1 year post op

[palms0@hotmail.com]

hi all, just in need of opinions,(which i wish we would have done prior to surgery, but remember the dr's said this site was full of complainers and extreme results< WOW WAS THAT ADVICE WRONG , kinda funny when you think they hosted the symposium)
my husband's reto sig surgery was done 1 year ago on an 9mm an (what were we thinking???) @ jefferson hosp (yes the group who hosted the symposium) and since the 1st day post op has had a 4mm enhancing area that shows on an mri , so we are hoping that this is just DEAD TUMOR, but who can be sure? he had an mri every 3 mos since then it's 1 year later and still no change , hard to think they left anything behind when it was so small in the first place.
the neuro says get anothermri in 6mos, BUT HE WANTS TO RADIATE IT NOW JUST TO BE SURE ??
i say leave it alone which is what we should have done to start with. my husband has had facial palsy, and severe incision pain & headaches since he had the surgery every day the pain does not stop, his eye does not close and still uses tears during the day and ointment at night. he is on so many meds for pain that only lower the pain they do not take it away.
i guess you can tell we are just a TAD UPSET with this situation they put us in.
what would you do if this was your situation?
meb

[ceeceek]

Hmmmmm, tricky situation.
First thing I think I would do is consult for a second opinion......Is there reason that they feel immediate radiation is necessary?, I am assuming that you have a typical AN..or your hubby..sorry...and they are benign in nature and often will not continue to grow after a certain age....( However the more I read the more I tend to disagree with that theory..but personal opinion only).
So on to the point.....there are several types of radiation available,,,,Cyberknife, Gammma Knife, Novalis, Trillogy etc etc.
I recently had surgery for vidian nerve schwanomma...similar to AN only skull base..long story how I became member....but onward...the surgery was unable to remove all of my happy little tumor and it aggrevated many surrounding nerves....
Now, I do need to treat mine as it is up against my temporal lobe....but,,,,and here is the part that concerns you...
I was told to wait a while before continuing with radiation as the nerves are already irritated due to surgery...let them calm down before we go an re injure them again was more or less the common opinion by a variety of Dr.s..
Seems like a reasonable idea to me...So, I have treated my nerve injuries with acupuncture...VERY effectively,,,I had severe trigeminal pain, vidian nerve damage, and optic damage,,but after only a few months am at about 95% pre surgery....and some may be due to the tumor still pressing on the nerves vs surgical damage.
I will now follow up with CK in Late Sept..which has given me enough time to recover from the damage done from surgery...I am unsure if I would be ready at this time without the acupuncture treatments,,So I do Highly recommend it...
but all of my Drs were more than willing to wait for up to a year or more before I proceeded, so in application to your situtation, it seems like you have plenty of time to wait and watch....let the nerves calm down, and see if it ever even grows...
I wanted aggresive treatment as I am fairly young and the biggie..currently have health insurance, which I may not in my near future, so I opted to treat, versus watch and wait..but if you are not in that situation, I agree with Bruce....no need to hurry unless you just cant stand the idea of something in your head..and even then, if you want to treat with radiation, reseach the different types, and take some time...let the nerves heal first...radiation should cause minimum damage...but, it will cause damage.....maybe not permanent, and maybe not even noticable...but seeing that your hubby is already having problems,,I sure would not rush.....Get some more opinions...
Good luck and keep us posted.
Ceeceek

[Jim Scott]

Meb:

I'm sorry to learn of your husband's unfortunate outcome to what was apparently unnecessary surgery.  As you now realize, the doctor who slammed this website was sadly mistaken, to put it politely.  When I mentioned ANA and this website to the man who was to be my neurosurgeon, he told me it was very informative and casually mentioned that he was an ANA member.  That told me this doctor was informed and connected.  My hunch was correct.  He turned out to be an excellent, compassionate, caring neurosurgeon who did a very good job.  I had no post-op complications.  I only wish that more AN patients had this kind of doctor.

As other posters have already suggested, I would seek out a second medical opinion regarding the MRI results before I agreed to radiation.  Yes, radiation may be necessary but then again, it may not.  Only a qualified physician with experience in this field can made that determination.  I certainly am not qualified to even venture an opinion, as my own MRI scans are practically indecipherable to me, yet my neurosurgeon looks at them and can immediately point out what is what. 

I hope you and your husband will make the effort to get a second opinion regarding the MRI results before going any further with plans for radiation.   I trust that his pain and facial palsy/eye closure problem, will soon be resolved.  He has my prayers, as do you.

Jim

[sgerrard]

I can appreciate Jim holding his tongue, but like Bruce said, since you asked for opinions, here goes. I've only had an AN for two months, but I'm happy to say what I think, based on what I've read so far.

I agree with Bruce, a 4mm enhancing area that has been MRI'd 4 times in a year, and refuses to grow any bigger, sounds like the perfect situation for wait and watch. I've never heard of radiation being recommended "just to be sure", especially for something that small, benign, and dormant. If it shows growth at the MRI in six months, you can decide what to do then.

The only reason I can think of to treat now, would be if there was some indication that the 4mm residual was causing some of the current symptoms, and that treating it might relieve those symptoms. That doesn't seem likely to me, and I would want some second opinions on that before undertaking another treatment.

It is just unfair that your husband should be having such a tough time, you have my sympathy and hopes for improvement. If the pain medication doesn't help enough, maybe Ceeceek's recommendation of acupuncture might help. I don't know much about it, but I would consider it in his situation.

Best wishes, Steve

[linnilue]

Well, I'm with Bruce but with one caveat.  I would get a second opinion immediately.  And one not associated with that group or hospital because you want an honest unbiased opinion.  I too made the same mistake as you and I suffered for more than 2 years until I visited another doctor.  So, you have time to get another opinion and I would not wait.  Good Luck, Holly

[ixta]

Meb:

...When I mentioned ANA and this website to the man who was to be my neurosurgeon, he told me it was very informative and casually mentioned that he was an ANA member....

Jim

That's kinda scary knowing the possibility there are Neurosurgeons browsing in here.

[Jim Scott]

Meb:

...When I mentioned ANA and this website to the man who was to be my neurosurgeon, he told me it was very informative and casually mentioned that he was an ANA member....

Jim

That's kinda scary knowing the possibility there are Neurosurgeons browsing in here.

I don't find it scary at all.  A neurosurgeon who is an ANA member is obviously connected to AN patients and their problems and truly wants to stay well-informed.  We don't pretend to be doctors or dispense medical advice.  In any case, I seriously doubt that many AN surgeons have a lot of time to spend browsing the ANA website message boards. 

Jim