New here- recent Post CI surgery user with some questions..

[Profileofadream]

Hi guys!

I've been lurking for few weeks now and your forum have been extremely helpful in my recovery process since October 31st which was my surgery. Recovery has been somewhat diffcult for me but I'm allright now. I just have some questions here but first let me tell you a bit about myself and my background:

I'm Catherine- 23 years old female college student, prelingually deaf with Profound Severe senironeural (sp?) hearing loss, uses sign language as a method of communication..Little oral skills and wore hearing aids til i got in a deaf school at 10 years old- that's when i stopped wearing. I've had residual hearing for most of my life- according my parents; i've been turned down for being the CI candiate based on my residual hearing and it was experimental at the time when I was younger ( ages 4 and 6 years old). I guess this is the third time charm that i got approved for CI few months ago due to complete hearing loss in my both ears. just had surgery almost a month ago on my right ear.

Anyway, here is the questions:

1) I am from indianapolis, so the search process for speech therapist has been extremely difficult for me. I have called everywhere and there is no one available to work with me, so far so it got me extremely frustrated because i want to learn how to hear and speak at the same time. So I was wondering if any of you are from Indiana or Indianapolis that can help me find one who is available? If anyone of you are with a speech therapist- recommend me someone! I'm extremely new to Indiana (moved to Indianapolis after Hurricane Katrina hit Louisiana) so please bear with me!

2) After CI surgery, have some of you guys have difficulty sleeping at nights in terms of comfort (I.E some pain or discomfort that keeps you up even though you tried otc)? I've been having trouble sleeping at nights because of that and I had to give in, calling the pharmcist for a refill on painkillers last night so i could take it to sudue the pain and sleep the night away. It is frustrating!

3) I had no idea how emotionally the whole thing would affect me- its more of a shock or trying to figure things through you know that feeling after surgery? Have any of you guys ever experienced these emotions? I was completely prepared for surgery- researched about CI for a long time before i decided. I was blown at how much emotions could affect me after surgery!

Edit: I have one more question: I have read on the forums and some websites about Cued Speech after CI- Do you think Cued Speech would benefit a CI user with a history like mine? Do you guys recommend Cued Speech as a form of speech therapy or just good ole fashioned speech therapy?

Anyway, Nice meeting you guys! Thanks in advance for your help. I feel like I need support in this and it has been not really easy month for me!

Catherine

 

[sr171soars]

...

Anyway, here is the questions:

1) I am from indianapolis, so the search process for speech therapist has been extremely difficult for me. I have called everywhere and there is no one available to work with me, so far so it got me extremely frustrated because i want to learn how to hear and speak at the same time. So I was wondering if any of you are from Indiana or Indianapolis that can help me find one who is available? If anyone of you are with a speech therapist- recommend me someone! I'm extremely new to Indiana (moved to Indianapolis after Hurricane Katrina hit Louisiana) so please bear with me!

2) After CI surgery, have some of you guys have difficulty sleeping at nights in terms of comfort (I.E some pain or discomfort that keeps you up even though you tried otc)? I've been having trouble sleeping at nights because of that and I had to give in, calling the pharmcist for a refill on painkillers last night so i could take it to sudue the pain and sleep the night away. It is frustrating!

3) I had no idea how emotionally the whole thing would affect me- its more of a shock or trying to figure things through you know that feeling after surgery? Have any of you guys ever experienced these emotions? I was completely prepared for surgery- researched about CI for a long time before i decided. I was blown at how much emotions could affect me after surgery!

Edit: I have one more question: I have read on the forums and some websites about Cued Speech after CI- Do you think Cued Speech would benefit a CI user with a history like mine? Do you guys recommend Cued Speech as a form of speech therapy or just good ole fashioned speech therapy?

...

Catherine...welcome to AD!

I'm sorry to hear of some of your frustrations and pain from the surgery. Just hang in there as it will get better over time. Everybody is different in how they respond to the surgery and aftermath.

To answer your questions...

1) I would think your CI center could recommend somebody for speech theraphy if not assist you with this important endeavor. If you are not oral in background, it may not be so critical for you to get that started so soon as sounds would be a challenge in of itself. Have you been hooked up yet? I would assume have been but you didn't say.

2) Normally, most people don't have much pain after a week or so. Some do for a little while longer. Are you referring to general pain from the CI or sleeping on that side? For me, the pain was pretty much gone after five days or so but I couldn't sleep on my CI side for several months.

