Depression

[hendi51]

Does anyone suffer from depression? My poor husband is really feeling down. This has been going on for about 3 months. We still don't know what is going to be done with his tumor. It is small but causeing big problems. We saw the Neurosurgeon Nov. 20 and are waiting on another MRI appointment. The ENT did put him on 12.5 mg Zoloft daily but I don't really think that has helped. He feels like doing absolutely nothing and that is so far from what he has always done. He told me today that he feels like he is letting me down by not wanting to do anything. I tried tp reassure him that is not the case but I don't think he believes it. Does this sound like something some of you have gone through? Thanks for listening.

[berniejfnp]

Hi Hendi51,

Being a newbie on this forum I still await intervention for my AN as well.  My understanding of medical ailments is that anytime our nature is challenged, the body does what it needs to to endure and conquer.  Many times this means toning down on recreation and other joys that one normally finds in day to day living.  This toning down is depression.  It is an insidious invader but natures mechanism to perserve.  Treating depression with Zoloft is a standard of care that many follow.  It does take anywhere from 4-6 weeks to reach therapeutic levels where one begins to feel better.  The chemicals in our brain need to be assisted while our nature endures the medical ailment.  Your husband may benefit from seeking a qualified therapist to unload the thoughts that drift through his day.  The combination of therapy and drug treatment together are very helpful until things stabilize.  Hopefully this is helpful, continue being supportive to your husband.  Things will turn around, it does take time and patience and your reassurance will empower his strength to await the improvement.

Berniejfnp

[Jim Scott]

Hi, hendi51:

I can empathize with your husband's depression because I went through something similar before my AN diagnosis and subsequent (successful) surgery and radiation. 

On hindsight, I wasn't so much 'depressed' as lethargic.  I lost interest in reading, TV and the internet.  I had little energy.  I stayed in the house, in a bathrobe almost all the time, something I usually never do.  My wife was alarmed at this sudden onset of lethargy and my inability to eat more than tiny amounts (because everything tasted like cardboard, to me and I simply had no appetite).  I lost over 30 (unneeded) pounds in six months and was at the point where more weight loss would be unhealthy...but I still didn't want to eat or do much of anything.  I didn't care what was on TV or in my e-mail box, also not my normal attitude. 

Finally, my wife became alarmed enough to make an appointment with our family doctor.  I didn't object.  Actually, I didn't really care, much.  He listened to my symptoms and ordered a blood test, looking for a thyroid problem.  When that proved a dead-end, he immediately ordered an MRI, with contrast.  That showed my 4.5 cm AN.  The rest is 'history' (see my signature).

I understand both your husband's lethargy and depression-like behavior as well as your concern for him, which is admirable.  While a diagnosis of an acoustic neuroma tumor often manifests a degree of sadness and depression in patients, it isn't permanent.  The fear of post-surgical complications, the often-new sense of vulnerability from learning you have a possibly life-altering medical situation to deal with, often later in life, at that (I was 63) and the sense of being in a very negative situation all play a part in depressing some AN patients.

Upon diagnosis, my reaction was to find out what the heck an 'acoustic neuroma' was.  I found this site (and others) and quickly educated myself on the condition and the approaches to deal with it.  Radiation looked like a good idea (non-invasive) until I found out my tumor was too large and that surgery (very invasive) was mandatory.  I wasn't too thrilled by that idea (surgery) but I hasten to add that I was fortunate to find a caring, compassionate, very competent, experienced neurosurgeon who took excellent care of me and whom I praise to this day. 

From the day of my diagnosis, I maintained the attitude that I was stuck with this AN thing and had to have it out, whether I liked the idea or not (I didn't).  I hadn't been a hospital patient since I was 9 years old, some 54 years earlier, when they were still using leeches to cure some medical problems.  Just kidding!     So, I gave into the reality of the situation and forged ahead, determined to 'get back', as my drastic weight loss and subsequent lethargy had severely and negatively impacted my once-pleasurable life.  I wanted this stupid AN thing out, dead and gone!   I was determined to be the guy I once was, not the sleepy, listless and disinterested guy I had become, and I decided to do whatever I had to do to get back where I wanted to be. 

