What Morris Says.....

BAHA PART 3 and FINAL

Helloooo!!!

 

 Sorry BAHA part 3 became pushed out with all the other things going on!

 

There's not much to say really. I think it's only now that my site is pretty healed up. It's taken ages to stop weeping and then scabbing over. It made the area around it pretty tender and the sensation in my head has been very strange, not being able to feel my skull properly, like having been to the dentist! That hasn't changed but the pain in the site is gone mostly :) Whats that ...6 months? That would be about right for healing. I have made a conscious effort not to sleep on it for a bit, and I actually stopped wearing the BAHA for a week to stop irritating it. Now it's generally lovely and I can swim and shower with it no problems now :) 

 

 

I had my LAST hearing appointment in February and whilst initially I failed the hearing test, actually losing some decibels of hearing off the last one (oops!)! We readjusted the BAHA on the new system and its working really well now and I have an EXTRA decibel of hearing from pre baha! 

 

 

We have adjusted it for dealing with the noise of my hair rubbing against it and wind noise is now best dealt with on a different setting where it can limit that input. I have bought myself an I phone 5 however as then I can use the APP that comes with the new BAHA 5 (iphone 5 and above) and its actually really useful to be able to change the volume and have your baha change settings for different environments automatically. For example, if I'm on bluetooth and I travel to an area that I have connected with my BAHA as a different setting, then my phone tracks this and changes the setting automatically. ie: work vs home!

 

 

Overall... YES I AM GLAD I HAVE DONE IT. It's so nice to be able to hear things that I thought were gone forever like people on my right and to know where things are. BUT.. what I will say is that I do have to have a break from it as it really works my brain when I am hearing so much and trying to work out what is where. I do think it helps me balance wise too as it allows me to hear from both sides which is more balancing in general. So thumbs up to the BAHA :) but it's no picnic! It takes a long time to heal and theres always this tightness in your skull... not to mention the R2D2 sounds whenever someone gets near it! hah I would say just be really sure that you want it, because you have to put in a lot of work in these first months to make it fit your life. After that I think it will be plain sailing. It already feels like it's always been there. Its a shame the head is more numb.... but that might have been coming anyway!! ha 

 

Morris update very soon.. just wanted to finish the BAHA Chapter! 

BAHA Part 2, pictures

Here is a little picture update of today! Stitch removal and dressings off.

TODAY was incredible... I actually heard something deep inside my head. My nurse was taking the scabs away from the abutement and he ran his tweezers over it. Metal on metal. I HEARD THE NOISE!!!!! On the bad side first, then I felt it along my teeth as if you were running a spoon along them, then slightly afterwards I heard it on the good side. I looked at my friend and said.. wow.. It's like hearing in stereo!! hah.. stupid really because that's what's normal for most!! 

 

I couldn't believe how much it made me smile! I don't know what it will be like with the sound processer on but It's a good start! 

 

Its been a tough week since the first appointment at 5 days. Headaches, dizziness, sickness and the serious post op blues. I haven't been able to really drive my car as it makes me really dizzy and sick but that's ok.. I just call for a chauffer!! hah ;) Painkillers haven't really worked because the pain is typical morris pain coupled with pain in the wound. It still feels like it's been anaesthetised but it's just swelling and this swelling is the thing that's causing the sickness and dizzy-ness. Ive been combatting it with slow movements and resting, getting really good sleep. Im really hoping it will all be worth it :) 

 

Here's the pictures of today. Wanted to show you how deep it is too.. just excuse the lanky greasy hair. Haven't been able to wash it for ten days!! One more week of careful skillfull washing to avoid the area and then I can properly as long as I dry it out well. Mine's healed really well so far and I have to clean it daily from here in. It's easy to do and doesn't hurt at all. Part 3 in a few weeks... sounds coming!! :)

1) With stitches, once the dressing is off

 
2) To show the depth

3) Stitches out

 

 

BAHA appendix! Picture alert!!

PICTURE UPDATE!! 

SLIGHTLY MORE GRAPHIC PICTURE ALERT!!!!

 

 

 

1)

Stitches and the Abutement. 

2)

After the stitch removal

3)

The depth of the Screw.

BAHA-HAHAHA part 1

Hello again! :)

 

 As promised it's time for a blog following the surgery last week to insert the Abutment (screw/peg) to hold in place and conduct the noise from the sound processer for my hearing aid into something to hear!!!  

 

So... I opted to have it done under local ..... all well and good until you break that cardinal rule and google it!!! That wasn't my finest moment.. and as a nurse I should know this, yet I think I thought that made me exempt!! Apparently not! Aaahhhh!!

 

 Im going to bullet point the surgery to make it shorter to read and try and expand after on the things you might find helpful (skip past if you don't want to know! It's not that gory... picture right at the bottom, not that gory.

