ANA Discussion Forum
Pre-Treatment Options => Pre-Treatment Options => Topic started by: swhite on December 17, 2009, 09:33:49 am
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Just when I thought I was getting better from my surgery 8/27/09, I was told Tuesday by my neurosurgeon my tumor, which we knew a very small section was left to spare permanent nerve damage back then, is regrowing and is less than an inch. I saw another neurosurgeon (specializing in gamma knife) yesterday and he gave us so much information, it is overwhelming. He's suggesting gamma knife but it may risk my facial nerve permanently (none of which has come back so far), since the growth is so close to the facial nerve. I'm thankful my husband and cousin were with me. I understand gamma knife can't be used on tumors larger than an inch, so I don't know how much time I have for it to grow. My anxiety is heightened and unlike my surgery in August (no prior symptoms and rushed into ER with stroke like symptoms), now I'm faced with choices much like alot of AN patients. I attended my 1st support group here in Michigan a few weeks back and will make some telephone calls, but thought I'd make a posting because I don't know where to turn. I haven't been on the forum for some time focusing on physical therapy and trying to get my life back. I am considering sending a copy of my MRI to House (LA) for a free consult (it's offered on their website). Is this worth it? I am seeing another ENT (also specializes is ANs) next Tuesday for another opinion. Any help and encouragement is appreciated :) Trying to stay positive...
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I'm in the same boat...my ENT just booked me with two radiologist on dec 31...it looks like my tumor went from 1.4 cm pre surgery to 1.6cm 6 months post surgery....it is over whelming. I'm hoping for cyberknife, but only one machine is available in Canada, so I may have to go with gammaknife. it is very confusing and like you trying to stay positive. one step at a time, one day at a time, and repeat, its not cancerous, its not cancerous,......i will pull thru this one way or another and go on with life...I keep telling myself, its curable and doable and livable and so many are worse off with cancer that I thank the Lord for this tumor being bening....
Jo
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Swhite & Jo,
I'm so sorry to read that your tumors are being sassy and growing!! Makes me feel very bad and wish there was something I could do for you :( You are both in my thoughts and constant prayers! Please let me know what you decide for treatment and give updates on how things are progressing?!
Bren~
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I am so sorry to hear about the regrowth I am sure you will get many informative replies the only thing I feel is that it doesn't hurt in sending the MRI to (LA) so many people have gone there with such great success stories.
My prayers are with you,
Pat
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I have two comments. First, if your surgery was in August, it is early to be saying that the residual is regrowing. It may just be a bigger bit than they thought. Second, if it is growing, just get Gammaknife or Cyberknife. There may be some risk to the facial nerve, as there would be with surgery as well, but the facial nerve is generally resistant to radiation. The swelling can cause some issues, but permanent facial nerve damage is rare with radiation treatments.
Sorry to hear the news, but I still think the final outcome will be okay.
Steve
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I am considering sending a copy of my MRI to House (LA) for a free consult (it's offered on their website). Is this worth it?
Yes, many of us have found that a very worthwhile thing to do -- whether or not you eventually go to House for treatment.
Best wishes,
Catherine (JerseyGirl 2)
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I am so sorry you got this news and can only imagine how distressing this is since you just had surgery! :-\ You are sure to hear from others who have experienced regrowth and what their experience has been. From what I have read from some, the cyber or gamma for residual tumor growth has been quite successful.
I went to House for my surgery and if you do send your films, know that you can request a specific doctor from HEI. After much research and reading people's experience on this site, I had requested either Dr. Brackmann or Dr. Friedman, and ended up working with Dr. Brackmann who I can't say enough good things about. As far as I know, though, they don't do radiation although the neurologist they work with, Dr. Schwartz might. They truly have seen it all, so it would be interesting just to get their opinion and it is free! Good luck - I am praying for you!
Cheryl
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So sorry you are having to deal with some regrowth. I'm with Steve that it seems like they may have left more than first measured, instead of rapid regrowth. It really does not change the fact that whatever is left needs to be stopped from growing. Unless you have other risk factors, it seems like cyber or gamma knife is the way to go to stop it. There are a couple of excellent radiation centers in the country (Stanford and Pittsburgh, for two) that would be worth contacting for an evaluation. Your situation was unusual from the start so you want the most experienced professionals you can find for advice now.
Best thoughts and continued prayer.
Clarice
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I'm sorry to hear the news for both of you. I was just confirmed this week I have a VESTIBULAR schwannoma (I'm imbalanced, and I don't mean just mentally lol :D). I learned that typically, these grow so slowly that the brain compensates and most folks don't feel any type of imbalance; rather they have hearing issues and that's what triggers their seeing a doctor. In my case, it is concluded that mine is growing faster than normal ..... faster than my brain can compensate, hence my imbalance, and this is less common to see a doctor for balance reasons. My imbalance is not debilitating yet .... my quality of life, though, is deteriorating and I know this imbalance is getting more intense each day (it feels like it). Before it was a passing, random feeling. Now it's from the moment I get up from a bed .... until I sleep from fatigue.
I've opted to get the surgery .... complete removal .... as radiation I was told may make worse my balance, or if any improvement expected, won't be felt for quite some time (possibly 12-18 months). The net effect IMO is that I have this radiation and I get no results - I remain the imbalanced individual that I am! This is specific to my situation only ..... increasing imbalance (no significant hearing loss although I feel fullness in the ear) ..... radiation for my situation is not something I think I can consider if I want an immediate change. So, I'm going for full surgical removal of that bad boy.
