The second implant is now in place, and all went well. Today is 2 days after operation and I’m a little dizzy and not feeling great. Almost like a little hangover. I didn’t sleep much the first night, and avoided sleeping during the first day. I slept through last night, 9 hours.
Priority now is to just take it easy.
This second operation was performed by chief surgeon Dr. Med. Marie Bunne at Rikshospitalet. I was operated on in the “intervention” operating room. In this room they have a sophisticated kind of X-ray equipment which allows the surgeons to view the actual insertion of the electrodes on a live camera X-ray. So the whole idea was to give me special treatment during this surgery, given the fact that I had some bad trauma after the first implant. I struggled with balance for three months, and suffered severe/extreme tinnitus after the first implant.
Dr. Med. Marie Bunne specializes in gentle surgery (article at HLF about Dr. Bunne), and let me tell you: I can feel the difference!
After the first surgery in 2009, I could barely walk, balance was thrown, the muscle that I chew with was sore and aching for weeks. My head felt like a balloon. After THIS surgery, sure I am in pain, but I think I will, on day three, not need more painkillers. I have no notion of swollenness (barely visible below my ear), no sore muscles. All I can say regarding effects from surgery on day three is a slight metallic aftertaste in mouth, and some dizziness, which I suspect is due to pressure from fluids building up in my inner ear. Allthough I’m dizzy, my balance is fine. Slight feeling of vertigo.
They have taken imagery of my first implant in my right ear, which is due for analysis in a few months (tonnes of material, one guy to analyze… budget situation or something ) Will be interesting to hear what they find on those images, if the electrodes are badly postioned or what…
The currently used electrodes from Advanced Bionics are slightly thicker than the elctrodes from Med-El or Cochlear. Advanced Bionics are currently woking on getting approval of those new electrodes from US FDA. I found out I did not have the time to wait for those…
I’m now, FINALLY, bilateral. Can’t wait for activation and actually start to use both ears again
You people must become fed up with all these “Status update”-posts, no?
After this rather long and 5-way split Status update, I realized there are some other health issues that needed addressing.
It also serves as a reminder to myself that the purpose of this blog is mainly to be like a medical journal (for myself and others who might need the info).
It is still sounding the same as it did when I started being bothered by it, with a rather constant “UUYYUUUUYYYUUUUYYYUUUUUYYYUUUYYYUU….” around 1 to 1,5 KHz. It’s worst on the right ear, and it varies in intensity (or strength/volume) according to how tired I am. I don’t know if that means that the tinnitus is worse because it’s actually louder or if it’s because my tiredness makes my brain more susceptible. It is a matter of perception I think…
General health, back to regular training
I have started training again, after a whole year without any training regime whatsoever. The body seems to respond well to the exercise as opposed to one year ago when any exercise gave me pain and aches in both bones and muscles. My goal is that my little overweight shall become less during this winter instead of becoming more as it usually does during the dark season.
The chronic pain in my knees is fading. This is a little miracle for me, because it was troublesome to just take the stairs at times. I thought the chronic pains was a one-way ticket into some sketchy knee-surgery-history. I’m glad I was wrong 🙂
I have become conscious about the fact that I can not and should not run anymore in order to save the knees from more wear. So my focus has been switched to alternatives like kayaking, biking and swimming. And that is all right by me.
I have a theory that the level of stress in me the latter years made my immune system turn on my own body as a warning mechanism (the signal being: slow down!). I don’t know if this makes any sense, but what if the immune system reacted so strong to the state I was in that it actually attacked parts of me it was not supposed to attack? I know, it’s a wild theory, so if anyone has any views on this I would appreciate any comment. I googled on the term “autoimmunity”, but those articles where mainly oriented toward causes for arthritis and diabetes. I didn’t go deep though…
Up to a few weeks ago my whole body felt good and I was without any chronic pains for the first time I can remember in my adult life. Back pains are gone, and the last remaining symptoms with muscle pains in my thighs has disappeared.
Headaches, the severe light sensitivity (photophobia) and some other smaller symptoms related to vestibular disturbances also diminished this last year. Even my worn knees are improving painwise, ie. they don’t pain me as much as they used to. I can almost run and almost walk the stairs without pain. All in all, this summer was a great physical experience. This last year I have taking a break from any physical training, because my body told me in the fall of 2007 that it couldn’t take anymore. Even swimming gave me muscle and skeleton pains. Clear signals that I could not ignore.
