Any regrets?

[up-all-night]

Background:Confirmed right 4cm cerebellopontine angle acoustic neuroma March 2012.  Advised to have surgery; I want to watch and wait. I noticed mild hearing loss 2 years ago when I started using hands free device with my cell phone while driving. Didn't think anything of it as I am over 50. Then 18 mths later I noticed some numbness around my hairline on the right. I self diagnosed an acoustic neuroma based on those symptoms (ICU nurse >20yrs-WORST PATIENT EVER!) but I wasn't concerned because I thought of AN as no big deal. The general plan for most people is to watch and wait so I thought I would do that. I knew I should see a neurologist to be on the safe side but I was not alarmed. Six mths later the entire right side of my face became suddenly numb-like I had Novocaine that was almost worn off. Still not alarmed but I made an appointment with a neurologist I work with, going into her office saying "I'm pretty sure I have an acoustic neuroma so I would like to have an MRI to be on the safe side". Had it done that day-to my surprise it was quite large and had already advanced to my brain stem and there was a slight shift. I FELT FINE. Referred to neurosurgery at John Hopkins (lucky to be local), have seen two neurosurgeons who recommend surgery-the 1st recommends within 2 mths, the 2nd within 4 mths. Not a candidate for rad tx because of swelling risk, watch and wait not recommended due to size and location. I expect total hearing loss and am aware of the potential complications but it appears from the post op comments here I have a significant risk of facial paralysis. I feel fine and am having a hard time committing to surgery while I am asymptomatic when surgery is going to change that. Sure the tumor will be gone, but at what cost. Is it worth it? In my experience when a surgeon sees something out of place they want to remove it. Is it really necessary? Has anyone died from leaving an AN alone? I have asked the surgeons these questions without a clear answer-my symptoms could get worse, I could die from complications of brain stem compression. Many people live with AN not even knowing they are affected-it is found on autopsy when they die from an unrelated condition! So my question is to real patients who have gone through this is:How many of you feel that the condition you are in after surgery compared to how you were prior to surgery is worth it? Do you wish you had watched and waited? Do you regret having surgery? 

[Tod]

No regrets whatsoever. My tumor was slightly larger, left-side CPA, and I was 48 when I diagnosed. All the docs were very clear that I had three to six months to have surgery or face coma and death. As far as "Watch and Wait" meant "Wait and Die." This was not an option for me.

I had a very long surgery because the tumor is nicely planted on the artery and is deep and difficult to get at it. Two years post surgery I went through six weeks of radiation. Along the way, I lost my voice and found it again. I have some facial movement disorder and synkenesis, but the normies generally can't tell.

On the other hand, I am healthier and fitter than I was, and 50 lbs lighter. I also don't carry the anger and irritation I had constantly. I believe all these things were wrapped up in the results of the severe compression of the brain stem. Maybe I'm wrong. On the other hand, I am not wrong about the fact that my life is much better now.

-Tod

[pjb]

Background:Confirmed right 4cm cerebellopontine angle acoustic neuroma March 2012.  Advised to have surgery; I want to watch and wait. I noticed mild hearing loss 2 years ago when I started using hands free device with my cell phone while driving. Didn't think anything of it as I am over 50. Then 18 mths later I noticed some numbness around my hairline on the right. I self diagnosed an acoustic neuroma based on those symptoms (ICU nurse >20yrs-WORST PATIENT EVER!) but I wasn't concerned because I thought of AN as no big deal. The general plan for most people is to watch and wait so I thought I would do that. I knew I should see a neurologist to be on the safe side but I was not alarmed. Six mths later the entire right side of my face became suddenly numb-like I had Novocaine that was almost worn off. Still not alarmed but I made an appointment with a neurologist I work with, going into her office saying "I'm pretty sure I have an acoustic neuroma so I would like to have an MRI to be on the safe side". Had it done that day-to my surprise it was quite large and had already advanced to my brain stem and there was a slight shift. I FELT FINE. Referred to neurosurgery at John Hopkins (lucky to be local), have seen two neurosurgeons who recommend surgery-the 1st recommends within 2 mths, the 2nd within 4 mths. Not a candidate for rad tx because of swelling risk, watch and wait not recommended due to size and location. I expect total hearing loss and am aware of the potential complications but it appears from the post op comments here I have a significant risk of facial paralysis. I feel fine and am having a hard time committing to surgery while I am asymptomatic when surgery is going to change that. Sure the tumor will be gone, but at what cost. Is it worth it? In my experience when a surgeon sees something out of place they want to remove it. Is it really necessary? Has anyone died from leaving an AN alone? I have asked the surgeons these questions without a clear answer-my symptoms could get worse, I could die from complications of brain stem compression. Many people live with AN not even knowing they are affected-it is found on autopsy when they die from an unrelated condition! So my question is to real patients who have gone through this is:How many of you feel that the condition you are in after surgery compared to how you were prior to surgery is worth it? Do you wish you had watched and waited? Do you regret having surgery?

