Many Questions

[joeyg]

Hello,

I am new to this group an have many questions regarding treatment of my AN. I was diagnosed in November and have surgery scheduled for Jan 7.

I am from Woodstock, GA and have chosen local surgeons at a local hospital. My AN at time of MRI was 13mm x 8mm x 9mm. The doctors offered me all treatment options including cyberknife. I have chosen a hearing preservation approach.

Here are some of my questions and/or concerns. Thank you in advance for your time to answer my questions.

Merry Christmas

Joey

1 - Is my AN small, medium, or large?
2 - When if at all did you go on disability for your treatment time. (I am a snigle father of a 8 yr old son)
3 - Doc is telling me I'll be down six weeks max. How accurate is that?
4 - Being single what is average time away from driving?
5 - I am an outside salesman for building materials. How long before I should expect to me able to be 100%?

I will stop at 5 I have a million more but maybe I'll add more later.

Thanks again

[Kathy M]

HI!  I'm a newbie too, so can't offer any advice other than you've found a great "home" and you'll be getting some great advice.  The folks here are like a warm blanket to me.  My surgery is January 13 for a large AN (mine is 3+cm), so I didn't have any choices but to have it surgically removed.  Good luck and stay plugged in to this wonderful group. Merry Christmas!!!!

[Joef]

First let me say Welcome from one Joe to Another! 

1 - Is my AN small, medium, or large?

    I would call it small

2 - When if at all did you go on disability for your treatment time. (I am a snigle father of a 8 yr old son)

   There is a percentage that go on disability .. but its small .. and even smaller with a small AN !
   (I would try to get someone to say with you the first couple weeks, ( mainly because , at least for me, I was asleep a LOT ...) to watch your son....

3 - Doc is telling me I'll be down six weeks max. How accurate is that?

    Six weeks is average...  I (with a big tumor) was not back to work for 8 weeks..(and I was pushing it for that)
      but I seen people at 2 weeks completely normal ..

4 - Being single what is average time away from driving?

    see above... its the average time... most are back to short trips to the store for milk type of trip in a few weeks...

5 - I am an outside salesman for building materials. How long before I should expect to me able to be 100%?

     100%? ,   its been 3+ years... I'm at 99% back to normal .. personally.. its good enough!.. actually some things are better, some are worse...

 

[Jim Scott]

Hi and welcome, Joey.  Sorry you have a reason to be here (AN diagnosis) but glad you found us.  With the understanding that every AN patient is unique and that we're not doctors, let me offer you my attempt at answering your very pertinent questions.

1.  Small.  Your tumor is approximately 1 centimeter in area, which is relatively tiny, as these tumors go.  Example: mine was over 4 cm.     

2.  Social Security Disability approval is difficult to obtain, as some of our members can attest.  It can take months.  You may need an attorney to assist you in the tedious process.  If you have a private disability plan, it might be a bit simpler.  With any luck at all, you won't be disabled.  You should be able to care for your son, although you'll definitely need some help during the first few weeks of your recovery.

3.  6 weeks for recovery may be a tad optimistic but again, recovery varies with every patient and is dependent on a host of factors, including whether you experience any complications relative to the surgery. Some AN post-op patients take months to return to normalcy but many only need 6 to 8 weeks. 

4.  Again, it varies.  I was given permission to drive (by my neurosurgeon) 2 weeks after my surgery...but I had few complications and an excellent recovery.  I can only hope you have a similar recuperation experience.   

5.  Ballpark guess - with no or few surgical complications - 6 to 12 months - but it could be much less.  I'm being conservative.  I did great but it was probably six months or more before I was truly '100%'.  Frankly, this surgery will leave you with a few deficits no matter how good your surgeon or how rapid your recovery.  Your balance won't be 100%, nor will your hearing (in most cases) and there are usually other small 'reminders' of your AN.  I have a few.  Nothing I can't ignore or work around and they're invisible to other people but even with my good recovery, I didn't end up exactly '100%'.  If you understand going in, that, post-op, you'll have to adjust to a 'new normal' (for you, considering your AN and surgery), you'll be O.K.  Many of us have gone through this and come out not only alive (the mortality rate is infinitesimal) but stronger in some areas. 

