Thema: Rosettenbildener glioneuronaler Tumor
Rosettenbildener glioneuronaler Tumor
Marlene82
11.12.2018 11:23:32
Hallo. Unsere Tochter hat einen RGNT. Ein sehr seltener gutartiger Tumor, WHO Grad 1. Suche Betroffene mit demselben Tumor zwecks Erfahrungsaustausch.
LG, Marlene
LG, Marlene
Marlene82
Iain
18.12.2018 19:16:53
Hello Marlene
I am sorry this is in English, I hope you can understand. I was diagnosed with this tumour in March this year. It has been a really difficult journey for my family and I and I can understand how you feel. My tumour was 3.5 cm and in the very center of my brain. At first, Prof Kramer in Hamburg didn’t want to operate because the location was so dangerous. Due to my severe deafness, they decided they would attempt the operation to allow them to perhaps fit a cochlear implant. I underwent a 10 hour brain surgery operation in June and everything went well. I am and still am a bit lame on my left side and my speech has also been affected. On Tuesday last week, I was back in Hamburg and got a MRI scan which showed that the tumour was completed gone!!! I feel very positive. The tumour was also a grade 1 and very slow growing, the doctor said that there were only about 50 people worldwide with this tumour type and they were unable to give us any further advice and couldn’t answer our questions. I am now tumour free and will continue to have regular checkups.
I am sorry this is in English, I hope you can understand. I was diagnosed with this tumour in March this year. It has been a really difficult journey for my family and I and I can understand how you feel. My tumour was 3.5 cm and in the very center of my brain. At first, Prof Kramer in Hamburg didn’t want to operate because the location was so dangerous. Due to my severe deafness, they decided they would attempt the operation to allow them to perhaps fit a cochlear implant. I underwent a 10 hour brain surgery operation in June and everything went well. I am and still am a bit lame on my left side and my speech has also been affected. On Tuesday last week, I was back in Hamburg and got a MRI scan which showed that the tumour was completed gone!!! I feel very positive. The tumour was also a grade 1 and very slow growing, the doctor said that there were only about 50 people worldwide with this tumour type and they were unable to give us any further advice and couldn’t answer our questions. I am now tumour free and will continue to have regular checkups.
Iain
lotte98
19.12.2018 13:50:20
Liebe Marlene,
das tut mir so leid daß es kaum Erfahrungen für diese Art Tumor gibt. Aber der Bericht aus Hamburg klingt doch vielversprechen, ich hoffe, es hilft dir und deiner Kleinen weiter.
Ich denke an euch, liebe Grüße,
Lotte
das tut mir so leid daß es kaum Erfahrungen für diese Art Tumor gibt. Aber der Bericht aus Hamburg klingt doch vielversprechen, ich hoffe, es hilft dir und deiner Kleinen weiter.
Ich denke an euch, liebe Grüße,
Lotte
lotte98
Marlene82
20.12.2018 21:34:56
Hello Iain,
thank you for your message. This tumour is very rare. In the case of our daughter the tumour is inoperabel. The tumour is located in the mesencephalon of the brainstem. Where exactly was your tumour?
Where are you from? Did you come to Germany because of the tumour? Why did you choose the hospital in Hamburg? I am looking for specialists from abroad, for example Switzerland or the United States.
I know two more people with this tumour. In both cases the tumour could be operated on and they have a good quality of life. I wish you the same.
thank you for your message. This tumour is very rare. In the case of our daughter the tumour is inoperabel. The tumour is located in the mesencephalon of the brainstem. Where exactly was your tumour?
Where are you from? Did you come to Germany because of the tumour? Why did you choose the hospital in Hamburg? I am looking for specialists from abroad, for example Switzerland or the United States.
I know two more people with this tumour. In both cases the tumour could be operated on and they have a good quality of life. I wish you the same.
Marlene82
Frank123
25.10.2021 15:26:08
einnen rgnt habe ich auch , keiner will operieren
https://ibb.co/175ybh3
https://ibb.co/175ybh3
Frank123