ANA Discussion Forum
General Category => AN Issues => Topic started by: phx on February 04, 2010, 11:32:56 pm
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If you don't mind, could you share the size of your tumor? Mine is 4.4cm x 3cm x 3cm. The only option I was given was surgery. How bad were your symptoms? Mine are bad, except for I think I'm getting use to them. Well, more like, I'm learning to live with them. Of course when they're really bad and painful, I just want to get that thing out of me as quick as possible. When I'm not feeling that bad, then I get nervous about the procedure. I'm so unsure of myself.
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I'm on my second tumor, the first was a Vagal Shwanoma (10th cranial nerve) and it is listed below in my sig, along with the growth progression of his little buddy who is about to be evicted as well. Now that you have a treatment plan it is time to have faith in yourself, your doctors and your support staff to get you thru it.. I have found that now that the plan is in place I'm feeling much better.
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I never asked for specifics on the size of my tumor (I will get the specifics when I go to my 2 month post-op exam). My tumor was however so large,
that surgery was the only option. For a couple of months I also got used to the symptoms until they got so unbearable that I had to go see an ENT.
That's when I got the news I might have a tumor. My neurosurgeon then gave me the details.
Your apprehension and uncertainty is understandable. Just remember that we are all here now and will be here for support after your surgery.
Also remember that there are no stupid questions and to vent whenever you feel the urge to.
Best of luck,
Victor
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My tumor was the same size as yours. Also told that surgery was the only option. Either surgery to debulk and then FSR or surgery to remove it all (if they could)
I had my tumor completely removed 4 years ago.
My symptoms weren't bad at all (some numbness and tingling in my face only) but the tumor was large enough that it would start pressing on my brainstem so it had to come out.
You will find lots of good information and wonderful support on this board. I wish I had found it before my surgery so I could have taken advantage of the knowledge and friendly encouragement everyone offers.
Best of luck!
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My tumor was 1.5 cm at the time of my diagnosis and almost double that six weeks later when I had surgery.
My symptoms were feeling of fullness in my ear and diminished hearing. I also had balance issues that I was not aware of until my doctor did some basic tests.
Surgery is your only option for an AN of your size. Doctors typically won't radiate an AN greater than 3 cms. There are rare exceptions, but 3 cms is the norm.
Debulking is also used on larger tumors - surgery to remove the majority of the tumor and then radiation for the piece left behind.
Jan
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Mine was 3cm, so I was kinda borderline for radiation as an option. Unfortunately, mine was pressing on my brainstem and messing with my blood pressure and heart rate so we felt surgery was my best option.
The only symptoms I had were headaches, facial numbness/tingling and, like Jan, some balance issues I wasn't even aware of.
Lori
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Phx
My tumor was 3.8 cm x 3.3 cm x 2.9 cm so a little smaller than yours. It was almaost entirely in the CP angle. My only option was surgery. The only symptom I had was tinnitus and mild hearing loss. My brainstem had been shifted past the midline so I had to have it removed or things would have gone downhill. Honestly, surgery was not as terrible as I thought is was going to be.
Erin
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Mine was 5cm x 2cm, kind of 'sausage' shaped, but taking up plenty of room in my tiny head! I really didn't have much in the way of symptoms, they say probably because I'm young (23 at diagnosis) and it's slow growing, the tumor and I "grew up together" and lived fairly nicely together. :P My only real noticable symptom was headaches, which eventually brought me to the ER, and to my first MRI. It wasn't until after diagnosis that we noticed tha sometimes my balance was off, sometimes I had some tinnitus, and the left side of my face was getting droopy. Still had 'normal' hearing, though!
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4 cm and I was major symptom free until 3 months before surgery, that's when the dizziness started and stayed. After surgery I figured out that the mystery pain in my shoulder, the eye twitching, constant fatigue and the intestinal troubles were all related to my AN.
