18 months post surgery.....update

[kathleenanna]

Hello to all.....it has been quite a while since I have posted, but I do read what others write.  Sept 15th 2010 was my translab surgery to remove the 2 cm tumor on my left side.  I have been back to work full time for over a year now.  I am doing practically everything that I did before the surgery, with some limitations.  I do avoid crowded and loud places...that makes me crazy!!!  It is amazing to me how much my attitude about life has changed......don't sweat the small stuff anymore! Life is good. 
But, there is always a but...........I have had pretty annoying headaches daily and my neurologist started me on effexor and has increased the dosage to 100mg since I started.  It does help, but somedays are worse than others.  Within the past few months, I have had a fullness in my head, the feeling like my ears need to pop.  Also, my neck on the AN side is so sore all the time and my balance is off more when I am tired and all hearing is gone on the left side.  I do take aleve and use the heating pad......I just had a MRI done for the full feeling and will get the results next week.  Here is my question, if eveything comes back ok on the MRI, are these feelings "normal" for this long after surgery?  i thought that by this stage, I would have felt better than I do.  I hate to sound like a complainer because I am grateful that the surgery went well, but I can't imagine feeling this way for the rest of my life.  Does anyone else have head issues like this?  And if so, what do you do for them?
Thanks for all the great information you all share........it is appreciated more than you could ever know......

[kathleenanna]

I probably should have posted this under the "headaches" catagory!!  Just viewed it and realize that there a quite a few of us who have them....

[Syl]

At 18 months I was feeling much better than shortly after surgery, but feeling pretty lousy compared to how I feel now at almost 4 years post-op.

At 18 months my brain was still adjusting to my 20% word recognition. I had to re-learn some sounds which had become unrecognizable to me. I was still sleeping with a night light because I couldn't tell which way was up or down in my own home. I was getting headaches anywhere from 3-5 times/wk though the frequency & intensity had begun to ease up a bit. I was calling in sick to work more often than I ever had because of the debilitating headaches or the debilitating fatigue. I was still bumping into walls, esp around corners. I was dizzy or wonki-headed most of the time. I wasn't sleeping straight through the night.

It was actually around my 3 yr anniversary that my head began to feel clear & connected to my body for longer stretches of time. I still get dizzy or wonki-headed when I'm tired & end up walking like a drunk, but after taking a break or relaxing a bit, it goes away. I can go 2-3 weeks without a headache. Most often the now mild pain is contained in the back of the neck, but usually goes away on its own & doesn't usually turn into a headache. And, rarely is it the debilitating pain that I used to suffer on an almost daily basis. In fact, I only get those debilitating ones every few months or so. I don't remember the last time I bumped into a wall. I find I still have to dodge those corners, but I clear those turns. Driving feels normal now, esp when looking from left to right. I still struggle a bit backing up or parallel parking.

I find that exercising on a regular basis helps my balance & dizziness. The exercises the ENT & physical therapist gave me were hard to stick to so I have found some activities that I enjoy & have learned to stick to them. When I slack off with these activities, I find that I don't feel as clear-headed & steady on my feet. I also find that staying hydrated helps me feel better.

As for the noisy malls, I don't think I will ever get used to those. A trip to the mall always leaves me exhausted because of the noise.

Hang in there.

Syl

[kathleenanna]

Thank you Syl for your response and words of encouragement.  Funny thing about exercise...I do walk.  But I noticed that when I joined Curves for a more overall exercise, my headaches got worse.  I dont know if the resistance or the jogging in place was too much.  I haven't gone back for about 3 weeks and I would like to start up again.  Maybe I over did it.  I will take it slower this time around. I havent missed any days of work, but trust me when I say there are many days I just sit in my office and move the paperwork around like I am doing something!!  I also notice that if I stay up later than normal, or sleep in later than normal, that triggers my headaches.  For me, I feel like I am having a hard time getting my head around the fact that I had pretty bad symptoms before I knew about the tumor, then found out about it, then had the surgery to have it removed, that I should be normal now.  My family keeps telling me that its not like a gallbladder or appedicites surgery,, that once its out, you're ok.  Why do I keep thinking that it should be that way?  As you can probably gather, patience isnt one of the virtues that I have an abundance of!  But, thanks to people like you who share your experiences, it makes this journey a little easier and my expectations not as high.  I will continue to take one day at a time.....or shall I say, I will TRY.!!!!!!   Thanks again.

