General Category > AN Issues
Just found out yesterday....
Samantha n Adrian:
Hello. My name is Samantha and my boyfriend Adrian was just diagnosed with AN yesterday. I have learned so very much from reading these forums for the past 3 hours. You all seem so supportive and eager to share your experiences.
I am a bit surprised however at how large Adrian's tumor is compared to many others here. He was told it is 4cm approx. the size of a lemon according to the Doctor. My concern is that I have read that the tumor is supposed to be slow growing. Even though his symptoms started approx 9 months ago with ear pressure and ringing, then 2 months later after antibiotics for ear infection and ear drops the dizziness started to occur. This was then followed by hearing loss and constant headaches. It was only after he complained of facial numbness (which started 2 weeks ago) that the MRI was ordered. He has seen several specialist and just finally last week was given the MRI with contrast, and not because the Dr. suspected AN but actually because he suspected MS (Multiple Sclerosis). My question is that since his tumor is so large and his symptoms getting progressively worse at such a fast rate is it possible they can grow faster in different people? Has anyone else experienced this? It seems like I said earlier that most here (or at least the ones posting) have 2cm or smaller. How long after symptoms occurred were you diagnosed with AN?
Thanks in advance for all input and comments!
Sam
linnilue:
I know that the two of you must be very frightened but my first piece of advice is to take a deep beath and learn what others can give you to get through this. I must ask, how old is your boyfriend? This is important because the truth is that these tumors grow much more rapidly in younger patients because of elevated hormone levels. So, my guess is that he is in his early twenties. I think that I myself could look back to almost 9 months of symptoms if not a bit longer, but I was 49 when I was diagnosed 3 years ago. As a matter of fact I am having my annual follow-up MRI today and will see all my docs next week. There are many people on this forum who would be more than willing to share their experiences and to hook you guys up with the best doctors. Where approximately do you live? And maybe you could tell us all what the doctors have recommended and which one recommended what. That will lead the two of you down the path to make an informed decision. Everyone here is readily available to assist. Let us know. I wish you the best of luck on this journey. Email anytime. Holly
Palace:
Dear Sam,
First, I congratulate you for being "mature" and concerned to read for hours on end, with the forum. Our best "wishes" to you and your boyfriend.
Many of us have been miss-diagnosed which includes myself. My symptoms are the same that your boyfriend has. It was the hearing loss that finally got me back to a different doctor for diagnosis. I had many doctors for different AN symptoms and they didn't refer me to and ENT at the time.
Yes, there are people on the forum that had a tumor the size of a lemon or larger.
The Acoustic Neuroma tumor is known as a non-cancerous tumor and true, slow growing. It must be watched as, it can "take-off" when least expected. (begin growing again after CK or GK or some surgical removal, leaving a portion so it won't destroy the facial nerve) In some cases radiation is used on the tumor section that is left after surgery. I'm not experienced in this area as I had Cyberknife. My tumor is 22 mm but, large enough and on a nerve to cause the same or similar problems as, your boyfriend. I'm not experienced in the major surgical area. There are others on this forum who had a very large AN, that might see your post and help you with a private email or posting to the forum. (for your own data to pass on to your male friend)
If I understood your last question correctly, I answer that I had symptoms for years before being diagnosed properly.
Regards,
Palace
Gennysmom:
Sam,
How old is Adrian? I had symptoms for a long time, but they can go through growth spurts. Mine was about 3.5 at time of surgery, and my only symptoms were hearing loss and tinnitus. Others with smaller tumors are much more symptomatic. Everyone is different, that's one of the first things you'll notice about this beast. Second, do your research and choose a good surgical team. Where are you guys located? A lot of people reccomend House, but there are also many other great teams out there, so there are options. Third, as a caretaker, the road may be hard for you as well. Keep an eye out for threads about the psychological pitfalls and take notes on how you can handle them. Adrian may go through a pretty severe "angry" stage that strains relationships....know not to take it personally, it's not about you at all. Make some expectation agreements before surgery so that you both can meet each other's needs. Lastly, know that this is completely doable and that going through tough times makes for better people....you learn to apprecate life and smell the roses and that's not a bad thing. This forum is a lifesaver, we're family and here for you guys.
Samantha n Adrian:
Thank you so much for the fast and caring responses. The support here is very comforting and I have already forwarded this link to Adrian so he can follow along at work and will be posting himself tonight when he gets home.
To answer some of the questions.... Adrian is 34 years old and we live in the central Florida area, however we would be more than willing to travel anywhere to make sure we receive the best care possible.
We received the news yesterday via the phone from the doctor and have an appointment Thursday to talk more about our options. The next two days in the meantime are going to seem like months!
From what I have read and because of the size of the tumor it seems like removing most of the tumor and then finishing with radiotherapy would be the most beneficial way to make sure none of the delicate nerves around the large tumor would be cut like they possibly would if they tried to remove the tumor completely.
Thank you again so much for the comments and kind words of advice. If it wasn’t for this forum I would be pulling out my hair right now with worry.
Sam~
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