ANA Discussion Forum
Pre-Treatment Options => Pre-Treatment Options => Topic started by: kjm on November 17, 2010, 12:03:10 pm
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Hi all,
So glad to have found this forum! I have recently been diagnosed but have yet to see a Kaiser HMO neurosurgeon. Information from the MRI is that my tumor is 1.5 cm at the right cerebellopontine angle that extend partially into the right internal auditory canal.
I will be attending the next AN support group at Stanford University to get more information and othe AN patients
Kathy
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Kathy:
Welcome.
What are your symptoms? You will find so much info here & there are so may good folks always willing to lend an ear if that is all you need.
What are your symptoms?
Syl
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WELCOME to the group that you never WANT to be a part of but a great group of people/support, none the less!
Please feel free to ask us anything - no question too big or small - we are here to help YOU!
K ;D
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Thanks for the warm welcome. My symptoms have been the constant noise in my right ear, dizziness , slight imbalance and always tired (having RA does not help). Sometimes I get tingling in my face around my mouth - like coming out from under Novocaine.
So many emotions to describe but the stress in my life is way out of control. I live with my 90 year old father who is not doing well (in fact he also was diagnosed with AN a couple of months ago but the doctors decided nothing can be done for him). So weird that I too now have AN but have options.
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Kathy,
I just wanted to welcome you to the forum as well, you have come to the right place and please ask or express anything you want to. We are here to listen and support you through this tough journey. Please keep us posted after you have gone to see the neuro, choosing a treatment can be the hardest part so make sure you feel comfortable with whatever you decide.
Liz
PS and about your Father's AN, I find it strange that you both were diagnosed with one so close together, but they seem to be a lot more common than previously thought...so I guess I'm not shocked to hear it. Sorry they are unable to do anything for him.
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IF I decide for surgery (whilst I have a job with health insurance) would I need someone to care for me when I get home? Or have other singles managed on their own?
first of many questions I am sure
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Kathy .....
Adding my welcome to the group!
As for needing someone to care for you when you get home: it all depends on how you do post-operatively. Many of us had virtually no lingering issues, but complications can arise. My vote would be to arrange for someone to be with you (or you with them) the first week you are home from the hospital ..... and then have a Plan B, if you need further assistance beyond that. It would also be good to have someone cooking your meals for you for a couple of weeks so you can concentrate on healing by resting, walking, resting, etc.
I am married, but my husband had to return to work 10 days after my surgery so our daughter-in-law came with her 3-year-old and stayed with me for the next week. I really would have been fine by myself, but it reassured the family to have them there.
Each person is very different, but I would have some options lined up just in case you need them.
Best thoughts. Clarice
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Kathy
Welcome and I am glad you found the site. Since your AN is 1.5 in size you still have many different options for treatment. Make sure that you ask the correct questions and be comfortable with your decision. There is also a AN support group that meets in Cupertino, would be glad to have you attend. Our meeting will be on December 18th and there will be a presentation on balance issues.
TJ
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Hi, Kathy! You can add yet another warm welcome to your ever-expanding list....mine. :)
I won't repeat everything already posted to you except to reiterate that this is an active AN support site with a host of caring, knowledgeable people eager to help, inform and, above all, support you as you deal with your acoustic neuroma. You've definitely arrived at a good place and I look forward to seeing more of your posts.
Jim
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How did folks go about telling family and friends about their AN? I am worried about telling my dad who I live with.
Kathy
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In my opinion the best is to be honest with those you tell. When I told my children I made a point of going over all the options with them. I also made sure that they were aware that this type of tumor is usually begnine so they understood that at least having the AN is not life threatening.
TJ
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Has anyone ever had a posterior fossa arachnoid cyst? Besides the right side AN I also have this cyst. The last two nights I have awaken with a severe headache but it eventually goes away once I am up and about. Normal headaches or a sympton?
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Hi Kathy, and welcome.
I'm glad you found us and glad you're going to attend the support group meeting. That will be a great way to get information and meet people who know what you're going through.
My dad also had an AN (actually 2 of them). He was also older when it was discovered and since he had Alzheimer's as well, he was not a candidate for surgery either. Sounds like we have a lot in common!
If you do a search on the forum for arachnoid cyst, I think you'll find an older thread on that. It sounds familiar and I am pretty sure we have a member who had this diagnosis also.
Good luck!
Lori
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thanks for the suggestion using the search was a great idea. I found a few comments about cysts but not much about what was done to resolve them. Another question for the surgeon when I see him.
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IF I decide for surgery (whilst I have a job with health insurance) would I need someone to care for me when I get home? Or have other singles managed on their own?
first of many questions I am sure
There were many little things that I needed help with after my surgery. I didn't know what would be managable on my own until I got home. One prays & hopes that everything goes well, but it's nice having someone around in case of a CSF leak or a fall. My teenage nieces were off from school for the summer & they were able to help out so much. One drove me to my follow-up appt. You will not be driving for a few weeks, that's for sure. Cleaning house can be difficult. Bending down without getting a headache seems to be a common challenge after surgery.
Something so simple as heating up my food required assistance. Navigating my way around the kitchen was a challenge. Even though I stopped using the walker on my 2nd day home, I still needed to hold on to the furniture or counters. Sometimes you need 2 hands when holding a plate of food. If you have pets, it's nice not having to worry about the dog jumping on you and knocking you over.
If you can't stay with someone after surgery, you should at least have someone check on you regularly, maybe a neighbor.
Syl
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Hi Kathy,
Adding a belated welcome to the forum :)
Lots of good advice so far.
Weird that your dad also has an AN, so he will understand, maybe? Depending on what kind of symptoms he has...
Hopefully you can get yours zapped, and not have to go through surgery. Let us know how things progress.
STRESS!~ it sucks,is never ending in some way or another. Hopefully you can stop and do something for YOU. ;)
Maureen
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Hi Kathy. Glad to meet you, sorry we're meeting here.
Forgive me for being late in my welcome, the holidays and all. Case in point, I had CK at Stanford about 6 weeks ago and nothing got in the way of Thanksgiving. In fact, I had even more about which to be thankful.
To respond to your question about help after surgery: since I had radiation, no help was needed. My wife insisted I hang around at home for a few days, but I was playing handball by the second week. As for telling my family, I think the important part was to tell them, with emphasis, that it's typically benign. I followed that with the facts regarding my particular alien. The response was overwhelming support - and advice ;) .
You've come to the right place for support - and advice, because no one really understands like we who are going there, or who have been there (and done that ;D).
Mark
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I'm planning on going to Stanford also. How does Kaiser handle the problem, will they let you have Ck at Stanford or do they have Dr's?
As for having 2 in your family you might want to read this article where they found 8000 cases per million in autopsy.
http://www.patient.co.uk/doctor/Acoustic-Neuromas.htm
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Hi Tom,
I look forward to meeting you Thursday at the Stanford AN clinic.
All the Kaiser Neurologist are at the Redwood City office:
https://members.kaiserpermanente.org/kpweb/medicalstaffdir/specialtyfacilitysearch.do
I hope they do CK ...still waiting on my referral to see a Neurologist.
Kathy
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Hi all,
Latest update for me is that I will be seeing Dr Nutik at Kaiser Hospital in Redwood City on Dec 13th.
I am anxious to understand what my MRI report really means. I must have read it a million times and still do not know what it all the dimensions mean. The one sentence that keeps going through my head (pun intended) is "mild mass affect". That scares me on what possible treatment options will be suggested. Yes of course I will get more than one opinion :)
Kathy