Long story short: I did.  Now, some 18 months after my retrosigmoid-approach surgery, I'm fine.  My stamina is back, all of my former interests are back (I check my e-mail and PM's every day) and my AN is in necrosis.  As my signature says: 'Life is Good'.    Now, I relate all this partly for your benefit.  I was depressed a bit before my diagnosis and surgery and I was a crabby bore for some time afterward, according to my wife, who should know.  I hated being 'sick' and basically unable to do the things I felt I 'should' be doing, just as your husband feels, now.  This is not all that unusual.  Guys tend to want to 'fix' things and when they can't, they get bummed out about it, as your husband is and as I and many other normally self-sufficient guys have before him.  I hesitate at using this cliché, but I think I can confidently state to you that 'this too shall pass'.

Try to be understanding and supportive.  My wife was, even through my crabby post-operative period and it helped considerably in more ways than you can imagine.  Your husband is likely a bit scared and even angry right now.  He will not remain this way but if you can help him through this period, it will not only be an act of love but of compassion. 

I wish you both the best in the days and weeks to come.  Please try to stay connected to this forum.  It's filled with people eager to help in whatever they can.  They understand.  They care.  We all do.

Jim

.   

[OTO]

hendi51
When I was first diagonosed and trying to decide what treatment, I definitely had the blues.  It never got to full blown depression.  I had to force myself to get out of the house and do something active.   One thing that helped, I use to go to my sister's house and carry here 4-month old baby.   Somehow seeing that little baby gave me strength.

One thing, I stopped reading everything on this forum, and tried to only post questions and read the answers.   If you read everything on this forum... it can scare you too much...

OTO

[er]

I am wondering if it is as much of depression as it is fatique alot.  I do know I get depressed that I am not able to do the things that I use to. I have always been hyper. But because of the conversations of this forum lets me know I am not the only one , that I am very lucky because I then see myself better off than alot of these wonderful people. And the friends that have knowledge of the brain  let me know that I am ok I just need to rest and take things slower because my brain is telling me I need to rest.
It makes sence.
Hope things go well, I hope he is able to read these notes & join us in all our journeys.
eve

[hendi51]

Thanks for all your kind words. I read them to Lynn and he says thanks. You may be right about the lethargy or fatique. I'm going to talk to his doctor next week.

[goinbatty]

My heart truly goes out to you.  After the shock of being diagnosed with a tumor, I went about researching treatment options and thank goodness, ran across this forum along with the CK support site also which helped greatly.  I consulted with specialists in several different states.  I seemed to be going about it all in stride until the repeat MRI showed growth.  Also, around that time we had two family deaths.  Several other life stressor also.  I really got down there for awhile.  AN symptoms were actually mild but I internalized all of this stress to the point that my brain seemed exhausted and I started having trouble remembering things.  Of course that could be attributed to hormones/age, etc.  Since making the decision for CK, I felt a great sense of relief.  At least that part is over with.  I should be going for treatment soon.  I truly look forward to getting that over with.  Hopefully, there will be few side effects but even still, I will have finally done something about this.  I'm just trying to mentally psych myself into not worrying about possible side effects.  Wish me luck on that one.  Being a nurse in some ways has made this tougher.  But I can honestly say that this has given me more empathy for my patients.  One of my biggest concerns is how this will affect my family moreso than how it will affect me.  But keeping a positive outlook that all will turn out ok. 
Please keep us all updated.  I will certainly be thinking about you both and hope all turns out well. 
Sandra

[satman]

I was fortunate in the sense that I did'nt have to wait for the surgery because I was rushed in.
I would say try to understand his emotions and comfort/pamper him.
He is going to need you more than you can imagine,it will be you that pulls him through.
My depression still comes and goes.
with facial palsy it really gets tough some time,but just assure him that many people have been down the road he is on,but rest assured,things will be ok.He will come out a stronger person mentally.

[Captain Deb]

Hendi and Lynn,

For me, the antidote to depression is any kind of positive activity. Taking a walk, cleaning up the yard, gardening (hard to do in the winter, I know) cooking, going to the gym, doing a hobby or craft, calling a friend--just ANYTHING that is contributory to my own or someone else's life. I go into phases where all I can do is feel sorry for my self, and this is how I snap out of it--positive action, even if I have to drag my butt off the couch to do it! And sometimes it is the LAST thing on earth I want to do.  Depressed people lose interest in everything but themselves and their predicament and if that interest can somehow be refocused, it really helps. Believe me I have been there, done that, and  bought the T-shirt!  I've had 5 years of chronic headaches that 95% of most AN patients don't end up with. 

