ANA Discussion Forum
General Category => AN Issues => Topic started by: patt on April 04, 2010, 11:12:48 pm
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Hi to Everyone ---
I am new to this board and I am very happy that I found all of you. I have been reading the posts and there is alot of good information that is shared by all of you. I was just diagnosed with an "acoustic neuroma" on the 22nd of March. I am in the process of getting appointments for Radiation and also a Dr for surgery. On the 4th of March, I lost my hearing on my Right side. 100% loss of word recognition. A repeat hearing test was taken after I was on a large dose of steroids -- word recognition was improved alittle. My tumor is 2.7 CM. My balance seems to be OK, but at times I feel alittle dizzy.
My question --- do or did any of you experience headaches in the morning when you first wake up. I look back and I had headaches before I lost the hearing in my Right ear. It goes away on its own once I am up for awhile. During the day -- I will get a headache -- not really bad, but there.
I have been reading and trying to understand my options. When you decided the approach that you took --- how did you decide that??
Thanks for listening to me. I am sure that I will be back with more questions.
I am from Minnesota. Are there any of you out there that are from Minnesota -- if so ----- where did you have your surgery??
Thanks again ---
Patt from Minnesota
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Hi there Patt: nice to meet you. I never had headaches pre-op. Headaches have always been a rare thing for me. Post surgery I had excrutiating headaches for about 2 weeks, then. luckily, they subsided. My hearing on the AN side was also about nil.
My decision to go the surgical route was very quick & without a thought about it after a friend who happened to be a neurologist said to go the surgical route,
'they'll be able to pluck it right off the nerve.' Who knows how things would have ended had I chosen radiation....
Anyway, keep reading away on this discussion forum. Unfortunately I didn't get a computer until about 2 months post op. You are in a great position having found us pre-op.
Always good thoughts, Nancy
ps: I live in Florida.
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Patt -
headaches are not a symptom I experienced prior to being diagnosed and I thankfully don't suffer from them post op either.
Drs. Link & Driscoll @ Mayo Clinic in Minnesota have a very good following; you may want to consult with them.
As for treatment option, it's a very personal choice. One size does not fit all. I had the option of radiation and surgery, and although I initially thought there was no way I'd choose surgery that was my ultimate decision. It was the best choice for me, but that does not mean it's the best choice for you.
The size of your AN is very close to the threshold where most doctors won't do radiation (usually 3 cms) so that may or may not be a factor in your decision.
If you haven't already, you should contact the ANA for their informational brochures. In my opinion, they are very educational, explain a lot about ANs, and will help you in your decision-making process.
Best,
Jan
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Hi Patt, This may depend on what part of Minn you are in but Univ of Iowa has Dr Bruce Gantz who does approx 60 ANs a year. There have been many on the forum who have been there. He is not big on radiation but a very good neurotologist. I live in central Iowa and have got to know him well as I in time found I had NF2 which is ANs on both sides and can have other tumors too. I have had 3 removed so far. I know also that Iowa has had many out of state pts.
www.uihealthcare.com and go to otolaryngology section.
Good luck on your AN journey. Cheryl R
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Hi Patt and welcome to the forum..
Looking back, I did have a lot more headaches than usual. It seemed I was taking ibuprofin a LOT.. Also, I had 4 sinus infections in the year leading up to diagnosis (which could have contributed to the increase in headaches)... After surgery, I rarely take anything for headaches. Like you, they seemed to just be there when I would get up and then would taper off through the day. So, I feel your pain (pun intended)..
Unfortunately, I didn't have much choice on the treatment front. Mine was large enough and interfering with the brainstem enough that my doctor ruled out radiation immediately and I basically deferred to him on what type of approach to use for the surgery. My hearing was gone already, so it didn't matter to me if translab or retrosigmoid approach was used; whatever was best to hopefully get all of it out.
I'm not in Minnesota, so I can't help you with local doctors.. If you ever get down to Houston, Tx, then I have a few for you though. :)
Welcome aboard!
