Getting ready for retrosigmoid

[cabram]

First of all thanks to all who reply  on this site, it's very usefull.

I'm 44, I started having the feeling of a clogged ear back in Nov.  MRI found an acoustic tumor (very smalll), at one point i did have facial paralysis on the left side along with the inability to close my left eye, had to tape it shut at at night and complete loss in left ear.  over the course of about 2 weeks the paralysis went away, my eye is fine and I can hear.
My Dr. said that this all can come back at anytime, so I decided on surgery vs radio, I didn't like the fact that I would have to have an MRI pretty much every year for the rest of life and knowing, something is still inside and is it  possibly growing, plus the slight chance of cancer.  Right now I'm scheduled for surgery on 2/13. I have read some replies that recovery tiime has been months, Dr. said I will be in hospital for up to 1 week and recovery time is a month. 

I've also been reading that radio will become the preferred method for treating AN's over time???

I'm just looking for some feedback.

THX

[jtd71465]

If it helps I had surgery January 10, 2007 and I am fully recovered.  I went back to work at the end of February and haven't looked back.  My surgery was 3.5 hours long (or short) and spent 3.5 days in the hospital before being dis-charged.  I hope you have the same experience as I did.  Feel free to send me a note if you want more information or specifics on my surgery or recovery.

Joe-

[cabram]

Now that's good to read !! congrads !!!

[Static]

Cab,
Everybody's experience is different.  I think a lot of it has to do with size and location of tumor.  The AN was on the larger side and pressing on the brainstem.  The surgery was suboccipital (or retrosigmoid) and was exactly 4 years ago today.  I was told the surgery was 11 hours long.  It took me a bit longer to recooperate than jtd.   I did expect to be deaf in my right ear and was, but the balance loss was unexpected.  I had to regain my balance which was totally gone.  That took me about 2-3 weeks to get rid of the walker and feel a bit more confident without constantly grabbing something and to this day, I still stumble at times, but nobody really knows unless I tell them!  I didn't have any facial paralysis and just a little dry eye which went away enough that I don't need drops.  My right eye doesn't tear, but that's really no big deal.  I was probably back to driving in about 6 weeks.  I did have to go back in the hospital in late April or early May (either can't remember or don't want to, not sure) for a CSF leak that was probably there for a couple of months and I kept denying, but I got plugged up through the mastoid bone and was out in a few days.  The test to be sure it was a CSF leak (because it was so long since the surgery) was probably worse than the actual surgery to fix the leak!  If you have any other questions, let me know.  I am not a doctor, this is just what had happened in my case.  You wanted some feedback, but don't forget, everyone is different.
~Karen

[cabram]

My tumor is 13 x 7.7 x 4.5 mm, the location is not in the auditory canal but on the ouside an to the left, this is why the retro approached was suggested by Dr.  I was told surgey would last about 3 hours, at this point time is not an issue as long as it's done right.

[leapyrtwins]

I had retrosigmoid surgery on 5/31/07 when I was 45; and today I feel wonderful.  I made a full recovery within the usual time frame (6 weeks).  My only side effect is SSD on my left side.  My AN was on the 7th and 8th cranial nerves and I had diminished hearing prior to surgery.  My surgery lasted 7 1/2 hours, but my AN was larger than yours.  I was hospitalized for 5 days, but mainly because I was severely nauseaus and didn't eat for a few days.  As a result, I was weaker than I should have been and I didn't walk enough to be let go after 4 days.  All AN patients are different and no one can guarantee how fast you will recover or what side effects you will have, but that "rule" can be applied universally to all patients.

One of the factors that made me choose surgery was just wanting to have the AN out of my head, so I can totally relate to your thoughts on radiation.  Surgery was the right choice for me, but others have found that radiation was the right choice for them.  I don't know what the preferred treatment over time will be, but you should go with the treatment you are most comfortable with.  Also, make sure that your doctors are well qualified and experienced in the treatment of ANs. 

Good luck; keep us posted,

Jan

 

[sgerrard]

I don't know that "preferred" is really the right term. For some ANs, radiation makes a lot of sense, and the range of tumors that are considered suitable for it has broadened as experience with the procedure grows. But I would bet that surgery will be around for a long time yet, and will be the better choice for a good number of situations. It is still case by case, it is just that radiation is "on the table" for more of them.

I wouldn't be so concerned about the MRIs, or the regrowth, or the slight chance of cancer. MRI rates drop off after the first few years, and are actually very similar to the pattern for surgery patients, who also get follow ups. Regrowth happens about equally with radiation and surgery, and is fortunately low for both. A malignant AN is so rare, each one is reported in its own research paper, and there are less than 10 of those, out of 10's of thousands of ANs. Radiation is not perfect, however. it takes a while to run its course, and the swelling that happens in the meanwhile can be troubling and sometimes damaging.

The location of your AN is not ideal, leading your doctor to recommend retrosigmoid surgery. If I were in your shoes, my main concern with that would be the possible damage to nerves, especially the facial nerve. Many people come through it just fine, and I certainly hope you do, but there are also cases of people struggling with facial nerve paralysis for months, and occasionally years. You should go in knowing the score. Still, if you know you want surgery, and that is the right kind of surgery for your case, then there is not much else to do but make the arrangements and have it done.

