ANA Discussion Forum
General Category => AN Issues => Topic started by: Jwh on February 27, 2007, 08:13:07 pm
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Hi,
Unfortunately I've had a regrowth almost 6 years post op. I'm so upset I can't believe I have to go through this again. The size of the tumor is 10 mm. Please pray for me to help me through this difficult time. I need to be strong for my familly. I have a newborn and have to focus on him and my daughter.
How can this happen when the doctor told me he had removed the whole tumor?
Jen
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Hi, and so sorry to hear about the bad news..but seeing that the regrowth is so small surely you must be a good candidate for CK or GK? and that will not interfere with your life..including enjoying your new son and daughter.
Hang in there, it is one of the things I am scared of in regards to my various upcoming treatments....I see so many people have growths recurr....AUAUUHHGGGG is the only response..not sure what treatment you had initially other than surgery, but things have come a long way in 6 yrs..do a little research, and hang tough,,maybe this time it won't be as bad this time around....after all, you lived through it once...and now you caught it way early...
Ceeceek
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Jen,
I am so sorry to hear this.You are definitely in my thoughts and prayers!!!!!
Take care,
Lynn
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Jen
I am so sorry to hear about your regrowth. I hope that some of the non-surgical treatments can take care of it and let you continue life as usual.
Your case illustrates why we all need close follow-up. I know some MDs advocate lengthening the time between MRIs after 5 years, but you are proof positive that we need to stay on course. I am glad you found yours while it was small! Can you imagine if you had stopped last year and not gotten another MRI for a few more years!
Best wishes
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Jen,
So sorry you have to deal with the regrowth. The good news is that your tumor is small and you most likely have all of the options open to you, meaning both surgery ( I know you don't want to hear this word, believe me, I am in the same boat) and radiation. There is an incredible amount of information and support here for you. I hope everything will work out just fine!
Eve
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Jen,
Did the doctors tell you exactly where is the recurrence and what structures are involved? I am just trying to compare notes since I am further along into my regrowth. We were operated on at the same institution and share one doctor.
Eve
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Eve,
I received the phone call late this afternoon from Dr. Cohen. I was shocked that he was calling me since he has retired. I didn't get any specifics. I have to call Dr. Golfinos tomorrow and get all the details. I'm just in total shock considering for the past 3 years, I was told it was scare tissue. I truly don't understand how this happened. I had a small tumor my first surgery and was told everything was removed. I'm just trying to make sense out of this.
Jen
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Hi there Jen...
So sorry to learn of your bad news especially after 6 years!!...but thankfully your regular MRI scans have found the regrowth at an early stage and hopefully you can have the 'little bugger' zapped into oblivion via CK or GK whereafter you can put all this behind you and look forward to a bright carefree future with your young family.
Very best of luck Jen.
Derek
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Hi Jen,
I send huggles to you in hearing this news.... as we all know, this is the news we hope we never hear, but..... as you know, we are so so so very here for you and will help you get through this..... ceecee is right in noting that since the regrowth is small, you have options and maybe radio-surgery would be a very viable option for you. The love of your children... and your family and friends... and yes, even the Pirate Brigade, are going to help you through this.....
Phyl
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Hi Jen: Let me add my regrets for your bad news. As an NF2-I can relate. I just hope the best for you-and I reach across this Internet line and GIVE YOU A BIG HUG. Hang in there. Hoping for a swift resolution of your situation. Best WISHES-Ron
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I am facing an MRI tomorrow to see if I have a regrowth. What were your symptons? How large was your first tumor? My first tumor was 1.8cm almost 2cm on surgery day 12/11/00. I am having numbness in my mouth, tongue, face and some headaches on the AN side. My prayers are with you as you search out the plan for yourself. Gather all the information you can. Talk to others with the same history and pray that God will guide your decision. Build you a support group of family and friends. I am so glad that I found your message today. Please keep in touch. Philippians 4:13 "I can do all things through Christ who strengthens me".
Kay
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Hi Jen--I, too, have re-growth of the 1 cm rt AN I had removed via retrosigmoid/suboccipital in Jan of 2001. Last June (2006) it was determined indeed it was re-growtn (as first 3/4 years looked like scar tissue or variance in MRI films). Didn't tell my kids (grown kids, son age 35 and daughter age 29) until late August as son was getting engaged and didn't want to worry them)... Anyway I have seen two neurosurgeons, a neurotologist, two radiation specialists and soon to see another radaition specialist at Mass Gen Hospital (Boston, MA)as it is clear to me that surgery (per Dr Barker at Mass General) would present a 10% possibility of further damaging my already weakened facial nerve and no sense to wait and see as it's almost the size it was before, so radiation is my best option--now I have to decide what kind and how many sessions--I will see Dr Loeffler at Mass Gen March 21 to discuss this... This grows slowly (usually) so take your time to decide and be sure to ask about your facial nerve!
My heart goes out to you as I know we all had hoped once it was removed it would be gone forever, but there was a 5% chance of regrowth and so now we have to move forward. I only have my two (wonderful I might add) grown kids and my son is getting married Juy 15 and this all weighs heavily on me but I am thankful that surgery is not my only optiuon!!!
Take care and hope all turns out wel!!! Mary from MA
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Hi Jen,
My heart and prayers go to you and your family. As a mom of 4-year old I really know how you feel regarding your family especially young kids. It's the fear of how the kids are going to cope. But they will and you will stay strong and courageous for them.
Flier58
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Mary,
It liooks like we're in the same boat. I'm just learning about the impact of the facial nerve the second time around with surgery.
Please give me some insight with the radiation. What are the long term side effects? Also anyone with Gamma Knife or radio therapy please help me understand the pros and cons.
Thank you in advance,
Jen
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I saw your note - not a happy time for sure
Re the gamma radio/approach - my suggestion is that you consult with 2 or 3
specialists in the field - then compare notes
Conventional "knife" surgeons tend not to like radio too much
(its a kind-of "company politics" thing)
so dont be too surprised at what they say
(truth is most of them dont seem to know too much about it)
In terms of your suitability - it does depend a bit where/how big and current
situation/symptoms and the above will know what to suggest
At the size you describe you would seem to have a good 12mths or so
(or more maybe) to arrive at a choice - so no panic required
Perhaps you can let us know your progress ?
Best regards
Tony
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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
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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
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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
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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
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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
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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
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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
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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
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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]
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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
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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
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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