Regards,
Brian
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Hi Patt and welcome,
Although headaches aren't the most typical symptom when having an AN, they can happen especially if there is some sort of trigeminal nerve involvement (which is most certainly the case with an AN of your size). They can range from sharp pains, to very dull-surface pains. Ibuprofen will usually help in mild situations, although stronger medication is needed for patients with more serious trigeminal neuralgia.
I wanted to ask a bit more about your hearing loss - I know quite a bit about this, since it has happened to me three times. You mentioned that you were put on a high dose of steroids, are they over now? In my case, it took two full weeks of high dose steroids (40 mgs of prednisone) to restore my hearing and word recognition (from complete loss), followed by a very slow taper. If you have not seen a significant improvement, your doctor may want to extend your dose (of course if you can tolerate them well).
Marianna
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Welcome Patt,
I would sometimes wake up with a stabbing pain behind my ear and at the top of my head. Being a mother/hairstylist/student/teacher I was too busy to listen to my body. I just kept popping advil. I would see this doctor then that doctor and went misdiagnosed for 10 years.
I am much more in tune with my body. I am kinder to it, I listen to it and I trust my gutt... I knew there was something up!
Hugs Michelle ;D
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Patt .....
Just want to add my welcome to this Forum. You will find many opinions and much empathy with the frustration of the treatment decision-making process.
I have had headaches off and on since I was a young woman, but I did not notice any particular increase in them prior to diagnosis. Blissfully they are almost non-existent since my AN surgery two years ago. At 2+cm, I was given the choice of radiation or surgery. However, it did not take me very long to decide on surgery when it was determined I had a rare rapidly growing AN ..... most ANs are very slow growing. I do not regret my decision at all and had an excellent outcome.
Although I grew up in the Plains States, I have lived most of my adult life in the Mid-Atlantic States so I do not know much about doctors in Minnesota. There have been a number of people on the forum who have gone to Mayo in Rochester with excellent results, as well as Dr. Gantz in Iowa City.
Let us know how else we can be of help and support.
Clarice
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Hi, Patt from Minnesota ~
I wanted to add my welcome and I know that our members in and around Minnesota will be offering you their experiences and recommendations on doctors and hospitals.
As for waking up with headaches, I never had that experience and like some others, I didn't experience headaches post-op but headaches are very common with ANs so yours are not an anomaly, by any means. An acoustic neuroma (vestibular schwannoma) is a cranial tumor that forms on the sheath that encompasses the eighth (hearing) nerve and so, headaches can result.
My decision to have tumor de-bulking surgery was made by my doctor based on the fact that my tumor was (initially) too large (4.5 cm) to safely undergo irradiation so he chose to cut off it's blood supply and 'gut' the tumor, first. Subsequently, it was irradiated by FSR and seems to have responded well - by dying. However, with a 2.7 cm AN, you have other options, as you know.
We're here to inform and support AN patients and we especially want to help those in the treatment decision-making process, like you. Thanks for posting - and please consider the forums a resource.
Jim
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Hi and welcome to the forum. So sorry you have an AN.
I do have headaches in the morning. Not all the time but they do wake me up. I had one this morning and yesterday and both woke me from sleeping in (on a holiday weekend Booo). I have found that if I just get up and get moving the morning headaches will resolve themselves.
I do suffer regular headaches, and have purchased stock in both Advil and Tylenol Corp...
Just kidding...about the stocks I mean. I started my AN journey of discovery and diagnosis with headaches and scintillating scotoma associated to the headaches about 3 years ago now.
I haven't had surgery yet, scheduled for sometime in the next couple of months.
All the best to you as you make your way through this maze you've been drawn into. There are lots of folks on here who can help you out! I'm from Canada so I can't really help with choices except to say that I nearly came to the House Clinic for surgery until I found a surgeon I found as highly qualified as I feel the Doctors at House are.