Wow I just had to comment your statement as an AN no big deal ? I had surgery for a 1 cm because I did not want to be worried about it constantly it is a brain tumor yes benign but can cause problems if it grows and did not want to take that chance. Yes I am sorry I had surgery only because I did not choose a good team of surgeons if I had to do it over again yes I would but with a different team...If you are afraid of the facial nerve others will chime in they can debulk it I think they say as much as they can and then choose to leave the rest or have radiation or FSR which Jim has had and is doing great and I am sure he will respond to this. So there are many options but to leave a 4 cm tumor I personally would not. Yes they probably cause death but there is a chance no one ever known because maybe an autopsy was never performed just a thought

Good luck with whatever decision you choose..

Best Wishes,

[opp2]

I'm glad that you are asymptomatic and that you aren't going through what some of us have. I am sad that you have an Acoustic Neuroma. I am also sad that you may be acting in a very professional manner to your own tumour. As if you were treating a patient of yours.

My Mother is a nurse, I am a police officer. I know that we can exclude ourselves from the reality of life. Be careful of that.

[alabamajane]

regrets?? sure, getting an AN,, then ,, in MY case,, in hind-sight,, I regret watching and waiting for three years as symptoms increased/changed.. mine was only 2.7cm when operated on,, much smaller than yours,, but location was very similar to yours, enhanced into the CPA with brain stem compression at the end.. I had great hearing,, some problem with word recognition,, but not much, , had tinnitus and ear fullness.. developed dizziness and some balance issues in those three years
also developed numb spot on tip of tongue and some facial numbness/tingling... also by surgery ,, I was having pretty severe headaches especially when I would try to move,, laying down was much more comfortable.. so ,, yes,,  I regret waiting until symptoms increased.. by surgery time,, I had translab which took 11 hrs due to depth of tumor and ended up wrapped around facial nerve so it had to be taken too.. so I have facial paralysis and a gold weight in eyelid to help it close,, which was done in a second surgery 4 days after the AN surgery... hard journey to say the least.. but one I "found" myself in due to the AN. and for me radiation was not an option ( and probably won't be for you as it is already so large)  ... as I have said in the past,, this surgery is not for wimps! This is NOT  said to scare you in the least,, you asked for our thoughts and experiences,, I know there are many on here who are w&w for several years and all is well.. and if that is what you decide to do,, that is definitely your call,, I did it too for several years. .. but in my NON-medical world,,, the location of yours much less the size,, you will be advised by most if not all Drs. to have the surgery sooner rather than later..."messing" with the brain stem is serious stuff...
Send your MRI and auditory test results to several Drs that will provide free, no obligation, phone consults and get more medical advice to help you decide.. I sent mine to House Clinic in LA, CA,, they are "world renowned" Drs. and have provided many on here with another opinion.. I talked to one Dr out there for two years,, he suggested surgery in 2009,, and I "talked him out it" and asked if w&w would be "ok" and he conceded,, the next year it had grown such that he said surgery was necessary due to brain stem compression ,,
I don't regret having the surgery,,    I HAD to in the end,, I was not happy to have to do it,, but had no "real" choice,, it had to come out..they don't "usually" shrink much on their own and won't go away on their own..I was definitely not happy with facial nerve involvement,, would it have been the same result had I not w&w,, who knows,,,  and like some have said,, there are Drs who will leave sliver of tumor on that nerve and follow up with radiation,,  that may be another option for you if that nerve is involved,, but I think,, MY opinion for what that is worth,, 2 cents MAYBE,,,,, you need some other Dr opinions to help you decide on treatment options,, and w&w may work for you,,, good luck,, I wish you well on your journey,, keep asking for advice,, there are many folks on here and we have all had different journeys,, and your will be too.... our best wishes come your way,,, Jane

[mk]

Hi,

I understand how you feel being mostly asymptomatic, and facing the daunting prospect of surgery and its side effects. I was pretty much like you, asymptomatic other than the facial numbness which prompted me to get an MRI and diagnose a 2.8 cm AN. Like you I didn't like the idea of surgery at all, knowing that most probably I will be worse off after surgyer, and I opted for GK (the size of my AN was borderline).

