Wie diese Geschichte begann...

Wie diese Geschichte begann...

Posts mit dem Label fear werden angezeigt. Alle Posts anzeigen
Posts mit dem Label fear werden angezeigt. Alle Posts anzeigen

9 Monate - no, I‘m not pregnant...

It’s been 9 months (yesterday actually) and I feel fine. It’s funny how time seems to fly, depending on how you look at it. Due to the pandemic there’s also the feeling of being stuck in time.... But I still remember vividly, even though I had actually had very few worries about the procedure in general, how scary and weird my thoughts got in the hour before it started. One of these was, I might lose my ability to talk or sing or speak English 😅 And only after these thoughts I considered the possible loss of movement... Crazy, where my focus was, but luckily I found myself being able to do everything just fine only hours later and back in my hospital room that same evening (instead of the ICU). 

Es ist 9 Monate her (gestern eigentlich) und ich fühle mich prima. Ist doch komisch, daß die Zeit zu fliegen scheint, je nachdem wie man es betrachtet. Wegen der anhaltenden Corona-Lage fühlt man sich auch manchmal, als stecke man in einer Zeitschleife... Aber ich erinnere mich ziemlich lebhaft daran, obwohl ich tatsächlich generell wenig Sorgen bzgl des Eingriffs hatte, wie beängstigend und schräg meine Gedanken etwa eine Stunde vor der OP waren. So dachte ich zum Beispiel, daß ich entweder die Fähigkeit zu reden, zu singen oder Englisch zu sprechen verlieren könnte 😅 Und erst danach, daß ich natürlich auch in meinen Bewegungen eingeschränkt sein oder gar gelähmt sein könnte...

Verrückt, wo mein Fokus also lag, aber glücklicherweise war ich schon wenige Stunden später in der Lage, alles zu können, worüber ich vorher nachgedacht hatte und mich auch am selben Abend schon wieder in meinem Krankenhauszimmer zu befinden anstatt, wie angekündigt, auf der Intensivstation.

Aufwärts... When two lines start to become one again

Before


  
and after 


15. September 2020 
Hier sind die versprochenen Bilder - ich habe jeweils zwei Vorher und Nachher ausgesucht, die zwar nicht ganz genau dem jeweiligen Ausschnitt entsprechen, aber dennoch kann man ja sehen: erst ist “was” zu sehen und dann eben nicht mehr 😊

Und dann gibt’s tatsächlich noch eine Nachricht, die mich fast ein bisschen an meinem Geisteszustand zweifeln lässt: seit letzter Woche Dienstag, also einen Tag vor der Kontrolluntersuchung, habe ich endlich eine deutliche Verbesserung meiner Doppelbilder-Symptomatik bemerkt. Man könnte also glauben, es gab eine regelrechte psychische Blockade in meinem Kopf, die sich pünktlich mit dem Termin aufzulösen begann. 

Auch die Augenärztin konnte zwei Tage später bestätigen, dass keine Diplopie (mehr?) für sie messbar sei, ich also offiziell auch wieder Autofahren dürfe, aber dennoch meinem eigenen Gefühl trauen und, solange ich noch leichte Schwierigkeiten beim
Blick nach rechts wahrnehme, mich noch nicht hinters Steuer setzen solle. Daran werde ich mich halten, stelle aber weitere Verbesserung jeden Tag fest und freue mich sehr!

September 15, 2020 
Here’s the promised images before and after - probably you’ll see that I didn’t choose the exact same frame levels but still there’s “something” there before and after it’s gone 😊

And there’s more news, that made me doubt my own state of mind a little: since last Tuesday, one day before my checkup I’m finally noticing improvement on my crossvision. Seems as though there was some kind of psychological block in my head, that started to vanish right on time of the examination date.

Anyway, the eye doctor also said that she doesn’t find any(more?) signs of the diplopia, so officially I’d be allowed to drive again, but I should trust my feelings of remaining discomfort looking to the right and not sit behind a steering wheel before it’s completely gone.
I really miss driving my little red car, but I’ll be good for a little longer now!!!

Sports and motivating myself - Steine im Weg

July 25, 2020

47days postOP and still a rocky road ahead.

Sounds a little more serious than my recovery story so far, but I have to be honest with myself: I'm still experiencing some problems that I didn't expect before agreeing to the whole procedure. Don't get me wrong, it was not really a question of surgery or not but at which point. And the doctors convinced me that surgery BEFORE developing any symptoms due to the tumor would be better than after, especially since nobody knows which symptoms could have come first.

But from not having symptoms to the current state of continuous double vision, neck pain caused by the poor posture I'm using to countervail my sight and a newly spiking blood pressure (between 90/65 to 140/100) makes me more uncomfortable than I like to admit.

