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Geschrieben von Richard Byrnes am .

CI experiences

Dear Friends,
I hope you will allow this rather long post in which I have attempted to relate my own experiences here in the UK, in the hope that it may be of value to all future CI patients. I have tried to cover all the typical topics that one reads in this forum. My thanks again to all of you who responded to my own enquiries in the early days.

Background:
I am 67 yrs old, with a history of progressive hearing loss. My right ear had a mastoidectomy 25 yrs ago and has been severely deaf for over 5 yrs. My left ear was clinically OK though with a degree of High Frequency loss in recent years. On 6 Nov 2000, I woke up deaf in both. After MRI scans, X rays and 8 blood tests, my consultant said it was caused by a virus. I had suffered Sudden Sensorineural Hearing Loss (SSNHL). I embarked on the CI route only to be declared " too good" (see Finance below) and after a series of hearing aids in my left ear, adjusted to a digital one with very low grade results. I only managed at all because of lip reading, which unknown to me , I had been doing for some years. I was then given lip reading training within my hearing therapy treatment. On 28 Aug 2001, I suffered another "attack" and became profoundly deaf in both ears. Repeat of previous tests with same result. I again started up the CI road, was assessed, successfully, in Spring of this year, operated on 17 Oct and switched on (hook up) on 21 Nov.

CI Choice:
Having begun some basis research and identified the 3 prime manufactures of CI's, I got all their literature and compared it. I joined several "deaf" organisations and attended seminars on CI & related issues. I joined this forum and looked up all Alex's contact sources . Though initially drawn to the Nucleus system, I progressively focussed on Clarion. I made contact with their UK office and was fortunate to be given a complete expose by their senior clinical technician/audiologist on the C2 BTE. I was allowed to choose Clarion by my CI center (see Finance) and everything was set when the meningitis crisis broke in late summer. The Hi Focus electrode with positioner was not withdrawn on the UK market because the original approval had not been based on the positioner alone. I engaged in more research and accepted leading UK medical recommendations that a C2 implant without the positioner would not be a retrograde step. The underlying decision for Clarion throughout was based on their very high investment in R & D activity and that their system was capable of continual upgrade as C2 technology moved forward. (see below)

C2BTE system:
I urged the UK office to get me the new HiRes programme strategy with the T mic from the onset and was very lucky to be one of the first UK patients to have it them both just after their release in the UK. The HiRes is not an "add-on" to the previous standard of C2 CIS/SAS/MPS. To quote Clarion, "HiRes is made up of pulses (like CIS, but presented at a much faster rate). Due to the fast update rate, HiRes is able to preserve the fine temporal structure of the sound waveform. The very fast rates also produce stochastic firing of the hearing nerve, which is the natural firing pattern of the auditory nerve." The edition just on release in the UK is not a fully developed version. The full edition, which is entering user trials here in the UK , will be called SoundWave and will have the extended low frequencies, sensitivity settings,multi variable T Mic/Ear Mic settings, more audiologist parameter settings et al ! I can't wait but am so reassured that my BTE will be upgraded again in the new future.

Finance:
Here in the UK, medical care is free at the point of delivery by the taxpaid NHS. But the scale of CI activity is relatively low compared with the rest of the world. For a population of circa 60 million , there are 21 CI centers, which have performed perhaps 4000 operations to date. Policy on this expensive treatment (circa $30000 - $50000 - in total for assessment, operation, implant, audiology tuning , hearing therapy and after care) varies geographically. Each potential patient's funding has to be secured by their CI center on an individual basis. The criteria for potential funding is very strict and exacting.Some areas do not fund CI's at all, some only fund children's applications whereas the rest , whilst potentially funding all their applicants, have to ration their budget and there is a long queue. It took me 10 months from first being seen to my operation ; 18 months to 2 yrs is not uncommon. However, I have been fortunate to get the very best of attention, therapy, medical skills and audiology support. The NHS is often maligned but in specialist areas it excels.

