Frustration

[Jimit]

You are a brave girl @Enegra, you will get through this and come out even stronger, Just stay positive. 

[Mary Beth]

@Enegra

We will send positive thoughts your way for sure!

[Enegra]

As I mentioned in the monthly chat in July, I am still not done with the journey.

In June I had a surgery to reimplant the right ear. On the same day I had a fall that caused a lot of extra swelling. There was a lot of pain and neurological symptoms, but due to the swelling the surgeon couldn't confirm whether or not the implant was okay. I had CT scan taken and it didn't show anything out of the norm, but specifics like exact location are not something that is easily readable in a 2D picture - according to the doctors.

It was later found out that the implant moved outside its bone well and was protruding a lot, causing a lot of pressure, which in turn led to severe nerve irritation, which manifested in the neurological symptoms. It was also discovered, that unfortunately, Finland uses a budget version of the implant, which is meant for developing countries. The difference is significantly thicker casing, and I seem to be one of the few people in the world where it makes an actual difference... not just aesthetics. The surgeon did shave the bone even deeper and used glue to secure the implant in place this time. I hope that is the end of the problems on this side, currently the implant is not sticking out much and there is very little pressure, but there is a non-zero chance that this all may yet repeat.

Before the surgery I had a MRI scan for my trigeminal nerve, and that one was a complete fiasco. For some inexplicable reason the radiology team believed that the only cochlear implant manufacturer is Cochlear Ltd, and refused to listen to my explanations. The wrappings with a magnetic splint caused some damage to my left side. Due to healthcare taking vacation in July, there hasn't been any time to investigate the issue, and I've been just left alone to deal with the pain, that's been getting progressively worse over the last two months. The worst part is the vertigo I get when trying to lay down to sleep, it keeps waking me up. Last week I lost the ability to use the processor altogether (which has been already rather sparse due to pain), as everything out of the sudden was distorted and my face getting stimulated. So far no improvement on that.

Yesterday I had an emergency appointment at the hospital to check out the left side, and activate the right side, so that I wouldn't be completely without sound. They still didn't have full staff there, so I only saw my surgeon who has very limited experience with the fitting software. He called himself "the backup of a backup". Thus, the activation was pretty much "how you shouldn't do an activation": he took a picture of my old map from 1.5 year ago, then started the implant with the MCLs slightly lowered and gradually restored them. Absolutely no tweaking because he had no training in that regard. Well, on the positive note, the implant works, I managed to understand speech right away to some extent, but heavily artefacted, somewhat like in a badly off tune radio. Today, the artefacting is largely gone except the highest frequencies. Stuff sounds more normal, but everything has the wrong pitch. I can suffer with that until I get a proper map, the alternative was either no access to sound at all or getting my face zapped all the time. Unfortunately, because there was no proper technician for tuning, this also meant I did not get integrity testing of the left side done. So it's still a complete mystery what happened to its sound and the face stimulation out of the sudden.

Come on, I just want to hear...

[Mary Beth]

@Enegra

Your CI journey has been full of so many complications.  I am so sorry.

I continue to keep you in my thoughts and hope that soon things will get figured out.

[Jimit]

Sorry to hear about it @Enegra. Hoping the things started getting better when you get in touch with proper technician to get the correct map.

[Enegra]

It seems like my life is never simple.

By now the right ear is pretty much where I left it at a year ago. I can understand people in one on one just fine and am attending a really noisy event right now - hearing sometimes better than the hearing people. I had to repeat myself multiple times because people did not hear, while I got them right away. There is some pitch difference, but it doesn't affect comprehension that much and it would be fixed with mappings eventually. I have a CT scan and a mapping appointment coming in two weeks. Now it looks like it shouldn't be any problem to manage until then in terms of hearing. Basically, in some situations the right side performs already better than the left one did. Some environments are still tricky, but they get better eventually. This is why I was so devastated by losing the right side for a year - it had always been my dominant side.

Now, the right side still has an asterisk. There's some swelling in the area and currently the Sonnet doesn't quite fit on the ear without chafing against the implant. That makes wearing the processor on the ear quite painful. I have had to wear it on a headband . There is some hope that once whatever is around the implant, causing it to protrude more, subsides, then the Sonnet would fit. However, even best case scenario shows that there would be like no clearance between the implant and processor though, and the pessimistic scenario is that I won't be able to use the processor without having it rubbing against the ear. Time will tell. Rondo, unfortunately, is not an option for me.

There are no changes to the left side yet. I am supposed to have an appointment in ten days. where they would take a closer look at it. They are being upfront though, that it may take a longer while to figure out the course of action, because without any symptoms visible on the surface diagnostics are hard. A CT scan likely wouldn't reveal anything meaningful about the implant area. It's a little bit like looking in a cup of tea and trying to read the future.

 

[Enegra]

I think I owe people an update, as I will be unable to join the meeting this month due to scheduling conflicts.

In over a month of time I haven't received help from the hospital regarding the pain. Additionally, the lead doctor decided to display his arrogance and incompetence, so I will be changing the hospitals.

The statement from the lead of the hospital was that they can either remove both implants or I learn to live with the pain. Neither is acceptable.

So it's definitely time to cut ties with that place.

I am currently in a little bit better shape, but not thanks to the hospital. I managed to find a way to reduce the symptoms, so I can finally sleep and recover. The left implant seems to have survived despite moving around and just required some mapping changes.

The right side still has some mysterious swelling. I managed to find a way to somewhat wear the processor on the ear but it's still very tender. I was again left alone to deal with it, with zero answers.

The glimmer of hope is that it's nice to finally hear with both sides again, even if not full time yet. I missed having directional hearing. It still works, at least to a certain extent.

There are still some things I am excited to do in the future and I am happy that it looks like I can win with the pain.

 

[Mary Beth]

@Enegra

I am glad there is hope and wish you the best at a different hospital.

[Serena Metzler]

7 hours ago, Enegra said:

I think I owe people an update, as I will be unable to join the meeting this month due to scheduling conflicts.

In over a month of time I haven't received help from the hospital regarding the pain. Additionally, the lead doctor decided to display his arrogance and incompetence, so I will be changing the hospitals.

The statement from the lead of the hospital was that they can either remove both implants or I learn to live with the pain. Neither is acceptable.

So it's definitely time to cut ties with that place.

I am currently in a little bit better shape, but not thanks to the hospital. I managed to find a way to reduce the symptoms, so I can finally sleep and recover. The left implant seems to have survived despite moving around and just required some mapping changes.

The right side still has some mysterious swelling. I managed to find a way to somewhat wear the processor on the ear but it's still very tender. I was again left alone to deal with it, with zero answers.

The glimmer of hope is that it's nice to finally hear with both sides again, even if not full time yet. I missed having directional hearing. It still works, at least to a certain extent.

There are still some things I am excited to do in the future and I am happy that it looks like I can win with the pain.

 

I am praying for you and please don't give up I know sometimes feels frustrating, just  keep trying it will get better soon and trust me I know you're doing though because I have been  there myself once, just keep trying your best because you got this, 😍😍😍😍😍😍😍😍😍😍😍😍🙏🙏🙏🙏🙏🙏🙏🙏🙏🙏🙏🙏🙏🙏🙏🙏🙏🙏🫵🏾🫵🏾🫵🏾🫵🏾🫵🏾🫵🏾🫵🏾🙌🏾🙌🏾🙌🏾🙌🏾🙌🏾🙌🏾🙌🏾🫵🏾🫵🏾🤩🤩💞💞💞💞💞💞🤩🤩🤩🤩🤩🤩🤩

Edited August 19, 2023 by Serena Metzler
A Few mistakes