[Suu]

G'day Kathleenanna

I had translab in August 2010 and I still get that fullness inside my head.  Exercise or movements where I hang my head forward seem to make it worse so if your job entails being over a desk or computer I found that if I raised my chair so I was looking ahead at the screen was better than looking up or down at it.
If you work with papers maybe you could lift them up to your sight-line and not lean over to read them on your desk?

It's a new kind of normal for each of us and we all seem to be recovering differently although we had the same original problem.  Go figure.

The way you said about feeling better this far down the track sometimes isn't the case for some of us.  Some others are back at work and feel 'normal' post-op quicker than others.

We can and will find our middle ground but time is what we have to wait on.  It's like baking a cake or boiling water - we can't hurry it 

If your symptoms persist please do seek your ENT or neurosurgeon's advice.

Hugs go to you for a middle ground soon.

Suu xxoo

[kathleenanna]

Thanks Suu...........Its funny, but I was prepared for the "new normal" but guess I really didn't really think I wouldn't be feeling this way....but it does help to hear from others who experience the same feelings.......I have an appt in two weeks with my neurosurgeon to review the MRI I just had done........I have been followed by the ENT surgeon who did the surgery, Dr. Bigelow at Penn since my neurosurgeon moved to Jefferson right after the surgery.  (Dr. Judy)  I am looking forward to seeing him and hearing what he has to say.  Dr. Bigelow just started me on a steroid regimen for two weeks........Between the headache medicine (Effexor) and now the prednisone....my kids have all told me they will steer clear!!!!  (30, 22, 23 year olds think they are way funny!!)  You are right about hanging my head forward, and I have played with my chair and monitor at work to different heights and being level is the best.  How are you feeling at this point and what symptoms are you experiencing?  Do you take any meds?    Thanks........Kathleenanna

[Suu]

G'day again

I was on steroids when first diagnosed but the AN was already 4cm so it was a quick decision to get it out as I didn't know about the bit of hearing loss or the dizzy spells I'd been having right up to the day of diagnosis when I was nearly hit by a car that I didn't hear.  My face went tingly and I was as deaf as a post on the left side and it was sudden.  I thought I was having a stroke.

We dont' have follow-up MRI's as a general 'rule' in Australia.  I think they wait till we have a symptom 

I'm on Vallium if I have an anxiety attack - these started after having so many surgeries in such a short time.  I have spina bifida in my lower back so I'm on pain meds (codeine) and Endep for sleeping.  I've developed acid reflux so the doc put me on Omeprazole.  I can't sleep on my AN side due to having a hip replacement on the same side that I had a tendon taken from that leg to use for the sling in my face.
I was on something else for the dizziness but after learning how to walk and move around more slowly I find I'm less dizzy so weaned off them.
The hearing thing was a big problem but not for me - for the people around me.  It's them that also have to adjust to what we've been through and a lot of the time hubby still stands on my left side to say something and I now say simply "I can't understand you". I used to be the one to move to the other side of him but now I make him do the moving LOL  My grandchildren are the ones who have adjusted better than most to how I am.  They're 15, 13, 2 and 6 months.  The oldest two have been amazing.

The fullness in my head sometimes gets bad but I haven't been able to figure out why except it could be that I'm doing something in a way to aggravate it like bending forward or even looking up.  I don't knit in bed anymore. (At 57 I took up knitting to keep my brain active LOL)

What I can tell you confidently is - if we come to terms with all the changes that we're going through then it's easier to cope.  The first place I come to is here and search for whatever it is that I'm feeling to see if it's 'normal'.  Everything from tinnitus (don't get me started on all the noises that go on inside my deaf ear where there's no middle ear or ear drum  ) to earaches, dizziness, wonkyness (swaying, runnng into walls, and getting off balance), and feeling off in general.

Someone on the forum asked if anyone felt different.  I didn't answer because everyone that had replied said they were the same.  I'm not.  I do things differently, I think differently, and I try to plan the next day as if it's going to be a good day.  I took this for granted pre-op.

Anyone that's had their head opened up and had human hands inside their head may just feel a bit different than they did before. 

If it was a broken bone we'd 'get over it'. This is so much more different that it's hard to explain except for coming here where we have a soft place to land when we need a hug or advice.