Operation:
Two months prior to the op , the surgeon arranged for me to have a anti meningitis injection of Pneumovax II, a 23 strain pneumococcal polysaccharide. No side effects. The operation was very straigh forward. I had no apprehension, having been operated on 3 times in the history of my right ear. I spent one night in hospital "settling down" , was operated on at 9am, woke up circa 5pm,spent a restless night and then went home the next morning. I had no nausea beyond a brief spell in the night, was up & walking about and getting dressed etc within 24 hrs. I was a bit listless for perhaps 3 days by which time I wanted to start exercising and getting on with things.In fact I travelled to Spain for a holiday within 2 weeks of the op. It was 3 weeks before they allowed me to wash my hair by which time the wound soreness had abated. After 10 days the stitches were removed and for a further week I had antibiotics ( beyond those issued to me as I left the hospital) for a very mild skin infection.

Side Effects:
Immediate ones were a twitching of my left eyebrow for 3 days, a metallic cum soapy taste which lasted about 2 months and, unfortunately,a sharp increase in tinnitus on my left side( typically, one's tinnitus is reduced). This has slowly diminished though never to its pre op levels ; plus of course, I have adjusted to it over the months.

Results:
It works !!! The T & M settings are experienced by a full stream of intermittent bleeps so it is easy to respond and help get the levels right each time. I have had 5 tuning sessions in my first 4 weeks and every visit is a continuous improvement. To begin with, everything sounded very thin and tinny. But re mapping has begun to fill out the sounds and they are becoming more natural (as I remember them that is). From the outset I could hear the Audie and walked through the hearing therapy session on closed set sentences. By 2 weeks I was on open set recognition and had tried the phone with known people. At week 4 stage ,I can converse naturally indoors, have begun listening to the radio (early days , spoken words only, music is still a jumbled noise) and have a complete set of environmental sound recognition. I have begun watching TV news etc (where people face forward) without the sub titles (captions). I'm given training exercises every week to do at home. I have been using audio books with matching books( must be complete, unabridged and undramatised versions) which is both enjoyable and very helpful. Outside the house, things are still very difficult but better week by week. I've a long way to go but I feel confident that I'm going to get there. Battery life begun at 6 hrs for the Std size but has gone down to 4 1/2 hrs as the system has been "opened up" (my internal dynamic range has expanding week on week). I get 10 hrs on the Extended size battery. So one of each gets me through most of a waking day.

Conclusions:
I have been very lucky, in relative terms, in that I was retired (no need to earn a living) , have had excellent support, and a good result. Where strictly relevant, I cannot recommend having a CI too highly. For those who can manage a tolerable life with hearings aids, never forget that natural hearing, albeit diminished, is better than a CI and should not be lightly exchanged. But for the majority of us who begin from abase line of nothing, then a modern CI is truly a miracle and a blessing. Each & every one of us is different and none of our experiences will be replicated anywhere else. All 3 of the major CI systems are great. It is solely a personal choice for each of us to make (subject to medical direction because of one's condition perhaps) and for future patients , do not let others bully you into a choice. In this respect, I'm saddened at the " CI rage" that goes on in this forum. Let us all help each other with information, encouragement and support.

Recommendations:
To potential & future patients, do do do lots of research. Find out everything you can. Don't short cut this vital phase. Network all over the place. Use the Web ad lib. Ceaselessly question ( politely) your doctors, consultants and surgeons. If you don't get sensible answers, push for them and if they are not forthcoming, then move on. Quite simply, the more you know and understand, the better you will feel. Prepare yourself fully. Get all the domestic & communication aids/alerts/equipment sorted now. Don't wait for the future. Bring it closer to you now.

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Geschrieben von Lisa McFeely am .

Meningitis and CI from a religious point of view

Patrick McFeely's Story
 
Have any of you wondered if you really have a purpose in God's plan? I know I have. I'm here today to share with you how I came to know that I am important to God's plan.
 
I would say that in this day and age I had a pretty normal childhood. My mom was home cooking, sewing and cleaning everyday for her family while my dad went to work and school. Mom took my brother and I to church every Sunday where I established some very special friendships. These friendships helped me through my teenage years and remain in my heart forever. 
 
In my early teens I went forward at a Billy Graham crusade. At the time I acknowledged openly that I believed there was a God but I didn't think little ol' me had importance to him. I didn't realize then that God was molding me for his use.
 