So I got myself a few toys for home workouts - hoping to distract myself and do some good for my body. Now it's a question of motivating myself to keep going. I'm a bit lazy, I have to admit and even though I know that only I can help myself as a personal trainer, I'm also happy that I still see physiotherapists once or twice a week for some physical training, massages and lymphatic drainage. And so far, so good, I can manage to do my own workouts for twenty minutes every other day at home!

25. Juli 2020
Nach 47 Tagen post-OP habe ich trotzdem noch einen steinigen Weg vor mir.

Das mag ernster klingen als ich bisher von meinen Fortschritten berichtet habe, aber leider muss ich auch ehrlich mit mir selbst sein und eingestehen, dass ich wirklich noch nicht so fit bin, wie ich’s gerne hätte und vorallem wie es sich zunächst anfühlte.

Immerhin hatte ich ja VOR dem Eingriff keine Symptome und auch wenn es keine echte Frage war, ob ich mich operieren lasse, sondern vielmehr wann und die Ärzte mich sehr gut überzeugen konnten, dass es besser ist, dies eben ohne Symptome zu tun, da man auch nicht absehen kann, welche sonst zuerst auftauchen und wie ausgeprägt sie dann ggf. sofort sind (zur Erinnerung: der Tumor saß zwischen Carotis, also Schlagader und Sehnerv...), ist es natürlich jetzt ein sehr unbefriedigendes Gefühl, gegen die bestehenden Doppelbilder, Nackenprobleme, bedingt durch eine blöde Ausgleichshaltung wegen der Augen und einem momentan ziemlich durcheinandergeratenen Blutdruck (mit Werten zwischen 90/60 und 140/100 - keine Messfehler!!!) zu kämpfen 😣 - also lauter Symptome, die ich vorher NICHT hatte.

Geduld gehört nicht zu meinen Stärken, was mir vorher übrigens auch nicht bewusst war 🤯

Also habe ich mir zur Ablenkung jetzt „Spielzeug“ bestellt, um an andere Dinge zu denken und etwas für meinen Körper zu tun.
Hilft ja nicht, zu jammern!

P.S.: Da ich ja auch bei Instagram meine kleine "Recovery-Story" teile, habe ich dort auch per PN viel Zuspruch von "Leidensgenoss*innen" bekommen, die u.a. dieselben Nachwirkungen aber auch andere haben oder hatten und stelle fest: a) ich bin wirklich noch viel zu früh dran mit Beschweren und b) alles wird gut (auf die eine oder andere Art) 
 – hier: Neuss.

It's getting (more) serious...

November 2019 - January 2020

By November 2019 I already had my fourth control MRI and now there was a bit of growth visible - still gummy bear size though... But being much better informed and calm enough about it, I was ready to see a Neurosurgeon and get new advice.

In Germany there's a lot of advantages in our health care system, one of which I see in the amount of information you can get about the possibilities for treatment of certain diagnoses by comparison through not only patient to patient but insurance companies and their experiences and statistics on the number of surgeries performed. I had already decided for myself to see at least two different neurosurgeons to be able to compare and give my gut feeling a choice. Another big advantage of German health care: even without private insurance you don't necessarily have to pay extra if you want to consult different doctors on the same subject!

So I made an appointment at the university clinic in Düsseldorf first and then also went to see a neurosurgeon at the Helios clinic in Krefeld. I did not choose a particular doctor at either clinic as there are various neurosurgeons in both but simply asked for an appointment for neurosurgery on a meningioma.

In December 2019 I met Dr. Cornelius, a vascular neurosurgeon and also the deputy chief of neurosurgery at the university clinic in Düsseldorf. He was very patient with my concerns and questions, answering a lot of them before I had even asked and explained the location of my tumor in detail - I will get to this again later on... When I told him that I was going to get a second opinion in Krefeld before deciding on anything, he was very understanding and said, he would most probably do the very same and ask for more opinions when facing this sort of surgery. And, to my surprise, he even asked me to keep him informed on what else I may be told in Krefeld even if I decide to continue treatment there, so they could learn from other approaches for future patients - since I mentioned my gut feeling earlier on, I have to admit I was already pretty convinced at this point!

Still, in January 2020 (it had taken a bit longer to get an appointment there) I drove to Krefeld and although I can't remember the name of the neurosurgeon there, I also got really good advice, explanations and details on possible treatments and since I had a few more questions due to everything I had already learned in Düsseldorf I also got answers to those and yet again this doctor also thought nothing bad about me mentioning this consultation was already my second so that I could compare. As a result I was actually convinced by both hospitals and had to reconsider all details again in order to make a choice about how to go on.

