One week 'til I'm rid of Lefty, that jerk.

[It is what it is]

How are you Jamie and Patti?

Karen

[Pajamas]

Hey guys,

I am pretty well considering I had brain surgery a week and a half ago.

I will say that this has been SO much harder than I thought it would be. The hospital stay was of course, icky, but coming home has been difficult.

I went in on a Wednesday, the 7th, and came home on Sunday evening the 11th. I was so dizzy in the hospital and could only look to the right, that I barely remember any of my nurses and doctors. (I NEVER vomited...still haven't. I was so expecting too!)

I am MUCH better healing at home and can't wait to have my staples removed on Monday the 19th.

Again, I am still VERY dizzy and off balance, have trouble with looking and turning to the left, and rest a lot. Yesterday I went down to the corner market with my mom and the car ride left me feeling pretty disoriented and discouraged. Clinging to the handles and sides of the car like a scared kitten. Obviously, there is no plan as I've only been out of the hospital for less than a week, but it's discouraging to think about getting back to work and school. It feels so impossible.

I do get better and better every day, I see it with little things like being able to shower alone, get a drink of water our of the fridge, etc.

I'm still in a  lot of head pain though and am still on pain killers. Weening as we speak. I know it's important not to stay on those too long.

HOW LONG shall I have to endure this dizzy, sick, off balance feeling?

Jamie

[It is what it is]

Thanks for giving us an update on how you are since your surgery. You actually sound like you are doing well so far, even though you feel miserable. I was also very dizzy and wonky headed and bobble headed after surgery.  I walked and then rested as much as possible the first month and then returned to driving and work.  The second month about all I could do was work and rest.  I'm 3 1/2 months out now and feeling much better.  Give yourself time.  You are on the other side of the hardest part and welcome to the postie family. 

Karen

[Jim Scott]

Hi, Jamie -

Thanks for the update and congratulations on becoming a 'postie' (post-op AN patient). 

Although it may seem a bit daunting right now, you will steadily improve. 

The 'ballpark' recovery time frame is six weeks and that may be plenty - or not near enough, depending on your body's ability to heal and for you to regain your equilibrium (and confidence). 

I needed about two months (post-op) to feel relatively normal but I pushed myself to do whatever was hard for me so as to get back on track, as it were.  I was driving (with my doctors consent) within two weeks of my surgery and it was never a problem.  I hated vestibular exercises so, instead, I walked a few miles every day (it was summer in the northeast) and made sure I was walking over uneven terrain to help my brain re-orient itself to one-sided input. That proved to be very effective.

Being SSD remains an impediment but a relatively minor one (for me).  Many AN patients who are SSD struggle with it and that is why we have the BAHA and other hearing aids/devices. 

With your fairly rapid recovery so far, you should begin to feel much better and more in control of your balance within a few weeks, at most, although that is pure speculation, not a guarantee.    I suggest that you try to wean off of the pain killing drugs as quickly as feasible, depending on your need.  They do help but can quickly morph into a crutch that impedes recovery.

Please keep us updated as your time allows.  Thanks.

Jim

[kmr1969]

Jamie,

Good to hear that you are ok and happy to hear that you are home.

Recovery has not been a lot of fun but it is pretty amazing what our bodies are working on right now.

I actually got 3 solid stretches of 3 hours of sleep last night.  Looking forward to trying to walk to the cafeteria with my wife this morning to pick out my OWN breakfast.

Hang in their - with rest, patience, and some of effort that Jim mentioned, your body will work hard to get you through this.

Hope you are feeling better today than yesterday,

Ken

[Pajamas]

Again, thank you so much everybody. It's true, our bodies are amazing and complex pieces of machinery that need time and unfortunately, sometimes even more time to get back to normal.

SSD is something I was expecting, obviously, but as I did not have it going into surgery, I had no real idea what it was going to be like. It's been super traumatic for me.

I don't know if I mentioned though, that I had absolutely NO facial paralysis. Not even temporary. I am super happy about that.

Ken,
Three, three hour stretches of sleep INSIDE the hospital? Wow. Also, you're not too dizzy and sick to walk around or use the computer?

I have been wondering if the reason why I have been so dizzy, disoriented, and off balance is because my vestibular nerve was in such good working condition before surgery? I won't be like this forever will I?

Sigh, I am SO not used to be this dependent. It's horrible but I know I need to give it more time. It's only been a week and a half and I'm going insane.

Jamie

[It is what it is]

Jamie, like you, my vestibular system was working just fine before surgery.  It is amazing what a shock it is to wake up with a vestibular system that abruptly doesn't work.  For us, our brain has to start from scratch to figure out it isn't working and then it has to realize the other side needs to begin taking over the complete job for both sides.  That takes time.  Some people with larger ANs have had this happen gradually before surgery, so their bodies may not experience the severe vestibular symptoms that we experience immediately after waking up.  It does get better! 