My parents divorced soon after this and I felt somehow to blame. I now know that's not the case but, as a child you always wonder what you could've done differently.
 
When I was 17 my grandfather committed suicide. He was the only outside relative I really knew since my parents had moved away when I was a baby. We had shared so many memories together and I loved him with all my heart. Needless to say, I was devastated at his death. To me, he'd believed very strongly in God so I didn't understand how this could happen. I guess that is when I really doubted God's existence in my life.
 
After high school I attended the local community college where I met Mark. He was extremely funny and he made me feel good about myself inside and out. I knew immediately one day I would marry him. Two years after we started dating we were married in my home church where I had my fairytale wedding. Two years later I was pregnant with our first child and we were moving to Jacksonville. Christen was born in August of 1993 and our lives changed instantly. She was a beautiful child with blonde hair and big brown eyes just like her daddy. She grew very fast and brought us overwhelming happiness. When she was three years old our second child "Patrick" was born.
 
There was something about him that immediately caught your attention. He had a sparkle in his eyes and a smile that would stop people in their tracks. I believe he was an angel from the beginning. I worked full-time until Patrick was 7 months old. It was then that we came to the realization that our children needed me at home. For 4 months my life seemed too good to be true. Then we came to a screeching halt.
 
You see, When Patrick was 11 months old he got what we thought at the time was a stomach flu. We took him to the doctor and were sent home saying that he'd be ok. 
Within 12 hours he was in intensive care fighting for his life. It turned out that he had one of the worst strands of Bacterial Meningitis known to man. How he got we still aren't sure but, this is when our nightmare began. We were told that if we had put Patrick to bed that night he would have been dead by morning. He was in ICU for three weeks of which he was on breathing, feeding and IV tubes. During that time we made many complicated and emotional decisions. The first being whether to replace breathing tubes if they were removed and Patrick was not able to breathe on his own. We had a weekend to think about this decision. Needless to say, it was a very long weekend. We both decided immediately that we didn't want him living off of tubes and that Patrick would die if he couldn't breathe on his own. 
 
It was a true blessing that Mark and I were in agreement on all of our decisions. I can't imagine how hard it would have been had we not agreed about our feelings. 
 
During all of this I had what I believed to be signs from God. In the past when I've heard of situations where people received signs I thought they were either hallucinating or just plain crazy. But this time I was the crazy one. 
 
On Saturday evening that weekend one of Mark's friends came by to visit and he wanted to pray with us. We welcomed all prayers. So he started by putting his hands on Patrick's head. He prayed loud and strong sounding almost like a chant. I was a little uncomfortable, as I was not used to praying like that. Praying to me was quieter and much more subdued. But I soon forgot my discomfort as the nurse and I both noticed Patrick's heart rate immediately jumped from 130 to 215 and his eyelids fluttered rapidly. 
He had been comatosed for two weeks so needless to say we watched with amazement wondering what might happen next. As soon as the prayer ended Patrick's eyes quit fluttering and his heart rate returned to normal. This gentleman told us that Patrick's eyes would open that night and I thought he was crazy. But, sure enough the nurse told us that Patrick had opened one of his eyes briefly when we had stepped out that night.
 
The last and most significant sign was the Saturday night before his tubes were pulled. I had a dream I was sitting in the sand under a tree and I was talking to Jesus. I said, "If you are here you will hold my hand." He then reached up through the sand and was holding my hand. I blinked my eyes, and in that moment there he was sitting next to me. 
He said, "I am here with you and everything will be ok." When I woke up I felt very peaceful. I knew that God would take care of Patrick no matter what. I just assumed the dream meant that Patrick was going to die, he would not suffer and God would take care of him. Little did I know, Patrick had a big future ahead of him.
 
By this time most of the family was here and preparing to say their good-bye's as it was expected that Patrick would not live for an hour after the tubes were removed. We made funeral arrangements and even received a couple of sympathy cards.
 
Everyone in the family joined together in prayer in the waiting room and around his bed. 
They talked to Patrick fearing that the words they were saying would be the last he'd ever hear. On Monday the tubes were pulled and we were left holding him in a very dark and cold room. He continued to breathe and the doctors swore it was just a matter of time. We then had to make ethical decisions on feeding tubes and IV tube which we felt were extrordinary means of living. We agreed that if God wanted him to live then he would live without all the tubes. We were told that after two days without fluids Patrick's body would start to shut down.
 