I'm curious. Tenai98, is there regrowth because you went with an initial partial removal as swhite did? Or do you have a full removal but now it's grown back?
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S White ~
I'm sorry to learn of this alleged re-growth, although much like Steve and Clarice, I'm a tad skeptical that what is showing up on the MRI is, in reality, regrowth and not simply the same AN whose size may have been under-estimated prior to your surgery. Unfortunately, when it comes to acoustic neuromas, no one can guarantee anything but in your shoes, I would very likely opt to have the Gamma Knife procedure and not fret needlessly about a possible re-growth. Whether there is growth or not, the radiation should destroy the remaining tumor's DNA, ending any chances at re-growth. Of course there are risks involved with the radiation, mainly swelling, but that cannot be avoided. Try not to become too distraught. This is treatable and although it may take awhile, you will get your life back. Besides, with all of us rooting for you, things have to work out. :)
Jim
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Thank you all for your encouragement. I'm a bit skeptical too about how much may have been left behind from my surgery initially in August. Nevertheless, I'm seeing an ENT here in Michigan (Dr. Monsell) next Tuesday, whom did a fellowship at House. He's well-known here and highly recommended. I'll take my MRI and get his opinion. I've seen him once, but now that I've had my 3-month MRI, we have more information to go on. No doubt I'll have to have gammaknife, but that's better than going under a real knife (again)! Trying to stay positive still and struggling with all that needs to get done for the holidays :(
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Im sorry about your ordeal, I think they may be on to something when said that the original size may have been wrong. I am new to all of this being diagnosed just last month. Where in MI do you live? I have not been able to find a support group. I am seeing LaRouere from the MI Ear Inst. Have you consulted them?
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Swhite & Jo,
I am sorry both of you are having this issue. Please update us.
Grace
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Update............I've sought an opinion from University of Michigan (Dr. Telian) and am currently seeing Dr. Monsell (ENT). Both say radiation now is out of the question since recent MRI's do not really confirm "regrowth" and I am much too young. I also did seek the opinion of an associate of the neurosurgeon whom did my surgery in August, but my husband and I didn't care for his bed-side manor and he was way too aggressive with his approach (he wanted to do radiation this month!). In fact, he told me I wouldn't get any facial nerves back and low and behold, January 3rd, my first facial movement in my cheek started to occur! We are thrilled. We originally thought it was regrowth back in December when I went for my 3-month follow up with the neurosurgeon who did my surgery, but it could very well be post-op healing still. At almost 5 months, it's too early to tell due to the size of the tumor removed in August. I do feel better about this. I sent my information to House last week and am awaiting a telephone call for their opinion.
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swhite,
I am so thrilled to read your latest update!!! Our surgeries were a few days apart so I've followed your posts closely.
Hope your recovery continues to progress well,
Cyndi
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S W ~
Thanks for the update. I'm pleased to learn things are looking better for you in the sense that two reputable doctors don't believe you've experienced re-growth. Frankly, I'm not surprised.
Jim
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I'm so sorry. I wish I had some words of wisdom, but I don't. I can only imagine how frustrating and scary this all is to have to go through twice.
Huge (hugs) of strength and clarity for you.
Adrienne
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swhite,
I was going to suggest to keep getting different opinions on your scan before embarking on radiotherapy. I had middle fossa and then it grew back 3 years later. My surgeon said that it hadn't grown back but i thought the scan looked like it did so i got a 2nd opinion and sure enough. So i sacked my original surgeon and moved on. i recently had radiation treatment over 5 days. You may want to consider cyberknife rather than gamma coz spreading it over 5 days is meant to reduce the potential risk of facial paralysis issues. Thats if you need any further treatment which at this stage looks doubtfull.
laz
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Go with your best instincts. It is all any of us can do. We research, read, study, and in the end make a decision that our "gut"leads us to. Our thoughts are with you!
Priscilla
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It's definitely worth sending MRI CD to House. Read my posts (JSC) re: my daughter's GK for her facial nerve schwannoma in Dec. 2007. Very positive experience!
Best of luck to you!
Jan
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Update........thanks everyone for chiming in on my dilemna. I wanted to provide an update that I heard from Dr. Brackmann at House late Tuesday evening. We were not on the phone long, but we were very encouraged after we hung up. He concurred that my recent MRI did show residual tumor (not growth) and there's no urgency for anything and to have another MRI in six months. This is exactly what we wanted to hear and I pray for no regrowth. This is the same opinion of two other great ENT's in the area so I am much more comfortable now. Now, I just have to decide whether I will return to work (part-time for now) in the next few weeks before I go into long term disability which effects my benefits. It's going to be a matter of how many hours I can endure. Has anyone else out there returned to work? I have a great employer, it's a quiet environment at a desk, and it doesn't bother me at all what other people think of my speech and partial facial paralysis (movement started Jan 3!). They all just want me to get better and get back to work. Thanks for all the encouragement!
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SWhite ~
I don't have any advice on returning to work (I was retired at the time of my surgery) but I do have congratulations on the great news regarding the now-confirmed lack of tumor growth! :)
Jim
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Great news swhite.
Always good to get a reliable second opinion. Rushing into surgery relying on one surgeon's view was about the decision of my life.
Congrats
laz