2.5 cm Acoustic Neuroma - Postop 10 days

My name is Johnnie Dunkum. I had a 2.5 cm acoustic neuroma brain tumor removed at Johns Hopkins on 4/7/2009. This is the first of a series on the story of my recovery as I deal with the numerous issues faced when operating on a larger tumor. I hope this will help people facing my ordeal.

Category:

People & Blogs

Tags:

• Acousric
• Neuroma
• Bran
• Tumor

[Simp44]

Oh I forgot to mention that I'm also 36.

[JohnnieD72]

Sorry to hear about your situation, but you should definitely look on the bright side. Problems like mine only occur is the tumor is large, and your is around half half the overall mass of mine. That threshold seems to be debatable depending on the surgeon, but most considered mine to be just over that invisible line that causes all of this unpleasantness after the surgery. It sounds like with the right surgeon, your may be extracted with much less severe problems. Best of luck to you.

[Simp44]

Thank you for this although it freaks the crap out of me.I found out 6 months ago that I have a 1.1 2.1 1.1 AN.I'm waiting for the results from my second MRI now.Keep making vids,Ill probably make some myself.

[JohnnieD72]

One thing I would suggest to anyone undergoing surgery and is worried about the potential sever pain I am going though would be to ask the surgeon if the surgery will require damage to the neck muscle. There is another technique that goes straight through the ear and would not cause any of the pain. That one guarantees loss of hearing, but the chance to save hearing seems much more minimal than the surgeons admit anyway. In retrospect, I would have pushed them to do that surgery instead.

[SteffanLlwyd]

You helped me here a lot, Jonnie. I'm trying to make a decision, around my much smaller 11mm neuroma but which is producing similar symptoms to your's. Mmmm tough call.

Your a brave guy, telling it like it is. I got more from your video than from my specialists (a neuro surgeon and a radio surgeon).

I'm looking farward to your next vid, and wishing you the best. Is your employer supportive. I'm worried that getting treated will mean losing my job (which is in the UK).

[JohnnieD72]

Best of luck to you. I have many times I wonder if I would have been better off not doing anything, but considering the rather rapid onset of hearing loss and double vision, my future looked pretty grim if I did nothing. Unfortunately, what would have happened is all theory, and living with these results is the reality. I have the best boss in the world, and my company has been awesome, giving me all the time I needed. I am back on the job now, and all is well on that front. I wish you the best.

[Simp44]

@JohnnieD72 I went with the Retrosigmoid Approach & yeah...my neck is pretty screwed & they didn't save any hearing on that side but I'm doing alright considering.It was 2....something(large) by the time I had surgery.I almost wish I took your warning but I had to try.I'm going to try the medication you mentioned in your more recent video.Be well my friend. check out the FB page ACOUSTIC NEUROMA Friends

[soho2014]

I am so sorry to hear all of this.

[iiIIjordanIIii]

i'm really sorry :(

[pattinyc510]

God bless you! Feel better :)) You look great in this video.

[SteffanLlwyd]

@sojumedic34 Thanks for your kind comments. At the moment the dizzyness, tinitus and lack of energy is a bit worse but the AN hasn't grown so the recommendation is still 'watch and wait'. Like you I find it really annoying not to be fit, but the funny thing is I don't feel any less happy about life as a whole. If someone asks 'How are you doing?' the answer is always the same: '7.2' (out of ten)! All the best now.

[sojumedic34]

@SteffanLlwyd hi there, im 37 and have an around 9mm-12mm AC myself. these videos are very helpful for me. i know everyones outcomes are different but its still scary to think you'll never be the same. im very physical as far as the gym and sports. this is going to suck. but, it can be far worse i suppose. i wish everyone a full recovery. ill pray for you all.

[slapshot12891]

i appreciate the video man

[Simp44]

@JohnnieD72 I just had my surgery on Tuesday(it's Thursday) & I'm doing great.Ryojo Akagami & his team are ninja.I also had the sore neck surgery with no luck on the hearing.Aside from my head feeling like a lead ball on a swivel & being on a small boat in very rough seas I'm almost ready to go home.I posted some short vids.I hope you're doing well,just going to check if you made recent vids now.

[kelli1000]

Dear Johnnie, how are you doing now? I had the same surgery and radiation! The recovery has taken me Sooo long! My love and prayers are with you. Thank you for sharing your experience! kelli

There is life after this surgery~ it just takes time. And the tinnitus ugh!