Best,
Nikki
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Thank you to ALL of you ---
I am so thankful to all of you that have posted. I wake in the morning thinking about this and it continues all day. It has taken over my life!! I am so afraid. I wish there was one decision that would be made and not all the options. I still haven't met with a surgeon or the radiation dept. That is coming up soon. Maybe after those appointment -- I will have some of the questions answered.
I do have a wonderful family and friends, but I feel like that is all I talk about. So, now I am not talking about it and keeping it in. I know that isn't good.
Thanks again to a group that understands ---
Patt
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Hi Patt, welcome and sorry to hear you are here.
I did not have headaches before surgery, but I do now!
I am 15 months post op and had surgery at the Mayo with DR. Link/Driscoll. Great team and hospital. Reasearch your options and see other doctors. I live in Savage, MN you may email me if you'd like to chat. Good luck, Bell
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Hi Patt...Hi :) I remember feeling overwhelmed and scared too, when I was first told that I had an AN, about 8 months ago. I was so unfamiliar with everything AN and it was like a whole different scary world that I walked into and had to make decisions about things I didn't have a clue about! I came on the internet, I talked with different doctors and after about 2 months of my own little investigative "research" (and prayer) i made a decision and felt at peace about it. You will get there too...and the people here on this forum seem to be so encouraging and helpful. I agree, it is hard to talk with people in my every day life about my AN issues and i don't want to be a whiner about it, so I try to limit that. I live in upstate New York, so i can't help you with your doctor/hospital decisions but i will tell you that something which helped me a lot to feel comfortable with the procedure choice, doctors and hospital was that i talked with a few other people in this area who had AN and they had used my same doctors and hospital...that was very helpful and it gave me great peace of mind that everything would be alright. How i found those people was i asked the nurse at one of the facilities if she could share some names with me of people who are willing to talk about their AN experience. They called me the next day with 2 names! We're with ya! :) Take care.....michelle d.
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I wish there was one decision that would be made and not all the options.
Well, there is no "Easy" button, Patt. :)
The good news is that all the options are good ones, assuming you get a doctor with good experience treating ANs. So you don't have to feel like you might make a big mistake; you just have to sort out which of the several good choices is best suited to you.
It is probably best not to drown your friends and family with an endless discussion of this topic, even though it is uppermost in your mind. That's what we are here for. So go easy on yourself, it will start making sense after a while, and you will get to the other side in one piece.
Welcome aboard.
Steve
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Hello Patt,
I never had headaches because of my AN. Vertigo was my big issue, and that actually was a benefit. My right side balancing nerve was so bad before the surgery, that my left side started taking over balancing for me...in the long run it was good for me.
My AN was discovered in Dec '09 and my wife and I went through what you are now going through...how will we handle this? I changed my mind frequently, even after I was sure that I had all the answers. We even had me set up for radiation in May '10,(new machine coming in) but here it April '10, and I had the surgery. How did I make my decision? Read, read, read. Ask lots of questions...lots of them! Interview your doctors...you will be hiring one or several of them to treat you. How much do they know about ANs, etc. Make a list about waiting, radiation, and surgery.
Over a period of time you will have a lot of information, and you will know what is best for you. Good luck to you.
James
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Hello Pat,
Sorry that you have to make these tough decissions, But be assured that you have found a very good forum and many different experiences. I found it heplful to be able to hear everyones storys when I was going through the finding out process. Try to take it in and not freak out. Remamber you will be ok!!
First off that you are in Minnesota I hope you are looking into the Mayo Clinic!! Some of the best and I can personally tell you that Dr Link & Neff are very good, straight forward and honest Dr's and will help with ALL the options available to you. I made the long journey from Akron Ohio to go there and don't regret a mile of it!! I had the "Sub Occipital Craniotamy" and stayed about 1 week at St Marys Hosp. My tumor was also 2.7cm, but pushing on my brain stem and it had to be removed.
Looking back I remember having the feeling of a stiff neck all the time and "tension" like headaches, nothing like the ones after my surgery but different. I think alot of time thinking about your symptoms can be exhausting for you and overwhelming. PLease know alot of people will be thinking and praying for you..