ANA Discussion Forum
General Category => AN Issues => Topic started by: squirrellee on July 23, 2007, 06:22:24 pm
-
I was diagnosed with a 2.6cm NA that was compressing by brain stem. I had noticed I was having problems with headaches, dizziness and hearing loss when my NA was discovered. I was told that it needed to be remover right away and that I probably would lose my hearing totally and that I would probably suffer some facial paralysis that would be sparadic and temporary. I had the surgery and my nightmares started. I woke from my surgery to discover I had almost bitten the whole side of my tongue off and they informed me that was due to me seizing during surgery because I suffered a heart attack due to the surgeon pumping too much fluid into my lungs. They took the breathing tube out about 5 days after surgery but after spending all day in panic trying to tell the nurses I wasn't getting enough oxygen they finally listened to me and did an emergency reinsertion of a breathing tube. I was on that for another 4 to 5 days wide awake trying not to fight against it. When I finally got off the breathing tube and out of ICU, I had already gone through ten days of hell and it still was only the beginning. When it came time for me to finally go home, the nurse removed the stitches in the back of my head and neck so I would not have to travel back to have them removed later. I was getting dressed to go home when I turned and saw my Fathers white face and shock on my husbands face as they told me that I had a gaping hole in the base of my skull. My husband ran and got the nurse who called the doctor. The doctor never came to look and just told them it was ok to let me go home that way. My primary care doctor was shocked when he saw it a few days later as I am diabetic also and he could not believe that the stitches where taken out so soon and left that way. Now I have a huge crater in the back of my head/neck area. I also still suffer from paralysis of my face 2 years later and have a pacemaker as a result of the heart damage. For the biggest hurt of my story, I am (was) a professial singer and due to the breathing tube having to be shoved down my already swollen throat, my vocal cord was paralyzed. I now have problems breathing, swallowing let alone singing. I am hurt emotionally, I am angry, I feel so ugly!! I isolate now, I am not the same and an NA has ruined my life. Sometimes I wish it had just taken my life. I am sorry to vent but I have kept all this inside me for so long.
-
Your story is the worst I have heard. I hope you find a way to get your life back and cope with what happened to you.
Forgive me for asking, but as a AN pt. and a medical doctor, I am really curious as to where you had your surgery??
Stay on this forum, you will find a lot of supportive people here.
-
Dear squirrellee:
I am so very sorry about all of your complications and very glad you found us.
Do you have a supportive doctor for your follow up? There are facial procedures etc...that you should
know about. I also hope you are seeing someone for the emotional part of this journey.
Please, like Sam said, stay on here. You need us, and we need you!!
Kathy
-
I am so sorry all this has happened to you and as Obita and Sam have said, please stay on this forum. There is a wealth of info and support available here, so please don't hesitate to ask.
Keeping you in my prayers.
Hugs,
Cheryl
-
I am at a lsos for words. Your story is so tragic. I have had horrific ramifications from radiation damage after the radiosurgery but your stoy tops anything I have experienced or read. i really feel for you. I know how desperate you feel. I can remember just hoping to live long enough to see my first grandchild's birth. I wanted him to know that I was there and that I love him, even if I wasn't going to be in his life for long. I truly thought I was going to die and I think the doctors did too but didn't like to say. I lost 65 pounds because I was nauseated day and night. My whole body would shivver and shake. I had to use a walker just to move around but basically spent 1 1/2 years in bed. I couldn't go anywhere because of the vertigo. I didn't see the inside of a store for 2 years, no lie. I had to be driven everywhere. I lost all my independence. I lost all my friends. Noone wanted to deal with someone with something they knew nothing about. If I had had cancer they all woul have understood that better. I had a great job doing political fundraising and had conversations with some of the most influential politicians in this country. But it was over in a flash. I can barely organize my own life let alone campaign for a major political race. I'd love to because it's in my blood but my body won't let me. I know exactly how you feel. I do have a psychologist that I see once a week and that really helps me alot. I am getting a bit better but it is a loooooong road. I have to say tht once I saw my randson for the first time, I wanted to live longer than that day. I think his presence has brought me the joy I needed to feel that life was good even when it was oh so bad. I wish you well. I know how much you hurt and I wish that I could help you myself. The people on this site are a great source of guidance and are here when noone else is. Email anytime. Holly
-
Oh my God!!
I don't know what to say. I'm so sorry you've had to endure all of this. I too, am a professional musician. How I got through as well as I did with a huge tumor I don't really know.
Could you tell us what doctors you had and where you had your surgery?
Paul
-
How horrible for you to be treated the way you were with your after care and your doctor. I take from this story that you more than likely felt pressured into taking the first doctor you were sent to and did not realize you had any options in any of the decisions that were to follow.