 Things will lighten up once Lynn's treatment plan has been made, even if it is watch-and-wait. I met a fellow at the Symposium who was a very happy watch-and-wait-er of 9 years!

This forum itself is one of the antidotes to my depression. I like to get on the Good Morning thread and post funny stuff and read other peoples funny stuff they post there.  Surrounding myself with other people in the same boat keeps me afloat!

Capt Deb

[4cm in Pacific Northwest]

I really do not think I could put a response any more eloquently and sensitively as Jim Scott has responded above (HUGS Jim  ). He answered a post to me to just before I decided to have my surgery… and seemed to put my mind at ease on which type of surgery I could have and reiterated that I did have options.

I too was rather down-and-out before I received my accurate diagnoses of an AN tumor. I had not been sleeping well and I new something was not physically normal with me (fatigue, becoming accident prone by 3 pm etc, dropping supper dishes…)    and finding a doctor who would bark up the right tree was a real challenge for me. I was not “clinically depressedâ€? but I was "clinically frustrated" (as I was trying to get help from  knowledgeable    physicians – to which too many had barked up the wrong tree). My not sleeping well magnified my feelings. (My tumor was pressing against the brain stem – the brain stem controls sleep patterns....BTW post surgery my sleep disorder improved tenfold -as did my mood…)

It is important that if someone is clinically depressed that help is sought.
http://en.wikipedia.org/wiki/Clinical_depression


Oto is very right in sharing with you
“One thing, I stopped reading everything on this forum, and tried to only post questions and read the answers�

Do not read everything on the forum- it will be overwhelming and scary. There are many successful stories on the treatment of AN tumors. Often those people with success put their AN stories behind them and ‘keep moving forward’ with their lives – never to be heard from again (here on the forum.) Often they have a very good and caring support network that helps them through. However not all have that support but do very much find it here on this ANA forum. It is very important to start building up a support network now (pre-treatment) for you both. It sounds like your husband has a very supportive and caring wife    who is willing to speak up on his behalf. (Be sure to get support for the caregiver too- I often forget how hard all this has been on my husband …these past few months).

Try to get your husband out and walk briskly in fresh air for at least 20 minutes a day … this can be good for the body, mind and soul. It will also help build up health and fitness ‘prior’ to treatment. The initial health and fitness of a patient can have a bearing on the success of their treatment recovery.
By him being open with you…
(Quoting you)
 Ã¢â‚¬Å“He told me today that he feels like he is letting me down by not wanting to do anythingâ€?
…this is a positive sign as he is still expressing himself to someone he trusts.


Quoting you
“ We still don't know what is going to be done with his tumor .’

I am detecting that there is a sense of “powerlessness� here. One way to empower you both is to read up and be knowledgeable about Acoustic Neuroma. The ANA puts out a little booklet that 2 separate surgeons I interviewed gave me (as they are members of the ANA – not all physicians are. Here is a list of surgeon who support the ANA http://www.anausa.org/physician_list.html )


Do you have a copy of this?
Acoustic Neuroma Basic Overview (AN1)
General information on acoustic neuroma, including treatment options and common symptoms.

Also available here…If your doctor did not give you a copy at the time he/she explained your husband’s diagnosis.
https://secure.baxinternet.com/~anausa/for_sale.html


 Last May I had never even heard of an “acousticâ€? neuroma and really stumbled to even pronounce words like: “vestibular schwannomaâ€?, “sub-occipitalâ€?, “Retrosigmoidâ€?, "Otolaryngology" … by August these were all a regular part of my vocabulary. I also interviewed more than one surgeon and learned a little more from each of their interviews. (It also became apparent that some were more capable than others.) A couple were very good teachers and were willing to part with information. They knew the balance of not talking over my head but also not talking down to me. The surgeon I finally chose is a remarkable teacher and very respectful to all that he addresses. He has been a good advocate for me, all along, and that has helped my spirits too.

Are you and your husband comfortable with his doctor- or do you perhaps need to interview another one?

Remember that acoustic neuromas are “typically� not fast growing and you both DO have time to do some research and take the time to understand more about this medical problem your husband has.