This summer, part of my vacation was in Poland with good friends and together with my son. We went on a one week trip to an area with great biking trails. And we went on long bike trips every day. This time my body responded well, and I have now started training again. Swimming 1-2 times a week, and some bike trips in between. I look forward to loose a few kilos this winter, instead of gaining them. My knees, who are still protesting in stairs, will thank me for that.
I stated earlier here that I have regressed a little, and this reflects and manifests itself in my body physically. My neck has become stiff again, and my shoulders are constantly aching and uncomfortable.
I keep waving my arms and tilting my head in all directions in order to keep it “loose”. I suspect that these symptoms come from stress are related to the breakup with my girlfriend. She means a lot to me, but the long distance relationship we’ve had since the beginning took it’s toll on our love. She couldn’t bear it anymore. I don’t blame her and I’m not bitter. She made me feel much better a whole year in this very tough part of my life. I hope I made her life better too. I think so. Even though her breaking up with me is still a little mysterious to me. I wonder what would have happened if I had gotten that CI long ago??? Would I have become happier and have more humor and strength? The future will tell what happens to me after the CI-operation.
The tinnitus is a relentless as ever. Recently I discovered a way to explain how it sounds. I came to think of the TV test signals with the one-frequency audio sound. That is on about 1000 Hz and is almost the same frequency as my tinnitus. In other words; I have a constant TV-test audio signal blaring in my ears. I have a suspicion that the tinnitus has changed a little in the frequency the last months. The sound is a little higher up on the frequency-scale than I imagine it was 1 year ago… Tinnitus is the sound of my hair cells screaming goodbye forever. May they be revived upon the insertion of the CI-electrode arrays…
In order to distract myself from the tinnitus I either has to turn my hearing aids on and endure the “recruitment” and hyperacusia and wear myself out quickly, or engage my brain with tasks like reading, sudoku, various forms of art (I like wood carving, metal work, drawing, writing, photography and the processing of photographs in Adobe Photoshop and alike. Furthermore I like to get my hands dirty working on
alpine and rock plants on my balcony, plants in my living room, various tasks on our small farm in Sweden. Also I enjoy the diversities of the computer world wether it’s playing a strategy game like Command and Conquer, driving rally cars in Colin McRae Dirt, being a hyper modern deadly soldier in Crysis, or simply surfing the Internet, staying in touch with friends and family via email and IM. The computer is a big part of my life, especially since it was and will be part of my professional life and career. Oh, and “house chores” are also a nice distraction from tinnitus 🙂
OK, got a little sidetracked, but what I meant to say is this: I have to constantly distract myself with mental activity in order to keep the tinnitus away from the “alert”-consciousness. That in itself is depraving me of the opportunity to really relax and to build up some sort of surplus of mental strength. The results of this never ending battle with “recruitment”, hyperacusia and tinnitus is first of all extreme mental fatigue. It doesn’t take much to wear me down these days.
Consequences of this condition is that it takes more effort to concentrate. The endurance of concentration is shortcoming. Even concentrating on a dialogue is a challenge. To keep my own thoughts in order at the same time I have to concentrate on comprehending the things being said to me is a challenge. At the same time, my short term memory is failing me, probably from the exhaustion of all the other tasks that my brain is occupied with, thus giving me another task I need to concentrate harder on.
The extreme fatigue I often experience puts limits to the extent of how much I can pursue my interests. It feels very limiting and prison-like. But I focus on the positive and whatever gives me joy. Having said that, I know that pondering a lot about the condition I am in isn’t necessarily a good thing. However I am such a person that almost never take the easiest way. I tend to analyze and scrutinize the hell out of anything, and then meet it with countermeasures that are carefully considered and self debated. It is a way of dealing with things that goes well for me…
The physical condition is linked to my psychological condition. The stress fatigue is sometimes limiting my capability of getting myself into physical action. At the same time, I have experienced that last year most of my muscle and skeleton-related symptoms (mostly pains and discomfort) has subsided. I have a theory that my body was in a state of stress just as my mentality was (still is) in a state of stress. My body just didn’t respond well to physical exercises. So last winters absence of extreme training has done me well in terms of reducing pains and discomfort in my back and neck especially, and subsequentially in my legs and shoulders (which was the reason I had to stop swimming regularly, last fall). My focus now goes to light physical activity and just having fun while doing it. Pleasure-driven and not self-forcing hard exercise seem to do the trick for me now. I focus a little more on my diet since I no longer burn so many calories.
I just sat very comfortably in my favorite chair in front of my computer for two hours, doing some work that requires concentration. I had no sounds to distract me, since I turned my hearing aids off for the work-session.
