wife Tracy is still here then everyone outside my direct family, and  fellow ANAers, nobody else matters much to me.  Thank you again. 

To those with personal emails you will hear from my wife Tracy when our internet connection is back up.  Using a cell phone to make this entry so spelling may be questionable.

Dusty

[moe]

Dusty,
I am so sorry to hear of your bad turn of events in your work. Just sickens me. As if all those post AN symptoms aren't enough, your professional and personal/financial life are suffering too from this
"gift that keeps on giving."

All those suggestions I made are great, but you need insurance, a doctor who cares, $$$$$$$$$, etc & it may not be feasible. The only thing I can recommend is the support group in Jacksonville. You may meet up with some people who can empathize.

Tracy sounds wonderful and you are blessed to have her. Hold on to her!
Hang tough, like I'm sure you are doing. Life sometimes is just NOT fair. Our lives are forever changed with this AN, in some degree.  And you are right, the "hidden disability" that we have is real.
There was another post about a book re: hidden disability. I'll forward the post if I can find it.
Maureen

[moe]

Here is a clip from Phyl on the book. That reminds me that I would like to read it too. My tinnitus/deafness/out of sorts, etc are truly hidden.

I know I've mentioned it a while back, in passing, but I'm going to suggest a book....

Living Well With a Hidden Disability: Transcending Doubt and Shame and Reclaiming Your Life (Paperback)
by Stacy Taylor

http://www.amazon.com/gp/product/1572241322/ref=cm_rdp_product

My sister bought me this book many years ago when I first took ill (non-AN) and it really helped me to understand  trying to deal with the issues when others don't understand when I complain about not feeling well.. .and thoughts as to how to overcome. It may be worth a peek.

Hang in there. Hugglez to you all!
Phyl

[Lizard]

Here is a clip from Phyl on the book. That reminds me that I would like to read it too. My tinnitus/deafness/out of sorts, etc are truly hidden.

I know I've mentioned it a while back, in passing, but I'm going to suggest a book....

Living Well With a Hidden Disability: Transcending Doubt and Shame and Reclaiming Your Life (Paperback)
by Stacy Taylor

http://www.amazon.com/gp/product/1572241322/ref=cm_rdp_product

My sister bought me this book many years ago when I first took ill (non-AN) and it really helped me to understand  trying to deal with the issues when others don't understand when I complain about not feeling well.. .and thoughts as to how to overcome. It may be worth a peek.

Hang in there. Hugglez to you all!
Phyl

GREAT BOOK!!!!  Written by someone who also has a hidden disability and I know its probably hard to read with the headaches, but its not too intensive and totally worth it if you can manage.

Also I completely empathize with you and I too have lost friends through this process, but when things get rough you know who your real friends are.  I know now that I am better off without the one sided relationships in my life.  I'm sorry too that you lost your home and I understand how much of a financial strain the surgery and subsequent therapies, Dr visits and such can be.
Hang in there and as long as you have eachother you are rich and enriched in other ways,
Liz

[yardtick]

Dusty,

I too experienced many unpleasantries from my employer and fellow employees during my 19 month work period after I had surgery.  I had a very nasty review and didn't receive a raise because of my time off for Dr appointments and killer headaches.  I too was a very friendly people person and it warms my heart to know that many of my clients cared more about my health than my employer and coworkers.  I have been off on disability since April 2008.   

My husband and four grown sons have been wonderful, but at times they really do not get what I go through.  I'm grateful for my family and their support, unfortunately at times I'm rather witchy because of constant headaches and facial pain so I do not express my true feelings often enough.  I read the forum basically everyday but do not post often unless it is a topic I feel strongly about.  I'm a bleeding heart and I feel for all the "newbies" and all the chronic pain suffering folks like myself.  This forum has helped me gain knowledge and has been a comfort knowing I'm not alone in this journey.

I hope you, your wife and family all the best.  As Phyl has told me a million times "inch by inch, day by day" words all of us need to live by. 

Wishing you peace,
Anne Marie