1) Lie flat on my back head turned toward good side (left for me)

 

2) They shaved a good section around the area they plan to work. (left me the hair above so it would cover) 

 

3) They checked the CT (old one, post Brain surg) for skull depth, (need 2mm+) and draw on me where they're going in

 

4) They covered me over with drapes. So you can see out and breathe. Not too claustrophobic.

 

5) They cleaned me  (can feel this.. just wet) 

 

6) They put a needle through my skin on my head to see how deep that is. (no anaesthetic.. not painful at all) 

 

7) They injected local into the area where they are working (this just feels tight like pressure)

 

8) They tested the area with their scalpels (couldn't feel it at all) 

 

9) They cauterised (burnt) the skin to create a skin flap crescent shaped under the centre of which they put the screw

 

10) They did their thing!!!! Which involved a lot of pushing and drilling and scraping. You can hear it all. But no pain

 

11) They replaced and sewed up the flap (non-disolvable stiches) 

 

12) They put a bung in the screw head to fill it and underneath they put a an active dressing and some foam

 

13) RECOVERY... You can lie head straight on the pillow as it's off to one side. Had quite a headache but no site pain. A fair bit dizzy... but that could just be Morris being shaken?? 

 

14) 5 Days later: Dressings changed (couldn't get it wet or wash hair or anything) New plug applied.. smaller.  (still keep area dry) I hadn't leant on that side of my head at all in the past days. I do think that helped healing.  

 

15) 10 days later: I''ll get my stitches out and hopefully the dressings off...

 

16) 8 weeks later: BAHA fitted!!!!  TO BE CONTINUED....... 

 

So there you go! Sounds simple yeah? Well I guess it was.. and it was pain free but there's an awful lot of pushing and grinding and you can hear it all. When they started drilling it really set Morris off, just being vibrated makes my eyes go funny and I got some double vision again and couldn't see... so I shut my eyes!! It doesn't last long. When they were sewing me up was the only time it started to hurt. Not the stitches but deep inside my head It felt like. As if they were pushing right on it.  They re-did the anaesthetic and it was all good! 


Recovery was easy. Yes I had a shocking headache, but then that's one of my symptoms when Morris gets agitated.It wasn't wound pain.  Equally I'd already been on a tube that day which didn't help and I guess I was a bit stressed too. None of these make for a morris free day!! I got drugs for the pain in recovery and had to eat, drink and pee get my take home meds and go. I was in recovery a fair while as of course you are classed as a "high fall risk" due to the location of surgery, so they need to make sure you're stable (hahahah!!!!) 

 

​Getting home was probably the worst. I was going back to a hotel, and I'm glad I was because I wouldn't have managed a taxi or a train home. (2hrs) So it was three stops on the tube. I chose this over a car because I just couldn't take all the visual stimulus moving around me I was pretty dizzy. So tube it was.... It was hard work! Everyone moved out of my way and I think I probably looked shocking.. with blood in my hair and dark circles round my eyes. I pulled my hair over the site so you couldn't actually see anything. Apparently I did make some random comments on the train but I blame my meds!!!! ;)

 

The days immediately post op... I've been mostly sore with a Morris headache but also site pain which is sharp and very positional. My skull has remained numb like the anaesthetic not the way it was before and only now at day 7 is it starting to change back. There's been a lot of tingling. I've been feeling pretty sick and I think it just goes back to early brain surgery days when your brain just can't cope with too many things. It's healing, and trying to hear AND balance. Too much!! So i've rested and slept, rested and slept, and eaten pain killers like smarties!!! More because pain is so tiring than because the pain is unbearable. The dressing change was easy and the surgeon was pleased so all good!! 

 

So all in all.. BAHA... yeah I'm happy so far. If I'm honest I will wait and see how long this pain, fatigue and dizziness last. I had just about got myself into a life balance with how to manage the capacity my brain has. This seems to have tipped it all and I imagine it's just a post op thing. Ill keep you posted at part 2! I am going back to work monday, A week and half later so I'll let you know how that is too! 

 

So I'm bionic now! :) If i listen carefully I reckon I can hear your thoughts!!! BEWARE!!

 

Left pic = Op day

Right pic = day 5 

                                                                         

'ears to hearing!!!!

Evening :) 

 

I figured I absolutely needed to post a blog... Exciting news.........

 

THIS WEEK I FINALLY HEARD SOMETHING ON THE RIGHT SIDE!!!?!!!

 

It was all actually a little emotional!!  

 

How I hear you ask.... HEAR!! hahah no pun intended!!!

 

As you know I am completely deaf in my right ear. I haven't heard anything for 4 years now. At my last appointment. We discussed my headaches. They are really quite bad.. made worse by travel, dehydration, concentrating, exercise, lights, not eating, driving.... blah blah! Lots of things.

 

Talking to my consultant he said that he wonders if the fact that I use my eyes so much means that I am having to concentrate really hard and this may be the reason my head gets sore and I get tired. He thought if we dealt with one of my requirements (balancing or hearing!) then I would have more room for the other and then in turn I would have to concentrate less and it might help my headaches. So, roll on HEARING IMPLANT appointment. 

