ANA Discussion Forum
General Category => AN Issues => Topic started by: jenn on January 31, 2007, 12:09:54 am
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I was diagnosed in Sept. 06 and had surgery just before Christmas at the age of 38. I am writing this because after I was diagnosed with AN I jumped on the internet to learn all I could about my condition. I was able to look up a lot of good information about what was going to happen surgery wise but not about the human aspect of the surgery. Was I going to have headaches, how soon would I be back to a fairly normal routine, etc. Everything I read was negative, negative, NEGATIVE!! It really frightened me some of the testimonials. I am a positive person and my experience with my surgery has been good and I want to share with you that it is going to be OK.
My surgery was the Trans Lab because I had severe hearing loss, it was 5 1/2 hours at Loma Linda Univ Med Center here in Calif. While in the hospital I had to have a second surgery for the CSF leak coming out of my nose. After 6 days I was discharged to home. The first week I was weak and dizzy. I walked with the assistance of a walker and needed help getting out of a chair because of the abdomen incision hurt. The second week I was walking with only assistance from my husband. I had to have another surgery because my abdomen had a very large blood clot that needed to be removed. Minor surgery and I am glad I went ahead with it because I have healed much faster. The third week I was walking by myself outside and around the house. I was even attending my graduate classes twice a week, my husband drove me. The fourth week I started driving around my town. Now, six weeks later I am driving on the freeway and at night. Not too much because I tire easily from concentrating so hard and looking around. I did have Bells Palsy the second week but went away after 2 weeks. Now that I did not like because my face froze and my eyelid would not work so I had to really protect it and I still tape it shut at night.
Even though I had to have 2 extra surgeries from complications I have done exceptionally well in my recovery. It has been six weeks and I am almost back to my normal routine. I have come to the conclusion that the more I am active the less imbalance I have. Each week that passes I am getting better and better. I have had an awesome support system with my family and the prayers of my church family and this is what has sustained me. My outlook on life has changed. I do not take for granted anything and do not let the little things bother me. I think the main reason for my recovery is that I went into the surgery with a positive attitude. I faced my condition head on and I conquered it one week at a time plus I am starting student teaching in February and that was a motivating factor. I do not want to postpone. As of now my plans are full steam ahead to start next week Feb. 5. God Bless!!
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HI Jenn,
Fantastic to see a great success story! Those are never or hardly ever on forums, for some reason.
Continued success in your recovery and good health!
Ciao, Lorenzo
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Hi Jenn:
Thank you so much for posting your story. The good stuff needs to be told!!
Best of luck to you, Kathy
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Wonderful read,
Wishing you continued healing Jenn,
Nancy
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Jenn, it is great to read your story. I too, believe there is a great that can be said for positive thinking. You didn't sugar coat anything...rather you made it very clear that it is possible to get through this and move on with your life.
Thank You!
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I am happy, you situation is working out so good for you and your attitude remains positive.
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Good Luck. If you had gone to House clinic you probably wouldn't have had the csf leak
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Thank you so much for posting your positive experiences. I just found out this morning that my surgery will be sometime the week of April 17th.
Linda
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Good Luck. If you had gone to House clinic you probably wouldn't have had the csf leak
Sam, I have to chime in and note that the comment about the CSF leak may have been a wee bit out of line (IMO). As we all know, each indivdual reacts differently to surgeries, has different outcomes, etc. I know many here that had their surgeries on the East Coast that did not run into CSF leaks, so their surgeons were just as good.
I appreciate your thoughts and respect them, but House Clinic is not the only place to have AN surgeries (yes, their reputation is wonderful for AN surgeries, but so are other locations around the States).
Thanks.
Phyl
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jenn,
Hi and welcome! :) Goodness, you certainly have been through a lot in the past months, but I love your spunk/attitude as you are forging ahead and like so many others, life does go on post AN treatment. I'm sorry to hear that the journey has been a bit bumpy but keep that attitude and you are going to do great.... plus, you have all of us here that have some good ears, great shoulders, bad jokes, watered down drinks and hugs for when you need them. So glad to see you here.
