ANA Discussion Forum
Pre-Treatment Options => Pre-Treatment Options => Topic started by: HlavaDerava on January 24, 2014, 11:38:58 am
Hi everybody. New here, diagnosed with AN in my right ear last week . The tumor size is 23 x 20 x 22 mm.
I am in early stages of deciding what to do about it. It seems I change my decision about what kind of procedure to undergo quicker than I change socks depending on what personal experience I read about. I go from surgery to radiology back to surgery sometimes in matter of hours. Maybe others had experienced the same thing.
After meeting the surgeon (referral from doctor who ordered the MRI and is part of the same medical group) and his brief glance at my MRI he already determined I will be 100% deaf one way or the other (his recommendation was to do translab). In his opinion if the hearing is less than 50% it is not worth preserving. Drastic IMO.
I have also been exploring proton therapy simply because it is easier on the body then GK or CK. But I am leaning toward surgery for one simple reason: headaches. I do not get them; at the most I get is 1 in a year. 2 is something exceptional. I do not take medicine for it, just go to sleep and it goes away. The only medicine I have had in over a decade was 2 ibuprofens to treat severe ankle sprain (hiking and admiring the beauty of Arches NM without looking where one steps). That took care of the sprain and swelling. But lately at the back of my head I get feeling like headache is about to start. My concern with radiation is first leaving 'shriveled prune' there pressing on the area that causes this and mainly swelling after the treatment. That is why I am leaning toward surgery.
Of the many places out there we will be contacting House Clinic and John Hopkins. There's room for one more so any personal experience is greatly appreciated. Feel free to post or PM.
One option we plan explore and research is 'minimally invasive keyhole surgery'. Has anybody used this procedure to remove AN?
And I may even participate in drug trial. Several are going on right now among them one using 'Avastin' for VS. Will post once we find more.
Best of luck to everybody out there, me included. One wants to feel special, but like everybody else I would gladly pass on this 1:100,000 'special'.
I struggled with my decision as well and gave surgery and Gamma Knife lots of consideration. I've suffered from headaches most of my adult life and since getting into my 50's they finally became fewer and farther apart. From all the statistics I've read, people who have surgery seem to suffer more from headaches than those who have radiation. Having said that, not everyone who has surgery gets headaches and obviously not everyone who has radiation develops headaches either. I remember reading statistics indicating that Retrosigmoid Surgery can put you at greater risk for headaches than Translabrynthine Surgery, so there are differences even within surgical options.
In my case, the year prior to having treatment I went through a stage where I had a lot of difficulty sleeping due to headaches waking me up. Lying down seemed to cause headaches especially if I ended up sleeping on my back. I would have to sit up with several pillows until the throbbing went away - and it usually did without needing to take meds. Those particular headaches stopped about 3 months prior to my treatment (Sept. 2013) and I'm glad to say they have not returned. I do suffer from a "wonky" head, most days, but that's a direct result of my balance and occulomotor issues. Thankfully the "wonky" feeling is much more bearable than the headaches and I'm hopeful that it to will disappear in time.
Take your time, do lots of research and you will eventually make your choice!
Best of luck.
I had the pain in the back of my head too, on the tumor side. It's not a pain per se it's more like pressure.. I had other shooting pains in different spots of the head. They all went away. They did appear after I smoked a bit too much during holidays. Dunno if it's related. I quit smoking immediately.
But I believe I have adjusted. So I am guessing that even if it will swell after radiation, I will adjust and the pain caused by my swelling will go away.. So I haven't done any treatment yet. Gonna see another radiation oncologist on the 30th for fractionated radiation.
I had a really great experience at House 12/11/14. I am back to riding horses, farm life and city job is going back to FT next week. I had a mild occasional headache the first few weeks, none since. I had translab so am SSD, which surprisingly is better than my poor speech recognition preop! I will try to figure out how to message you in case you decide to go to House and would like any info on traveling/staying there etc. Karen
Thank you all for replies.
My fear of headaches is the primary driver behind the surgery. I really do not want to be incapacitated for months, even years. I know I can get them from surgery just as well, but there is something to be said to have this thing removed.
Still exploring drug therapies ...
Its possible some of the post treatment (rad or surg) headaches are actually tension/stress headaches that can become chronic. I think the best thing to do post treatment is to move your head as normally as possible. Stretch your neck muscles frequently. Your stitches will hold everything together. Treatment for AN can be really stressful, even if you are glad you did it and you are happy with your outcome. So figure out how to help your body get rid of the stress. Walk, yoga, massage, warm rice bag to the neck, meditation, get outside the house or office!
Does anybody know what technique is used to remove the tumor, please? Just as there are different surgical approaches to treat this (translab, retro, etc.) I wonder if there are different techniques to remove them.
I know one tool used is the ultrasound aspirator (or ultrasonic cavitation device). Any other tool / approach?
Reason why I am asking is I just watched Dr. Yang's (UCLA) presentation where he mentioned they study the tumors for possible future treatment developments (drugs being one of them). To me that would indicate they try to get pieces of tissue. I doubt liquefied (and sucked up tumor) is useful for that. But I can be completely wrong.
Yes, I plan to ask the doctor about this, but it would be good to know as well. Educating myself, hence the question.