Quality of Life

[nftwoed]

Hi;
   Would have to say to me, having chronic oscillopsia ( sensation of motion with bouncing ), and being deaf has ruined a life compared to the active life I once lived. Even after one op.
   Seems I just don't care to care much about myself and follow up on appts. anymore. I've grown tired of and distrustful of Drs.
   Sorry to express my living just an inch above depression anymore. So many subscribed here are so very hopeful and I guess have reason to be.
   The symptoms are just so socially isolating, so, YouTube is nice tonight. I just open two browsers and let it play for hours hearing melody, but not understanding words. Guess that's more than many with NF-2.
   AN and NF-2, is it not a death of sorts? Life is robbed from life. Seldom do things appertain to complete normalcy.
   Again; Sorry for venting my sadness this evening ...

[Alison]

Hi nftwoed,
sorry to hear you are feeling so down. I understand how you feel, believe me. Sometimes I really wonder if I'll ever have a semblance of my normal life before the AN, such as being able to walk to the shops on my own, or wake up without the roar of tinnitus and feeling like half my head is throbbing. Then there is the worry that a lack of exercise through being unable to do normal activities, will aggravate other health conditions. It's a cycle of worry that can leave you feeling depressed.

I wonder if the docs got my treatment right! But all we can do is hope, what else is there? Please keep up your apts and look after yourself. You can always post on here for support and to vent your feelings. You are not alone.

Hope you feel more positive soon. Keep posting.

Alisonx

[mrmel]

Well it is unfortunate how most of us feel after someone saws a hole through our heads. I can relate to everyone on here. Life does go on though unfortunately it will never be the same as it was, but that goes for many major illnesses. For me i have never had the same energy level, cognitively i have never been the same and i lost my marriage as a result also. I had to watch my little kids grow up from a distance. It just changes who we are and the surgeons never agree that it has anything to do with the acoustic neuroma, but we all know that it does because we all experience the same things. I guess we have to take some comfort in the fact we are alive, can walk and work, even though i know for some people they cannot work. Depression is a part of it too, and zest for life, it is hard but we must keep going.
                            mr mel

[nftwoed]

Hi;
   Another day, and another trip to Mayo. I should have known better than to ignore the yeast infection in my mouth and throat for 2 1/2 yrs. Candida can get quite invasive! The tongue swab is clear but now they will scope ( uck! ) the throat for either active fungus or damage to the mucous membranes from the lesions and their long lasting Tx with fluconazile. Then, there is "die off" where toxins pass through the body and one is just as sick, or sicker.
   Mel; When I was Dx'd NF-2 in 2000, my wife left just a couple months later. I'm sorry to read that about your children. I hope you have a relationship with them now. Not sure your age, but I became almost immediately unable to multitask upon the 2nd tumor esp. I can lose something or forget ( short term memory loss ) so easily! Trip, and stumble around ...
   Yes; Everything is harder to include exercise, and walking straight as in a shop, Alison. Re, your tinnitus and head throbbing, I guess everyone describes or tolerates a thing differently. How long ago was your Tx? The throbbing may relent some. I found tinnitus forever changing and have gotten used to it from both ears.
   There was a discussion held once at "AN World" which consisted of really most of the originals of this group, the ANA email "List serv". We sort of decided very few get through their experience w/o something life altering.
   Well; I'll try to stay positive. Can't help a new person much with such negative thoughts. Last night was particularly bad for some reason

[Chances3]

Hi nftwoed,

I was running 5k races before my surgery, today, I walk a few miles per day.  I'm 3 years post op, and the world does bounce around for me.  Anyway, I have my own issues, I will not get into them here.  I just wanted to let you know that being able to vent is what makes this place so special, you can let it out to people who understand.  I get sick of people who tell me how good I look.  Well, I look good, but man you have no clue what's going on inside of me.  I also get angry with my Drs., but I feel they didn't do anything wrong, I'm just one of them with an abnormal recovery.

If you go back to read some of my earlier posts, I wrote how I was struggling when walking to work, and I would pass this guy who was almost cripple from polio, struggling to walk into his office building.  It put things in perspective.

How many years has it been since your operation ?  I'm three years, and I have experienced a small amount of progress these past few months, which is encouraging.

Hang in there, and God Bless you.

[mrmel]

Thanks for all of the comments and support. My surgery was 16 years ago this past April. I have done exceptionally well in many ways, but the lack of energy and depression remain life altering. And the cognitive issues are difficult, i will never be the same. I was a Man that could do anything, i was unstoppable. Today,every day i am tired and depressed and have been since the surgery, my self esteem is very low and maintaining relationships are difficult also, because people do not understand what i am going through. I still have a house and take care of that and keep going, but the Man with the high energy, great sex drive, and a zest to take on the world is gone and i have to accept that change, it just angers me that the surgeons do not believe that our symptoms are related to the surgery and the tumors. My surgery was 13.5 hours long and was translabrynth, a very difficult recovery initially.

