Bad News MRI Results

[macintosh]

Jen--

Although there are no guarantees with any treatment, radiation generally produces results that are at least comparable to the work of the best surgeons, with a generally lower rate of side effects, particularly on small tumors. I had radiosurgery a month ago on a small (7mm) AN. I was out walking the dogs that afternoon, and back to work the next day. I've had no side effects so far.

Some of the medical literature that helped me make my decision can be found at <pubmed.gov>, which is an index to scholarly medical articles. If you use the search string (acoustic neuroma radiosurgery>, you will see an index to articles on this topic. I found the articles by Friedman, Sheehan and Pollock particularly useful.

One point in the Friedman article emphasizes that the effect of radiosurgery on the facial nerve has been greatly reduced since the introduction of lower doses in the mid-1990s (without any reduction in the tumor control rate). Some of the more pessimistic statistics floating around will refer to studies that took place before this change. Although this study focused on people who were being treated for the first time, the principle should apply to those seeking followup treatment.

Good luck with your treatment. I hope it turns out as well as mine has.

Mac

[flier58]

Hi Jen,
I had cyberknife done  in Nov. 2007 on 2 cm AN.  I am quite pleased with the procedure however well aware that there is no guarranies that the growth will not reoccure.  There is a great site for patients where youwill find abundance of info re. CK, GK,
fractionated and one time procedure.  It has 2 very experienced and knowledgeable  MDs who answer questions.  Take a look at it www.cyberknifesupportgroup.org.
Thinking about you and your family.
Flier58   

[ppearl214]

Jen,

Try this thread as well;

http://anausa.org/forum/index.php?topic=3132.0

You already have a great start for those that have posted re: radiosurgery (I have to admit, I'm doing great as well, now over 10 mos post-Cyberknife, minimal side affects, 100% hearing retained and based on my last MRI 3 weeks ago, radiation is doing the trick)....... and hoping the thread I just posted helps as well as the other suggestions noted above.

Hang in there....
Phyl

[Jwh]

Hi all,

I haven't been able to speak with the neuro- surgeon about the exact size and location of the tumor.  From what I know it's approx. 10 mm.  I'll speak with the Dr. tomorrow. 

Of course now, my face feels tight and I feel my lip tingling...  Am I imagining this?  I know I'll know more when I speak with the Dr.  just wanted to get your opinions.  I'm nervous it's pushing on the facial nerve.
Jen

[ppearl214]

Jen,

Let's see what the dr says.... hang in there... I know the stress is getting to you and understandably so.....but as you can see, we are doing great out here... you need details from your dr's, and once you get them, then, you can take a VERY deep breath, note to yourself that it's going to be fine and grind your heels into the ground and take off with your chin up, knowing that you are doing everything right, that you are researching and most importantly, you have us to help you through....

Hang in there.... I know the stress can be difficult to manage with this anxiety going on.... but... I promise you.... we are going to help you through this

Phyl

[shoegirl]

Hi Jen,

I am so sorry you are having to face this all over again.  Don't quite know what to say.  I had CK in Dec 2005.  Thus far, all is good and I couldn't be happier with my decision.  If you have any questions I 'd be happy to share my experience with you.  Please PM if you are interested.  Also check out the cyberknife support group.

www.cyberknifesupport.org


Best Wishes, Suzanne

[Jim Scott]

Hi, Jen:

Allow me to express my empathy with the re-growth situation you appear to be facing. 

I would be very careful to establish the fact that it really is a tumor re-growth and not scar tissue.  MRI scans are not always all that clear.  You may want to consider sending the scans to the House clinic in Los Angeles for an 'outside' diagnosis.  Just a thought.

As for total tumor removal: that is rare and I think many surgeons think they 'got it all', but do not.  If only one tumor cell survives the surgery, well, you know what happens.  My surgeon never even considered trying for a total removal as my tumor was too big (4.5cm) and I was adamant about not touching the facial nerve, as I had no problems there.  Instead, he removed about half the tumor and I had FSR to kill the remaining cells.  I have been told that this approach has been almost 100% effective, to date.  Translation: no re-growth.  I'll be having semi-annual MRI scans this year, the first scheduled for April, then on an annual basis for 'a long time', according to my neurosurgeon.  It's worth it.

As your re-growth is small, you'll definitely have the option of radiation, which, as you know, is non-invasive.  While not complication-free 100% of the time, both CK and GK generally have a good record of success.  As always, do the research and do use doctors who are very experienced in both the process and using it to treat acoustic neuroma tumors.

Jen, you are in my prayers and have my best wishes for a positive outcome to this stressful situation.

Jim

[kat]

Hi Jen

So sorry to hear that your AN is making a re appearance after 6 years . I can only speak from the point of view of someone who has had GK  . The obvious difference from surgery is the fact that there is very little disruption to your daily life . I was back to normal within days and have felt pretty good ever since . The last MRI in December showed that the tumour has shrunk slightly which made me very happy indeed . My GK team here in the UK told me that they have a 97% success rate in stopping the tumour from growing or reducing in size . Of course after the GK you enter another wait and see period which can take up to 3 years to find out if the AN has responded to treatment . Because my AN has been pretty boring with minimal symptoms I have not found the waiting too stressful but having said that I still have another year to go to my next MRI scan .  Unfortunately there is not a treatment  available which guarantees 100% success . If you need any more info about the actual GK treatment day send me a personal message since I am sure that the procedure is pretty much the same here in UK as there across the pond . I really hope that it all turns out to be just scar tissue after all but if not you are with friends  on this forum who will give you all the info and support they can .

Best regards Kat   

[Jwh]

Thank you so much for responding to my post!!!  All your kind words help a great deal..  I went out with my friend today and felt so much better.  I took the day off from thinking about my regrowth.  (Boy did that feel good).

Jenb][/b]

[pearchica]

HI Jen: sorry to read about your regrowth- that's horrible. I think the whole AN thing is very tramatic especially on parents raising kids.  I know I was stressed out, but I only had my husband and extended family to deal with! Not babies to boot...

I have been very pleased with my CK so far- but I'm only a month out.  I really liked the 98% probablity that this would kill the tumor if that's of any help to you..take care and if at all possible, try not to let it take over your life completely (as I type rolling my eyes... hmm hard to follow one's own advise   Annie

[Featofclay]

Hi Jen,
As I read your post, I sit here in shock.  I am so sorry you are having to face this problem again.  Know that you are in my prayers as well as many others and that we are here for you. 
Jean

[lmurray69]

I had Gamma knife, There is a thead where you can see the prosedure done. It was for me on elong day.The only give me one shot. 4 hrs to prepare. line everything up and then they zaped it//THis is new here and they had only done a few. I as one of the few waited a year later and had surgery to rremove it. side effects, NO hair loss. no pain, I get really tired and have to lay down. MIne was done in feb 05. every place does it differant. so ask ?and till you feel this is the right decision for me..GOd bless Linda