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mine was over 4.5cm and the only symptom i had was 6 months prior to surgery was facial numbess, ps i had been dull of hearing on the AN since as long as i can remember (child hood)
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Mine was 3cm and the only major symptom at the time (that I realized was related) was sudden hearing loss. Since then, I've been able to point to probable symptoms that I had leading up to that point.. Like, I had 3 or 4 sinus infections that year... gradual hearing loss but not noticeable to me (but was to others).. And, one fainting/seizure that I suspect was AN related. Also, looking back, I had frequent headaches...
Like you, the only option I was given was surgery...
I'm confident the surgery will go well and recovery will be slow but steady.. Be confident in your surgeons. There are many testamonials on this forum to the fact that there IS life after AN. In fact, next weekend I'm going camping again for about the 10th time or so (lost count) since my surgery with my son.. and the following weekend with my daughter. I've been swimming, biking, jogging, hiking, etc... There IS life after surgery. Believe it.
Regards,
Brian
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Pat ~
As you can see, tumor size varies widely. Mine was approximately 4.5 cm at the time it was discovered via an MRI scan with contrast. My neurosurgeon told my wife that it was closer to 5 cm by the time he debulked it (3 weeks later). My symptoms were a years-long loss of hearing in the affected ear (my left), a rapidly worsening loss of equilibrium, loss of the sense of taste (and a subsequent 30+pound weight loss) and intermittent, sharp 'stabbing' pain at what I later learned was the site of the AN. I had suffered (silently) with these symptoms for about 6-8 months before finally seeking a doctor's opinion, which led to the fateful MRI scan, the unavoidable AN diagnosis and then, surgery followed by radiation. Fortunately, all went well and I'm fine, now. I think you will be, too.
Being nervous about AN removal surgery is perfectly normal but you'll surmount it and get through this, just as so many others have. Please know that we'll support you in every way we can. :)
Jim
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Yea, the doctor told me that my tumor is pushing on my brain and that if I don't get it out, it's going to cause further problems. He said to me that for my age, 23, a tumor of that size was not that common. Sometimes I wonder "why me?" I tell myself I'll get over this in no time, but there are times when I find it hard to convince myself. I'm falling into depression. I have children and I used to attend school full time plus work. Now I have a hard time keeping up with my kids (they're young and very active) and I had to take this semester off of school. Now I think I have too much time to think about my tumor. I don't know if that's doing me good or bad. Thanks for all you responses. I really appreciate them.
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My tumor was 2 x 3 x 4 cm. I too had very subtle symptoms for about a year or more. Headaches and generally "stuffy" head. Oh and some minor hearing loss that I noticed when I was on the phone. This was all initially diagnoses as an ear infection. It was not until after the tumor was discovered during my first appt with neurosurgeon did I notice that I had some gait problems. He asked me to walk heel to toe in his office and I nearly fell over. Up to that point, I had not noticed any vestibuar issues. Soon after the discovery, my symptoms progressed quickly. Much more difficulty walking. More dizziness. I don't know if really symptoms were worse or I was more aware since the diagnosis. Just knowing I had some foreign mass in my head was probably enough to make me me appear more sick!
My tumor was pressing on the brain stem. I was in surgery within 4 weeks of diagnosis.
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Remnant left in head after 1st AN surgery Many Many years ago has grown to 3 x 2,2 cm
Major balance & walking problems developed
Too big for gamma knife
AN surgery tomorrow,March 1 at NYU (Drs Golfinos & Roland)
venice68
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venice -
good luck tomorrow.
Drs. Roland & Golfinos have an excellent reputation. You're in good hands.
Jan
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My son had a over a 4.5+ tumor pressing on his brainstem. He had no hearing loss just a small numb spot on his face. His lasting affects are nerve damage in his throat and one siided deafness. He has adjusted quite well. And I am grateful. He has gone on with his life, has a few issues to deal with but does very well.
There is life after AC.
Best,
Robyn