I can’t stand the sound of the fans, even though I have water-cooled most of my rig, the hard-drives give off too much heat for the whole thing to be able to run without fans… I think the sound can’t be much more than 17 – 20 dB (according to fan specifications), and that’s a faint sound, really. But my hearing aids are the most powerful there is (to my knowledge) and they’re cranked to the max. (Widex Senso Diva). So I turn them off more and more these days…
The recruitment is killing me if I don’t turn them off.
The tinnitus is there as always, but not really bothering me concentration-vise. It’s sort of comforting, since the sound now has a rather steady tone. (before it was a chaos of frequencies and variations in strength/volume)
Anyway, I sit, my head is not moving, my eyes are only fixated on the screen, and my concentration goes to the task at hand. The first hour goes fine, no problems.
The second hour I start to get physical sensations in my head. It is like pressure building slowly up.
I had a good night and I’m not tired. I have no stress to complete the work I do, and have no deadlines for anything. It’s Sunday 🙂
Then suddenly I get these auditory sensations, it’s like a silent storm. I can feel it somehow. Not like pain, it is not unpleasant, it’s just a sensation of very weak electric current in my brain. Like a blanket of electricity sliding back and forth like the radar screen image. It’s like a soft “wooosh” inside my brain…
The sensation that I have are connected to my ears, and at the same time they affect all of my brain (at least it feels like it does). I have no control of this sensation.
I wrote about this sensation before, connected to a pre-sleep phenomenon. This is very much the same, only now I get it during daytime too…
Seconds after this “wooosh”-sensation I feel dizzy (I guess there’s some kind of activity affecting my Vestibule where the balance-nerves are situated). It’s a weak vertigo, even though I sit still, are at peace with no stress. And I know I don’t have Meniére, thank goodness…
After this my ability to concentrate is worse. It’s difficult to keep a thought for as long as I like. My mind has always been a multitasking one; while doing one thing, my mind has been working out what the next thing I should/want to do… This is impossible in the state I’m in after only two hours of working effortlessly… It’s frustrating for me, because if I’m doing something that gives me a thought that I want to pursue, the short-term memory isn’t working as I’m used to. So when I complete the task I worked on, I KNOW that there was something I thought of doing, like searching for a special kind of information, or look up a certain fact etc. etc. But it’s gone… Sometimes I sit for 10 minutes of more, pondering what it was that ignited that thought, trying to reconstruct the idea for myself… Sometimes I get it, most often I just move on… I can’t let it get to me.
In short it makes me feel like I’m cognitively amputated… The SUDOKU-thing helped me understand this better…
And by writing this now, and concentrating on the subject and all the aspects of writing, I feel I’m pushing myself… I’m starting to get a headache now… This is the part I do not understand at all…
I haven’t heard a sound all morning (it’s now 12.30, I started working at 9.30). I know my hearing is disappearing, and the tinnitus is singing it’s tune. But why is it a strain for me to do something that doesn’t affect my hearing? Why do I get this dizzy feel, why the headache, why the memory-problems, why the multitasking problem, why the feeling of fatigue? Can it be that the optical-nerve also lies close the the nerves of the auditory nerve and the balance-nerve? It is all connected somehow…
My jaws feel like they had a punch (they’re sore, like I chewed gum for a few hours). My temples hurt a little bit. The dizzy feeling is there (but I’m not having trouble with the balance, though).
This state/condition will last all day, until late at night, then I feel better again, but the paradox then is that I need to sleep. I might me tired, but want to stay up because the world feel somewhat more vivid to me. Is it connected to me originally being a B-person? I’m not extreme, have no troubles getting up in the morning whenever… (but used to)
I came across an interesting website for an organization called VEDA (VEstibular Disorder Association). I found this list of possible symptoms that is very interesting.
Image copied from “vestibular system.” Online Art. Encyclopædia Britannica Online. 23 Jan. 2008
Here is an explanation of the Vestibular system.
I did not initially place all these symptoms into the same category (i.e. having to do with my hearing), but maybe I should have??? I exctracted the whole list and will excempt (a strikethrough line) those not experienced by me. If commented, the comment has been marked like this.
This list was a revelation to me… It all fits, kind of… Seems it connects to the wiring of the vestibulo-cochlear nerve: the nerve that carries information from the inner ear to the brain. Also called the eighth cranial nerve, auditory nerve, or acoustic nerve. If the “recruitment”-theory in my previous article holds water, the information about these symptoms could also have some bearing on the subject of my condition.