Just in case you are curious, you could try contacting one of the doctors on the cyberknife forum, and see if you can mail them a CD of your MRI for an evaluation. They may tell you to stick with the surgery, or they might say they think radiation would work out well for you.
http://www.cyberknifesupport.org/

Best wishes, Steve

[Boppie]

Cab, Your doctor will want to do follow up MRI for a few years after your surgery to check out his work and how the site looks on film.  But as others have mentioned both forms of treatment require follow up MRI's.  It seems you have checked out the details and you have a "big enough" small tumor that getting it out sounds like the best thing based on its proximity and impact on your facial nerve.  Good luck.  Keep us posted in February, please!

[Static]

Cab,
Your tumor size does seem small but I don't know a lot about cyberknife vs surgery.  The reason I chose surgery was twofold.  I didn't want anymore pressure on the brainstem and there usually is swelling at the site from the radiation.  Also because of the location and just in general, I wanted the tumor gone from my head.  I couldn't go on knowing, that dead or alive, there was a tumor in my head!  Again, it's a personal choice which was something that also hit me by surprise because usually, for me it's been no choices.  I had a perforated ulcer that had to be fixed, no choices there.  My babies were breach, csections were done, no choices there either.  So when I was given the choice, it threw me for a loop.  I had to make a major medical decision that I had to research and I had no idea about all this medical stuff, that's what the doctors were for, but in today's world, we need to be our own advocates for this stuff.  It was a new awakening for me.  You have to go with what you feel is right and live with it, which is a tough pill to swallow.  Pick a doctor you feel comfortable with and who has done alot of these surgeries, if that's what you are sure you want, and go forward, no looking back once you make your decision.  Same thing goes for if you make the decision to have radiation, just move forward with your decision.  I wish you the best with whatever procedure you decide to go with!
~Karen

[cabram]

Again, thanks to all for you comments.

I'm still on schedule to have it taken out on the 13th.  Right now I have no signs of AN, ( no facial,hearing or balance lost).  I'm just nervous that it all can come back at anytime.  Hopefully,by attacking this thing before anymore signs pop up is a good thing, plus like another poster commented, the everyday feeling of a tumor inside of you (dead or alive) will drive me nuts.  I want it out.

I have trust in my Dr.  I sent him an email to make sure I heard him right and he said excellent not good.  Here's the reply:

"I understand your anxiety and recognize the importance of your decision. You are relatively young with a small intracanalicular tumor. Your chances for the result that you seek are excellent"

[OMG16]

Hi Cabram I am glad you joined us here at the AN forum.  I wish you a great surgical experience and a very fast recovery and it sounds like your Dr is confident this will be the case.  Trust in your Dr is a first step.

I do have a few questions if you don't mind answering them.  What were you told the complications would be?  Did the Dr mean a full 100% recovery in 1 month?  Does your Dr recognize post op headaches, cognitive issues and balance problems as possible complications.  The reason I ask is my son has a different type of brain tumor so I am not sure what the usual complications of AN surgery are other that what I have read here.  I would appreciate it if you and others here could answer these questions so that I can learn a little more.  Kisses to your forehead.  16

[sgerrard]

My tumor is 13 x 7.7 x 4.5 mm, the location is not in the auditory canal but on the ouside an to the left, this is why the retro approached was suggested by Dr.  I was told surgey would last about 3 hours, at this point time is not an issue as long as it's done right.

I have trust in my Dr.  I sent him an email to make sure I heard him right and he said excellent not good.  Here's the reply:
"I understand your anxiety and recognize the importance of your decision. You are relatively young with a small intracanalicular tumor. Your chances for the result that you seek are excellent"

I a little confused. You said it was not in the auditory canal, but the doctor's reply says it is intracanalicular (in the canal). I guess I ask because location is usually an important factor in  the decision on which surgical approach to take.

Steve

[jtd71465]

Steve-

Please read the entire post, sounds like many reasons have been taken into consideration in making this very difficult decision.  Lets be supportive. 

Hopefully,by attacking this thing before anymore signs pop up is a good thing, plus like another poster commented, the everyday feeling of a tumor inside of you (dead or alive) will drive me nuts.  I want it out.

I wish you well and "I" respect your decision...trust me surgery is not as bad as people make it sound.  Again I am open to discussions about everything I experienced Pre and Post surgery.



Joe-

[leapyrtwins]

Joe is correct; surgery is not as bad as people make it sound.  It's definitely not something to take lightly, but there is life after AN surgery.  If, God forbid, my AN returned tomorrow, I wouldn't hestitate to have it surgically removed again if that was what the doctor recommended.  Call me foolish, if you'd like. 

[ppearl214]

Actually, everyone is right... size and location do "help" to determine best surgical approach, regardless of which surgical option is utlimately decided... and yes, this is a highly personal decision.  As we know, "individual results may vary"... regardless of which AN treatment options (microsurgical vs radiation/radiosurgery), we all know there are risks involved. We know of many that had surgery that have had good and not-so-good outcomes... we know of folks that had radio-treatments  with good and not-so-good results. I'm glad that Cabram is researching this carefully and weighing out all options that will work best for them.

Agreeing with Joe, we do respect final decisions, provide the best support we can regardless of decision as each decision is highly personal and best for that person.....  Cab has noted faith in their dr and I have faith in Cab to make the best decision possible for them.

Phyl