Hugs to you and please keep writing and I'll keep reading. 

Suu xxoo

[pjb]

G'day again

I was on steroids when first diagnosed but the AN was already 4cm so it was a quick decision to get it out as I didn't know about the bit of hearing loss or the dizzy spells I'd been having right up to the day of diagnosis when I was nearly hit by a car that I didn't hear.  My face went tingly and I was as deaf as a post on the left side and it was sudden.  I thought I was having a stroke.

We dont' have follow-up MRI's as a general 'rule' in Australia.  I think they wait till we have a symptom 

I'm on Vallium if I have an anxiety attack - these started after having so many surgeries in such a short time.  I have spina bifida in my lower back so I'm on pain meds (codeine) and Endep for sleeping.  I've developed acid reflux so the doc put me on Omeprazole.  I can't sleep on my AN side due to having a hip replacement on the same side that I had a tendon taken from that leg to use for the sling in my face.
I was on something else for the dizziness but after learning how to walk and move around more slowly I find I'm less dizzy so weaned off them.
The hearing thing was a big problem but not for me - for the people around me.  It's them that also have to adjust to what we've been through and a lot of the time hubby still stands on my left side to say something and I now say simply "I can't understand you". I used to be the one to move to the other side of him but now I make him do the moving LOL  My grandchildren are the ones who have adjusted better than most to how I am.  They're 15, 13, 2 and 6 months.  The oldest two have been amazing.

The fullness in my head sometimes gets bad but I haven't been able to figure out why except it could be that I'm doing something in a way to aggravate it like bending forward or even looking up.  I don't knit in bed anymore. (At 57 I took up knitting to keep my brain active LOL)

What I can tell you confidently is - if we come to terms with all the changes that we're going through then it's easier to cope.  The first place I come to is here and search for whatever it is that I'm feeling to see if it's 'normal'.  Everything from tinnitus (don't get me started on all the noises that go on inside my deaf ear where there's no middle ear or ear drum  ) to earaches, dizziness, wonkyness (swaying, runnng into walls, and getting off balance), and feeling off in general.

Someone on the forum asked if anyone felt different.  I didn't answer because everyone that had replied said they were the same.  I'm not.  I do things differently, I think differently, and I try to plan the next day as if it's going to be a good day.  I took this for granted pre-op.

Anyone that's had their head opened up and had human hands inside their head may just feel a bit different than they did before. 

If it was a broken bone we'd 'get over it'. This is so much more different that it's hard to explain except for coming here where we have a soft place to land when we need a hug or advice.

Hugs to you and please keep writing and I'll keep reading. 

Suu xxoo

Love the way you put it......I have trouble expressing my thoughts and reading all the posts but I make sure I always read yours....Thank you for putting it in the words I would have loved to...

Best Wishes,

[Chances3]

Hi Kathleen,

I am approaching 18 months post op at the end of April.  Although the head pain has gone away, I still have issues with balance, and visual displacement.  My doctor has told me that I am still in recovery and can expect to continue in my improvement.

I had some yard work to do recently, it was the first time I really exerted myself and spent the entire day outside.  It did wonders to my balance and visual world.  I highly recommend some form of work out, and get out there and see the world ! 

Last year at this time I suffered a lot from the pollen, so perhaps that might be causing some problems as well.  Hang in there and stay strong.

[kathleenanna]

Thanks Chances for the reply..........I can't tell you how much better I mentally feel since I have posted and received all your wonderful replies.........I have been walking and that does help, you are right.  I received a call today from the ENT and he said that the MRI looks normal....no sign of regrowth, just post operative changes.  I am still going to see Dr. Judy next week,as he suggested.  I was happy to hear that......somewhere in the back of my mind I was wondering if anything else started growing in there!  My mantra " I can do this...one day at a time" ........Thanks again. Kathleenanna

[Chances3]

Glad your MRI is clean.  Perhaps some of the head pain was related to stress from waiting for the results.  You seem so much better since your first post, and I love the mantra.  Mine is " Don't look at the past, you'll never make plans for the future".  Definitely get out there and stimulate that brain.  Stay in touch.

[Suu]

  That's awesome news Kathleenanna regarding your MRI.  Keep noting the changes whether they be good or 'bad' so we can keep up with each other's progress.

PJB - That comment of yours put a smile on my dial. Many thanks mate.

Suu xxoo