2.5 cm Acoustic Neuroma - Postop 5 months

[MsPuppen]

hi, ive just found out today that i have this, mine is 13x5mm?, they are going to monitor this and do annual mri's, if it grows then they will look into this more. I really hope it goes well for you and pray that you will recover 100%.

[Marie5115]

There JohnnieD72 I would like to know how you are now? I had same surgery on a ( 2,9cm) tumor in june 2009. I also already saw you last video and am scared off your neck pain as I have some from time to time and as the scarearea is all the time painfull.

Let me know.

[gopherusagassizii]

I pray your recovery is coming along. I go in for my surgery in January and appreciate your sharing your experience and frustrations.

[bobchatt1]

Just a quick note to say thankyou for posting your videos. I greatly emphathize with your recovery journey. You were my motivation to post my video (1.0 cm tumor removed this past August). I am thankufl that I was one of the luck y ones with minor / temporary post surgery complications (except for hearing loss). Best wishes and continues success to you on your recovery journey. Bob

[guidodday]

I had AN surgery last year (Dec18th) on a 5.1cm tumor on my right side. I've posted videos too (Acoustic Neuroma Removal Chapter 1), about 11 of them. I haven't any severe neck and head pain like you do, but I had tons of other complications. My doctors said it would take up to a year for my face to heal, and it's almost there. Best advice I can give you is stay positive and try and find the humor in all of it. That helped me keep my sanity. All the best to you...

[JohnnieD72]

I watched all of your videos before my surgery. Sounds like you had quite a tough time even without the neck pain. I am glad you are recovering well, and would love to see a new video from you to see how you are doing now.Take Care

[mattweissguam]

I see that you got the ol' "six months and you'll be fine" party line from your doctors as well. I had my surgery almost five years ago and I am still struggling with many of your symptoms, sans the pain. The good news is that you did the right thing with having the surgery, because it would have eventually killed you. People need to realize that AN surgery can leave you in pretty rotten shape. It's not all doom and gloom...you will continue to get better...it is a long road...no time frame.

[JohnnieD72]

I totally agree with you. That is my goal in doing these videos is to let people know how hard it is, but the one thing that really seems to be missing in the youtube videos has been follow through. I intend to keep doing these for as long as it makes sense. Hopefully I willl be able to show the process is no picnic, for people to be prepared for it, but in the end, all will be good. I am happy to get to the latter part of that. :-)

[mattweissguam]

For me, besides the physical complications from the surgery, the psychological factors of not feeling great after the six months for seemed to set me back in the healing process. After I hit the six month mark, and did not feel great I assumed there was something else wrong. The fact of the matter is that this is a life altering procedure with no concrete healing time frame. Have had vestibular hyperacuisis and mass tinitus after surger...now getting that fixed via TRT and trans ear aides..matt

[2911harry]

I had a medium to large AN removed in 2000. I am 34 years old. I too had very bad neck pain and headaches in the early days. After consulting a pain consultant and physiotherapy, they got me to try a hardish memory foam pillow at night.  The trick is to get it onto a slant so that the pillow wedges in between your neck and jaw line. The results were amazing, no more intense headaches first thing in morning or shooting neck pain during the day. Pain can be debilitating, hope this helps u 2.

[JohnnieD72]

Thanks for that. My doctor just prescribed Lyrica for me, and the pain is pretty much gone. It seems the pain is nerve pain, and everyone had been prescribing the wrong thing. I can't tell you how happy I am about this new medication, but I appreciate the advice on the pillow too.

[TheBoldnanny]

After seeing your video I got the courage and posted my own ,I had my surgery Jan 09 I was left with a lot problems now im new issue's server headache's feels like my head will explode the facial nerve is not back is not going that well slow and the surgeons don't know why I don't like taking drugs but I have had to NAPROXEN IS WORKING FOR ME AND THERE IS NO FUZZINESS FROM THEM ,I'm GETTING ELECTRIC SHOCKS in MY FACE WHATS THAT ABOUT !IF YOU GET TIME SEE MY VIDEO G

[JohnnieD72]

I watched your video. I am glad you had the courage to share. It is hard for me to see myself in the mirror or watch my own videos. I am functioning well for the most part, and have adapted to my current condition, but I know how hard it is to see yourself, and think "where did I go". Anyway, thanks for the comment and thanks for posting your video. Take care and keep us updated.

[jmpaul330]

Hi Jonh,

I had my left sideded AC removed in '96. I have very little hearing, it's difficult, however, I manage. I also had a lot of pain in the same location at the base of my skull of the left side. What really works for me was Flexeril 5mg; and the biggest help was getting SPORTSSCREAM, it comes in a tube. You can get it at CVS or Walgreens. I find it mostly at CVS. I have a tube at home and at work. It works great for me! When I got spasms I used the Flexeril. Good Luck

[JohnnieD72]

Thanks for that suggestion. I will have to try that. I have my appointment with the surgeons again on October 15th, and definitely need to speak with them about this pain. I was getting better recently, but last night even the Flexeril, Oxocodone, Ibuprofen combination did not work. That is the first time it has let me down, so I really appreciate the suggestion for something to try.

[Jeffbud84]

Hey man, sorry about all of your problems. Its been 2 months since my surgery 2.3 cm. I dont have the neck pain, but i noticed that your scare goes down your neck more than mine does. I did lose all my hearing in my left hear, although i did gain my facial nerve back. I broke out with some kind of rash, so i thought, went to the doctor, and it turned out that i have psorasis of Von Zumbush, or whatever, anyway the doc says it came on b/c of the stress with the surgery. WIERD anyway tak it eas

[villagefem]

Am so terribly sorry for all your discomfort I would imagine this was an accident. and you try to fix it with surgery, I could be wrong ...

But I will pray for you....Find a spiritual outlet somewhere. Keep out of the house --look into natural medicines. for pain.... Blessings with you..... Peace...