Hang in there... please rest when you need to... and know I'm cheering you on! :)
Again, welcome!
Phyl
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I was also a bit dismayed over the CSF leak statement. I also had a leak but the hospital had just changed to a new (meaning cheaper) colloidal implant and all of a sudden they had 3 leaks. My surgeon does AN's on a weekly basis and one nurse said they rarely see a leak. One would need to have further details about possibly why a particular leak occurred.
Cheryl R.
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(hi all. Hoping that the CSF leak comment has now been addressed and we can continue to our regularly schedule post and wishing jenn well in her recovery. She's doing a marvelous job and as her thread subject line notes..."positive outlooks". Thanks for staying on track. Phyl)
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Didn't mean anything negative, glad Jenn is doing well.
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your gonna feel even better a few months from now! .. It took me a good 6 months before I felt "normal" and now a year+ later.. I feel even BETTER !! the tumor had been draining me for years !! I'm still a kultz! ;) and feel "off" at night .. but I can live with that .... :)
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(psst, jenn... I've met JoeF... yep, he's a klutz! :P)
continued wishes to you for speedy recovery/wellness. :)
Phyl
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Thank you everyone for your replies!! It makes me feel just great!! Has anyone gotten the BAHA (bone conduction hearing device)? Since I am going to be a teacher, it has been hard for me to hear in the classroom environment and I think this would help me hear what I need to. I am thinking about the surgery in summer... :)
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I have a BAHA, and consider it a luxury, I do fine without it because my good side is 100%, but it does add to your life.
However, it is additional surgery, and the hardware is not covered by ins, and costs $4000. Rachel, in audiology, at House is the local expert, she has a demo unit you can try before deciding..
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hi jenn....
JoeF also has been wearing a BAHA for a while and has pictures of his as well (I think on his frappr page). Nice to get as many perspectives on it as you can, between Sam, JoeF and others here. Here's the link to JoeF's profile if needed: http://anausa.org/forum/index.php?action=profile;u=510. Here's another great link from the "Hearing Forum" of the site. It contains a link to a video about BAHA... http://anausa.org/forum/index.php?topic=2905.0
Hang in there!
Phyl
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This was about 4 months from the AN surgery .. so the hair was still a little thin
(http://image2.frappr.com/pics5/i/20060224/0/f/1/0f14a0e6477b1aa406415e3ad40652661_large.jpg)
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Jenn:
Congratulations on your positive approach to this medical crisis,and your continued excellent recovery.
Pre and post-op, I, too, had highly competent, experienced physicians, a solid support system at home and a positive attitude. These all helped things not only go well - no surgical complications - but my recovery was rapid and basically total, within weeks. My neurosurgeon was caring, compassionate and throughly experienced with AN removal surgery (30+ years ). My leak-free, complication-free post-op experience validated my trust in his expertise.
Good to read another positive outcome to AN surgery. We need all we can get. I'm afraid some folks are so happy to be done with the surgery that they basically abandon this site and we never hear from them again. Nothing we can do about that except to show our deep appreciation to those who 'come back' and share their good news with us.
Thank you for doing that. :)
Jim
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Thanks for sharing a wonderful story. Made me smile today! ;D
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Jenn, congratulations on your positive outlook. Glad things are working out well for you. I had a translab and have no hearing left. It has been okay working in the classroom that way. I teach 4th graders and they are good about it. I am in the process of getting a TransEar. I'm hoping that will help me pick up the conversations on my deaf side. What will you be teaching? Good luck with that.