At this point we decided it was best for Christen to say her good-bye's to him and prepare her for what was expected. Needless to say, she was devastated You'd be amazed at what a 4-year-old can understand.
I remember running out of tears and my body feeling numb from head to toe. I think that sometimes God makes you numb so that you can get through painful situations and make logical decisions. It is kind of like when your child gets hurt. You hold it together and handle the situation only to break down when it's all over. 
 
I began to question why Patrick was left on this earth in this condition. He was entirely brain damaged and we were told there was only enough of his brain still entact to keep him breathing and his heart beating. I understood as much as possible that God was going to take him to heaven. It was easier for me to believe he had a purpose that way but to leave him on this earth like this. What was the point? He couldn't eat on his own, hold his head up, smile, see, hear, or control the movement of his limbs. He was literally a vegetable. I remember telling him it was okay to let go and go to heaven to wait for us. 
 
I also remember looking out at the water remembering how peaceful it was. People walked by seeming so happy and yet my life was upside down. It is weird how the world still keeps going while you seem to be in slow motion. No one has any idea what could possibly be going on in someone else's world. People that we see on the streets everyday could be going through the worst situation of their entire lives and we just walk right past them. 
 
Remember, I said his body would start shutting down after two days without fluid? Well, five days after the tubes were removed Patrick started to swallow little amounts of fluid. 
While everyone else was extatic at this Mark and I did not share their enthusiasm. We were scared because this is the first time that reality set in. Patrick might just leave this hospital in this condition. How long could he live like this? What would become of us? Amazed at his endurance the doctors started making excuses for this miraculous event. 
As I recall, they used the word reflex quite a bit. I didn't realize at the time how much I'd hate that word before all this was over. They said there was still no hope for a bright future and sent him home on his first birthday. He was on Hospice care with the understanding he was going home to die. They had done all they could do. 
Less than a week after Patrick was home from the hospital his pediatrician suggested that we consider overdosing Patrick on Morphine. She said it would ease his pain and release him from this body to be in heaven where he'd be free to run and play again. 
We knew that it was wrong to do, but as a parent you don't always think ethically correct. 
We couldn't stand to see him in pain so we considered this option briefly. We decided together that if God wants Patrick to live like this there must be a reason and he'd have to be the one to take him. We could not in our conscience do this. So, Again, we put Patrick in God's hands. I learned at that time never to judge anyone's decisions in a situation I myself have not been in. Our decisions never went without thought but I now have the belief now that we were in the back seat all along and Patrick and God were in control. I just thought I was making these decisions.
Many people were so full of hope for a miracle. It seemed so easy for them to believe this since they were able to go home and not watch the pain Patrick was in. 
 
The only thing Patrick was able to do was winced in pain when we touched him. We had to give him morphine just to be able to move him.
 
Knowing that Patrick was going to die we planned to have another child to help with the grieving process. Patrick could never have been replaced but we wanted to fill a void. I became pregnant with our third child right away.
Patrick was fed from a syringe for approx. one month until he was able to swallow more at one time. The doctors still were not convinced that this was more than a reflex and he remained in a persistent vegetative state for a second month. Then, we noticed when Patrick was drinking he started lifting his left hand up to the cup consistently. Again, we approached the doctors. They decided to do a CAT scan to see what was going on. I'll never forget that appt. It was the change to this whole ordeal. The neurologist told me that day that there was a little boy in there somewhere. He did not know what Patrick would ever be able to do but he was there. In November Patrick had to have surgery. He was not draining spinal fluid off of his brain like a normal person does. So, he had to have a tube placed through his brain into the middle section. This tube ran from his brain down near his stomach inside his body. We began to notice significant changes after this. I remember saying my reward as a mommy was to see an occasional smiling face. What I'd given to see just one smile. Well, I got that first smile early in December and it seems he hasn't stopped smiling much since. He gradually got his vision back 100%. Yet, another miracle.
 
