Surgery post-poned. Need some reassurance

[lamplight]

Hi
I'm a 30yr old femaile who has been reading the forum a bit since I was diagnosed early April with a 4cm acoustic neuroma. In March I had noticed a bit of hearing loss which prompted the diagnosis, otherwise balance had seemed fine and no headaches. I do have some minor facial numbness which I only noticed after it was pointed out to me (but not weakness).

I'm in Adelaide, Australia and will be having surgery on the public health system as my health insurance doesn't cover it. It's different to the US in that we can access free public health but wait times might me longer.

My issue is that when seeing the surgeons end of April I was told that it should be done asap - one said that he wanted it done within the month. I was booked in for retrosigmoid surgery Monday 31st of May which turned out to be probably the most stressful and horrible day of my life as surgery got called off that day (something more urgent came up - for the surgeons, not me!). I'm now booked in again, but not until 28th of June which seems like forever. 

I don't have any symptoms of something more siniister like hydrocephalus, but have started having those 'wonky head' feelings in the last three weeks.  Really, I guess that 2 months isn't that long to wait for surgery but due to the size, I'm just a bit stressed (worrying that if it is growing, how much more it will squash my nerves in a month). I'm just looking for some reassurance that other people with large tumours have had similar wiating periods and had good outcomes in terms of facial nerve preservation.

Thanks

[opp2]

Hang in there Kiddo. I know how bad it sucks to wait. I haven't had surgery canceled, but was told just recently that I wasn't going to have surgery in June because I wasn't an urgent case. It can be maddening. I can only imagine your fear, anger, frustration, exhaustion...

Cyber strength to you.

Nikki

[Jim Scott]

Lamplight ~

Hello and welcome to the ANA website forums.

I'm sorry to learn of your AN surgery postponement but if its any reassurance, I was diagnosed with a 4.5 cm AN in late May, 2006.  I had numerous symptoms (balance problems, loss of taste, etc) and the very experienced neurosurgeon I engaged wanted to perform debulking surgery within a week of my initial consult with him, he was that concerned about the size of the tumor.  Unfortunately, my pre-op testing discovered a large unexplained 'mass' on my liver which was thought to be cancer.  Although no one actually said that dreaded word, the inference was unmistakable.  My neurosurgeon, suspecting the worst, apologetically canceled my AN surgery.  I soon had a biopsy performed to determine if the 'mass' was malignant.  It wasn't.  The mysterious 'mass' turned out to be a hepatic hemangioma (a mass of blood vessels in the liver) which is not terribly uncommon and, because I was asymptomatic, does not require treatment of any kind.  My AN debulking surgery was re-scheduled for approximately ten days later.  It was performed on time and went very well with no real complications.  My symptoms disappeared immediately following the surgery.  I later underwent FSR to destroy what remained of the AN. That seems to have been effective.  Today, I'm pretty much back to normal.

Like you, facial nerve preservation was my foremost concern, pre-op.  My neurosurgeon (with decades of AN removal experience) advised that I undergo a tumor de-bulking procedure, which 'guts' the AN (my 4.5 cm AN was reduced to approximately 2.5 cm) and cuts off it's blood supply.  This procedure also avoids disturbing the facial nerve any more than necessary.  It worked for me; practically no post-op facial issues.  The radiation (90 days later) is intended to destroy the remaining tumor's DNA and effectively 'kill' it.  So far, so good.

Every AN patient is unique and I can only offer you my experience but if your symptoms haven't drastically increased, I doubt that a 30-day wait will have a significantly negative impact on your cranial nerves being impinged by the AN.

Jim

[kiwi]

Hi lamplight

I too had a large tumour and had my surgery postponed twice due to surgeons having other important people to deal with.  I also had to go on our public health system due to my insurance not covering my tumour.  They said I had a pre-exisiting condition....yeah right!  Anyway I fully understand what your going through as I am from NZ and we have similar systems.  I agree with Jim, I don't think the 30 day wait will make much difference.

Jacqui

[Lizard]

Lamplight,
Hang in there, I know it feels like forever, and it must be so frustrating to be prepared, and mentally ready for surgery and have it canceled at the last minute.  The 28th is only three weeks away, enjoy some time with your loved ones, doing things you really enjoy and hopefully it will help to keep your mind off things.

Welcome to the forum and please express any concerns, questions, gripes, fear and whatever else you want, we're here for you and you will be in postie land before you know it.
Take care,
Liz

[kenneth_k]

Hi Lamplight.

I'm sorry to hear you had your surgery postponed. Yes, that is indeed a stressful experience.
I just have had CSF leak repaired by the use of a lumbar drain. The procedure was postponed one day, because they had forgotten to book a timeslot in surgery.
I nearly lost it, so I truly sympathize with you.

I hope you can get comfort from friends and family in the waiting period. I strongly believe, that you will get through this and that the doctors know what they are doing.

Best regards,

Kenneth.

[mandy721]

Knowing that acoustic neuromas are very slow growing, the wait shouldn't be a problem, but having to deal with the pyschological effects of the postponement must have been horrible.  Gearing oneself up for this surgery takes a lot of effort and then to have it cancelled the day of is very distressing.  When it came time for my husband's surgery, I hoped that it would be postponed........easy for me to wish for that.  His symptoms prior to surgery were similar to yours and having surgery didn't seem that urgent, but we were also told that it needed to come out soon.  Do take care of yourself and try to enjoy  the time before surgery. 
Miranda

[lamplight]

Thanks all
This does actually make me feel better. Although I called the admissions office today as hadn't had any confirmation for the 28th and they said I was only pencilled in at this stage - another big surgery may go ahead instead! I suppose I've just got to prepare myself for the possibility that this one could get cancelled as well. Would be nice to get a date and be able to stick to it but I guess unfortunately that's not the reality of the public system....

[HeadCase2]

Hello Lamplight,
  Being bumped out for the surgery date happens in the American medical system too.  My surgery was moved out one week when a more serious case took preference.  When you're mentally prepared for the surgery date, it's stressful when it's rescheduled.  But I would rather be the less serious case       Thankfully AN is slow growing.  Your surgery date will arrive soon.    Good luck with your treatment and recovery.
Regards,
  Rob

[lamplight]

Just an update.  I've survived the month with my sanity (barely) intact and it looks like surgery will happen next Monday 28th - although with the proviso that anything could happen over the weekend. So I've finished up at work for the second time and have my fingers crossed.
If I'm not on the forum ranting and raving on Monday then it has gone ahead...

[Jim Scott]

Lamplight ~

Thanks for the timely update.  Assuming your AN surgery is performed as scheduled, I wish you great success, defined as effective tumor removal with no significant post-op complications, followed by an uneventful but rapid recovery.  Of course, should the surgery be postponed again, feel free to post a volatile rant - because, at that point, you'll have earned it - the hard way.

Jim

[Tod]

Good luck on Monday, Lamplight. I do hope and pray all goes well for you.

-Tod

[Mickey]

Many prayers are with you for a healthy and speedy recovery! Mickey

[mandy721]

Michelle,

Lots of good thoughts heading your way for a successful surgery on Monday and easy recovery.

Miranda

[wendysig]

Hi Michelle,

Sorry I'm coming in so late but I hope your surgery goes off tomorrow without a problem.  I know how nerve wracking delays can be.  I'm sending you wishes for no more delays and a smooth and uncomplicated recovery.  Will someone be posting for you to let us know how you are?

Best wishes,
Wendy