3) No, surgery was pretty straight forward for me. But I had other kinds of minor surgery in the past so it wasn't a big deal in that sense. Had you ever had surgery before? If you hadn't, I can see that it might have messed you up some. I hope that it calms down for you as you go.

4) I would imagine that cued speech would benefit you especially if you have not been oral in focus before. Unfortunately, I'm not really familiar with it as I have been a mainstreamed oral type from the beginning.

Anyway, hang in there and we are around to help in anyway we can.

 

[Profileofadream]

Hi Soars,

I havent been activated yet- the big day is on 7th-8th of December which i am pretty excited. The Cochlear Implant team (my audiologist) have given me a list of therapists and so far they havent been available- I have tried calling them and emailing them. I even tried the provider list from my insurance and called them but left message but they never got back to me. So frustrating!

Emotionally wise- well, I've had surgery previously- but I think this one is major for me. Its basically life changing. I was totally prepared for everything up to the surgery. I knew what it would happen, what to expect and etc. But I did not really expect that I'd feel little emotional about things.

As for the sleeping- its both- its hard to sleep comfortable in a certain position and sometimes i get shooting pains from implant, i guess its still healing though. Sometimes i can feel the implant but that will go away with time of course! I just got the green light to wash my hair anytime i wanted to- which I am pretty thrilled!

Thanks for your help! I appreciate it!

Catherine

 

[sr171soars]

...
I havent been activated yet- the big day is on 7th-8th of December which i am pretty excited. The Cochlear Implant team (my audiologist) have given me a list of therapists and so far they havent been available- I have tried calling them and emailing them. I even tried the provider list from my insurance and called them but left message but they never got back to me. So frustrating!

Yea, that can be so frustrating. I'm sure you will finally find a speech therapist eventually.

Emotionally wise- well, I've had surgery previously- but I think this one is major for me. Its basically life changing. I was totally prepared for everything up to the surgery. I knew what it would happen, what to expect and etc. But I did not really expect that I'd feel little emotional about things.

I guess it is the fact you will "hear" again is overwhelming...

Funny for me, I "knew" I would hear and that I would do well with it. It turned out even better than that.

As for the sleeping- its both- its hard to sleep comfortable in a certain position and sometimes i get shooting pains from implant, i guess its still healing though. Sometimes i can feel the implant but that will go away with time of course! I just got the green light to wash my hair anytime i wanted to- which I am pretty thrilled!...

Yep, it can be difficult to find a great sleeping position. However, the shooting pains bit concerns me, you might want to let your surgeon know about that. It isn't the typical symptom one experiences with a CI. I'm not trying to alarm you but rather to make sure that you get it checked out and that it is not serious.

Best of success on your hookup!

 

[LuciaDisturbed]

First off, I want to say, Welcome to the CI forum! You've come to the right place!

I havent been activated yet- the big day is on 7th-8th of December which i am pretty excited. The Cochlear Implant team (my audiologist) have given me a list of therapists and so far they havent been available- I have tried calling them and emailing them. I even tried the provider list from my insurance and called them but left message but they never got back to me. So frustrating!

Doesn't the therapists have a secretary or something like that? The person that answers the phone when you call? Tell that person you would like to make an appt with the speech therapist.

Emotionally wise- well, I've had surgery previously- but I think this one is major for me. Its basically life changing. I was totally prepared for everything up to the surgery. I knew what it would happen, what to expect and etc. But I did not really expect that I'd feel little emotional about things.

If you are used to being deaf, it can be life changing for you. Give it time. And if those in the deaf community are giving you flack about having a CI, ignore them. They need to grow up.

As for the sleeping- its both- its hard to sleep comfortable in a certain position and sometimes i get shooting pains from implant, i guess its still healing though. Sometimes i can feel the implant but that will go away with time of course! I just got the green light to wash my hair anytime i wanted to- which I am pretty thrilled!

I would think that is normal, I had some pain like that after surgery (oct 11th) but it's mostly gone now.

 

[LuciaDisturbed]

Yep, it can be difficult to find a great sleeping position. However, the shooting pains bit concerns me, you might want to let your surgeon know about that. It isn't the typical symptom one experiences with a CI. I'm not trying to alarm you but rather to make sure that you get it checked out and that it is not serious.

For about 3-4 weeks after surgery I had the little shooting pains in my left ear, I spoke to my surgeon and he said it is normal, it is just healing. Now it's pretty much gone, so I guess that is what Catherine is experiencing? But I do agree, Catherine, have it checked out with your surgeon anyway.

