Some recovery observations/questions

[petittrv]

Hello,

I am 11 months Post-op for a 4.5 cm AN on the left side.  I am deaf on that side now and have the resultant facial paralysis aleviated somewhat by the VII-XII nerve transfer.  I come on this board now and then when I have a question about something and generally find out its "normal" for us "fortunates".  I appreciate all the effort and sharing that goes on here, especially the veterans that help square away us newbies as we go through this new journey.  A couple of observations I have made of my condition that I didn't see already addressed here:

1) My right arm does not swing when I walk anymore.  I can make it swing and there is no pain, but other than the movement from gravity and my pace, it just hangs there.  Anyone else ever notice this?

2) The muscle in my neck along the scar has a tendency to cramp up - not horrible, but I have to stop what I'm doing and massage it for a few moments to get it to settle down.  I'm sure this is just related to the actual cutting but the scar is pretty well healed and this still occurs daily.  Has anyone else had this, and does it eventually go away?

I know neither of these things are very serious, most of my major problems (annoyances) are in line with what everyone else has posted, just curious on these because I hadn't seen them (although I haven't read every post either).

Thanks,
Rick

[Jim Scott]

Rick:

As my signature shows, I also had a 4.5 cm AN removed, then radiated, with very successful results. 

I never experienced the lack of natural , involuntary arm-swinging while walking that you mentioned so I can't offer any credible advice on that issue. 

The neck muscle situation is a bit more familiar to me.  Although mine never cramped, it has occasionally felt 'tight'.  A bit of rubbing alleviates the stiffness.  I assume this is due in part to the muscle being cut.  I haven't found it to be a problem. 

As for what is 'normal', we've pretty much ascertained that the word 'normal' is non-operative when discussing acoustic neuroma and it's many manifestations as well as post-op complications. 

I regret that this post probably isn't overly helpful - but it's all I have to offer.  Others may have more useful information, I'm sure.  I'm pleased to learn you're doing well and I hope you'll stop back more often to contribute to our collective AN knowledge.

Jim

 

[lori67]

Hi Rick.

I have to say, I haven't really paid much attention to my arm swinging when I walk, but next time I walk, I'll see... I think since I usually have a 2 year old or a 5 year old attached to it, it probably doesn't swing too much!   

As far as your scar, it might be adhesions that are causing you the discomfort.  What a therapist would do is called a friction massage or deep tissue massage.  That helps to break up the adhesions under the skin to keep the skin mobile - it should slide over the muscle underneath it, not cling to it.  You can do it yourself by just massaging the scar along the length of it and then also across it.  You can use some lotion or something so you don't cause yourself more pain in the process!  If it doesn't seem to be helping, see if you can get a referral to PT for a few sessions so they can work on it for you.  I had a scar on my ankle that did the same thing and the massage really helped.

And a question for you - did you have good results from your 7-12?  I'm having it next week and I'm getting more nervous about this that I was about my actual AN surgery!

Lori

[petittrv]

Lori and Jim,

Thanks for the answers.  Lori, my results have been OK so far from the 7-12, although I am still working through the changes.  Just one note that I hope is not discouraging - it took seven months for me to have any movement at all.  But once it got started things moved along pretty quickly.  Be patient and don't get too discouraged by the changes you have to make when eating - it becomes second nature quickly.

Jim, what did you have radiated after the removal - did it start coming back or did the doctors leave some of it in there?  I wasn't given any option for radiation, they just cut out the whole thing (and all the nerves with it).  Just curios - it doesn't make any difference now.

Rick

[Kaybo]

Rick~
Are you tallking the muscle along the 12/7 incision?  YES!  I have that.  Since I have had mine for over 11 years, I have pinpointed the triggers for me and it is exactly what you are saying - it is not horrible, just reqires a bit of rubbing (& sometimes my tounge kind of "thickens" for a few seconds).  For me, it is when I am tired & YAWN - that is the trigger!  I first noticed it when I would be reading to my students after lunch (it didn't help I was having a turkey sandwich everyday!!) and then it would be hard to read for a few seconds b/c I couldn't get the words out.  Is this what you are talking about??


K

[lori67]

Thanks Rick.

And no, not discouraging.  I appreciate the honest answers - it helps me know what to expect and not be too surprised along the way!

Since eating and talking are what I do best, I don't think it will take too long to adjust! 

Lori

[petittrv]

K,

That's it - I'll have to see if yawning is what sets it off for me.  In fact, I received a call as I was typing this and yawned a liittle (obviously an iimportant call) and it tightened up again.  I guess I'll just have to gorge myself on energy shots from now on...

Rick

[Jim Scott]

Jim, what did you have radiated after the removal - did it start coming back or did the doctors leave some of it in there?  I wasn't given any option for radiation, they just cut out the whole thing (and all the nerves with it).  Just curios - it doesn't make any difference now.

Rick

Rick:  I'm glad you asked.  I really don't mind satisfying your curiosity 

My neurosurgeon had a 'game plan' that was predicated on avoiding facial nerve damage, which was my biggest concern and one that I made crystal clear to the good doctor, who took my concern seriously.

He 'debulked' (hollowed out) the 4.5 cm AN, cutting off it's blood supply and reducing it to about 2.5 cm.  Then, working with a radiation oncologist and using 'new' (post-op) MRI and CT scans, they 'mapped' out my FSR treatments, again attempting to limit any facial nerve damage in the process.  It all went quite well.  The 9-hour surgery (retro) was successful and the 26 sequential FSR treatments were uneventful.  Fortunately, I did not suffered any side effects from the radiation.  As my signature shows, tumor shrinkage and necrosis is evident from my last MRI, just 6 weeks ago. 

Today, for all intents, I'm back to normal. I had long ago lost my hearing in the AN-affected ear so that was not an issue.  I cope quite well with my SSD.   I have a very few lingering reminders of the AN, but nothing that impacts my lifestyle or gives me any real trouble.  I take no medications and, thankfully, I remain in good health.  Last time I checked (well, a nurse checked) my BP was 128/70, pulse 68.  I'll take it.  Everything seems to be working well.    I sincerely hope you can soon make the same statement.

Jim

[lori67]

Rick,

Maybe you should just quit taking those "important" calls!   

Lori

[jazzfunkanne]

Hi this happen to my arm for a while, i had a 4.5cm AN removed as well, i am now 21 months post op and my arm is fine now but it took over a year to see the difference, i think having two boys still at school helps keep me active. Lori good luck with your surgery next weekx

[Zanybrainy]

Hi! I am almost 4 years post surgery and I still do not swing my arm on the an side unless I am walking fairly fast.
My husband points it out and I do it if I concentrate, but how many things can you concentrate on at one time?  I was not swinging my arm before surgery but did not know why, DUH? My brain stem was pretty badly compressed and I did not notice any symptoms (my family calls me oblivious). Watch out for friends honking at you when you walk-I turned my head to see who it was and almost lost it.   Life is a great adventure and God is good!  Cath