Suboccipital Craniotomy

[TerriH]

Hi.  I have been watching a 1.7 x 1.5 cm. neuroma for 10+ years with no change in size. Recently, the tumor showed growth to 1.8 x 1.5.  Not significant, but there is a interval increase in the size of the more inferior component, having gone from 0.7 X 0.6 cm to 1.2 x 1.0 cm.  A follow-up audiogram was done and there is hearing loss in the higher pitches.  I have tinnutis but can still converse on the telephone using the affected ear.  My doctor wants me to undergo a suboccipital craniotomy - says it's not urgent but he wouldn't wait too long.  I'm going for a second opinion next week but have some questions that I thought might be answered by this forum. 
1)  Has anyone "watched" a tumor of this size?  I'm basically asymptomatic and am hesistant to "rush" into surgery.  I'd like to wait until at least June but am slightly afraid to risk future growth.
2)  If you've had a suboccipital  craniotomy, how was the procedure for you?  How long was your hospital stay? Was it painful?  How much hair was shaved?  How long was your recovery?  I babysit my 9 month old grandtwins and they weigh just shy of 20 pounds.  How soon will I be able to resume babysitting?

Lots on my mind - anxious about it all.  Any responses from someone who's "been there, done that" would be appreciated.

[staypoz]

Hi, TerriH.  I can't speak to your first question, since I had my surgery shortly after I was diagnosed.  However, I did have a suboccipital craniotomy, sometimes referred to as retrosigmoid.  I am not a medical doctor, but I understand that that this approach is the preferred one to try to preserve hearing.  Also, surgeons tend to have their own preferences.  I am glad that you are seeking a second opinion so you can be assured that you are making the best decision you can with the information you have available to you.

Everyone's experience is different, so keep that in mind as you read responses to your post!  I was in the hospital a little less than a week, but I did have a CSF leak (which can happen) and it was repaired while I was still in the hospital.  That extended my stay by a day.  I experienced no pain post-op.  I was nauseated and dizzy and wobbly for a bit, that that's part for the course.  Only a little of my hair was shaved at the base of my skull, and since I have medium-length hair, no one noticed because my hair covered the bald patch until the hair grew back.  I was out of work for about 4 weeks and then started back part-time at week 5.  For a while you won't be able to lift anything heavy, you will probably be pretty tired, and your balance may be off until your body heals.  There does seem to be a higher incidence of residual headache among those who have been operated on using this approach, but not everyone experiences that side effect. 

Good luck to you as you research your options.  Those of us who have "been there, done that" are here to support you.

staypoz

[Jim Scott]

Hi, Terri ~

I won't be so presumptuous as to advise you on whether or not you should undergo retrosigmoid approach surgery to remove your AN.  That is a decision that you'll make after consulting with medical professionals.    However, as a AN patient who underwent the procedure your doctor has recommended and because you asked, I can tell you that the procedure was not really painful because're under the influence of anesthesia during the operation but there can be some relatively minor (temporary) discomfort immediately following the surgery.  I found the full head bandage to be quite uncomfortable and practically begged my doctor to remove it, which he did, on my third day, post-op.  I was very fatigued for the first few days after my surgery but my strength began returning about the third day and I began walking the halls (on the arm of my wife).  by Day 5 I was anxious to leave the hospital  and was discharged that morning.  I took it easy the first week at home and slowly regained my energy.  I did a lot of walking to help regain my balance.  I had to avoid lifting anything over 15 pounds, as you probably will, so be sure to discuss that with the doctor you choose, should you decide to go ahead with the surgery.  Here is a brief animated explanation of the Suboccipital Cranitomy for your edification: http://www.atlantabrainandspine.com/subject.php?pn=animation-subcraniacoustic  I trust it will be useful to you.  Although I had a very good surgery experience - and many AN patients do - the outcome for any given AN patient's surgery simply cannot be guaranteed, by anyone, including the surgeon.  Too many variables in play - but the odds are generally good that even if some post-op complications arise, they'll be temporary and treatable. 

I'll close this post with the positive note that I was 63 (and in otherwise good health) at the time of my AN diagnosis and surgery.  Following the (9-hour long) debulking of my 4.5 cm tumor, I underwent 26 FSR sessions (90 days later) to destroy it's DNA.  They were uneventful.  The remaining AN shows signs of necrosis (cell death) and shrinkage, meaning that it is dying.  Good riddance!  I only hope that, should you choose to undergo AN surgery, you'll have an equally good outcome.   

Jim 

[Mark241]

Hi Terry, I think it's amazing that it has only grown that much in ten years! I had the surgery done in 06, I to delt with csf leaks post op. But over all I faired well, I was back to full duty (Police Officer) in 6 weeks. And resumed my work-out routine in 8. Had some facial weakness, and slight pain to the scalp area, but they resolved themselves within that time. I was fortunate not to have any headaches during recovery or since. The best part of the whole thing is that it's gone, for good. Good Luck and check out all the options before you decide.

[CHD63]

Hi Terri .....

I, also, did not go through the Wait and Watch mode as I had a rare rapidly growing type of AN.  Jim has given you an excellent answer to your question so I will not repeat any of that.