I'm not sure if these are the exact answers you're seeking and others may have a different take on these questions, but these are my answers.

Please stay connected here because we understand your emotions, concerns and hopes.  We've been where you are, today, and we want to help.

Jim

[sgerrard]

Hi Joey,

I just want to briefly clarify a little, in case you got the wrong impression from Joe or Jim. While recovering 100% can take a while, most people recover say 90% in the first two months. It is mainly fatigue that lingers on afterwards. Depending on your outcome, you might also have a lingering balance issue, or possibly a facial nerve issue. If the hearing preservation doesn't work, getting used to being deaf in one ear can take a while too. I hope you can get some help for the first few weeks, that is when you won't feel up to doing much of anything.

Welcome to the forum. Answering questions from the newly diagnosed is Job 1 around here, so fire away.

Steve

[Kate B]

Hello,

I am from Woodstock, GA and have chosen local surgeons at a local hospital. Joey

I will stop at 5 I have a million more but maybe I'll add more later.

Thanks again

Welcome Joey to the forum and Happy Holidays.

It looks the the Jim, Joe and Steve have answered your first five, so that means you are only left with 999,995 more!  No problem because the group loves to answer questions, so ask away. We also like to ask questions:-)

BTW,My own personal experience was to return to work after five weeks.

May I ask about your doctors?  How many AN surgeries have they done?  Which type of surgery have you opted for?

Kindest Regards,
Kate

[leapyrtwins]

Hi, Joey and Merry Christmas.

Everyone recovers from AN treatment - be it surgery or radiation - at a different pace.

Most docs say that 6 weeks is the general period for recovering post op and I found this to be true in my case.  I wasn't 100% back to normal in 6 weeks, but I was well enough to resume the majority of my normal, daily activities.

I returned to work part-time (half days) at 2 weeks post op and returned to work full-time after 4 weeks, but I have a desk job.  My biggest issue was fatigue and it lasted for a long time.  I didn't start driving until 6 weeks post op, but that was mainly because my mom was staying with me and my children so I really had no need to push myself to drive any sooner.

Being a single parent also (my twins are going to be 13 at the end of February) I'd like to recommend that you get as much help as possible.   Anyone you can get to help you in any way during your recovery will make things that much easier for you.  I'm usually pretty self-reliant and it was hard to ask for help, but when I did others were happy to pitch in and do whatever they could.  Don't turn anyone down.  You'll need lots of patience and lots of rest post op.

Feel free to ask as many questions as you want; we're here to help you.

Jan

[Syl]

Welcome Joey,

My AN was 1.5cm (borderline small/medium). I chose retrosig surgery to preserve my 60% word recognition. The nerve was preserved but I lost more of my hearing. However, facial nerve is not an issue.

I don't have children so I was able to stay with my sister and her family for 2 wks after my surgery. I couldn't have gone the surgical route without their help. My surgery was this past summer and my sister's 3 teen-age girls were out of school. So they were all pitching in--cooking for me, helping me with my laundry, driving me around. Like someone else mentioned already, don't turn down any offers for help. And don't be shy about asking for help, either.

I was out from work for nine weeks after my surgery. By then, I was already driving. I was part-time the 1st week back. It was tiring and difficult to concentrate, but I decided to go back full-time the following week. I strongly believe that returning to work helped me along in my recovery process. It made life feel more normal. It got me to focus on things that were not AN related--and that was a good thing because this AN thing gets a little old after a while.

It's been 6 months since my surgery and I still don't feel 100%. The fatigue is diminishing. The good days certainly outnumber the bad, but there are still times that I over-do it and end up feeling really tired for a week.

I hope this helps.

Syl

[cindyj]

Hi Joey and welcome!  I live practically around the corner from you in Cumming.  I am going to send you a PM with my phone number - feel free to call me anytime.  Who is your surgeon?

My tumor was roughly the same size as yours - mine was removed six weeks ago today!  While I'm not 100% yet, I feel quite close.  I started driving at 4 weeks, but probably could have driven sooner if I had needed to.  I am doing nearly everything that I did pre-op - haven't started playing tennis again yet, but I intend to get out this weekend to try to hit some.  Yes, I'm still a bit dizzy/unsteady/woozy (we call it wonky-head here on the forum), but it is not stopping me from carrying on fairly normally.  I am not scheduled to go back to work til after the 1st, but I could have gone back this week or last had I needed to.  But, as others have said, everyone is different and "results do vary."