As the months passed Patrick continued to improve on a fast track. There were constant changes and doctors eventually realized this was a miracle. He appeared on the Children's Miracle Network telethon in June and the doctors have said the statistics of Patrick actually being here the way he is, are one in a million. There is no medical reason for Patrick to even be here.
 
In September Patrick had Cochlear Implant surgery in the hopes of providing hearing. Many people were skeptical about how much he'd hear or respond to. He now wears a hearing device and hears everything with it. In order for Patrick to get that device two FDA statutes had to be changed in his name. Now that these changes have been made a door has been opened for other children to receive this implant. Patrick continues to amaze everyone. In my opinion Patrick is teaching everyone a little something.
 
Patrick is now 5 years old. This is a day we thought would never happen. He eats everything we eat, walks, talks and attends pre-k in a regular public school. Developmentally, he's a couple years behind but compared to the statistics given by the doctors he is doing wonderfully.
 
He has a minimum of 3 appointments per week and receives daily Speech, Physical and Occupational therapy at school.
 
It was like a light came on one day when I was looking at that beautiful face that God gave back to me. God is in my life everyday and I now know that I am important to his plan. I have that beautiful little face to remind me of it every day. I hadn't done anything to deserve a miracle. It was just a part of God's plan. Many lives have been touched through this and it is my hopes that God will continue to work in our lives to reach others.
 
I'd like to end with a quote from Jeremiah 29 Verse 11. There it says, "For I know the plans I have for you" says the Lord "Plans to prosper you and not to harm you, plans to give you hope and a future." God had a plan and I learn more about the life he intends for Patrick everyday. We are so very blessed by his grace and one day we will see the full picture as he intended.
 
When we question God's plan for us we need to remember this verse. Thank You.
 
 
 
A picture of Patrick:
 
 
More details about Patrick and his implant:
 
I am the mother of three beautiful children. (9-girl, 5-boy, 4-boy). At 11 months of age my now 5 year old son was stricken with a fatal case of Bacterial Meningitis. To make a long story short he was sent home on his first birthday, vegetative with no hopes of survival. The hospital had done all they could for him ranging from breathing tubes to feeding tubes. He was severely brain damaged and remained vegetative for four months. During this time thinking we would lose him we planned another child so our daughter would not be without a sibling. (Not at all expecting the next chain of events.) Patrick had a VP shunt to drain 878 spinal fluid, strabismus surgery on his eyes, tubes in his ears and then a cochlear implant. We were told not to expect anything from the implant because the brain damage was substantial and he may not understand what he hears much less speak. I must say that a younger child to learn from has been the greatest stimulation for him. He will let his little brother accomplish nothing without him trying very hard to also accomplish. He is now five years old, potty trained, walking on his own (after much work with a walker, canes and another surgery). But, the greatest gift is that he is both, hearing and speaking. Getting a cochlear implant for my son was the greatest decision I ever made. I honestly did not get much of a choice of devices as Patrick had a lot of ossification and it was thought he would need the compressed array that Med-El provided. Fortunately, the surgeon was able to get all but two electrodes implanted on a standard array and that is what we went with. I am tremendously happy with the device as it has given my son opportunities he never would've received in a deaf world. He can talk to anyone. His is speaking sentences and can tell me what he wants and how he feels. He is mainstreamed in our local county Preschool program and I am excited about his everyday progress. He does have cognitive delays and is basically only on a three year old level but, I account that more to his brain damage than anything else. The doctors have said that Cat Scans show 30% of his brain is hollow and it is a miracle that he ever came out of the vegetative state that he was in. I am happy to share our experiences and hope my story helps someone in their decisions.
 
He now wears the Med-El Tempo+ (Behind The Ear processor) and has also had the Body Worn Processor. Both worked wonderfully, yet it seems that he is hearing better with the BTE. We just received the rechargable battery pack option for this device which is exciting for us as it will save us a lot more money. He was implanted at Wolfson's Childrens Hospital (Jacksonville, FL) and we are frequent patients at Nemours Childrens Clinic where he receives Implant Rehab (Speech Therapy) once a week. We were going up to 4 days a week in the beginning to boost his speech and he has done wonderfully. Patrick currently uses the Pediatric Battery pack because it clips to his shirt. This way if he or one of his buddies knock it off or pull it off it stays attached and we don't loose such an expensive piece of equipment. It's wonderful to have a choice of wearing options for different situations. He really doesn't mess with it because he knows it's purpose and wants in on every waking moment. Before being implanted he heard NOTHING and even aided we got no responses. He would move his lips but, no sound would come out because that is what he saw from us. He now has full sentences and attends a regular Pre-K class in the county public school. He develops more everyday and learns new words constantly. I hope that this has helped you either to know Patrick better or helped you in a decision you were trying to make for you and/or your loved ones.
 
