Back home ~9 days post-op

[rvb755]

Hello, I have returned home tonight to Michigan from Los Angeles.  Dr Friedman removed my stitches Thursday morning and gave us the OK  to fly back home.  My recovery seems to be going extremely well.  My tumor was 100% removed, my facial nerve function is intact and my balance feels close to pre-surgery.  I had requested wheelchairs at the airport but ended up not needing them.  I currently still have numbness on the left side and of course the SSD.  I am trying to take it easy but feel like I am bouncing back fast and it will become difficult to hold back.  I really want to give my head the 4 weeks to heal without any straining.  One of the biggest struggles I have is sleeping at night.  I am still on the steroids so I hope that is causing the problem.  Last night prior to flying home I was wide awake in bed for several hours and sleeping has never been a problem for me.  If anyone has experienced similar sleeping problems after surgery I would love to hear how things are now.  I will continue updating as I meet with the local doctor for follow up and look to get back to work.

Rick

[HeidiC]

Thats great Rick!  I am glad to hear you are doing so well!

~Heidi

[CHD63]

Hi Rick .....

So great to hear the good news directly from you ..... another wonderful successful outcome.

The sleeping will rather rapidly improve once you are off the awful steroids.  Do not be surprised if the euphoria (aka steroid rush) leaves, as well.  It seems we cannot have it both ways.  I played a lot of games in the middle of the night until off of them!

So glad you are feeling so well.

Best wishes and many thoughts and prayers for an uneventful recovery.

Clarice

[nftwoed]

Hi Rick;
  I've taken steroids 3 xs for sudden hearing loss and must say didn't sleep and felt to be bouncing off walls with prednisone.
  A switch to dimethylprednisolone did help some. At least I think that was the name.
  The insomnia does stop pretty quickly when tapering down, however.
  Best wishes, and congratulations on a good surgical outcome! The facial nerve is a motor nerve and should appertain to a more normal condition shortly if still intact.
  I certainly wish auditory and vestibular nerves were a resilient as the facial nerve but they are sensory nerves and far more fragile.

[Jim Scott]

Rick ~

Congratulations on a successful AN surgery and what appears to be a rapid recovery!  I understand the urge to plunge back into your normal routine.  I had a similarly successful surgery (and radiation) experience and was impatient to 'get my life back'  I probably overdid things here and there but except for fatigue (still extant) I didn't suffer any negative consequences.  However, we're all unique and one AN patients experience is not a template for every other AN patient so try to contain your urge to jump back into your normal routine, especially when it may involve physical exertion more strenuous than changing the TV channel with the remote.  As previous posters have stated, as the effects of the steroids wear off your sleep patterns should re-establish themselves.  Again, congratulations.  Well done.

Jim

[Lesliegc]

Rick
Congratulations!
I'm 5 weeks post op. I had Dr Friedman too; flew home to VT at 12 days post op.
The steroid induced sleeplessness was the hardest part for me. I finally called a friend who is a nurse in the middle of the night my 3d or 4th night at St V's, distraught over the wakefulness, and she recommended taking attivan before bed. It's an anti-anxiety med, but unlike sleeping pills, it helped me sleep without any other weird side effects ( I don't know about you, but there were times I was hallucinating those crucifixes floating right off the wall). What nobody really explained to me, also, is that after you taper off the steroids, they continue to affect you, esp if you are sensitive/not used to medications. It took another 2 1/2 weeks to feel rid of the steroids' effects after I had finished taking them. The attivan was really helpful, also "goodnight" tea, which has valerian root. I tried sleeping pills while I was still in LA and they just made it worse, plus I felt awful the next day. Anyway, hope that helps. It will get so much better in the next few weeks. Now I am sleeping really well. Occasionally taking a nap during the day too, which started after the steroids wore off, and which I try to indulge when life and schedule permits. All the best with your continued recovery; let me know how it goes with the sleeping.
Best
Leslie

[rvb755]

Thanks everyone for the replies.  Since posting my problems sleeping a few days ago I am happy to say I have had 4 really good nights sleep in a row.  The steroids were done for me on Saturday so that is probably helping.  I have still been taking a sleeping pill at night but will probably stop that soon as well.  I really don't like to rely on any medications for long, and would like to get everything through my system.  Recovery continues to go very well.  I will be contacting the doctor here locally to schedule a follow up appointment.

Rick

[jaylogs]

Congrats on the trip home Rick!! I too was a House patient, and they did take good care of me. Ahh  yes, the steroids...so many people have written on here their adventures with them, I only remember waking up at 2 in the morning and that was it...for a solid week!  I know it's hard to hold back once  you do start feeling better, but steady and slow in this race will do you wonders! Take care!
Jay

[mrmel]

Hi Rick,
 Glad everything went well. I am curious as to what kind of surgery you had? I see translab, was that radical, or gamma or cyberknife? How long was the surgery? I had translab for a 2.5 cm tumor 15 years ago and i had to leaern how to walk again, facial nerve snapped, double vision, gold weight in eyelid for 2 years, and chronic fatigue every since. Just curious if they did something different with you?
                    Mel

[mrmel]

Hi Rick,
Glad you are doing well, i sent you a message on here a few days ago and you probably are very busy rehabilitating to respond, which i totally understand. If you get a chance i had some questions for you in that message. I hope all is well.
                       Mel

[rvb755]

Mel, I just checked my messages and I don't see a recent message from you.  I would be happy to answer any questions I can if you want to try sending another message.  Thanks for the kind words.

[Jim Scott]

Rick ~

I could be mistaken but I believe that Mel refers to his post (#8) on this thread - which has some questions for you.  Check it out.

Jim

[Helena]

Sleepless: download the app Word Feud on your smartphone and play... It's so nice..

[rvb755]

Jim, thanks for pointing out Mel's questions in this thread.  I misread his second message and missed his first response which included the questions.

Mel, I haven't seen the Translab procedure broken down as you describe (radical, gamma and cyberknife) so I guess I am not sure how to best answer your question.  I was under the impression that gamma and cyberknife were types of radiation treatment and Translab is one of the surgical methods of tumor removal.  Maybe someone else can clarify these terms for me.  In my meeting with Dr. Friedman he said they would be using a Translab approach, but as far as I remember he did not use any other terms along with Translab.

My surgery lasted about 9 hours.  I was into the operating room around 7-7:30 am and was brought to ICU around 4-4:30 pm.  I had fat harvested from my belly on the left side and a titanium mesh installed.

In my meetings with Dr. Friedman he did tell me he has been using a new method for preventing CSF leaks after surgery and said since he has used this new method he has not had any leaks.  He did not go into more detail about this procedure so I can't provide any additional details regarding this part of the surgery.  I hope I have been able to answer some of your questions.

[JAndrews]

Glad to hear your good report! I knew it would be a good one with House doing your surgery. Don't over do it---you will feel it/pay for it later! I had trouble sleeping also, I took ativan at bedtime--helped me sleep and also helped me block out the tinnitus (not all of it was blocked out--thats impossible). Don't be surprised if you have some really funky head noise--all normal!