Both doctors had agreed on advising me towards surgery rather before any symptoms appear and were also both sure, that the images seemed to show that the tumor was about to start ossifying (or calcifying) which makes it more difficult to remove and so a surgery should be done fairly soon. In Düsseldorf the date was suggested "within two or three months" whereas Krefeld advised for surgery "in half a year".

The crucial factor for my decision was the location of my tumor between the left optical nerve and a part of the main artery, the arteria cerebri media, and even without much medical background knowledge you can imagine how it could affect you - either problems / loss of your sight or a stroke and nobody's able to tell you for sure how long it may take til you get there. So I chose surgery. And based on my gut and the fact that Dr. Cornelius had already promised to do my surgery himself and the proximity of Düsseldorf to my hometown with the better promise of hospital visitors, I decided to have my operation in the university clinic.

Little did we know or expect the corona virus...🦠  And an appointment for surgery was made for beginning of June 2020.

Me in December 2019

Langsames "Kennenlernen" des Meningeoms - slowly getting to know the meningioma


Juli 2017 - November 2017


Mein Hausarzt war dann übrigens wenige Tage später derjenige, der das viel besser hinbekam und mich total beruhigte, in dem er mir von einer anderen, wesentlich jüngeren Patientin mit einem Meningeom mit der Größe eines Tischtennisballs berichtete, das bei dieser ebenfalls per Zufallsbefund aufgetaucht war, also auch keine Symptome verursacht hatte und ohne anschließende Einschränkungen entfernt worden war. Außerdem meinte er, zum Besuch eines Neurochirurgen würde er erstmal nicht raten, ein Neurologe könnte ja erstmal sehen, ob es Grund zur Sorge gebe und ich vielleicht doch Symptome hätte, die einen Eingriff von Nöten machten.


Also ging ich zum Neurologen, der ein paar Tests und Untersuchungen mit mir machte, die alle gut bis perfekt abliefen und auf nichts hinwiesen, was man mit dem Meningeom in Verbindung bringen könnte. Auch er riet vom Besuch des Chirurgen ab und erklärte mir, daß diese Art von Tumor in der Regel sehr langsam wächst, so daß man zum Beispiel zum Zeitpunkt des Entdeckens auch gar nicht sagen kann, wie lang es schon dort sitzt bzw. ab wann es sich entwickelt hat und nun erstmal abwarten könne, was ein Kontrolltermin in einem halben Jahr zeigen werde. Bei einer Vergrößerung müsse man dann ggf. neu bewerten und wenn sich keine Veränderung zeigt, reiche eine jährliche Kontrolle aus. 


Klar war für mich ab diesem Zeitpunkt aber auch, daß eine Vergrößerung, also ein Wachstum natürlich auch mehr Raumforderung bedeutet, was gerade innerhalb des Schädelknochens schwieriger ist als in den Weichteilbereichen anderer Stellen des Körpers. Und außerdem muß man sich natürlich überlegen, welche Symptome bei mehr Raumforderung und dadurch entstehenden Druck auf das Gehirn auftauchen könnten, was wiederum von der Lage des Tumors abhängt. 


Der Begriff "Gehirntumor" ist übrigens auch verwirrend, denn technisch betrachtet, ist es ja kein Tumor des Gehirns selbst, sondern der Hirnhäute und wächst somit mehr oder weniger außerhalb des Gehirns.

Beim nächsten MRT wurde nun zwar etwas genauer hingesehen als beim ersten, da ja jetzt die zu beobachtende Stelle klar war und auch mit Kontrastmittel die umliegenden Gefäße genauer angesehen wurden, aber im Vergleich zur ersten Aufnahme hatte sich nichts verändert.


Da ich mit den Größenangaben des Tumors für mich selbst ein Vorstellungsproblem hatte, habe ich überlegt, welchen Lebensmitteln es vielleicht entsprechen könnte. Die Kidneybohne gefiel mir nicht, aber beim Gummibärchen blieb ich hängen 🧸

My brain looks like a sad dog, doesn't it?
Mein Hirn sieht aus wie ein trauriger Hund, oder? My brain looks like a sad dog, doesn't it?
(das Meningeom ist hier nicht zu sehen / the meningioma is not visible here)


🌍🌎🌏 And here's the English version (translation) for you:


My own doctor, a general practitioner managed it way better to calmly inform me about how to proceed a few days after the first news. He told me about another patient he had, who was much younger than me and had a meningioma sized like a table tennis ball, that was also found  by surprise, had also caused no symptoms yet and was removed without any trouble. He also said he would not recommend a neurosurgeon yet, but send me to a neurologist who could check whether there are really no other symptoms to make surgery reasonable.


