New Dx, Waiting Surgery

[tcrnko]

I was diagnosed with AN to my left ear on 8/23.  Have seen my drs and am comfortable with them.
I have read alot of blogs but have some general confusion on what others have experienced.
My AN was identified because I had a hearing loss.  My nerve function is still good but the tinnitis and vertigo drive me nuts.
What I am wondering more about is the loss of concentration, feelings of detachment, depression, decrease in appitite.  Are these because of the neuroma or the diagnosis of neuroma?
Have others experienced this and to what extent?  This is really difficult to discribe to my wife.

As a background, I am a emergency department nurse administrator.  Worked as a neuroscience nurse at Sutter General, Sacramento from 85 to 87 and a neurosurgical intensive care nurse at Loma Linda University Medical Center from 89 to 95.  Have been on the nursing end caring for patients with this problem but have not been a patient before.  My wife says I am a bad patient and should apologize to the nursing staff before I get there.

[han nah]

Hi
What you have written sums me up to the tee!

I was diagnosed with a 2cm AN a few weeks back (I'm 24 years old). I originally went to my GP complaining of numbness in the right hand side of my face. But major complaint to the GP was my complete lack of concentration and mental exhaustion. I found it very hard to even think at work, I found that I was forgetting simple tasks that I knew like the back of my hand. I find it hard to comprehend simple procedures at work. Even in social settings I did not have the energy to join in on the conversation, I just wanted to close my eyes and just be somewhere I did not have to concentrate or think. The best way I would describe this I feeling is like I'm in a constant daze.

I really relate to the decrease in apetite I have lost 3kgs over the past few weeks. However I can't say that I can relate to the depression and feelings of detachment, although as I mentioned I feel that I can't be 'stuffed' to join in on conversations. Before I was diagnosed friends and family kept asking if I was OK because of my withdrawn behaviour.

My other symptoms are the numbness on the righthand side of my face, hearing loss, tinnitis and yes the vertigo is driving me nuts too!

I'm currently working part time at work now (in administration). As the concentration and metal exhaustion is getting to me.

This is my first time on this forum - you may want to ready my first post from today, it's titled 'please help'.
 

[Obita]

Hi tcrnko:


Welcome! 

From my experience your feelings/symptoms are from both the AN and the diagnosis.  Before diagnosis I just felt off, no other way to describe it......after I found out what was causing my symptoms my appetite was zip due to stress.

Unfortunately, it is impossible for anyone that does not have an AN to understand whats really going on inside our head.  There are so many nerves in there that can be compromised as the AN grows and the pressure it causes is indescribable.  You will find a few threads on here re:  "they just don't get it......."

I am post surgery 2 years and 5 months and doing just fine.  I cannot multi task as well as I could before the AN but it has not caused me any problems at work.

Good luck to you and if you have questions, post again or send and email.  Kathy

[debisda1]

Hi Tcrnko,
I was diagnosed a few weeks ago and until I read your message I was not aware that my feelings of depression and mental exhaustion could be linked to my AN.  For quite some time now I have felt "out of it" and forgetful.  My husband has mentioned to me several times that I am forgeting to do things and not focusing.  I have also had a decrease in appetite but have not lost any weight.  I don't really feel like being around anyone and since my diagnosis I have just wanted to curl up in bed.  My consult is in a week at the Univ. of Va. and they are leaning towards the Gamma Knife because my AN is 1 cm.  I have many questions for the doctor but I am glad I read your message.  Now I am aware that these symptoms could also be related.  Thanks for the info....      debsda1 

[Kathleen_Mc]

tcrnko: The things you express, the decreased concentration and depression, decreased appitite and feelings of detachment.....did you notice them before or after you diagnoses? Pre diagnoses I did not experience any of these nor between diagnoses and surgery but they did appear since surgery and continue to be present to some deree 16 years later. (there wasn't really time between diagnoses and surgery for me to notice if they did appear, I never moved out of "shock mode")
I am a nurse as well, I specialise in psych. These things could be both physical and emotional.....I was officially diagnosed with PTSD after my orginal surgery. It is hard to look at oneself as the sick one, to achknowledge the presenting symptoms but with time it gets easier.
 If it is surgery you will have I will forwarn you......it was my experience that no nurse likes to nurse a nurse! After my first surgery I got in the habit of saying outright to every nurse assigned to me "I am not going to judge the care you provide, I am sick and I need your help" (after my first surgery the nursing care I recieved once out of NICU was disgusting and I saw that coming....I told the admitting staff, when they saw who paid my insurance was another hospital, that I was a housekeeper.....they didn't buy it and I am sure it was plastered on my chart "RN"....I didn't talk about my health in words a house keeper would use I guess).
I have never felt that anyone, other than other AN patient's, "get it" when I try to explain things to them, my husband tries his best and comes the closest. Does your wife have a medical background as well?
Kathleen