Long story short, the AN continued to grow, even though at a very small pace. By the time I had surgery, it had reached about 3.3 cm, it was almost starting to  cause hydrocephalus, because it was compressing my 4th ventricle and affecting a lot of the other cranial nerves - nerve 6, which caused some troubles focusing my eyes and I was told that it was touching the 9-10-11 complex.  Once hydrocephalus happens you find yourself in an emergency situation, and then the first neurosurgeon who finds you in the ER may have to do your surgery. Something that you clearly don't want to happen. When the AN touches the 9-10-11 nerves, then it is more likely to have swallowing problems after surgery. And of course you realize the brain stem implications.
I don't want to scare you with horror stories, but I am trying to be realistic. 4 cm is very big, and since it has reached this size it is unlikely to have stopped growing. The reason why you don't have symptoms is that is was so slow growing that your brain adjusted. This happened to me too. Since you don't have pressing symptoms right now, take advantage of this by researching to find the best team that you can have access to for this surgery. Read this forum, try to figure out what is the record in AN surgeries of the surgeons at John Hopkins (or wherever else). 
Remember that in spite of the size you can have an excellent outcome at the hands of an experienced team - there are many approaches nowadays, like debulking followed by radiation, leaving a small sliver of the tumor etc.
Do your research, find the doctors that you are more comfortable with and you won't regret your choice. Don't be pressured into having surgery right away if you are not confident about the surgical team. But like I said before you don't want to find yourself in an emergency situation, because you won't have this choice, so be proactive.

Marianna

[LakeErie]

I, too, had a large tumor, almost 5 cm, and had brain stem compression with a shift in my fourth ventricle as well as cerebellar compression. I had two opinions on the same day, Aug 22, 2011. Both
surgeons told me I had to make a decision soon. I did not have 5 or 6 months, I needed to tumor out in 5 to 6 weeks or I would require a brain shunt to alleviate build up of CFS. I had no problem with having surgery right away and it was done about 6 weeks later.
I have no regrets about the surgery. I " lost " the cochlear and both vestibular nerves. The facial nerve was preserved anatomically and functionally by leaving some of the tumor on the nerve at the entrance to the IAC where it was too adherent to the nerve to remove safely. I was House-Brackmann grade 2 after surgery and was back to grade 1, normal, in 10 days in terms of facial function. My lower cranial nerves were involved as well and I experienced difficulty with both swallowing and speaking immediately following surgery for months, but those issues are improving steadily.
My surgeon feels there is a "good chance" - his words - for regrowth of the residual tumor and gamma knife will be his recommendation if and when there is regrowth. The surgical transcript reads: aggressive subtotal resection of large vestibular schwannoma consisting of 95 - 97% resection. But, the surgeon does say there is no way he can predict that the tumor will grow, and if it does , when. I will have an MRI in Oct to check the tumor size.
Again. no regrets. The larger the tumor gets the greater the chance it involves more surrounding structures - nerves, vein compexes, arteries, the brain itself. My tumor required dissection from cranial nerves 5 through 11, excluding number 6 for some reason, the petrous vein complex, a cerebellar artery, the trunk of my vertebral artery, and my brainstem and cerebellum. I believe it is better to remove tumors when they are smaller. Good luck

[MDemisay]

Dear Up All Night,

Welcome, I had had brain surgery in 1974 to take out 3 AVM's (lasting 12 hours) so I was traumatized at having surgery again. I had 14 medical opinions and spent a whole summer researching I went to the best and explored all my options, I wanted to avoid surgery. Your tumor is larger than mine was though(my tumor was 3.1 cm) I had it debulked to save my facial nerve.  I am Single sided deaf and walk with a cane, but I am still doing my job! I had one of the 14 doctors tell me that I could go with Gamma Knife radiation but he didn't have much experience with my type of targeting CT scan so I ended up with surgery again!

So, if you're thinking of operating get it done. In my humble opinion, your tumor is too large to watch and wait. I agree with one other poster here please consider to Watch and Wait is reserved for other smaller tumors in your case it's wait and die.

Mike

 Ps.I also am in the health care field, I am an Executive Director of a Nursing Home, I also have a New York State Administrator's License. Surgery is frightening!
You'll get over it!

There are people here that will help you get through it (including me). Please act now, just because you are a nurse doesn't make you immune. I was a bad patient as well. I had everything to say about the way I was treated. Believe me it helps to see things from a patients point of view sometimes!

