Update from Yours Truly

I thought I'd update all of you on a few things we have been working on behind the scenes with @Steve, the rest of the staff and our Team Members, and also on what's been going on with me personally.


Welcome Tinnitus...

Some six years ago I became "one in ten." Tinnitus struck me out of the blue like it has many of us — in my case, a seemingly innocuous syringing procedure left its lasting mark. I remember how I dreaded the ringing ears at first, but became adjusted over time.

That is, until my spontaneous worsening and an additional tone I got. Things really changed at that point. Figuratively speaking, if someone was pinching me with a needle before, now they were hitting me with a hammer. Never stopping.

Personally, I just didn't know what a more severe kind of tinnitus was until mine became worse enough not to be able to be masked by the majority of sounds. And I have no doubts mine could still get worse; I don't believe in "upper limits." However I do know I'm fortunate not to have hyperacusis or hearing loss, etc.


0.6 / 100,000 — Uninvited Guest...

So, as if life wasn't already difficult enough with tinnitus and some other afflictions (for example my vision troubles have been giving me a lot of grief) and family issues in my life, early this July, I noticed a wound in my leg.

Wound in leg? No big deal, right? These things heal in a few days. That's what I thought.

The wound looked ugly, had pus coming out of it, with violaceous edges. First it wasn't too painful, but has since become exceedingly painful.

It wasn't too large, but I started getting worried when it didn't begin healing at all. Actually, it started enlarging. What also worried me from the get go was that I didn't recall hitting my leg or causing any trauma.

Some weeks later I saw a top dermatologist, probably one of this country's best.

She suspected a very rare disease from the first sight, "pyoderma gangrenosum."

The odds? I read that it's estimated 0.6 out of 100,000 people in the UK get this.

Having to join a club for such a rare disease, it was — and still is — hard to wrap my head around.

Pyoderma gangrenosum is a difficult disease to diagnose, and it often suffers from delayed diagnosis or misdiagnosis. It's diagnosed on clinical evidence and confirmed through a process of elimination of other possible causes.

I went through further testing with the doctor and the wound care clinic excluding other causes.

The diagnosis was confirmed.

Now I'm on highest strength topical steroids. They are making the wound edges look a little better, but it is likely I will be started on systemic treatment soon. I believe this includes long-term prednisone @ 1-2 mg / kg / day and possibly cyclosporine to go along with that, or either one tried first on their own. There are some other treatment possibilities, but I think she said this is the first line treatment.

Prognosis isn't generally too good, the cases I was told about took from anywhere of 6 months up to 7 years to heal (and two cases never did), and there's of course a considerable rate of recurrence too. Usually the ulcers are found in the legs, but sometimes they can develop all over the body. This is one of many diseases where they just can't predict how it will develop.

I'm taking pain meds and yet the pain can be really intense.

Combine squealing ears and messy eyes (severe pathological myopia with literally a ton of vitreous floaters) with unhealing intensely painful wound and you have a recipe for misery.

Long story short, life can throw your way some curve balls you definitely were not expecting... well, we all know that. It remains to be seen how I end up with all of this.


Our Future

We have been bogged down by many things. From spring 2015 till early this year, we were heavily involved in a legal case with Antinitus, a case that felt quite ruthless to be honest. We were very fortunate to secure UK's top lawyer and his legal team in this particular expert area. Nonetheless, those months were daunting and really made us realize how much we've put ourselves through.

Eventually, we are planning to publish a descriptive account of how that story unfolded. We feel it will make for interesting reading.


Long overdue (you wouldn't believe how tiresome it has been to try and find a team able to handle our brief, while fitting our budget), the new Tinnitus Talk will be emerging soon (by the end of October if all goes well). I know we've said this before. We've always hit roadblocks. Either we've been given quotes going up to astronomical +$100K, the folks just haven't had the required expertise or something else surprising has sidetracked us. Let me preface this that this will be the Phase 1 of our long-term plan. Phase 2 includes the coveted merger with what we have envisioned for a long time, the "Tinnitus Hub." We are very much aware of "change aversion"; we've taken every measure to make sure that the changes are for the better — hopefully liked by most.

In a way this is good because time has given us fresh perspective and new ideas. Some of the new features we will be presenting will include something that is going to further pave the way for our "patient research" agenda. With our member numbers, we hope this can make an impact.


A major undertaking this autumn will be working with Tinnitus Research Initiative on the Frontiers Research Topic "Towards an Understanding of Tinnitus Heterogeneity."

We are in the process of helping drafting patient messages for the research articles and also planning as effective outreach campaign as possible.