So I went to see the neurologist who took a few tests and checked me thoroughly, everything was in order and seemed perfectly fine without any signs of malfunction due to the meningioma. He also said, that for the time being he saw no necessity to consult a surgeon, because normally meningioma grow fairly slowly, so it's actually not possible to know since when it's already been growing in your head when you first notice it and it's okay to wait until the first control MRI half a year later. And in case there's growth visible you can reevaluate the situation or if there's no change, a yearly control is sufficient.


It was clear to me though that growth of the mass within the cranium is more difficult to handle than in other, softer parts of the body. It's also not easy to tell, which symptoms may occur when the meningioma starts to pressurize the brain because that depends on the location of the tumor.


By the way, the term "brain tumor" is confusing, cause technically it's not a tumor of the brain itself but the surrounding tissue, so it actually grows more or less outside the brain.


With the following MRI it was checked a little more thoroughly because now they knew where to look and I was also given a contrast agent in order to show the surrounding vessels and the blood flow, but nothing much had changed compared to the first images.


Since I couldn't really relate to the size of my meningioma I tried to compare it to food - a kidney bean didn't sound right to me, but a gummy bear became my favorite choice for a description 🧸

How this meningioma story started...

November 2016 - July 2017

"A meningioma is a tumor that arises from the meninges — the membranes that surround your brain and spinal cord. Although not technically a brain tumor, it is included in this category because it may compress or squeeze the adjacent brain, nerves and vessels. Meningioma is the most common type of tumor that forms in the head." Mayo Clinic - Meningioma: Symptoms & Causes

Had the radiologist back when informing me about the result of my first MRI used these words, maybe I wouldn't have left the doctor's office shattered in tears and having to calm myself for rest of the day.

But let's go back a little further, shall we...
Back in November 2016 I suddenly suffered from acute hearing loss without any vertigo, fainting or a blast trauma, it simply appeared as a feeling of listening through a can and hearing less on my left ear. At my ear, nose and throat specialist I found out it was only two diminished bass frequencies and no fluid in my ear. Of course I had to call in sick for work for a few days and I was prescribed cortisone. So I stayed home and tried to relax, cause the doctor also assumed stress a a cause and after a while everything went back to normal, as fast as it had appeared it was gone again.

Unfortunately after only a few weeks I felt the same sensation, the same symptoms and like the first time they vanished after a few days - and like the first time, I didn't really have the feeling of being stressed out before.

In July 2017 I had already had 4 of these hearing losses, luckily there were no restrictions left as soon as they were gone again and by the third time I had already quit on taking medicine because it didn't seem to make a difference - I got better after a few days whether with medicine and staying home or without. With the help of my regular doctor, my dentist and the ear, nose and throat doctor I started getting physiotherapy for CMD (craniotomy-mandibular dysfunction) and massages, because I "bite and grind" during my sleep and should be using a bite splint that too often stayed in its case instead of putting it in and we figured there might be a correlation between my jaw and my hearing problems. And the ear, nose and throat specialist also ordered a MRI at a radiology practice in order to make sure there was no problem with my brain, especially in the area of the cerebellopontine angle.

Normally I try to prepare myself for these kinds of appointments so I have an idea of what might be found and had I done that, I'd probably have heard or read of an acoustic neuroma - which is also a tumor and could have been responsible for the hearing losses. But since I didn't even the word "TUMOR" was not in my head (no pun intended...) when doing the MRI.
So right after I was called into the office of the radiologist to be told about the results and what she said was: "Concerning the hearing losses we were not able to find a cause, but you have a meningioma, a tumor of the brain membrane, and I'd suggest you consult a neurosurgeon next."

Bam...!

That's it...!

Good-bye...!

Unfortunately I was so perplexed that I left the practice with a cd of the MRI without asking any further questions. As a trained physiotherapist (yes, I am, but it's been a long time since and I didn't really work as such for long) I have enough medical background to know that "tumor" does not mean cancer and malign right away but only swelling and enhancing mass, but right there for me, as for most other people I know, the word was linked with unnecessary horror. I also notice the same reaction when I tell my story to others, that's why I never fail to add benign and non-cancerous based on my own experience.
Anyway tears ran down my face after just a few meters from the office's door and it took a while to calm down enough to be able to think about everything I had just learned and to call my parents without sobbing. The mention of the neurosurgeon had added its part to my nervousness.
Dear radiologists, please let me tell you, don't do it like that. There's other ways to deliver news like that and even though you may need a certain empathy, it's not a question of more time - the choice of your words is what counts!
Ihr wollt dies lieber auf Deutsch lesen? Bitte, hier: https://meningeomundgummibaerchen.blogspot.com/2020/08/wie-diese-geschichte-begann.html