Feeling like giving up

[HJY]

Hi All,

I'm hoping I can vent safely here without people thinking I'm having a pity party! I'm one year post op and have had an eventful recovery thanks to some scar tissue that has further irritated the nerves. Post op I had excellent preserved hearing - its now deteriorated and they've recommended a hearing aid. My balance was doing well but I've had two major setbacks where I've literally had to start at almost post op level again. Post op my facial nerve was stretched and I was a HB 6. I had great recovery initially but now still have an asymmetrical smile. Synkinesis was a problem but is better now. I have a very marked line (nasolabial) fold that seems to amplify when I try to smile. My husband says face to face I look better than what seems to come out in photos. My physio and the Drs don't seem to know what this scar tissue will do so I feel 'cut loose' with vague instructions to keep up the massage and 'wait'. Maybe it's the fact that it's the holidays and I had surgery just prior to Christmas last year, I just feel so down and so despairing that I will ever improve. I think I just mostly hate the way I look. I had a baby only 6 weeks before my surgery and I just wish that one year on I could have a photo with him that I like.
Is there anything else I could be doing? Would some of you be willing to share what your PT's were doing with you at this stage of recovery? I'm not prepared to just disappear for 6 months and do nothing like he suggested! I have even considered flying to the US if it would mean I could see someone to give me ongoing therapy.

I'd so appreciate hearing your experiences.

Thanks!
Heather

[leapyrtwins]

Heather -

I didn't face the same issues you are facing post op, but I think it's normal for AN patients to feel like giving up at some point in their recovery.  AN Journeys are tough, no matter what the outcome may be.

You've been through a lot and you're still healing.  Give yourself time.

Keep the faith,

Jan

[Chances3]

Hi Heather,

You're in the right place, so please -vent vent vent.  You've been through a lot, and recovery seems glacial,
and you want to be your old self right now !  Many of us know the feelings, anger, despair, etc.  I hope other members post with some words of encouragement as well, you need it.  I'm 14 months post op, and I'm very far from normal.  I'm told by my doctors and our ANA community that there can be further recovery.  If you think another medical team can help you, than go for it because you have nothing to lose at this time.  Stay positive, don't look back but look forward and make the most of what you have.  I have you on my prayer list, I am a person of faith and I believe in the power of prayer.

God Bless you Heather, and stay strong my dear.

[Brewers7]

Hi Heather,

Just wanted you to know that I had similar complications.  The surgeon explained to me that because of the complications, my recovery was delayed.  I am now 3 years post op and life is so much better.  (I did not have any facial movement until about 18 months post op and now HB 3.)  Because you are so much younger than me, I would expect you to continue to see improvements.  In the meantime, continue to vent as needed.  Like Chances3, I will say a prayer for you today. 

Susan

[PaulW]

Hi Heather,
Hang in there.
I have just sent you a personal message with the contact details of the Support Group in Western Australia.
I have also sent my contact details if you need to talk to someone.
I live in South Australia.

[Jim Scott]

Greetings, Heather ~

I'm so sorry to learn of your despondent state of mind due to your s-l-o-w recovery and various set-backs.  Your emotions are perfectly normal and, as I always state: if a recovering AN patient struggling with issues cannot vent here, then where?  We get it.  Even folks like me that did not experience the things you're dealing with understand your frustration and the insidious feelings of despair that can generate.  Although I cannot offer personal experience that mirrors yours, I can tell you that one thing I've learned from reading literally thousands of posts on these AN forums, is that, whatever your current AN-related issue, be it facial, balance or just 'wonky head', it will, inevitably, improve.  Patience is often a hard trait to master but for the recovering AN patient dealing with complications, it is a very valuable attribute. 

I join the others on this thread in including you in prayer and of course, personally hoping that you can surmount these problems and regain the facial normalcy you rightly desire.   

Jim   

[Kathleen_Mc]

Heather: yes set backs can occur and it's frustrating and depressing......you will get through it
I notice you feel like this right around your anniversary of the surgery, I myself used to always have a period of depression etc around the anniversary of my surgery in the "early years" and this has gotten better each year, in fact sometimes I totally forget it's "the day"(whereas in the early days I would have flash backs and nightmares etc).
The tumor did not grow overnight/over a week/over a month....it took likely years to develop before diagnosis......recovery will take a period of time and with it comes the ups and downs of recovery.......
I find on my really "bad days" I take it easy (as able of course) and focus my mind on my children as they are the reason to get through "the bad days" as positive as possible.
Kathleen

[Syl]

Heather:

It's OK to vent.

I'm 3.5 years post-op. It was only about 6 months ago that I realized how long our recovery can be. I had begun to accept the possibility that it wasn't going to get better for me.

It does get better.

My biggest issues have been the wonki-head/dizziness/lightheadedness & headaches.

I have gone from almost daily severe headaches to less frequent mild headaches. I've had a couple of those mild ones this week, but I often go about 2 wks without headaches. The headache I had this morning was a bad one, but I only get those every few months now.

As for the wonki-head/dizziness/lightheadedness...It's not present all the time anymore. I used to have this all the time. My head always felt like it was detached from my body. It also felt heavy & my mind never felt clear.

Walking & turning my head to the side while crossing the street or while shopping, for example, made me dizzy & posed a challenge for my balance. Now, I can do all this without the dizziness. I still get a wonki-head after a very long & challenging day, but most of the time my head feels clear & attached to my body.

I don't know if time alone is what heals or if my proactive efforts to deal with these issues have actually helped. But I can say that it does get so much better.

Hang in there,

Syl

[Mei Mei]

Catherine on the Forum here is in Melbourne and I put her in touch with an Australian PT who found her help in Melbourne.    You can Private Message me and she can put you in touch with Andrew here who has many wonderful contacts in Australia.   You need a lot of support and I think Andrew can find you the right combination of medical people to support you.    Please stay in touch with us and don't give up.    It's a long hard road we walk but we have to keep on marching.   Every day is a new day and take the problems one day at a time with small goals or you will surely get despondent as I do.     I am now in a better direction and found Tai Chi and Qi Gong at our Community Center with a wonderful teacher.
Let me see what I can find out about that in Australia.   The teacher pointed me out tonight in our first class in the new semester.   He said when I first started the class last Fall with them, I was all over the place with my balance.   He was so proud to say how far I've come with my balance.    It's true but it definitely is one day at a time and tiny baby steps.

Keep writing to us every day....Hugs to you!  We are with you!

Mei Mei