It has taken almost a month to get this appointment. I swear it takes an act of congress to get an appointment! It has been a huge run around between emails and getting nowhere fast. I am off work today so I went by my sister-in-law's and got her to make the call for me. I mean come on, how hard is it to make an appointment? Everything is approved and all I need is to see the surgeon and set up a surgery date. It took a few calls to actually get a person but we succeeded! I go meet my surgeon on October 26th and I hope on that day to say, "I have a surgery date".
I am so excited and so nervous as well! I have so many emotions going through me right now it is hard to describe!
Friday, September 16, 2011
Saturday, September 3, 2011
It's Been A Tough Week
A couple of weeks actually. Since my approval, things are at a stand still again. My counselor always says she will get right on it but nothing happens. I tried to "help" things along by emailing the surgeon myself. I told them I was approved and waiting for AB but would like to get on the waiting list ASAP, could they call my counselor to confirm my approval.
My response to this (within an hour) was to forward my email to someone at VR. *sigh* I got a response from them the next day only saying they could not get involved. I don't understand why the surgeon's office could not make a phone call. I would be on the list and probably have an appointment with the surgeon. Even though the recall has not ended as of yet, it is coming in the next few weeks. I would like to have all of this done by that time but it doesn't look like it is going to happen. :-(
My response to this (within an hour) was to forward my email to someone at VR. *sigh* I got a response from them the next day only saying they could not get involved. I don't understand why the surgeon's office could not make a phone call. I would be on the list and probably have an appointment with the surgeon. Even though the recall has not ended as of yet, it is coming in the next few weeks. I would like to have all of this done by that time but it doesn't look like it is going to happen. :-(
Saturday, August 27, 2011
I Have Changed Surgeons
I have been fortunate enough to meet some wonderful people at Hearing Journey! I have talked to several of them via email and gotten some wonderful advice! A BIG thank you to you all... you know who you are.
I was "assigned" a surgeon that is closest to me but NOT very experienced. The worry started. My emotions have been all out of whack the past week anyway. *sigh* I emailed my counselor to ask if I had a choice of surgeons and was very happy to learn I did! YEA!! There are several people at HJ that are in the same area I am so I have gotten good recommendations from them. I have decided to have my surgery in Tampa. It is a drive from here but I don't think that compares to a good surgeon. I will go back to Tampa for the initial activation but then I will find a local audiologist for adjustments (mappings).
There are a few centers scheduling surgeries now for September and October so I think they know this recall is coming to an end. I don't know how long the waiting list will be in Tampa but I hope to be added soon. I am not waiting for my counselor to notify them, I have already done so. I was surprised to get a response from my email within an hour saying they would contact VR. I am hopeful I will have a surgery date soon even though it may be closer to the end of the year. It's getting closer... I'd like a date!
I was "assigned" a surgeon that is closest to me but NOT very experienced. The worry started. My emotions have been all out of whack the past week anyway. *sigh* I emailed my counselor to ask if I had a choice of surgeons and was very happy to learn I did! YEA!! There are several people at HJ that are in the same area I am so I have gotten good recommendations from them. I have decided to have my surgery in Tampa. It is a drive from here but I don't think that compares to a good surgeon. I will go back to Tampa for the initial activation but then I will find a local audiologist for adjustments (mappings).
There are a few centers scheduling surgeries now for September and October so I think they know this recall is coming to an end. I don't know how long the waiting list will be in Tampa but I hope to be added soon. I am not waiting for my counselor to notify them, I have already done so. I was surprised to get a response from my email within an hour saying they would contact VR. I am hopeful I will have a surgery date soon even though it may be closer to the end of the year. It's getting closer... I'd like a date!
Friday, August 19, 2011
Have I Reached The Top Of My Climb?
Here it's been another 2 months since I have posted...
The past 2 months have been difficult to say the least. My counselor has given me the run around since the beginning and that hasn't changed. Monday she sent me 2 emails. I opened the first to find out that my CI has finally been approved by Tallahassee!! Whoooo Hooooo I am in shock. I quickly email her thanking her for letting me know and how relieved I am. Then I open the second email. This one says "sorry my mistake, it was approved by the medical consultant and now goes to Tallahassee". What a let down! She did however email it to Tallahassee instead of snail mail and today.... yes today I got an email from her saying "This is REAL! It's been approved!"
Now I'm almost scared to believe this until I see it in writing. LOL My wait is not over however. I still have to wait for this recall to be settled with the FDA and then have to wait my turn on the waiting list. I have emailed my audie and told her I have been approved and asked her to get me on that waiting list. I am hoping she will tell me how long this list is but don't know.
There are so many emotions going through me now it's hard to describe! I have so many hopes that this will give me my life back but then I wonder if it is possible. For over a year now I have been slipping further and further into isolation. It's not where I want to be but it is easier to deal with. Can I actually pull myself out of this pit? For now, I'm going to try to think of the positives and pray this will work for me!
