ANA Discussion Forum
General Category => AN Issues => Topic started by: Myjoyjordan on November 09, 2009, 09:11:37 pm
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I am new to the board. I am 29 and got diagnosed 4 months almost with AN. It was 4cm and we did surgery. It all started last year when I got pregnant. I got vertigo but thought it was part of the pregnancy process (or so my ENT told me) and it would go away after I gave birth. Once I did the vertigo got worse. I got a second opinion and had an MRI (which I vcouldn't do whenI was preggo) and the AN was dscovered as the cause of my vertigo. I decided to have surgery to reduce the AN because removing it totally would permananetly damaged the nerves on the left side of my face and I didn't want to scare my kids.
After surgery I caught Menigitis and ended up staying in the hospittal for 3 months & now I have a shunt in my head. We will do radation in a few months on the remainder of the AN. I lost the hearing in my left ear and am weak on the left side but my surgery was in Aug and I am still rehabbing. However, it's hard to rehab with a newborn but at least I am alive!!
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Myjoyjordan (love your user name!) .....
Welcome to this Forum and so glad you found us. You had a whopper of an AN, plus an unfortunate (and unusual, I might add) complication during your recovery. You will find here a very sympathetic and understanding group of people. You can always come here to vent any frustrations you may have, as well as ask any questions.
Having a new precious bundle is a big motivation to work on your rehab as you are able. Remember our motto, rest first, then exercise as you can (just walking is good exercise), then rest. Notice that is twice as much resting as exercising ..... I assume you have someone with you full-time to help with the household ..... your job is to get well and cuddle that sweet baby, someone else should do everything else for awhile.
Let us know how you are doing.
Thoughts and prayers.
Clarice
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Hi There,
Welcome to the group. I do hope that you are feeling much better and recouping nicely at home. Enjoy your new baby too. Sorry to hear that you had such a tough road. Keep up your spirits, we are all rooting for you. You are a strong, young person and we are here to support any way that we can. You are in my thoughts and prayers.
I wish you a speedy recovery. God Bless.
Gingerbread6
How old is Jordan now? I have a six year old daughter who is the love of my life. Enjoy her.
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Hi!
So glad you found this FANTASTIC forum, wonderful folks here who will listen and hopefully help you along the way.
You are so young - can't imagine going thru this at your age! [I am 50+].
But the good news is you ARE young and that should aid you in your recovery.
You have been thru so much - rest and take care of your precious baby - that should be plenty of exercise.
All my thoughts and prayers to you and your extended family.
Sincerely,
Sue
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Hi and welcome to the Forum!
To echo Clarice - you had a whopper of an AN and a whopper of an experience! Holy cow. I can't imagine going through post surgical recovery with a newborn - I think you deserve a medal!
Glad you found us.
Debbi
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Hi
Welcome to our little group! I simply cannot imagine having a newborn to take care of after such a big surgery. You are one tough cookie! My tumor was 3.8 cm so I can identfy a little bit with how you must be feeling. I had a little fine motor skill weakness on my AN side post surgery as well and it did improve...slowly. I found the more I used that side to do everyday things-even if it was clumsy-the better things seamed to get. Keep your eye on the ball-your precious new baby-and that will pull you thru this. You have such great things to live for! Take care and I wish you a continued recovery without further complications!
Erin
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Thank you SO much for the love and support. It means so much because no one understood what I was going through. It is hard but I have the help of my mother (who helps A LOT) and my husband. I ended up having 5 procedures on my head and had 3 seizures while in the hospital. I had/have days where I want/wanted to give up but it's amazing how strong you can be when you have no other option. I couldn't leave my girls without a mother. I still have to do radiation which I am nervous about. My girls:
Jordan is 8
Aaliyah is 3 1/2 months
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So glad you have your mother with you! You have been through so much and to be posting here is a major accomplishment for you! Congratulations! Hang in there ..... The radiation part should not be anywhere near the trauma you have been through. I'm hoping Moderator Jim will post soon because he had a big AN that was debulked in surgery, followed by radiation and he has done extremely well.
I had an 8 year old girl when our youngest son was born (although I also had a 4-year-old in between) and she was a tremendous help. It is amazing what an 8-year-old can do when needed, as I am sure you are finding with Jordan.
