Author Topic: First Post On The Newer Site Following Surgery One Year Ago!  (Read 2562 times)

s.dinapoli

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At age 35 I scheduled an appointment with an ENT regarding some hearing loss that I was suffering in my right ear which started around age 26 (1996). I’ve seen doctors prior to this visit and none of them had any answers as to why I was losing my hearing. The hearing loss was getting serious and by age 32 as I could not make out a single word while using the telephone on my right side. Symptoms across the board were getting worse especially tinnitus. An ENT performed a hearing exam which did confirm my hearing loss. After that exam I met with the doctor who suggested getting an MRI. A few days later a doctor contacted me with the results and  informed me that I had a small brain tumor called acoustic neuroma that I basically knew nothing about. I must have asked him a hundred questions that night over the phone. I spent most of my time on the computer researching information on various sites and some months later I started considering surgery. I started to speak with some people that had surgery performed in the past. During this time I was noticing unbearable “icepickâ€? pains deep within my right ear that happened every day two or three times. It would always require me to react by placing my hand over my ear and wondering “what is going on in there.â€? Prior to surgery  my symptoms were of course the hearing loss, tinnitus, ear fullness, deep stabbing pains (which was  a newer symptom) along with some serious depression. A month or two after the “phone callâ€? I met with a neurosurgeon in Philadelphia. A few weeks later my wife visited at her doctors office asking for a prescription to help calm her nerves as she explained my situation and it turned out her doctor had this tumor removed 10 years prior by the very same surgeon I was consulting. His tumor was removed following episodes of vertigo. Anyway, enough about him,  knowing that surgery seemed right for me I scheduled it for late April 2004 to remove a 1.2. cm tumor by trans-lab. I strongly emphasized to my surgeon that my facial nerve must be preserved. He mentioned that there would be a team of doctors performing my surgery and that they would be monitoring all the nearby nerves. He also stated that my facial nerve would most likely not be affected but unfortunately hearing preservation would be much more difficult with a much smaller chance of saving. On the day of my surgery all I remember was the injection then it was lights out. I remember waking up in ICU much later in the day and recall my balance being off while trying to stand with the help of an RN. My surgeon did explain the balance issue prior to surgery and stated that my left side would eventually compensate for the right side. The morning after surgery it was confirmed that my facial nerve was preserved despite my hearing being completely gone which was somewhat expected despite some optimism on my behalf. I did not notice a major difference with the one sided deafness. I did notice a bit more fullness in the beginning which has greatly decreased over the months. The balance issue was challenging at first and obviously not bad while lying down. I was so incredibly tired all the time. The incision was behind my right ear and slightly toward the back of my head. I stayed home from work for about 7-8 weeks following surgery. I was excercising at about three weeks following surgery with some light weights and treadmill. I started driving about four weeks after surgery. Balance slowly improved and considerably improved around 2 months after surgery but still felt like my head was really heavy or something and was easily fatigued. No major headaches to report before and after surgery which I am grateful. Did not have any CSF leaks. Had some neck pain afterwards on and off for a while which has completely gone away at this point. My writing, reading and memory was never affected. Life is definitely better one year later.This past April marked one year since my surgery and I am doing very well. My balance is really good which is tested all the time with my seven-year-old son. The other night I picked him up up and spun him round and round many times (probably not too smart) and was able to maintain my position quite well afterwards. I coach and pitch little league baseball. To date I am  still happy with the choice. My one year MRI looks good and will likely get another MRI maybe three or five years just to check in. The hearing in my good ear is excellent (just had checked). The tumor is completely gone. For those just out of surgery please know that time does heal. Before my surgery I spoke with numerous people that had surgeries 5,10 and even 20 years ago and they are doing fine. I don’t see many posts by these people anymore so maybe they just liked the old site better or something …who knows? If you just found out that you have this tumor remember that you are not alone and nothing you can experience hasn’t already been experienced by somebody else. I am feeling way better after the one-year mark and from what I understand complete healing probably peaks around 2 years. My incision is almost undetectable and free from any discomfort or pain. Tinnitus and fullness in the affected ear is annoying on bad days and almost undetectable on my good days. No more stabbing pains. I cannot hear well in very noisy atmospheres like bars, clubs, restaurants and some social events but I position myself where my good ear is in a good location and this usually makes the difference. Don’t expect others to accomodate. My best friend still talks to me on the deaf side whene we’re out at publc places and I nod like I can hear him because I get tired of telling him that I cannot hear on that side. He is a very low talker. It figures that my best friend would have the world’s lowest voice. A few months after my surgery my wife found out that she was pregnant and we just had a little girl almost two months ago. I do realize that many people do not have good outcomes following surgery but also remember that some people do have good outcomes following surgery and so far I am one of these people. Everything has improved and is really coming together. I still get pissed at times that this ever happened to me but I just try to live each day to the fullest. I hope that in ten or twenty years I’ll still be happy with my choice. It still seems that every procedure has it's pros and cons. Choosing one of the three treatments will be your toughest decision so do all your own research and be sure to follow your heart. I will write again at my 2 year mark. I am here for anyone who would like to talk at anytime. …S.DiNapoli  P.S. Everyone please share your stories!

russ

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Re: First Post On The Newer Site Following Surgery One Year Ago!
« Reply #1 on: June 09, 2005, 03:22:42 pm »
Thanks s.dinapoli;
  For sharing your story and experiences!
  I had a 1.5 cm. AN removed in 1977. Since then I've developed two on the other side, 2 small meningiomas and 10 small spinal tumors were discovered.
  Am I angry? Not really... But not so full of good news to share having NF-2 now.
  I was on the old list for a little over 7 years and am tring to recall who you might be. I was quite active. Sometimes,  disagreeable and challenging. - smile -
  Best wishes for your life!!
  Russ

sdinapoli

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Re: First Post On The Newer Site Following Surgery One Year Ago!
« Reply #2 on: September 13, 2005, 06:12:45 pm »
There are some great mp3's of this years Symposium which I recently purchased on this site and wanted to share with others how much I enjoyed listening them. Lots of Information! There are back issues also available. Anyway, since I'm here mine as well say something. As stated above I had translab surgery 17 months ago and doing very well so far. Many of the early post op problems have pretty much vanished. I did have a cold recently for the first time since surgery and it seemed like my sore throat and other symptoms were only felt on my left (unoperated) side. No big deal but a little strange. I have tinnitus which I had prior to surgery and I guess I will have for life...just have to make friends with it I guess! Somedays worse than others. I spoke with my doctor about the tinnitus since he had the same surgery at the same location 10 years ago and I couldn't believe it when he informed me that he does not have tinnitus AT ALL. I assumed he did since (like me) he was also deaf in one ear. He never had tinnitus before or even after his surgery. I started some light dj'ing again (without headphones) and monitors are kept real low and man what a great feeling! Balance is really good even in the dark (maybe good eyesight helps?) No major headaches. Had some nasty neck pain along with some incision sensitivity and mastoid discomfort within the first year but nothing at all these past 5 or 6 months. No problem sleeping on the operated side at all. I had some icepick pains on the An side prior to surgery and have never returned since surgery. My tumor was somehwat smaller at 1.2 and choice of treatment was extremely difficult but if all stays the same and the tumor never grows back I will be 100% satisfied with my choice. Also, I am not easily fatigued much anymore. Our bodies sure heal well over time.  I had my one year post op MRI and looks good. I'm gonna wait three years for another.