Thank You, Lisa McFeely
 
For more information on the local Jacksonville, FL 
Cochlear Implant Support Group 
 
904-282-6528 or e-mail: Diese E-Mail-Adresse ist vor Spambots geschützt! Zur Anzeige muss JavaScript eingeschaltet sein!
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Geschrieben von Margarete Baganz am .

Margarete Baganz: Frankfurter CI-Patientin von 1987

Guten Tag !

Ich möchte mich kurz vorstellen.

Mein Name ist Margarete Baganz. Jahrgang 1925.

Kurz erwähnen möchte ich, dass ich ein ausgezeichnetes Gehör hatte. Ich wurde während des Krieges eingezogen und tat als Funkerin meinen Dienst. Für diese Tätigkeit musste man bestens hören können und auch eine gute Konzentration haben.

Durch meine Heirat kam ich Ende 1945 nach Frankfurt. Es war die Zeit der Lebensmittelkarten. Irgendwann Anfang 1952 stand auch ich in der Schlange beim Einkauf. Mein Hintermann sagte, Ich möchte ihm bitte seinen Platz freihalten. Es dauerte noch eine Weile und der Verkäufer fragte mich, was ich möchte. Im selben Moment war mein Hintermann wieder da und tippte mir auf die Schulter und meldete sich zurück. Als ich mich umdrehte, muss ich den Kopf wohl etwas ruckartig gewendet haben. Jedenfalls mir war es dann komisch im Kopf. Als ich nach Hause kam, musste ich mich ins Bett legen, alles drehte sich um mich. Am anderen Tag ging es mir wieder besser. Aber in der folgenden Zeit merkte ich doch, mein Gehör wurde schlechter.

Besuche bei verschiedenen Fachärzten brachten nichts. Ich bekam ein Hörgerät. Dies seelisch zu verkraften war sehr schwer. Aber ich lebte und konnte hören.

Die Zeit verging, das Hören wurde schlechter, das Hörgerät wechselte von rechts nach links und und 1979 war ich von einer zur anderen Sekunde taub. Es war genau der 30. April 1979.

Die Ohrenärzte wussten nicht mehr weiter und ich kam in die HNO-Abteilung der Uni-Klinik Frankfurt/Main. Hier bekam ich Infusionen und ich konnte mit meinem Hörgerät wieder hören. Als ich dann im Frühjahr 1985 zur Massage ging, hat man wohl zu fest auf den Halswirbel gedrückt. Nach der zweiten Massage war mir dann gar nicht gut, mein Kopf war wie blöd. Ich ging dann nicht mehr zur Massage und schob das öfter auftretende Unwohlsein aufs Alter.

Im Urlaub im August 1985 war mir gar nicht so gut und eines Tages war ich taub. Wir fuhren nach Hause, am anderen Tag fuhren wir in die Uni-Klinik HNO-Abteilung und man behielt mich gleich da. Alle Versuche mit Infusionen und dergleichen blieben erfolglos. „Ich war taub".

In Hannover, Düren und Aachen wurden die Cochlea Implantationen schon gemacht. Frankfurt war noch nicht ganz so weit. Ich überlegte, sollte ich nach Hannover gehen, dort stand ich dann auf der Warteliste. Ich entschied mich zu warten, bis man in Frankfurt auch so weit ist. Und ich habe es nicht bereut.

Es dauerte noch 2 ½ Jahre, aber die Betreuung von der HNO-Abteilung war sehr gut. Herr Professor Dr. von Ilberg und auch Herr Dr. Desloovere (heute Herr Professor) waren für Fragen immer bereit und gaben jederzeit geduldig Auskunft. Ich fühlte mich gut aufgehoben und versorgt. Und dafür werde ich immer dankbar sein.