 

[Profileofadream]

Soars and Lucia,

The shooting pains arent really that bad- i only get them randomly i guess. not so severe to make me go ughhh stop it! Even though its hard to sleep comfortably cuz im not really used to the implant in my head haha! just miminal discomfort i guess.

I have a feeling that it is normal and i did tell the dr when i had the check up few weeks about these pains, he said it was normal and it'd go away with time along with other syptoms i had few weeks ago.

I think its the fact that everything- the idea of "Oh my god, i actually did it and i am going to hear soon!" is kinda overwhelming.. I'm still processing the fact I just had surgery few weeks ago haha! It didn't hit me that I actually had surgery til three days after when my boyfriend was helping me to wash my bloodied hair- I had to take out the ponytail holder and a little bit of hair fell out, i bawled right there! Again, I'm anal about my hair haha! but I don't regret my decision and i'm in fact excited about the activation.. Just wishing that the days would go faster so i can just see what it turns out for me!

As for speech thing, I have called these places but its always the damn answering machines which I did leave a message for them to contact me back at a certain email address- since then, they havent gotten back to me. ugh.

Also, I have heard before- but just a little bit. I still have some memories of sounds and I think I kinda know what they are like. So I guess that's also a good thing.

 

[sr171soars]

For about 3-4 weeks after surgery I had the little shooting pains in my left ear, I spoke to my surgeon and he said it is normal, it is just healing. Now it's pretty much gone, so I guess that is what Catherine is experiencing? But I do agree, Catherine, have it checked out with your surgeon anyway.

Ah! Learn something new everyday!

Thanks...

 

[sr171soars]

...

The shooting pains arent really that bad- i only get them randomly i guess. not so severe to make me go ughhh stop it! Even though its hard to sleep comfortably cuz im not really used to the implant in my head haha! just miminal discomfort i guess.

I have a feeling that it is normal and i did tell the dr when i had the check up few weeks about these pains, he said it was normal and it'd go away with time along with other syptoms i had few weeks ago.

Glad to hear it!

I think its the fact that everything- the idea of "Oh my god, i actually did it and i am going to hear soon!" is kinda overwhelming..

See! I told you so!

Also, I have heard before- but just a little bit. I still have some memories of sounds and I think I kinda know what they are like. So I guess that's also a good thing.

That is a good thing! All the better...

 

[Profileofadream]

Soars,

Yeah! I'm pretty much impatient now- I wish the day of activation is tommorrow! It's driving me crazy- i have dreams of me hearing sounds so It's like "COME ON ALREADY!" lol

How long have you had the implant? What were your experiences with activation?

 

[deafdyke]

Also, I have heard before- but just a little bit. I still have some memories of sounds and I think I kinda know what they are like. So I guess that's also a good thing.

what about the age at which you went deaf? I have to say that I think that a lot of the "prelingal" sucesses with CI are those who heard normally at one point even if it was only for a month or so. I KNOW I've seen, research thingys saying that a lot of the sucesses are people who once normally heard.
Their brain can remember somewhat what normal sound sounded like.
That gives them an advantage over someone like ME ("only" hoh, but been hoh since conception)
What about expectations? Are you going in with a "blank slate for which anything is possible but nothing is promised?"
Just really hard to tell how well you'll do with your CI.
Oh, and have you tried a hearing aid on your other ear yet? One of my friends got absolutly ZERO benifit from the hearing aids(even a body worn aid) that were in use back when we were small (she's our age, a twentysomething). She decided to try hearing aids again, and she can hear a LOT now with them! Like she still has a significent loss, but she's now getting speech that someone with a severe loss might get. Might be worth trying for the other ear.

 

[Profileofadream]

Deafdyke,

My deaf is congential but I have had one incident where I've "miraclously" regained some of my hearing for some werid reason few years ago when i was in high school. I have periods of hearing things a little bit not that well enough though. Can't explain why how it happened- but the tests i had years ago when that happened actually showed a increase in my hearing but not enough to make a impact but I did hear things that I never heard before. Hence why I have memories of sounds at some point.

As for the speech therapy, I will use speech therapy as the severe hearing loss person would recieve- along with the auditory training. I am looking into cued speech because seems that there's some talk about that possibly helping people with history like mine have success with speech. What do you think? I'm just figuring things out how to work with my CI when I get activated.

Catherine

I might try hearing aids with the CI and see if it works.

 

[sr171soars]

...

How long have you had the implant? What were your experiences with activation?

Er...if you look at my avatar you will see that I have been a borg since March 2005.