Thoughts and prayers continue.
Clarice
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Welcome to the forum. I am sorry you had to go through all that but glad you found this forum. Although you have had a hard time, stay positive and keep strong. You are young and you will get better.
Vivian
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Hello and welcome, Myjoyjordan ~
Although I'm a little late I want to extend another welcome to you while offering my commiseration for the difficulties you've had to endure that were associated with your AN surgery. Thankfully, that is now in the past and you're recuperating while caring for and enjoying your newborn baby, Aaliyah. I assume the baby is named after the singer, Aaliyah (Haughton) who died in a plane crash in 2001 at age 22. Fortunately, you have your mother and husband to help and I sense that you're intensely determined to get through this, so I'm confident that you will. As you noted in your last post, it's amazing how strong you can be when you have no other option. Our children are always great motivation to get well because we know how much they need us (and vice-versa).
Thanks for taking the time and making the effort to register and post. You're definitely among friends here and are welcomed and encouraged to ask questions and offer your own comments. :)
Jim
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Sorry you had such a hard time, you are young and determined so hoping you will continue to get better. Children are such a driving force, makes you forget about yourself and keep putting one foot in front of the other whether you feel like it or not. Good luck and keep us posted.
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Wow, what a story. You've been through so much, I seriously can not imagine. I'm glad you are home now, and slowly starting to recover. It's great that you have an understanding (and helpful) hubby, and mother. You definitely need help and support through this.
I'm glad you're on the other side. You have a great attitude about it all, and I'm sure that will fuel your recovery even more in the future. Good luck with the radiation. Keep us posted.
Cheers,
Adrienne
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Welcome! I`m hoping you`ll find this a nice place to communicate while your recovering. There are so many prayers for you in this healing process. Will be looking fowards to see your recovery. My best wishes, Mickey
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I echo everyone's comments and hope your spirits are lifted whenever you see your little bundle of joy! I too cannot imagine what you have gone through as I am pre-op. I hope I have to fortitude you are showing if I have similar problems post-op. Please vent to the group here whenever you are feeling down...you aren't alone in this!
Take care, Jay
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Oh, wish I could do more for you. Sounds like alot of the worse is behind you and hopefully after all you have endured the rest will seem easy peasy. You have found a wonderful support group!
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Thank you everyone for the kind comments. It took me 2 days to respond to everyone because I am having a build up of fluid build and its causing me bad headaches and the doc needs to adjust my shunt next week. I am feeling pretty down......with all these problems and now my daughter is embarrassed to be out with me cuz I don't have any hair. :-(
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Hi Myjoyjordan
I hope and pray that you are doing better. Better days are ahead. Be strong and God will see you through. We are here for you, whenever you need the support.
My thoughts and prayers are with you.
Gingerbread6
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HI,
I know i'm late chiming in, but just wanted to wish you the best, and to tell you (again) that we all are here for you, pulling for you, wishing you the best.
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Dear Myjoyjordan,
I wrote to you privately awhile ago. Welcome to the AN forum! You have many issues regarding the AN and might like to consult more specialists before, making anymore serious moves.
Where are you planning the radiation? Try to stay with a "team" that is really experienced as, it's not the decision so much to finish with radiation which will help you. The important part here is that the steriotactic radiation be precise enough in the target spot.
If you have any further information regarding meningitis as well, please post in my thread regarding that topic. I and others need to be informed with this.! Were you told that once you had meningitis you're more at risk to contract this again? (mine being bacteria related and I got it right after arriving home from, a month travel all through Europe) As I mentioned in my related-thread, keep antibiotics with you just in case you might be able to take them if you feel you're having such symptoms (getting meningitis) while away from your immediate doctors.
As you see below, I'm connected with Stanford. (awaiting to hear my latest MRI results) I've only good comments to say, about Stanford Hospital!
Where in California are you and I'm wondering with whom you met, discussing your further options to combat the existing Acoustic Neuroma tumor?
I found a note in my email folder dating-back only six weeks ago. This email was written to the person with whom accompanied me on the vacation. I had mentioned my symptoms in the email and they seem like a "bad cold" coming on. The email I wrote was written just hours before, I was in a coma. Little did I know......
Take care,
Palace