Jean
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Jean, I am in the process of getting my Multiple Subject Credential. I am conflicted with what grade I want to teach. I have preschool experience and I thought teaching K or 1st would be good but the more I work with the older kids the less I want to be in the lower primary. 3rd or 4th grade would be good because they are more independent and the attitude hasn't developed like 5th or 6th grade. Where ever I am placed after school I will just adapt and be thankful for a job. Right now I am a poor poor graduate student starting student teaching on a volunteer basis. No one wants to take interns here in Calif.!! I have not heard of the procedure that you are having. Is it better than a BAHA or CROS devices and do you tell the students that you are deaf on one side so to speak loudly and clearly?
Jennifer
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Jenn,
Those are all excellent grades to teach. Last year when the school year began I was teaching Kindergarten. I taught kinders the year before also. My surgery was Sept. 6 so I was only with them for a week. Just before my surgery there was a third grade opening that I took. I came back on Halloween to begin teaching them. This year I was able to take my class and loop to 4th grade. I love whatever grade I'm teaching at the time. All the grades have their own unique features that make them fun.
The TransEar is a hearing aid. There are some threads on here about it. Even without I hear my students well. I just can't hear them as well when they talk directly to my left side. Good luck in your teaching.
Jean
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Hi Jenn,
I'm glad to hear that all is going well and that your positive attitude has helped you through this journey. We approached my daughters surgery with as much positive thinking as possible but knew in advance the odds were against her. Even at her worst, we kept looking for the positive. This kind of thinking helps to make us strong.
Do you live near Loma Linda. We are from there. Chelsea, my daughter, was first refered to a neurosurgeion at Loma Linda but our instincts told us to go to UCLA as she needed to be with someone with a lot of experience with the possible complications we were told about. We were happy with our decision. I know that Loma Linda has fabulous doctors and I'm glad everything went well for you.
Also, my husband is a teacher in the Redlands School District. He teaches 5th grade and loves this age. He has had several levels over the years and really likes the 4-5 grades the best.
Best of luck......Michelle
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Congrats on your recovery!!!
I have a Baha and I'm 38 with 3 kids. I love it and can't imagine life without it.
Check your pm's for more info! :)
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My husband Bob, also had a very positive result from surgery. He was diagnosed on Oct 2, 2006 with small AN. We went to several places in our state (Florida) to seek different opinions. Two doctors told him not to do anything for now, another told him to have it removed very soon. Due to the conflicing opiniions, Bob decided to sent his MRI to Dr. Brackman at House. Dr. Brackman suggested that Bob not wait too long for surgery. To make a long story short,we flew to LA and Bob was operated on January 16th with the translab approach. Dr. Brackman suggested the translab because Bob did not have much hearing to save. Everything went very well. no facial problems, no dizziness not even a headache, of course he is deaf on the left side. It has been four weeks and Bob is back at work and back to walking 4 miles a day. Needless to say, we are very satisfied with the treatment and doctors at House Clinic and we tahnk God for such a positive outcome.
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I really like to hear about those positive stories. I think even if I had many more complications it would have been OK. I look back and it seems a long time ago that I was searching for some comfort on the internet and not getting any. So to hear more stories of success even if it was after a long recovery is better than all of the negative.
It is so great that Bob is doing good. Actually, more than good because he is already back at work. I did not push the back to work. Being a mom and all I wanted to be "taken care of" for at least a little while. :D
I believe that maybe why some AN'ers do really well is the positive mental outlook on life and being relatively healthy. It would make a good study. Will Bob get the BAHA implant to be able to hear bilaterally again or use the hearing aid devices?
I have heard many good things about House but unfortunatley my insurance, being an HMO, gives limited choices and I am happy that the "choice" went well.
I do have to report that I have interviewing for jobs and my short term memory is not working well. I call it my brain freeze. I am asked a question and I am trying to find in my mind the information but it just stays blank. Now, maybe I am not a good interviewee but this is very frustrating. ??? Anybody have the same problems?
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Jenn,
Just wanted to say - Thank you! Thank you for sharing your story. It is wonderful to read positive AN stories. Wishing you continued success in your recovery.
Hope more ANers will post their successes! Love reading them!