Ummm as for my experiences with activation, it was rather interesting. I got started with the "mapping" bit where they test out and establish your thresholds (lows of various frequencies). Then, they turned me on...slowly up until much louder than I anticipated where they would put me at. My audi asked if I could hear her. I understood her speech and said yes. I was one of the fortunate ones that heard speech right away. My own voice was far too loud for me and I had to whisper at first (funny now looking back).

We left the center and the vehicles (especially the trucks and buses) were too loud to say the least. Next, we went to a restaurant to celebrate and while I could understand my wife and son clearly, I had a harder time with my younger daughter. That took another two days as her voice pitch was too high. The noises in the restaurant drove me crazy as there was too many things going on at once. Things like the music, the plates clanging, all the people talking, the whole bit. Anyway, the first day was crazy but held so much promise and it turned out to be a fantastic start.

Overall, it was a little overwhelming and slightly confusing as I had to "learn" all the general sounds over as they were slightly different. It took me about four days to get on balance and pretty much understand everything I heard. Speech I had down by the second day and I could carry on conversations with anybody at work without a problem. I was using the phone by day four or so with my brother. He was shocked how well I heard everything compared to before with my HA several months prior to that moment.

 

[R2D2]

Welcome to AD Catherine!

Hi guys!
2) After CI surgery, have some of you guys have difficulty sleeping at nights in terms of comfort (I.E some pain or discomfort that keeps you up even though you tried otc)? I've been having trouble sleeping at nights because of that and I had to give in, calling the pharmcist for a refill on painkillers last night so i could take it to sudue the pain and sleep the night away. It is frustrating!

Yes I did have trouble sleeping at night. But what helped me was to actually sleep on the implanted side. I did this from about day 5 or so after surgery and then after that I could sleep okay. My theory is that when I was sleeping on the non implanted side my neck muscles became all sore from trying to support the injury. But with the scar on the pillow it gave my whole head support - does that make sense?

3) I had no idea how emotionally the whole thing would affect me- its more of a shock or trying to figure things through you know that feeling after surgery? Have any of you guys ever experienced these emotions? I was completely prepared for surgery- researched about CI for a long time before i decided. I was blown at how much emotions could affect me after surgery!

Yes, my emotions after surgery was about the unknown - not knowing about how it was going to turn out. The last week before activation is a real killer - every hour seemed to drag.

Edit: I have one more question: I have read on the forums and some websites about Cued Speech after CI- Do you think Cued Speech would benefit a CI user with a history like mine? Do you guys recommend Cued Speech as a form of speech therapy or just good ole fashioned speech therapy?

I've heard lots of positive things about cued speech and it does sound like it would work well for someone with your history. However I am an amateur and I really would try and get hold of a speech therapist who can give you guidance in this area. If you don't like him/her find someone else even if it's a big pain to you - it's very important to have a person that you trust and feel comfortable with.

Good luck with activation and don't forget to keep your expectations low for the short term (I'm sure you already know this since you have already done your research). I'm really interested to see how you get on in the long term.

 

[Profileofadream]

R2D2,

Now that makes sense- I felt really uncomfortable when i slept on other side opposite from the implanted side but it felt better if i slept on the implanted side. but I end up worrying if i'd put more pressure on the area that is healing and that it wasnt good. i guess i'm just a worry wart. ha

As for the emotions- that's exactly how I feel right now! you just put it that way better than I did!

I'm going to try to get ahold at least ONE therapist next week. at least see if i can talk to them into taking me.

 

[Hear Again]

I also had similar problems to you in being unable to sleep on my implanted side for awhile due to pain. I found it helpful to sleep in a recliner so that my head remained elevated.

As for the emotions you are experiencing following surgery, they are completely normal! Following my first surgery, I had all kinds of thoughts running through my head. Most of them concerned the excitement I had about activation and what that would be like.

Like you and Lucia, I also experienced occaisional sharp twinges of pain. My surgeon said this is normal and part of the healing process. The twinges of pain that I had disappeared within a few days.

I bet you're glad you finally have surgery behind you. I can't wait to read all about your activation! <smile>

 

[Profileofadream]

Hear Again,

I will definitely let you know what going on with the activation thing in several days from now

Catherine

 

[Cloggy]

Catherine, wellcome to AllDeaf,

I'm quite sure you will fing a lot of answers here....

 

[Lillys dad]

Welcome! I echo Cloggys statement.

 

[greema]

I double echo Cloggy's and Lillys dad's comments!

You've come to the right place! (I'm deaf but I'm not implanted -- my deaf grandson was implanted last summer and I lurk here to learn and yes, I'm learning -- you will too!)