Ja, 2 ½ Jahre war ich taub. Diese Grabesstille war furchtbar. Mal war ich am Verzweifeln, mal war ich zufrieden, das Schicksal wollte es so.

Während der 2 ½ Jahre meiner Taubheit habe ich überhaupt nicht daran gedacht, mich bei schon Operierten zu informieren über Ihre Erfolge. Ich hätte es wohl auch nicht getan.

Als es im Dezember 1987 dann soweit war, dass man in Frankfurt diese Cochlea Operation machte und ich am 10.12.1987 operiert wurde und dann die erste Hörprobe war und ich verstand schon die ersten Worte, war ich der glücklichste Mensch. Diese Operation brachte mir mehr, als ich erhofft hatte.

Ich wollte hören, zu verlieren hatte ich nichts.

Am 13. Januar 1988 fand die erste Hörprobe statt, dabei waren Herr Prof. Desloovere, Herr Prof. Diller, Herr Prof. Klinke, Herr Corvinus und eine Dame, an die ich mich heute nicht mehr erinnere.

Ich hörte. Als dann am 27. Januar 1988 die Pressekonferenz stattfand, war ich anwesend und konnte schon einiges verstehen. Da auch das Fernsehen da war mit Holger Weinert, wurden im Mövenpick in Frankfurt Aufnahmen gemacht. Ein Video davon habe ich noch.

Da man im Laufe der Zeit sich noch besser eingewöhnt, war ich restlos glücklich.

Auch das Hörtraining in Friedberg verlief bestens. Herr Corvinus war mein Lehrer. Ich halte dieses Hörenlernen für sehr wichtig. Nach sechs Wochen Hörtraining war meine Zeit in Friedberg beendet.



Auch Erwähnen möchte ich noch, dass man für diese Zeit eine Familie, gute Freunde, kurz Menschen um sich hat, die helfen und Verständnis haben. Und das hatte ich, ich fühlte mich nie daneben, ich war, wo auch immer, ganz dabei. Und das ist die beste Hilfe, es belebt das Selbstbewusstsein !

Margarete Baganz

Kurmainzer Straße 89
61440 Oberursel

März 2003

Hier bin ich zu sehen, beim Neujahrsempfang des CIV HRM am 18.01.2003, bei dessen Gründungsversammlung im August 2002 ich auch als Gründungsmitglied die Satzung unterzeichnet habe.

  • Erstellt am .

Geschrieben von Maresa Ibiši am .

MEIN NEUES ‚HÖREN'

 
Ich war über sechsundzwanzig Jahre auf dem rechten Ohr taub, also von Geburt an hörte ich auf dieser Seite nichts mehr. Links bin ich hochgradig schwerhörig und trage ein Hörgerät.
 
Ein schwerer Hörsturz im März 2002 auf dem linken Ohr führte dazu, dass ich fast gar nichts mehr hörte. Jeder musste brüllen, damit ich überhaupt etwas verstand. Selbst ich sprach lauter als sonst, weil ich meine Stimme kaum noch wahrnahm.
 
Im Juni 2002 war es dann soweit. Am 11. Juni wurde ich in der HNO-Klinik Würzburg stationär aufgenommen. In den darauf folgenden Tagen wurden die Voruntersuchungen (CT, Hörnerv- und Gleichgewichtsprüfungen, Hör- und Sprachtests, Kernspin) durchgeführt, die alle positiv ausfielen. Der Oberarzt gab grünes Licht für eine Operation. Geplant war das rechte Ohr. 
 
Ich konnte es irgendwie nicht glauben, dass ich ein CI bekomme. Einerseits freute ich mich endlich wieder hören zu können, aber andererseits hatte ich auch Angst vor dem Eingriff. Die Operation wurde zweimal verschoben und ich war mit meiner Geduld echt am Ende. Diese ewige Warterei machte mich noch mehr nervös. Aber am 25. Juni wurde ich endlich operiert. Um 7.30 Uhr war ich unten vor dem OP-Saal. Bei der Narkosevorbereitung wurde mir übel, woraufhin ich etwas gespritzt bekam. Danach das Anästhetikum. Der Eingriff dauerte circa zwei Stunden und es gab einen etwas schwierigen OP-Verlauf, wegen einer Fehlbildung des Labyrinths (Organ im Innenohr). Irgendwann im Laufe des Tages kam ich wieder auf die Station. 
 