The past 2 months have been difficult to say the least. My counselor has given me the run around since the beginning and that hasn't changed. Monday she sent me 2 emails. I opened the first to find out that my CI has finally been approved by Tallahassee!! Whoooo Hooooo I am in shock. I quickly email her thanking her for letting me know and how relieved I am. Then I open the second email. This one says "sorry my mistake, it was approved by the medical consultant and now goes to Tallahassee". What a let down! She did however email it to Tallahassee instead of snail mail and today.... yes today I got an email from her saying "This is REAL! It's been approved!"
Now I'm almost scared to believe this until I see it in writing. LOL My wait is not over however. I still have to wait for this recall to be settled with the FDA and then have to wait my turn on the waiting list. I have emailed my audie and told her I have been approved and asked her to get me on that waiting list. I am hoping she will tell me how long this list is but don't know.
There are so many emotions going through me now it's hard to describe! I have so many hopes that this will give me my life back but then I wonder if it is possible. For over a year now I have been slipping further and further into isolation. It's not where I want to be but it is easier to deal with. Can I actually pull myself out of this pit? For now, I'm going to try to think of the positives and pray this will work for me!
Tuesday, June 7, 2011
Update..
Well, it's been awhile since I have posted. Geeze, almost 2 months!
I had my last appointment which was for a psychological evaluation! LOL I haven't seen anyone carrying a white coat for me yet so maybe I'm safe. This was a very strange appointment though. Everyone from the Hearing Journey had told me it was not a big deal. They just want to make sure you don't think the surgery is an instant "fix". I went into this appointment thinking, "no big deal, I KNOW what to expect and have even watched the surgery". So I go in and am handed a book to fill out. I was asked to describe my childhood and the whole bit! Well, I left that blank thinking this didn't pertain to me. LMAO I filled in most of the rest and waited. Once I was called back, I go into an office with a guy that has a face FULL of hair! Have you ever tried to lipread someone with a face full of hair? Have you even ever tried to lipread? LOL So he says "something" and I just look at him dumbfounded. I had no clue. I tell him I am deaf so he holds up a finger and shuffles through some papers. Comes out with a letter from my counselor that says I am hard of hearing but do well face to face. LMAO My counselor THINKS I do well because I have no problems lipreading her! He starts looking through the book I filled out and I mention to him that I didn't fill in my childhood because I didn't think he needed that. So he says tell me about it then. OMG! I was there for 3 HOURS! He gave me another book that had about 500 statements in it and I had to say if they were true or false pertaining to me. Very long day!
My counselor says she has sent off the paperwork. She says it will be about 2 weeks before she gets an answer yes or no if I am approved. I say "she says" because it took me 5 months for her to set up this last appointment that she said she would do ASAP. LOL The US is still waiting for FDA approval so AB can get back to business. AB is back over seas and even in Canada now so it should be any time now. No one knows for sure. Can't predict the FDA.
I had my last appointment which was for a psychological evaluation! LOL I haven't seen anyone carrying a white coat for me yet so maybe I'm safe. This was a very strange appointment though. Everyone from the Hearing Journey had told me it was not a big deal. They just want to make sure you don't think the surgery is an instant "fix". I went into this appointment thinking, "no big deal, I KNOW what to expect and have even watched the surgery". So I go in and am handed a book to fill out. I was asked to describe my childhood and the whole bit! Well, I left that blank thinking this didn't pertain to me. LMAO I filled in most of the rest and waited. Once I was called back, I go into an office with a guy that has a face FULL of hair! Have you ever tried to lipread someone with a face full of hair? Have you even ever tried to lipread? LOL So he says "something" and I just look at him dumbfounded. I had no clue. I tell him I am deaf so he holds up a finger and shuffles through some papers. Comes out with a letter from my counselor that says I am hard of hearing but do well face to face. LMAO My counselor THINKS I do well because I have no problems lipreading her! He starts looking through the book I filled out and I mention to him that I didn't fill in my childhood because I didn't think he needed that. So he says tell me about it then. OMG! I was there for 3 HOURS! He gave me another book that had about 500 statements in it and I had to say if they were true or false pertaining to me. Very long day!
My counselor says she has sent off the paperwork. She says it will be about 2 weeks before she gets an answer yes or no if I am approved. I say "she says" because it took me 5 months for her to set up this last appointment that she said she would do ASAP. LOL The US is still waiting for FDA approval so AB can get back to business. AB is back over seas and even in Canada now so it should be any time now. No one knows for sure. Can't predict the FDA.
Sunday, April 10, 2011
Tinnitus
Did I spell that right? LOL
This is something I have not spoken about to anyone. I'm not even sure why. When it started, I didn't know this is what it was. Now I do. It started about the time my last hearing aid failed me and there was nothing else they could do. I remember going to see my audiologist trying to get some clarity out of my hearing aid. I had only one as my other ear died on me the year before. Sitting in her quiet office, I kept hearing a roar. I asked about a noisy A/C unit or something else making a roar and she said the air was on and she could hear it. But to me this was really loud. It was so loud that if I were able to hear her talking it would have been drowned out by the roar. I questioned it no more but then it stayed once I left.