[tcrnko]

To all who replied, thanks for the words.
Having others to discuss this with is a help.  My wife is a systems analyst, has worked around the medical world, and is fairly knowlegable, but is don't think she gets it.  I wrote her a note the other night as to why I am so grouchy.  When we discussed the note she told me that that is the way she feels daily.  (She suffers form depression).  I believe that she understands the depression, but not the detachment or loss of ability to concentrate.

I started noticing that I felt different, (detached with difficulty concentrating) about a year ago when I took my current job.  It took me forever to learn the names of my staff and I still am learning the systems that they function under.  The only way I am aware of the policies that we work with is that I undertook the task this year of updating and rewriting the policy manual.  I took me forever.

I have a scheduled surgery date of January 10.  I chose to put if off for many reasons that I won't go into now.  My surgeons were comfortable with that.  My little parasite is 18 x17 x 16 mm, but is is sitting on and compressing slightly my brainstem.  It is had for me to connect to the fact that someone is going to open my head and play with my brain.  so, in order to prepare for the day I am now walking 2-3 miles daily.  The better shape I am in, the faster I will heal.  I don't know if I could be out of work for more than a month because I am a workaholic.

For debisda1 and han nah, sorry, but welcome to the club.  For Kathleen Mc and Obita, thanks for the information. 

Having been a NeuroSurgical nurse and having worked with AN patients gives me a different perspective.   I have a nurse friend that came to work with me about 1 year ago.  She wasn't her smiley happy self and I asked her what was wrong.  She told me that her husband had been diagnosed with an AN.  My comment to her was "I'm sorry, but if you are going to have a brain tumor, the AN is the one you want.  It can be treated with a good success rate and fewer complications that the other options."  When I got my diagnosis, I called her to ask about her husband who had an extended time off work, but now back to work and doing well.  I told her my news.    She told me that if you're going to have a brain tumor, the AN is the one to have.  That it can be treated successfully.  I told her I remembered saying that to her, now I just had to convince myself.

Still workin' on that one...:!

[Battyp]

yes I've been told the same thing...this is the brain tumor to have if you had to have one..it's treatable and typically benign.  Funny before my diagnosis I felt the same way you do and at this point I'm post surgical and still do.  My brain stem was highly involved which I'm sure has something to do with it.  There are several nurses on here who have had their treatment and gone back to work.  My son didn't understand the issues I was having emotionally and physically so I took him to family counselling which helped tremendously.  Letting him be part of the doctors visits to hear the information presented helped him to better understand what I was going through.  It's tough on the patient and the family.  Sounds like you're doing the right things with the walking and getting prepared.  Hang tough! 

[tcrnko]

Thank you, I will.

One of the things I have found here is that I am not alone.  Support here is great.

When I found out that I had this little bubble of joy, it put me into a strange state of disassociation.  Because of my job, I have the ability to look at my medical record.  I saw the radiology report before my referring ENT did.  He called me about 2 hours later to tell me the bad news.  I told him I knew.  Then he told me he was referring all of my information to the specialist in San Diego.

That day I requested copies of my MRI.  I got them about 4 days later on CD.  I took them home, put the CD in my computer, opened the program and said "Oh f*&*". 

When I worked as a NeuroSurgical ICU Nurse, I got pretty good at reading CTs and MRIs.  Now my disassociation became associated with something.  I continue to open that CD often, then shake my head. (Then get dizzy and stop shaking my head).

Looking back at the last year, and reading the stories, questions, and responses on this site, I have put together alot of answers.  I was concerned about early alzheimer's because I couldn't concentrate well.  I was concerned as to why I had trouble with balance while rebuilding the inside of my boat, thinking that maybe I really was getting older.  ( I don't believe that for a minute)  I knew that somehow I was feeling different but couldn't figure out how or why.  The list goes on.....

I have found that many of you had the same type of problems.  Now I don't feel so strange.   And here I can vent, which at this point is probably some of the best therapy I can get. 

Having said all of that, I'd like to thank you all for your support.  I will keep reading, and writing.  I have a feeling that this forum will occupy much of my recuperation time in January.