FAST Regrowth of Residual Tumor

[jami]

Thanks for the update -- and I love your positive attitude!

[ColleenS]

I hope you are home and recovered. I have a story very similar to yours. My first surgery turned into 3. First I hemorrhaged from the stomach (2) and then the leak (3). My fragment that was left grew back in 14 months, so I had radiation last October. Now the bugger is growing again. I go back in April and we decide then what the next course of action is 

[golfguy49]

So sorry to hear this.  You have had such a rough go of it.  Any chance the CSF leak is causing the hearing problem on the right side?

[james e]

Prayers for you.

[chrisabbott]

Thanks everyone,

Prayers, mojo and kind thoughts - all works wonders for me.

I just got my head wrap off - what a relief!  Ears are not meant to be tightly bound - mine was sore before the wrap came off, and screaming tender for the first half hour after.  The area that was re-stitched looks a bit rough, Dr Bien said in effect, its like most of my incision is only 4 days old again vs 21 days since the surgery.  I'm used to being a quick healer so this feels almost like I'm letting the side down which is silly and fruitless so I'll eat some chocolate until I feel better.  My other surgeon Dr Dunn came over to look at the incision too - those doctors give me such personal attention and are so responsive, it really helps me feel better about this.  If I'm not leaking after I finish taking the diuretics in a few days, I should be good.  If the CSF builds up, then I may need a shunt but they are trying to avoid going down that road and I love them for that.

I have regained just a little hearing on the right - I can hear high beeps on some of my appliances, and can tell the difference between music and speech on the TV but not what anyone is saying.  Interestingly, I can tell what my GPS is saying about 75% of the time!  We're going to repeat my hearing tests in another week to see if there's been any change in the hearing improvements.  I don't feel I'm going to gain enough to be functional, but I do feel it is exciting that I may be able to take advantage of residual hearing in order to have some acoustic hearing with a cochlear implant. 

I have been blessed yet again with support from my beautiful friends and family - my son has been amazing, one of my doctors even said he would be very proud if his kids grew up to be as caring as him.  My sister flew from England to spend a week with me, at her husband's insistence that he didn't need her as much as me, when he'd just had radioactive isotope for thyroid cancer (he said he had a treatment, I had surgery).... a local friend stayed with me from 7am to 7pm the day of surgery and rushed out to buy dry erase boards when I lost my hearing.  And now, another friend is flying from California to spend a week with me in Oklahoma after they turn on my Cochlear Implant so we can have fun testing the implant in different scenarios and working through as much rehab as I can.

Boy am I ever wordy these days - sorry about that but glad I have good stuff to share too

[jami]

So glad to hear you are doing ok. You are in my thoughts.

[BigJoeBass48]

Hi Chris, thank-you for replying to my post on my slowly growing AN. Forgive me if I ask this question improperly, I am new to this site posting. So, you say you had 35% hearing loss and after surgery you had total hearing loss? My surgeon told me in 2017 that if I had surgery I faced 30% TOTAL hearing loss in BOTH ears! He had CK doc phone me who said I could live with this tiny AN for 20-30 more years (I am 62). I've heard horrible things about CK surgery. "Crawling, pulling sensations on side of face, partial sight loss in right eye CK surgery done on, horrific tinnitus, 4x worse than before CK surgery."

[chrisabbott]

Hi - nothing improper at all.  This is why we come here - to ask &/or answer questions.

So I started out with impaired hearing due to measles when I was a baby - that probably made it harder for me to notice that my hearing was getting worse on the AN/left side.  I noticed other symptoms like strange taste and then numbness in my face - but hearing tests showed that the tumor took the last of my left side hearing a couple months before I had my first surgery.

A few months after the surgery, I got hearing aids with a CROS picking up sound from the deaf side and directing it to my right -the right side hearing aid also enhanced my hearing so I was very happy.

A couple hours after I came round from the second surgery I had, my head suddenly filled with the loudest noise (sounded just like the massive emergency generators my office has) and I realized I couldn't hear what people around me were saying.  My post op MRI didn't show anything to cause it, and the surgery didn't go anywhere near that side - apparently I had secondary endolymphatic hydrops/sudden idiopathic hearing loss, could be a change in my CSF, its not common.  I did my own reading up and it seems more common following spine surgery, even then there are not many cases of this happening to an unaffected ear as a result of surgery elsewhere in the body.  So I don't think this is something for others to worry about, and I would question why you should have a 30% chance of losing hearing in both ears?  That merits an explanation &/or getting a second opinion.

When you say CK surgery - you mean cyber knife?  I ask because the radiation treatments aren't surgery - they say things like "knife" but there's no cutting.  (Pardon me if I'm stating the obvious).  It is true that many people find their tumors grow little if at all, but I also think that if CK is the only option discussed with you - I'd be inclined to seek another opinion (well if your next MRI shows growth I would).

I have another hearing test Wednesday to see if I have regained any more hearing, then MRI & meet my otolaryngologist, and cochlear implant feb 24th.  They're keeping me busy ;o) 

[chrisabbott]

Just thought I'd post an update:

I have recovered a little hearing, but it's of little value.  I can hear the indicator on my car if I wear a hearing aid turned up full. I can make out about 50% of what my mother is saying on FaceTime, again with hearing aid turned up also bluetooth connect to the phone, and if I have my finger pressing the aid into my ear.  This morning I had a pre-implant MRI - I heard a high pitched sound briefly, and that was all.  I'm sure most of you have had a brain MRI and know that for me to not hear almost all of it with no ear plugs, means I have doo-doo for hearing.  To be honest, I'm really sick and tired of seeing how many transactions I can't complete because they're all just a phone call away, and I haven't figured out a practical way to take a call unless my son is around to help.

So when Dr Bien asked if I had any doubts about getting an implant, I felt comfortable telling him to go full steam ahead.  I'll gladly take any positive mojo & well wishes on Monday 24th when I get my cochlear implant.