I hope that like Adrian and I have, you will find some comfort in this forum. I am sure there are some AN vets here that can probably relate to what you have dealt with. Knowing there are other people here who have gone through something similar as well somehow helps lessons the blow life has dealt all us. And also gives me hope not only in the human race again, but that we will get through this and survive.
I deeply sympathize with your whole ordeal and situation. I am sure there really isn't anything I can say that would help make you feel better... but if venting helps.. then we are here to listen. :)
-
Hi Squirrellee, and welcome to the forum. Reading your experience made my blood run cold. Everything you're feeling, the hurt, the anger, the betrayal...it's all justified. It must have been so painful for you to retell your story for us. You have definitely come to the right place for support. Please post again and let us know how you're coping.
Betsy
-
Squirrellee, I read your post and was stunned. I wollow in my own issues and have found that being able to talk about it really helps. I have only really communicated deeply with a few people on this forum but recently have openned up to my family and it has helped. I felt that I didn't want them to feel the burden of pain that i deal with every day so I masked it well, well, as good as i could. Some days my headaches are that bad, that its impossible to hide the anguish.
Having opened up well, beginning to, and that wasn't easy for me, I have actually found that it does help me because those around me understand, well they try to.
Your case is a shocker and I can only wish you the best going forward. Please make sure you vent to us and your family. What's happenned to you is inexplicable and down right awful, but try to grab some positive goals that will be hard but achievable. Set them with your family and strive for them. I guess like athletes pushing to run faster by .1 of a second - the work they have to do is enourmous.
I used to play golf religeously and wasn't too bad at it but since my AN some 4 years ago'ish, I have only really gone to the driving range coz I fall over too often. That hasn't stopped me though. I will plug away until I stop falling and my head stops turning when I swing the club.
keep trying and remember like everyone else before me, vent here as much as possible. send me a message and vent away. We will help you as much as possible.
Laz
-
I and everyone here stand with you for support. WOW, unbelievable account of your treatment. I pray that by telling your story and revealing yourself to us you will find more comfort, less pain and anguish. I, like so many of us, want to know who you went to! Please don't dwell on the should've, could'ves as looking back gets you no where and moving forward is the best medicine now!
-
I had my surgery done at Arnot Ogden Hospital in Elmira, NY by Dr. Kung. I was told that he was the only one in the area that could deal with the NA unless I wanted to travel a long distance. So, I took his opinion and followed it. If I could pass one thing on from what I have learned is get a second or even third opinion. When I went to my follow up appointment with Dr. Kung, he litterally joked about pumping too much fluid into my lungs. I was warned by many that he did not have a good bedside manner but never warned he could be so uncaring. I never went back to him again or anyone else for follow up care with my NA and it has been 2 years. I have tried so hard to just make it all go away. I have tried to live up to the standards I and others have set for myself only to face the pain of not cutting it day after day and the lonliness of hiding that fact from everyone as I "hide" away. To my peers, I am a Teen Sunday School Teacher, Worship Leader, VBS Teacher, Board Member, an Emergency Disaster Volunteer and a Program Leader amongst other things that I have pushed myself to do but behind all those rolls I perform, I have not been really alive inside. So i guess you can see how I try to cope. I have a hard time saying no to any project because I want to prove that behind this paralyzed face and craterd neck that there is someone that can still matter. I want to say thank you to all of you that have posted and reached out to me. It is like getting a virtual hug that I have needed for so long. I appreciate you all from the bottom of my heart and may God Bless you all as deeply as you have blessed me!!! Tammy
-
My heart goes out to you. I just sent you a personal message Tammy. Nancy
-
Dear Squirrellee,
Please find a good doctor and "please" get your follow-up MRI's when necessary. Others here will "jump" on this to tell you we will support you with encouragement. Thank you for your personal response to my own personal message to you. I don't know if reconstructive surgery is an option for you but, maybe someday. I had 21 surgeries and admit, I want no more surgeries. (mine were various types) I'm in PT right now for a bulging neck and bone spurs at the bottom of the bulges. I know you are in NY but, you could notify me or someone on the "call" list if things seem untolorable.
With respect and regards to you,
Palace
-
Hi, Tammy/squirrellee:
Just lIke everyone else, I was stunned by your account of the ordeal you've been through and of course, my heart went out to you, immediately. Although I had almost the exact opposite experience and was blessed with a caring, compassionate and highly experienced neurosurgeon and few post-op complications, I also realize that, but for the grace of God, my 'AN experience' could have been quite different.
Tammy, I'm so glad you've found a place to vent and express your feelings regarding what has happened to you. Your anger and frustration are certainly justified. Frankly, I can't say with any certainty that I would be able to handle what you have gone through without going into a total depression. I do hope you seek professional help of some kind to enable you to better deal with your situation and that the days ahead are better for you in every way. People do 'come back' from serious complications following AN surgery - we have a few that post here - and I pray that you'll be one of those and won't give up hope. We do care about you Tammy and we understand better than most folks what you're going through, even if we haven't had the exact same experience.