Satman (he has been nicknamed “Super 8� and is a bit of a hero with his remarkable recovery story here) and I both had “atypical� cases. His was found at 8+cm after he experienced life threatening symptoms and went in for a MRI via emergency. Mine was 4 cm (I had been having symptoms for a while but was not getting accurate diagnoses from competent doctors.) Mine was located in a bad spot (pushing on the brain stem and partly closing ventricles- since resolved with the surgery.) I have come to learn that AN’s are like real estate- it all depends on “location, location, location� re treatment options.

You will find all sorts of various people here in the forum with experience as diverse as they are. Nevertheless many good and caring people here. Ole Captain Deb   has made us all laugh  more than a few times- she is quite the creative artist with a real knack for fun and silly images that go along inside jokes (i.e. AN Post Treatment) … Some outside readers (particularly those just trying to understand AN) who have not experienced AN treatment may think some of these are nuts – but those who are experienced can find that laughing at ourselves (and our AN symptoms suhc as balance issues simialr to drunkeness) to be therapeutic ( not to mentions sometimes wildly funny- as Deb can often be)

Here you will find supportive people wanting to help you. Welcome to the Forum!

4

P.S. Captain Deb
“Surrounding myself with other people in the same boat keeps me afloat!�
Great motto- I love it! 

[mindyandy]

Have your husband check out this website and make posts. Whenever I feel down and alone I always come here. Everybody here is great and very supportive. He does not have to feel alone....WE ARE HERE.....HUGS....

Mindy

[4cm in Pacific Northwest]

F & L,

I am thinking that the nystagmus could really be magnifiying this also (re balance and depression).

If walking is an issue perhaps trying a few walks with an eye patch on that eye. Make sure that he walks in daytime as nighttime may make balance issues worse.

I had nystagmus for a couple of weeks after my surgery and my balance was dreadful – however we noticed a difference when I wore an eye patch on that eye. My (post surgery) nystagmus was however short lived (thank goodness). I am still using an eye weight (to help with eye closure but this is improving too). If I do not have my double-side-sticky-taped eye weight on – I have issues (both in balance and thoughts) as having vision issues just magnifies things. Once we got control of my eye issues I was generally much happier. Have you consulted an ophthalmologist.

After AN treatment there are things that an ophthalmologist CAN do for nystagmus.

My ophthalmologist actually also made me feel better by just being so understanding of the eye issues and offering some good solutions (and referrals). My feelings of sadness seemed to improve once I got some help for my eye issues. (life seems brighter when you can see clearly  )

Having hearing loss, balance issues and eye problems simultaneously can be overwhelming… not to mention any other health issues that can be there hindering treatment.


Hugs from Oregon state to both of you.

4

[hendi51]

Thanks so much for all your thoughts especiaaly you 4. No we have not seen anyone about the nystagmus because we haven't thought of it. I will talk to Lynn and his doctors about that. It just seems like we are going in a big circle. The ENT told us at the last appointment with her that surgery had been ruled out because of Lynn's heart problems and he would be having GK but then when we saw the Neurosurgeon he has not ruled out surgery. We thought when we saw the Neurosurgeon we would be getting ready for the GK and this would soon be behind us. Not the case. We are now basically starting over. We don't want them to rush into anything but we do wish everyone was on the same page. It just seems like our brains are on overload. We will get this behind us and go forward. Thanks everyone.

[Captain Deb]

Hendi,
I checked your previous posts and saw that Lynn's tumor is quite small 7mmx5mm which makes him and excellent candidate for radiiosurgery. There are quite a few of us here that have had great outcomes with this. Have you checked into Cyberknife yet?

Capt Deb

[hendi51]

We have talked with ENT about Gamma Knife and thought the Neurosurgeon had agreed on that too but then we saw him that wasn't the case. His tumor is small but deep in IAC and causing all kinds of problems. Weird I know. He has lost 82% of useable hearing in left ear, staggers like a drunk person, everything he sees all the time bounces up and down and moves side to side. He can no longer drive at night at all and drives very little in the day. Too much movement. He is either depressed or has fatigue or lethargy. Something keeping him from doing all the things he has loved for nearly 30 years. We do upholstery out of our house and he no longer has the energy or the will to work more than an hour a day, if that. Hopefully soon we will be on the right track. Thanks for all your help.