ANA Discussion Forum
General Category => NF2 => Topic started by: Jeff on March 22, 2007, 05:48:23 pm
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Well,
The appointments and travel arrangements are made. I will have surgery at House on April 18th. Doctors Friedman and Hitselberger will again do the honors. I will get an ABI during the surgery. It will be turned on in late May. I think that my surgery will be none too soon, as the left side of my face, tongue, teeth, and the roof of my mouth have become numb over the past few weeks. I think that my eye has gone dry too. I suppose that we are as ready for this next adventure as we will be. :-\
BTW, a few weeks ago I asked about cell phones at St. Vincent's/Seton Hall. We decided to take Tracphones, which would serve nicely for text messages. And, they are relatively inexpensive to replace if they are lost or stolen. Today I ordered a Blackberry through Sprint Relay. Sprint Relay offers services for the deaf and hoh. It is $99 for the Blackberry and $29.99/month for a DATA only service plan, including nationwide unlimited Internet access and unlimited email as well as instant messaging. I'll let you know how it works for us.
Have a great day,
Jeff
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Hello Jeff,
I my sorry to hear you are starting to have the left side of your face, tongue, teeth, and the roof of your mouth become numb.
I wish you the best and extra prayers for you will be there.
er
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Thanks er,
I see in your signature that you are being treated at OHSU. My father had AN surgery there a few years ago and did very well. Doctors McMenamee and Delashaw did his surgery.
Have a great day,
Jeff
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Hi Jeff,
Today is five weeks post-op for me. Drs. Friedman and Swartz were my doctors at House. My family was very comfortable at Seton. Also, we all had cell phones and were able to use them at St. Vincent's Hospital and Seton. Some places you couldn't use them and signs were posted but all of the rooms at St. Vincent's Hospital are private and our cell phones worked there. They had a computer in the breakfast room at Seton but it was dial-up and it was VERY slow (don't we all get spoiled so quickly!). The rooms at Seton had a small refrigerator but there was a full size refrigerator in the breakfast room and everybody could put their food in there with their name on it or either the date and share if you wanted to do that. Hope the time will pass quickly for you and you will be back home before you know it.
Jean
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Jean,
Thank you for sharing. I am glad that you had a good outcome and that your family was comfortable at Seton. Unfortunately, this is not my first time to visit there as this is my second surgery (I have NF2). I do appreciate the information about using cell phones. I used the phone in my room to call my wife at Seton if she happened to be over there. I even used the phone to call the nurses station (long story). Now, since I will be deaf after the surgery, I am trying to plan for communication and text messaging seems to be the way to go. Thank you for your help in planning.
Jeff
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Jeff: You are now on my prayer list that all comes out with your surgery in April. That is what freaked me out when my ENT/ Surgeon in KC wanted too do surgery 2 years ago when they first found out. He also wanted to install an ABI stem at the time. I hope I do not regret the decision too go with FSR Radiation to perserve hearing. We are going too see him on April 6th for a consult just in case all this fails and surgery is my next option. He is going too try to fit me with a hearing aid too boost hearing level. I also wacth your posts too see how you are doing.Keep the faith and spirits and will be thinking about you. It is too bad as close as we are that we could not meet each other. I think that would be interesting. Well anyway-Take Care-and Best Wishes-Ron
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Hope all went well.
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Hi Jeff, hello everyone,
there has been no news about Jeff since he went to the hospital.
Has anyone got any news?
Please could one little crumb of news trickle here?
Thanks,
antoinette
Jeff, I hope you are all right. Thinking of you a lot these days... Drop us a line, please.
a.
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Jeff,
Wishing everything went well and hoping to hear from you soon.
Eve
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Hi Jeff,
I have been thinking about you and praying for you! I hope all is well!
Hang in there!
Carmen
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Jeff and Family,
You are still in our thoughts and prayers. W hope to hear from you soon,
Continue to take care of your self.
Lynn
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We continue to pray for you and your recovery.
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Hi;
Jeff continues his rehab at a nearby ( to his home ) hospital after 5 weeks at St. Vincents in LA. His ataxia from surgical complications is slowly improving.
NF-2er
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Hi, NF2-er,
Thanks for update. We were eagerly waiting for it. Sorry to hear that Jeff had surgical complications but it is great that he is recovering. Please, letl him know that we are thinking of him and wishing him well.
Eve
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Hi Eve;
I'll write Jeff Monday. We've been in touch since about 2 weeks post op.
There are many details, but for the sake of the privacy of Jeff and family, I don't feel it fair I post them.
Be well, Eve! Maybe one day Jeff will pop in here.
NF-2er
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Well, I told you that I was going, so I should tell you that I am home.
I had a bad time, but I am getting better. In surgery, my brain began to swell. My facial nerve "snapped." I had a stroke. My left side is affected. I couldn't move anything on my left side at first. I was kept sedated for some weeks, for which I am thankful because I can't remember anything from then. I had a pulmonary embolism, which lodged itself in one of my lungs. t is better. I was in St. Vincent for 5 weeks, came to my local hospital for Physical Therapy, but had to be transferred to another because I developed hydrocephalus and required another surgery for a shunt. I am home now. I continue outpatient rehab daily. I have moved from using a walker to a cane. I can stand unassisted. I can walk a short distance before using the cane. I was very weak after 7 weeks in the hospital, but I am getting stronger.
Jeff
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Hope that you continue wth getting stronger! From the way you suond, you wold not have even known that you have had a stroke.
Eve
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Thank you for the well wishes. I am thankful that I am getting better. I see progress quite often. All of this has been tough. Losing my hearing has almost become peripheral. Thanks again.
Jeff
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Jeff- It is with great relief too hear from you. I know alot on this group were very concerned about your welfare especially when we did not hear from you for awhile. I guess it just brings home the reality how serious a AN really is. We all take our health for granted. Here is hoping and praying that you progress in your recovery. I will not relate too you my current condition because I posted under AN Issues if you care too look. This post is about you and OUR CONCERN for your welfare. Please take care and God Bless. Ron
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Welcome back Jeff!!!
I am so relieved to see a post from you and very sorry you had so many complications.
Take it real easy and best of luck with your recovery.
Kathy
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Hello,
Thank you for your welcomes and well wishes.
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I am indeed thankful to be alive. My wife was called by doctors to my room more than once in the middle of the night because they weren't sure what would happen.
My progress continues and I am now walking around the house without my cane. I still use it when I venture out of the house. I am now doing household chores like emptying the dishwasher and doing laundry. This is helping me to get better and giving my wife a well-deserved rest.
I will have a gold weight implanted next month. I am ready to finish this adventure.
have a great day,
Jeff
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Hi Jeff:
I was so glad to see this post of yours. The no cane in the house must be such a good feeling.
Good luck with the weight and I do hope every day gets better for you.
Kathy
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Jeff,
I am really happy to hear that you graduated to "no cane in the house". Hope to hear soon that you don't use cane outside. Best wishes,
Eve
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Hi,
I wanted to thank you all for your prayers and well wishes I have steadily improved since returning home. I had a gold weight implanted and my lower eyelid lifted. This has really helped my eye to feel better and has improved my vision considerably.
I have begun to drive and that is going well. I began working 2 weeks ago. Tomorrow, the latest challenge begins when students return and I begin teaching as a deaf person
This journey has driven home this point to me: AN surgery is serious, and although they rarely do, bad things can and do happen
I am thankful for my life, my family, and my friends who have reached outm
May God bless all of you.
Jeff
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Jeff.
I praise God for your progress. I will lift you up tomorrow as you begin this next phase of your journey,
Take care,
Lynn