Glad you found us and the best of luck next on the 7th.  Again, please call me if you'd like.

Cindy

[wcrimi]

The size of yours is similar to mine (small).

Here is a quick summary of my recovery so far.   

I'm 7 weeks Post -Op

The first 3 weeks I had someone with me, but was probably OK alone after 2 weeks. 

I was walking on my own a little on the 4th day and quickly got comfortable after that, though I occasionally used a wall or furniture for support.

I took baths the first 2 weeks and then graduated to showers again by the 3rd week.   

The 3rd and 4th week I started walking outside, first with someone and then alone. 

I started driving on local streets with light traffic at 5 weeks (to go to the store etc..). I still don't drive highways or very busy roads etc... but I'm getting closer to giving it a shot.  In some ways, driving is actually easier than walking because the dizziness (wonky head) I experience tends to be worst when I am active.  I mostly sit still when driving. 

I returned to part time work at 6 weeks.

My balance and hearing have been improving slowly each week, but I am still wobby and dizzy when active (especially walking fast or moving my head rapidly). I haven't done anything demanding athleticly (and doubt I could without falling yet). 


All along, I have had hissing, high pitched tones and clogged feelings in my ear on the operated side that come and go and vary in intensity, but it is slowly improving. (I had some very low  high pitched tinnitus before surgery)

Overall, the improvement is very slow and frustrating because good days are sometimes followed by bad ones and it's very difficult to measure progress. It is best to think about your early improvement in terms of weeks and not days.  You'll notice small positive things from week to week.

Everyone's experience seems to be different, but the more of them you read, the more you'll get a feel for what to expect. 

Best of luck!  You found the right place here.




 

[Sue]

Hi Joey,

Welcome to the forum.  Sorry you have to be here, but glad that you found us.  I can't help you much with your questions because I had GK (Gamma Knife) and not surgery and I was 60 and not working outside the home when I had my treatment.  I  can tell you though, that everyone is different and while the odds are in your favor that everything will go swimmingly, sometimes it does not, and there are no guarantees about any specific timeline.  As they say, individual results may vary.  My only word of caution is in your surgical team. Are they HIGHLY QUALIFIED and do they do this on a routine basis? If they say, Oh yeah, we did one last year....RUN!  Your recovery is as good as your surgical team.  You need to make sure they are the best that you can get.

My son had knee surgery and since he works for UPS he is a Teamster and he gets a weekly disability check from them.  If you have something like that, or your own personal disability insurance program, (Afflac or some such thing) then you can get some money to help you out. The SS Administration isn't going to be of much help at this point.  You have to be practically at death's door, and even then, you might not get it.

If you consider 100% being your healthy self before all this happened to you, then that's probably not going to happen, sorry to say.  You will have a "new normal" and that all depends on what you lose or gain.  You might lose more of your hearing, you might gain more tinnitus. You could have "processing" problems that might take a while to correct itself.  (Read the article about balance mentioned below.)  You will be tired as your brain learns to compensate because your balance nerve on one side is compromised.  You may have difficulty in stores, malls, crowds, etc for the same reason.  Some of these problems occur no matter which treatment option you choose, because it's still your balance nerve that's messed up.  That doesn't change.

Did your doctors even mention the possibility that you could be treated with radio-surgery?  It's another option for you, if you so desire.  Also, I would recommend you read this article about the balance system and how it works and what happens when something goes awry.  This explained to me symptoms I was having long before I ever knew I had an AN.  It might be helpful to you.

http://www.hearinglosshelp.com/articles/balancesystem.htm


Best of luck to you in your treatment and eventual recovery,

Sue in Vancouver, USA

[wendysig]

Hi Joey and welcome,
I'm sorry you have an AN but am glad you foujd us.  I think you will find our group a wonderful source of information, compassion and occasional hilarity. As for you concerns and questions:

I would consider your tumor smallis which is why all forms of treatment are available to you. 

Although some people do go on disability, it is usually those people who have had huge or multiple tumors (NF2) and major problems. 