Karen

[Pajamas]

Karen,

Thank you for the empathy. How long has it taken you to get back to normal since you're surgery? I feel so silly sometimes because I didn't realize what a big deal this was going to be. I thought I'd be sitting back at school taking finals and sitting at my desk within weeks of surgery but with this wonky head I am having a hard time picturing that future again.

I had no idea that my vestibular system was so important, oh how I miss being able to turn every which way! I'm hoping that the staples being removed tomorrow will help with some of my posi vibes.

I am walking, exercising, and doing all that I can but the only time I'm really at ease is when I'm resting.

Jamie

[millie]

Yes, Jaime-I too underestimated what the recovery would be like.  I thought I'd bounce back a little more quickly-I didn't anticipate the facial droop-which I am glad you don't have-and the teary eye...I also thought my fullheadedness would be gone forever, but when I stand and walk it seems always with me...  But I have definitely seen some improvement from the first two weeks...and lately I have started walking around the block once a day...
This is a long way from the first walk after surgery when I felt so weak and dizzy I cried.
Folks on the forum have said time and patience are our friends.    It will get better.  Mil

[It is what it is]

Recently, I have felt my brain is able to process complex things much easier and more quickly like it did before surgery.  My balance is much  better and I'm not needing nearly as much rest.  I care.  Karen

[kmr1969]

Jamie,

My tumor was almost 3 cms, so I think my body had been compensating for me for a long time without me knowing about it.  I didn't have any symptoms other than tinnitus and slight hearing loss when I was diagnosed.  Within 2 months of diagnosis, I did start to have some tingling/numbness in my face.

I think you are underestimating yourself and your recovery.  I thought this would be a problem for me as we'll, as I am almost never sick and provide a lot of care and support to older parents and an older brother with health issues.  But, for whatever reason I have been able to accept (at least so far) that for the next several months, my. life is going to have to be different.  I'm going to listen to my body and more importantly my wife and not do anything to jeopardize my recovery.  Who knows what we may learn about ourselves over the next several months just by watching, listening, and really paying attention?

You are doing great and you will be doing even better tomorrow than you are today. 

Heal well, ken

[PamJ]

Hi Jamie when I was told I'd have to lose my hearing on my right side during a translab operation it didn't really bother me because I thought 'oh well I can still hear with my left ear' how wrong was I, I really didn't realise how it would affect me and was a terrible shock, like you I walked into hospital with perfect hearing and stumbled out with single sided deafness.  Now after 19 months my balance is nearly back to normal and I have been fitted with a BAHA  and can honestly say it has helped me

[knit78]

I'm so glad to read through this thread and see that you came through your surgery just fine. I, too, had the same surgery November 2nd at Massachusetts General Hospital. Lord...I was terrified. Right up to the very minute I was being wheeled away. I told everyone I changed my mind. Have a tumor is cool!! And then I woke up and began the next phase of the journey. Like you, it hasn't been at all what I expected. In most respects, it has been harder. I had been warned I may lose total hearing in my right ear. I was okay with this risk. I, again like you, was more fearful of the facial paralysis or something more physically worse. But I woke with no facial paralysis (yay!), but did lose all hearing in my right ear. That, strangely, has been very hard for me to cope with. I never really thought about how the loss of my hearing would change things. How my first venture into a big store was so overwhelming to my senses that I broke into tears. And the pain. The headaches. I knew there would be headaches but no one can fully prepare you for this kind of pain in your head. No one can describe that to you.

But....BUT. We have survived! The tumor is gone and now we push forward. Every day I see small improvements. I was frustrated at first because I didn't think I was progressing quickly enough. But it has been pointed out to me many times that I need to allow my body to heal at its own pace. Thus, I'm glad for the small changes. Today? Today I put fresh sheets on the bed and vacuumed the house. Might not seem like a lot...but it was for me!!

Be patient. It will get better. Day by day. REST.

[chance1212]

Ken--Glad to hear your good news! I too had mine on the 13th and went home on the 16th. I had a 1cm+ AN with a lot of symptoms. I do think this help me, Jamie. I have already learned to deal with the issue of being SSD (lost hearing within 3 months of diagnosis). I do believe, Jamie, you're young and will begin to see great improvements soon. You're probably doing better than you think. "They" keep saying I'm doing great and I think "really?" I also don't look sick, scar is mostly hidden with hair, etc. This can cause others to think you're ok. Take your time and get well.  Thinking about all of you who have had surgery recently

[It is what it is]

My thoughts are with all of you as you go through these first days and weeks. 

I hope you are able to have a Thanksgiving. 

Karen