And you, our members and visitors, will be able to play your part. The prize is a conference award valued at $100,000 — and no matter win or lose, the prize is increased exposure and awareness for tinnitus research. I guess you all would think this is important.


Of course there is more than this being cooked up in our "laboratory," such as a collaboration in the works with a YouTuber who has almost 1M active subscribers and who wants to do their part in helping tinnitus sufferers. Not to mention something quite significant that will involve most of the well-known organizations dealing with tinnitus working together, very much including us - all in the name of increased attention to tinnitus (and hopefully research funds as well).


Thanks for reading and for being such a supportive group of people. Onwards and upwards!

 

@Markku,

It looks like I have the honor of being the first to comment on your post. I am so sorry you've been going through a lot personally, and hope the treatments will be successful in treating your very unusual condition. My grandmother suffered from leg ulcers for many years, so I can imagine what it must be like for you to go through this, along with tinnitus, eye problems, and so many other life changes.

I am truly excited about the changes that are coming to Tinnitus Talk, merging with Tinnitus Hub, and the collaborations coming up in the months ahead! We are so lucky to have you, and to be a part of all the exciting changes going on with regard to this forum.

I'm sure everyone will join me in thanking you and Steve for all you do, and looking forward to the future!!

Very best wishes,
Karen

 

I'm posting again, because I want to be sure everyone reads this.

Everyone: Please read!! And please join me in thanking Markku and Steve for all the wonderful things they are doing toward tinnitus research and support.

 

Wow, I wrote the post during a sleepless night, and am really humbled by the response.

Oh Karen, come January you'll have been here for 5 years, serving the community with your infinite passion for helping fellow members. You are a rare human being, always looking out for the others. Tinnitus Talk wouldn't be what it is without you — I'm confident everyone agrees. It's a privilege to be be surrounded by you. Thank you.

Do you know what was the etiology of her ulcers? Possibly venous or arterial based? I've read that chronic leg ulcers are most often venous based, second-most often arterial and third-most a mixed etiology of those two.

Did her ulcers eventually heal?

"High myopia is defined as refractive error of at least -6.00D or an axial length of 26.5mm or more. Pathologic or degenerative myopia is defined as “high myopia with any posterior myopia-specific pathology from axial elongation."​

(Source)​

So "severe" might have been the wrong choice of term by me, yours seem to be classified "high myopia" in your other eye. In my case, I have "high myopia" (my right eye being worse, -11 with -3 or so of astigmatism, but left eye is close to that, and my myopia has continued worsening even now when I'm past 30) in both eyes combined with the degenerative/pathologic part.

For those who didn't know, @valeri was the mastermind behind the Guide to Clubbing!

Plus she's been very active and helpful on a long-term basis with our Team Awareness efforts.

It's been a pleasure to work with you, and I hope others join in (anyone please feel free to PM me and Steve if you have a fire to work toward trying to make a difference, not just talk about the less than favorable situation).

Unfortunately, with tinnitus, it is sometimes understandable people aren't capable of investing time or energy into the cause, when the noise can drain us so completely, or if one just happens to have too many other commitments. However, even in those cases, you can show your support by, for example, liking us on Facebook, and liking & sharing the content we post there.

Thanks Patrick. It is difficult to have both auditory and visual problems, isn't it By the way, everyone: @PatrickG is someone who has helped us on several fronts with his professional experience — for that!

Hah, it did cross my mind to have "hit the jackpot", the wrong, reverse kind though. Had I won the actual lottery, I'd be financing full-time staff here (our to-do list is mile long and it's an amazing thought what we could do with people being able to dedicate their time on a full-time basis), and try putting tinnitus onto the map via various ways, not to mention kickstarting some research projects (depending on the amount won of course). It would be a great experiment for sure. OK, back to reality now...

Thanks for the kind words, and for your support too. It indeed is incredible how people from all corners of the world and all walks of life have come together.

Thanks Hopeful1. There is actually another, albeit a smaller one, legal threat going on as we speak, as we were approached by a lawyer who represents the person behind a certain infamous eBook... But more on that later as the issue progresses / concludes.

Certainly it's not a walk in the park to deal with everything!

Thank you Lorac. Means a lot.

You too seal. Thank you. You've been around a long time and you've definitely become part of the "Tinnitus Talk family".

Thanks so much, and I wish the same for you (I seem to remember from your posts you don't have it exactly easy either...)

Yes indeed. Thanks Quack! I know your situation pretty well and sincerely commiserate. Sending strength your way too.

Last but not least: thanks Irene, reading a comment like this really does help and motivate to push forward! Best to you, too.


Wishing each and every one of you reading this line a wonderful weekend.