Since you have an 8 year old son to care for, it would be a great idea to either hae someone stay with you to help out, or for you and your son to stay with someone for the same reasons.  You will find you need to nap a lot in the first few weeks, fatigue is a major complaint post-opl  You also should keep your head above your heart for the first six weeks or so, so no bending.  Most docs will recommend not lifting anything over 10 pounds for at least the first few weeks too.  The reason for both is to avoid the possibility of a CSF  (cerebral spinal fluid) leak.

I'm not sure there really is an average down time.  The thing about ANs and surgery, or any form of treatment really, is that everyone recovers in their own time.  My AN was 2 cm and although I really started feeling pretty good in three or four weeks, I stilll have some minor balance issues I am dealing with at 5 months.  Started driving at two weeks (small trips to the grocery store, etc.  probably no more than a mile or two)  By 6 weeks I was driving whereevr I wanted and that was great!

As for how long it will take to get back to 100% -- that is diffreent for everyone too.  We all heal and recover at our own pace.  Patience is key in recovery -- this experience is far from a walk in the park. 

Please continue to post and let us know how you are doing.  I see that your surgery is next Wednesday and you have my good wishes.  You will be in my throughts and prayers.

Sending positive vibes your way,

Wendy

[Keeping Up]

I can only really say welcome to the group.  I am a newbie but am waiting for awhile to see what this sucker does. 

Have you thought about just watching and waiting - I guess that would be my only suggestion.  You didn't mention any symptoms with your AN - but if minimal, have you thought about waiting for awhile to ensure you are happy with the experience of your surgery team or whether radiosurgery option is more appropriate for your lifestyle (as you have a young child and a single parent) or get a second opinion if you are in a smaller center.  I have been told that you shouldn't make a choice on hearing preservation because it mightn't happen (or a big chance it won't - will have to go back and check my stats from my doctor - 1 in 5 chance of saving your hearing (or at least useful hearing)), even if that was the goal to save the hearing.

Again - I have a small AN (5mm x 8mm) which is causing so few issues that I will hopefully not need to do anything for several years - but at minimum I think I have at least 12 months to evaluate all my options, with few to no downside risk of losing much else or at least noticeable muchelse. I plan to spend that time with serial MRIs, balance tests, repeat hearing tests and referrals to a radiosurgeon and neurosurgeon to see what they have to say about a small AN.  I also plan to pepper this poor crowd with way too many questions such that when it is my turn I have almost no more questions about the treatment, just the recovery.

Good luck.

FYI - I am 37 years old (not single) with four little kiddos - so I have even started contemplating my support network if or when I will need it.  It is a huge consideration.  I am also key income to this family so that is also part of the decision process (heck, I even looked up long term disability policy with my company just to ease my concern - it is good!)  Also, I am CAnadian so even I wanted this sucker out, it would probably take me 6 months to queue to the surgery.

[LADavid]

Hi Joey, from a former Woodstock resident (Eagle Watch), welcome.  As you will discover, there are no definites in the AN world -- a lot of averages.

I don't want to create any fears because the percentages are in your favor.  Your tumor is small.  At 1.5, so was mine.  But I didn't fair so well post op.  After surgery a year ago in December, I am still in recovery and physical therapy.  I suppose in normal circumstances, I may be able to work in another profession -- but I'm an actor and I developed facial palsy from my surgery plus extensive balance issues and a few other things.  I don't feel anyone should ever sugar-coat the potential outcome.

Fortunately for me, I was able to obtain Social Security Disability with little difficulty -- too many things were wrong with me, and due to the Screen Actors Guild Foundation -- my medical care and physical therapy have been continued even though I've been out of work.

If you opted for surgery, here are two things I would do to be on the safe side.  First apply for Geaorgia state disability insurance -- you'll be covered as long as you are out of work to some degree.  Second, I would arrange care for your child for at least a month.  You may find that you don't need help, but it's better to be safe.  In my case, I have found it to be very fortunate that my daughter is an adult and I have no one to take of but me.

Like I said, the percentages are in your favor and the estimates from the others are pretty normal.  But it's better to prepare for the unseen than to get blindsided like I did.

I hope that helps.

David