You certainly do matter, so please stay connected with us.
Jim
-
Hi Tammy,
I am so sorry you have so much to deal with. You are definitely in my thoughts and prayers. I certainly agree with the earlier posts. You have found a good support group. This is a wonderful group of people that truly care and understand!!!! Feel free to vent any time.
Take care,
Lynn
-
Dear Squirellee
I was dumbfounded reading about your terrible AN journey ! My heart goes out to you . I really admire your determination to keep on going against all the odds . I hope that finally coming out with your frustrations on this site has given you some relief . You are with friends on this site who will understand what you are going through.
Best regards Kat
-
Tammy,
I`m a "newbie" here too, may I add to what has already been said by urging you to stay in touch and continue the posts?
Isn`t it comforting to know that we are not alone , and that we can support / pray for one another?
Have you discussed your feelings with your pastor? If not you should................
Pat
-
Tammy,
I'm surprised you didn't file a grievance, charges or lawsuit because of what you have gone through. My heart goes out to you.
Sue in Vancouver WA USA
-
Tammy, the blessing here is you are alive! The surgery and the complications you experience and live with daily will help someone that you may never know. What you've been thru no one should have to go thru but it is over and it is ok to let folks around you help you. Do not beat yourself up about not getting 2nd or 3rd opinion! It's over and right now you need positive and comforting support during this time.
First of all, it sounds like you are involved in your church and many count on you, that is a blessing. However - your health and well being needs to come first now. Please find a new Dr and get your yearly MRI. Find a Dr who will listen and help you. All the things you are involved in at church someone can help you out and allow you to take time and heal.
This forum is an excellent support system and a wealth of knowledge. Please continue to post and share your concerns and issues. Majority of us on this forum have or had an AN and have had to deal with healing, disabilities, Dr's, MRIs, insurance, family, work and loneliness. I have learned so much and realized I am not alone.
My prayers are with you! God bless!
-
Tammy,
Oh yes, I remember Dr. Kung. Small world. He was still a neurosurgical resident at Boston Children's Hospital and on the team of neurosurgeons treating a young family member, many years ago. We were not impressed then, horrified now at this story. I do also remembering trying to contact him with followup questions after he had moved to Elmyra, but he never returned any calls. Please do find a competent and caring physician for followup. Glad you are on this board, everyone is so very pro-active with their medical care and so knowledgeable, kind, and empathetic. Good luck and keep us all informed. Terri
-
Tammy, you are quite a remarkable person. I can't imagine going through all that, or even one tenth of all that. But you have managed to persevere and be a productive person, despite it all. It is really in the end an inspiring story, even with that grisly beginning.
I hope you get a chance to pursue some or all of the medical treatments that could help with the facial nerve or the neck crater. Even more, I hope to hear from you here from time to time, whenever you feel the need to unload some of that burden. You are a real person, very much alive on the inside, and you matter a great deal to all of us.
All the best, Steve
-
Hi Tammy,
I remember reading something awhile back about Arnot Ogden Hospital having trouble recruiting and keeping doctors. Binghamton too; when I was considering surgery, I tried to find an experienced AN doctor in Binghamton (my mother and sister live near there), but couldn't find one. I'm still pre-treatment so I can't speak from experience, but I do know that follow-up care is critical. So far, I've been very impressed with Geisinger in Danville PA (south from Elmira, maybe 100 miles). It's out in the country, but the facility is huge and there are doctors there who are experienced in treating AN patients. Let me know if you'd like more info. You shouldn't have to suffer.
I admire you for staying so active and involved, although it's obviously difficult for you. It's hard to keep strong emotions inside; I'm glad you found this forum and shared your story with us. Please post again whenever you want....you have friends here.
Betsy
-
I am bumping this up hoping someone can help squirrellee find a doctor in her area for follow up care. Maybe Rochester or Buffalo NY?
Kathy
-
There is a neurosurgeon in Albany, NY by the name of Dr. Timothy Lovely. He operated on my best friend who had a huge (lemon size, frontal lobe) menengioma last December. His office is near st. Peter's Hospital and that's whee he operates. She was out of ICU in 24 hours never had one single setback and was back to work in 4 weeks. Her only lingering issue is fatigue but even that isn't too bad. She was very pleased with him and I know he operates on acoustics. She was so lucky because he told her that she might have a very long recovery which she didn't. It might be worth a consult. I know I wouldn't hesitate to have a conversation with him. Good Luck, Holly
-
Tammy:
How about Cornell University? That can't be too far from you. I know I have seen this doctor mentioned
on the forum. http://www.cornellphysicians.com/samuelselesnick/index.html (http://www.cornellphysicians.com/samuelselesnick/index.html)
Kathy