As Jim said some patients do have headaches following any type of brain surgery.  However, I am also one of those who did not experience any headaches post-retrosigmoid surgery for my AN.  I had a lot of dizziness but virtually no nausea.  The first 24 hours were very uncomfortable and rough but after that things improved rapidly.  I had no facial weakness, but I did have double vision for several days.  Pre-surgery my AN side hearing was tested at 80%, other side 100%.  Three months post-surgery (and each test since) my hearing is 20% in my AN ear but with 100% speech discrimination ..... meaning I have had excellent results with a Widex digital hearing aid in that ear.

The AN surgery was my second retrosigmoid surgery and both times (different neurosurgeons) I was instructed not to do heavy lifting for a period of time ..... to the best of my remembrance it was for  roughly six weeks.  You should definitely check with your doctor on his/her protocol.  In my opinion, it simply is not worth it to lift something too heavy too soon and risk a CSF leak.  I had no CSF leaks either time for which I am grateful!

Many thoughts and prayers as you go through this decision-making process.

Clarice

[sgerrard]

Derek has been watch and wait since 2002. His started out at 2.5 cm, and has actually gotten smaller over the years. So yes, people do sometimes watch and wait with medium sized tumors. You can read about Derek here: http://anausa.org/forum/index.php?topic=3791.msg137616#msg137616

It may be worth noting that treatment will not guarantee preservation of the hearing that you are starting to lose, although it works in some cases. As for surgery itself, there are lots of people here who have been through it and can fill you in on the likely outcomes.

Welcome to the forum.

Steve

[TOM101]

http://www.myacoustic.org/ GO TO INTERVIEWS WITH DOCTORS. DOCTOR CHANG
A UNBIASED ANALYSIS OF THE AN AND YOUR OPTIONS.

I WAS AT STANFORD YESTERDAY AND SPOKE WITH DR CHANG. I HAVE A 1.5 CM AND HAVE BEEN WATCH AND WAIT SINCE 2006.

ALSO CHECK OUT SKULL BASE INSTITUTE IF YOU INSIST ON AN OPERATION.

[leapyrtwins]

Hi, Terry.

I never watched & waited, but I chose a suboccipital craniotomy (aka as the retrosigmoid approach).

The standard time in the hospital is between 4 & 7 days - a lot depends on the side-effects you encounter and when you and your doctor are comfortable with you being released.

I experienced no pain - didn't take any pain meds - but had a stiff neck from being in a "strange" position for 7 1/2 hours of surgery.  This only lasted for a few days though.

Everyone's experience is a little different, so it's hard to say exactly what you'll run into post op.  I had nausea, double-vision (for 2-3 days), slight facial paralysis, and I lost the hearing in my left (AN) ear.

My doc, and most docs, only shaved enough hair as was necessary to do the surgery.  It wasn't something that most people noticed unless they were looking behind my ear, and by the time I left the hospital my hair was starting to grow back around the scar.

You will have restrictions on how much weight you can pick up post op for probably about 6 weeks and the twins might fall into this category (I can't recall the weight limit).  The only other babysitting "issue" you might encounter is fatigue.  It's very common to have massive fatigue post op - it's brain surgery afterall and it takes a toll on your body and your brain.  Also being under anesthesia for a long period of time adds to the fatigue.

I have twins myself, but they were 11 at the time of my surgery.  My mom stayed with us for about 6 weeks post op to take care of all of us - cooking, cleaning, driving, etc.

Jan

[cakulmom]

Hi,

I had my retrosigmoid 2-1/2 weeks ago--Nov. 30.  I was diagnosed in June, and waited until I had a window of opportunity for recovery.  So don't worry about waiting and seeking out the best place and time for your surgery.  You have lots of time.  Surgery--well, I went in pretty healthy (not overweight, blood pressure under control, etc.).  Had surgery on Tuesday; released on Friday.  Some nausea and vomiting post surgery which resolved within 48 hours.

 I was one of the unfortunates who had a difficult time with raging headache and then a reaction to the heavy duty pain meds.  Think they released me a day or 2 too early.  At day 2, I started to experience some facial weakness which they think may have occurred because I had an active herpes virus at the time (cold sore).  They tell me 1-3 months to get eyelid, weak mouth thing back to normal.  I haven't had any balance issues--seem to have had those pre-surgery and they resolved.

Don't know about the hearing yet...too early to test...seems to be gone, but least of my concerns at this stage.  Still quite tired.  I've been working about 2-3 hours a day this week and it wears me out.  The old gal ain't what she used to be.  I think you may have your hands full with toddlers if you anticipate doing too much too soon.

As you can see, everyone's experience is different.  This is a wonderful support forum who will hold your hand every step of the way.  Try to take the months ahead and get yourself in the best physical shape you can to withstand the rigors of surgery.

Enjoy those babies--that's what life is all about!

[Mei Mei]

I congratulate you on waiting ten years and preserving your hearing until now.

I however did not wait and chose retrosigmoid surgery right away.   My tumor was small like yours and I had the choice of getting Gamma Knife.   I lost all my hearing on the surgery side and get headaches several times a day.   I am currently seeking treatment for the headaches and neck pain and will get some sort of hearing device once the headache and neck pain issues are resolved.   My neurologist in DC and my nurse in Cleveland Clinic both made the comment that my tumor was small and I would have been better off with the Gamma  Knife.  I can't look back and will always wonder.

Sincerely,
Mei Mei