[pjb]

Dear Up All Night,

Welcome, I had had brain surgery in 1974 to take out 3 AVM's (lasting 12 hours) so I was traumatized at having surgery again. I had 14 medical opinions and spent a whole summer researching I went to the best and explored all my options, I wanted to avoid surgery. Your tumor is larger than mine was though(my tumor was 3.1 cm) I had it debulked to save my facial nerve.  I am Single sided deaf and walk with a cane, but I am still doing my job! I had one of the 14 doctors tell me that I could go with Gamma Knife radiation but he didn't have much experience with my type of targeting CT scan so I ended up with surgery again!

So, if you're thinking of operating get it done. In my humble opinion, your tumor is too large to watch and wait. I agree with one other poster here please consider to Watch and Wait is reserved for other smaller tumors in your case it's wait and die.

Mike

 Ps.I also am in the health care field, I am an Executive Director of a Nursing Home, I also have a New York State Administrator's License. Surgery is frightening!
You'll get over it!

There are people here that will help you get through it (including me). Please act now, just because you are a nurse doesn't make you immune. I was a bad patient as well. I had everything to say about the way I was treated. Believe me it helps to see things from a patients point of view sometimes!

Well said Mike I too worked for a Nursing Home in the Accounting Department are you still working?

PM me as to which Nursing Home what a small world..

Best Wishes,

[Jim Scott]

Up-All-Night ~

Regrets?  None. 

I suffered with increasing symptoms; (loss of equilibrium, total loss of unilateral hearing, loss of the sense of taste, intermittent stabbing pain at the AN site, fatigue) for almost six months until my wife insisted I see our PCP.  I did.  He ordered an MRI.  the result: a 7 P.M. phone call from my doctor informing me that the MRI showed a large - 4.5 cm - AN.  A few weeks later I was being wheeled into an OR for tumor de-bulking surgery followed, 90 days later, as planned, by 26 FSR sessions.  The surgery was very necessary and very successful, as was the radiation.  I suffered only a few very minor and transient post-op issues.  Today, 6 years later, I'm doing great!

My very AN-experienced neurosurgeon explained to me that the large tumor was impacting my brain stem and that he was surprised that I still functioning as well as I did.  This reserved, courtly doctor added that if I didn't address this situation, it would kill me.  I believed him.

Like you, my thought on The Big Day were that I felt O.K. and wondered if this was the last time I might feel this good.  It wasn't. 

Please don't procrastinate or seek justifications for doing nothing because of the 'what-if's'  As a medical professional, you know that all surgery carries risk but in this case, it must be calculated and accepted.  Other patient's experiences, whether good, like mine, or not-so-good, should not be considered a template.  I'm sure you realize that, I just wanted to reiterate it along with the fact that I definitely do not regret undergoing the surgery and radiation.

Jim

[MDemisay]

Dear Up All Night,

One more thing, doing research always trumps regret!

 That said make a plus minus\pro con list of neurosurgeons from recommendations you'll receive from searching the physicians section of this website. Get started, times a wastin'! IMHO!

Mike

[Ned]

Up All Night, I would start interviewing as many surgeons as possible that have lots of experience with large tumors.  HEI would be the first I started with and would recommend you get going.  But, it is your decision.  Good luck.

[leapyrtwins]

Not one regret and I'm 5 years post op.

I don't have facial paralysis, but I am SSD.  Resolved that issue with a BAHA - have never regretted that either.

Jan

[stephSF]

No regrets, post op translab 3 months tomorrow.  I went to HEI with dr. Friedman and dr. Shwartz who are experts. It sounds to me like you are in a bit of denial as to the
Serious size of your AN and what happens as it grows even bigger. There are successful surgeries done everyday.  There are amazing outcomes.  I am, like many other survivors here, much healthier and happier now.  The stem compression was attributing to issues I had no idea until after the bulk of it was removed .  Icansee how I was before surgery compared to now. I encourage you to send your MRI to HEI and listen to them . They know the truth...good luck and Ido understand I fears.  I self diagnosed as well and I am not in the medical field.  I Amin the mental health field and I have seen people suffer worse because of debilitating fear And denial with regards to health issues.
Stephanie

[MDemisay]

Dear Up All Night,

I do have one huge regret, yes! That I didn't pay attention sooner and act sooner! You see if I had paid attention to myself and the fullness feeling in my ear in 2000. If I had "listened" to my body at this time, I might not have needed surgery in 2004. Also I made a mistake by not getting another primary care opinion.

But that was then this is now, you have us here and the opion of your doctor. Don't waste time please act soon!

We are here if you need support.