I never know when it will decide to come visit or even what type of noise I will hear in my head. I have not yet had voices in my head telling me to do strange things though. LOL Lots of times it's a roar which is very annoying. Sometimes louder than others. I have had a few nights where it would not let me sleep. Not fun! Sometimes it is a piercing "tone" for lack of a better word.
I sometimes too have what I think to be "phantom sounds". This mainly happens while watching television. There is no sound because I live alone and don't know how loud it would be for one thing. It's not necessary and I use closed caption. So I know what is being said and sometimes it "sounds" like I am hearing their voices. Seriously! Don't get out the white jackets and I have no idea if what I "think" I am hearing is really how it sounds.
From everything I've read everyone is different so there are no guarantees. With a lot of people tinnitus goes away while wearing the CI. I am hopeful this is the case for me.
This is something I have not spoken about to anyone. I'm not even sure why. When it started, I didn't know this is what it was. Now I do. It started about the time my last hearing aid failed me and there was nothing else they could do. I remember going to see my audiologist trying to get some clarity out of my hearing aid. I had only one as my other ear died on me the year before. Sitting in her quiet office, I kept hearing a roar. I asked about a noisy A/C unit or something else making a roar and she said the air was on and she could hear it. But to me this was really loud. It was so loud that if I were able to hear her talking it would have been drowned out by the roar. I questioned it no more but then it stayed once I left.
I never know when it will decide to come visit or even what type of noise I will hear in my head. I have not yet had voices in my head telling me to do strange things though. LOL Lots of times it's a roar which is very annoying. Sometimes louder than others. I have had a few nights where it would not let me sleep. Not fun! Sometimes it is a piercing "tone" for lack of a better word.
I sometimes too have what I think to be "phantom sounds". This mainly happens while watching television. There is no sound because I live alone and don't know how loud it would be for one thing. It's not necessary and I use closed caption. So I know what is being said and sometimes it "sounds" like I am hearing their voices. Seriously! Don't get out the white jackets and I have no idea if what I "think" I am hearing is really how it sounds.
From everything I've read everyone is different so there are no guarantees. With a lot of people tinnitus goes away while wearing the CI. I am hopeful this is the case for me.
Saturday, April 9, 2011
Is It Finally Going To Happen?
I think I am getting a little closer. I am afraid to think it might actually happen soon because I have thought that many times only to be shot down. However, I did go see my counselor yesterday. It was not a scheduled visit but I happened to be in the same town she is in so I dropped by. I got lucky and caught her there after only an hour and a half wait! It was so worth it. I did get that appointment I have been waiting on for the past 4 months and it will be May 17th. I will be there with bells on! We had a very serious and long heart to heart yesterday and I think she realizes where I am at. This needs to be done soon!
I also have been in contact with my audiologist. She tells me that the cat scan I already have done is ok with the doctor so I don't have to have another! Great news there as I won't have to wait for my counselor to schedule this one! She also tells me that they expect AB to end the recall mid to late July. Of course there is now a waiting list for implants so again I'll have to wait my turn but I do see the light at the end of the tunnel!
My counselor told me yesterday that after this psych evaluation that I will have everything I need. She will send all the reports to Orlando and they will check to make sure everything is in order and send it to Tallahassee. Tallahassee says yes or no. She will get an answer via email in about 2 weeks after sending it to Orlando. So, if I can get her to send in the reports, it looks like I will be approved around the time AB is back in business!
This has been quite a journey so far and really it has not even begun yet. This is not an instant fix and will take lots of work to make it happen. I am so ready to exit this silent world and enter the one with sound again. I know we all have things we have to deal with but this is by far the hardest I have ever had to. I have so much compassion and admiration for people dealing with things that are much tougher than this is.
I also have been in contact with my audiologist. She tells me that the cat scan I already have done is ok with the doctor so I don't have to have another! Great news there as I won't have to wait for my counselor to schedule this one! She also tells me that they expect AB to end the recall mid to late July. Of course there is now a waiting list for implants so again I'll have to wait my turn but I do see the light at the end of the tunnel!
My counselor told me yesterday that after this psych evaluation that I will have everything I need. She will send all the reports to Orlando and they will check to make sure everything is in order and send it to Tallahassee. Tallahassee says yes or no. She will get an answer via email in about 2 weeks after sending it to Orlando. So, if I can get her to send in the reports, it looks like I will be approved around the time AB is back in business!
This has been quite a journey so far and really it has not even begun yet. This is not an instant fix and will take lots of work to make it happen. I am so ready to exit this silent world and enter the one with sound again. I know we all have things we have to deal with but this is by far the hardest I have ever had to. I have so much compassion and admiration for people dealing with things that are much tougher than this is.
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