 

Ive mentioned before how I didn't want a hearing aid, but it turns out you can try it and see if it fits into your life so I thought ok why not!! So this monday saw me hot foot it up to London for the appointment. :) 

 

After a long chat about the two possible devices...

 

CROSS: A bluetooth device that has a digital microphone on your bad side and a reciever on the other which look like normal hearing aids. The noise goes into the microphone, the sound gets bluetoothed to the other side, sent into your good ear drum and then you can hear. As far as I understand, the noise is amplified so it can be fairly loud and often you can hear alot of background noise. 

         

 

 

BAHA: (Bone anchored hearing aid) A small stud gets implanted onto the skull bone on your bad side. Then you can attach the digital microphone onto the clip. The sounds that go into the mic are sent along the bone to your cochlear where the noise is processed and you can hear it. If you dont have a cochlear then it will travel around the skull to your other working one and then process the noise/vibration as sound to your good ear. (its a short procedure to implant the device. Local or general)

 

 

 I was offered the chance to take both home for two weeks to try them in my environment. Well.. he set up the BAHA for me. The demo one that you see in the picture is slightly larger than normal due to having to conduct through the band and hair. Normally it would go flush onto the skin and be slightly smaller. The band is for me to try it at home (or having cake in London as this picture shows!!!)

 

He asked me to put a plug in my good ear so I couldn't hear.. then they carried on talking.. one on each side of me. I COULD HEAR BOTH OF THEM!!!!!! Short of the fact one was on the wrong side so I shouldn't normally be able to hear, I had my good ear covered so all the noise was coming through the device. I could not believe it!! I could hear again!!!! It's actually really natural too, picking out the voices rather than the environmental noise. I was a little emotional to be honest. 

 

Next he programmed the Cross device. Once it was started all the noises in the room became much louder. Like I say, it's amplified and it really is because I was holding some paper and the rustle on it was really really clear! Initially hearing voices sounded a little like they were on "skype" or the telephone, very digital and a little far away but really clear. Again I could hear things happening on the dead side that prevoiusly I would have missed!!

 

Now we know that this all makes sense... its goal is to help me hear and it did! However the shock for me was walking in the street.. I almost had to take the Cross off because some things were so artificially loud. I imagine it would be a case of getting used to that type of noise input, but the best feeling was the feeling of being "reintroduced to society!!" Not by wearing a fancy gown and dancing with suitable batchelors... although that could have been fun!....???!!! Instead by the fact that my deaf side suddenly stopped being a dead zone. I could see again.

 

That sounds strange but having a deaf ear and a numb face has always made my vision on that side seem useless. My peripheries, whilst testing well, actually don't make me feel like I am complete when I wander around. I miss things that happen on that side as if the whole side is not functioning. Suddenly both hearing aids made me feel like I could stand tall again. I could talk to my friends without studying their lips to catch all the words, I could cross the road without worrying, I could hear people approaching and I even heard someone talking on the telephone by putting the phone up to the device!!!! (quietly but I heard it!!!)

 

It was the most mind blowing feeling to remember what it all felt like again! I know it's artificial but it's like being given another chance to be normal. I look forward to having conversations with people in this two week period and seeing if I feel more confortable doing so. I'd got so used to just clamming up and being quiet because I didn't want to talk because people respond and I always miss it or say pardon and I hate it. I've gone into myself so much in the last 4 years it's not nice and then monday... suddenly I just wanted to LOOK at everything, observe it all and not hide away. :)

 

Body image... well I have to admit that I found it a little daunting thinking of going to work with this headband and the baha attached. However I need to try it at work to see and they will just have to get used to it. Everyone will just have to get used to it because it would be a part of me. I had a fleeting moment where I thought what about dating. (or partners for some of you!) What will they think, will I still be attractive to anyone? I entertained this for a bit, but in the long run this makes me have my personality back so that has to be the bonus and be worth a small sci-fi device poking through my hair!! It really doesn't show as much as you think, plus... I reckon it makes me all futuristic! Maybe I can tune in to other peoples thought waves on it or something!! ;) ha. 

 

In conclusion.. I THINK I will be going for the BAHA.. why? Well it's simpler to attach and doesnt' iritate like the inner ear bits on the cross aids. It creates a more natural sound and manages to collect voice more than environment from what I've seen so far and that would be amasing. I will try it in some different environments and see how it fares! I'll keep you posted!! I wouldn't put anyone off the Cross. I know some of you are going this way. It's good and it's easy and it's less intrusive, my issue is that I want to feel natural again and the amplification on the cross is too much for me. I found it a little bit loud.

 

I guess we all make our own choices. I think I've made mine but I have two weeks to see! I'll FB about it!! I hope this info helps a little to some of you thinking about it, or having discounted the idea as not for you. Maybe there is time now for a trial????

 

Judes !

 

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