Ich war von der Narkose noch total benommen und hab bis zum nächsten Morgen durchgeschlafen. Am ersten postoperativen Tag ging es mir relativ gut, bin auch schon ein paar Schritte gelaufen. Natürlich habe ich alles langsam angehen lassen, denn ich hatte Probleme mit dem Gleichgewicht. In den nächsten Tagen bekam ich zu spüren, dass das CI in meinem Kopf ist. Die rechte Schädelseite fühlte sich ziemlich pelzig und taub an. Trotzdem merkte ich diesen Fremdkörper in mir und was ich nebenbei auch noch bemerkt habe, ist, dass ich auf meinem linken Ohr wieder besser hören konnte. 
 
Vier Tage nach der Operation wurde mein Druckverband entfernt. An diesem Tag wurde ich plötzlich von einem Drehschwindel überrascht, so dass ich den Boden unter den Füßen verlor und stürzte. Große Aufregung! Hat das CI etwas abbekommen? Ist die Naht aufgeplatzt? Sämtliche Fragen schossen mir durch den Kopf. Der diensthabende Oberarzt bestätigt, dass alles in Ordnung ist. Gegen den Schwindel bekam ich ein paar Tage Infusionen, welche rasch anschlugen. Nach insgesamt fast vier Wochen durfte ich endlich nach Hause.
 
Zwei Wochen später verschlechterte sich das linke Ohr erneut. Zusätzlich bekam ich heftigen Tinitus. Es wird Zeit, dass ich den Sprachprozessor angepasst bekomme. Mitte August war ich für die Erstanpassung drei Tage stationär in der Würzburger Klinik. Ein wirklich spannender Augenblick, wie ich den Prozessor einschaltete. Auf einmal war alles so laut. Bei jedem Geräusch erschrak ich und es tat auch ehrlich gesagt etwas weh. Ich war so glücklich, dass ich auf einmal Töne und Geräusche auf dem tauben Ohr wahrnehmen konnte. 
 
Am Nachmittag war ich draußen spazieren, um die Umweltgeräusche kennen zu lernen. Zwei- bzw. dreimal am Tag musste ich beim Audiologen erscheinen, um ihm meine Eindrücke mitzuteilen. Gegebenenfalls wurde die Einstellung am Prozessor etwas geändert. Einige Stunden später hatte ich höllische Kopfschmerzen, eine Folge der Umstellung im Gehirn. Am zweiten Tag merkte ich, dass das linke Ohr sich wieder erholt hatte und ich konnte wieder hören, wie vor dem Hörsturz. Daraufhin war ich noch glücklicher.
 
Der Sinn der Sache ist aber, dass man nur mit dem CI hören soll. Für mich gar nicht so einfach nach sechsundzwanzig Jahren das Hörgerät beiseite zu legen. Nach mehreren Sitzungen bei der Einstellung verstand ich auch schon ein paar Zahlen. Das ist schon mal ein guter Anfang. Das Sprachverständnis fehlte noch. Denn nach sehr langer Taubheit kann es Monate bzw. Jahre dauern, bis man richtig hören kann. Da braucht man viel Geduld.
 
Dreimal war ich bis jetzt schon zur Einstellung dort. Im November waren Sie leider nicht ganz so zufrieden mit meinem Hörvermögen. Der Grund ist, dass das linke Ohr wieder gut hört und damit die Arbeit vom rechten übernimmt. Daraufhin hat man mir empfohlen mit einer CD-ROM das Hören mit dem CI zu trainieren. Seit ein paar Wochen übe ich jeden Tag eine Stunde am Computer mit dem „Hörlabor 1.0". Es macht richtig Spaß und Fortschritte mache ich auch.
 
Ich bereue es auf keinen Fall, dass ich das CI bekommen habe. Ich bin sehr glücklich darüber - nicht nur ich, sondern auch meine Familie und Freunde. 
 
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