[Raven]

nftwoed,

I know what the motion bounce is like, I have it everyday, some days are really bad, some days it's hardly noticable. I was very depressed a year or so after my surgeries, really didnt' want to continue living like this. I told my Dr. about it and he had a little sit down with me. He told me the way I feel is my new normal and wouldn't get any better. I couldn't do anything about my "new normal" but I could do something about feeling sorry for myself, so I got out of that funk simply by being thankful for what I still have instead of what I used to have.

 I still think about the other AN on occasion and that one day I might be deaf in both ears, but until that happens I'm going to enjoy the time I have left

[nftwoed]

Hello;

   Thanks for sharing, Raven and Chances 3. A new normal, eh? Well, yesterday, I saw pts. much worse off than I. Something pretty normal at Mayo and the other pts. "normal".
   I did notice something about the Otolargynologist; Of two questions I asked him, one, he didn't know the answer ( I did ), and the other question, he gave the wrong answer.
   This second AN was misdiagnosed for 6 years. It's likely they could have saved my hearing. An ENT thought he was better at interpreting the MRI results than the Radiologist.
   It leaves me with a very large question: "Who's better at interpreting MRI, a Radiologist, or ENT? I would hazard a guess the Radiologist spends more study hours with this in med school than the ENT.
   Guess I'm not cool on ENTs working with AN pts.
   Also; Since nothing was found yesterday, and I've still the 'foreign body' feeling in my throat, I don't feel Doc ENT went far enough down with the endoscope, but, I didn't sense he was the type to lightly receive a pts. opinion.

[Gloria Nailor]

I am sorry to see you are so discouraged.  I was just talking with my husband this morning about my mood.  He said I finally seem myself! It is 27 months after my surgery.  I told him That for a long time I did not feel like I did before my surgery, I did not feel like a complete person and I feared others would see me differently also.  I know your physical symptoms are causing you distress, but I think emotions play a part too.  I hope you see a therapist to help you through these difficult times, mine helped my family and I immensely. I finally have regained my confidence in who I am and accepted all that has happened to me.  I hope your symptoms resolve and you find peace with all that has happened to you.  Be well!

[Kathleen_Mc]

Like many of you have expressed AN or NFII IS life altering, I myself had great difficulties in the early years.....what helped you may ask.....I got referred to a doctor specializing in post traumatic stress disorder and had cognitive treatment as well as got put on antidepressants. Although things are not "prefect" and I know I will never be the "same" I am the best post AN me I can be. I urge anyone who is suffering from depression to seek treatment, it can make a huge difference.
Kathleen

[Jim Scott]

Like many of you have expressed AN or NFII IS life altering, I myself had great difficulties in the early years.....what helped you may ask.....I got referred to a doctor specializing in post traumatic stress disorder and had cognitive treatment as well as got put on antidepressants. Although things are not "prefect" and I know I will never be the "same" I am the best post AN me I can be. I urge anyone who is suffering from depression to seek treatment, it can make a huge difference.

Thank you, Kathleen, for sharing that positive and realistic perspective.

Jim

[Gloria Nailor]

I am so sorry to hear you feel this way, but certainly remember having similar emotions and still do. It's been 28 months since my diagnosis and I still find myself saying "why me?" It truly stinks!  I will even confess that I become very envious and angry at times that some people go through this and come out of it with no side effects, why them and not me! For some reason, God wants me on this journey and my family has been dragged into my journey also.  I can honestly say good things have come of it though. I have a wonderful family who were so supportive of me and still are.  My son was 18 at the time of my surgery, we had a great relationship, but he rarely told me he loved me, I think he felt I just knew. But now, he always tells me he loves me and gives me kisses, it made him realize how special life is and what we take for granted. I guess I believe that's what my lesson has been in all of this, to never take each other or life for granted. Being deaf and having a partially paralyzed face are not what I expected in my life, but I have learned to deal with it.  I had a long emotional recovery, took me over two years to feel myself again. Everyone has to work through it at their own pace.  I would talk to my husband a lot about how I felt and he was awesome giving me his insight, even if I didn't like what I heard.  My therapist and my anti-depression meds certainly helped too.  Hang in there, we've been dealt a crappy deal but you can do this, you have lots to fight for, don't give in!!! I hope you soon find peace with what has happened to you, Be well!