Author Topic: best surgery in Belgium?  (Read 2663 times)

Caroline

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best surgery in Belgium?
« on: October 15, 2008, 09:30:31 am »
Hi,
we live in Belgium and my husband (43) has just been "informed" that he "has to" get a surgery for his AN, discovered 1 year ago.
We are completely lost, scared, and have difficulties to find information for Belgium,
does anyone know which hospital has a specialist? France or Germany would be fine as well, if the chances to find an experienced team are better.
many thanks in advance for your help, and please forgive my bad english.
Caroline

Dan

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Re: best surgery in Belgium?
« Reply #1 on: October 16, 2008, 01:46:31 am »
Caroline,
Welcome to the forum, sorry you had to join us but you have come to the right place for information and support.  You said that your husband has to have surgery, did the Drs tell him that depending on the size of AN there are more options, how large is the AN?.  Wait and watch and Gamma Knife or Cyber Knife are other options.  If it is so large that an OP is the only option then from my reseach and what I have read Hannover Germany has one of the best hospitals in Europe.  INI is a private hospital in Hannover (www.ini-hannover.de) that does Neoro surgery, you can send them information per E-mail and they will respond in german or english (possibly french).  There are other good hospitals in germany Bonn, and Mainz come to mind.  I was operated Sept 07 in the Uniklinik Mainz (Prof Mann) I know that he has alot of experience does AN surgery every Mon. and Fr. and is usaually booked for 3-4 months but does emergencys or very large tumors others days of the week.  I can't give you any information about Belgium or France.  Here in germany they also do Radio surgery in most of the larger cities, Hannover, Bonn, Frankfurt, and I know they also have alot of GK centers in Switzerland.
In most cases with ANs your husband has time to make a decision (months or even years).  I found out about my AN in Apr and then visited 2 different ENTs, sent my MRI and ENT recommendation to INI Hannover, went to Frankfurt and talked to GK specialists, visited Prof Mann in Mainz, talked with my Primary care giver (hausarzt), asked my brother-in-law that works in a hospital (who talked with the Drs) and in Aug I made the decesion to go with surgery.  When I was in Mainz in May I made an appointment for surgery for the end of Sept so that when I made my decision I wouldn't have to wait to long. 
If you speek german and need help with translations here on the sight my AN german is pretty good.  My grammer is still not good but I'll do my best, your english writting skills are probably better than my german.

Dan in Germany
US Army Retired, age 51,  residing and working in Germany.
Retrosigmoid 21 Sept 07 left side 1.76cm AN, Prof. Mann, Uniklinik Mainz Germany

Caroline

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Re: best surgery in Belgium?
« Reply #2 on: October 17, 2008, 04:56:17 am »
many thanks for this information and your kind words, Dan. I will first contact the Hannover hospital today. Being half German half French myself and although my hustband does not speak German, the language won't be a problem. The size of the AN has reached 22 mm this september, that is why the belgium doctor said it has to be removed by surgery and can not be treated otherwise. At the same time he said my husband won't hear at all anymore from the left ear but that he could have a "implant" (french word) put in, in order to get the sounds from the right ear transferred to the left ear. What is scaring is that he described all that can go wrong, from facial paralysis to balance problems, and was not able to suggest ways of improvement. But now, I am confident, that we may find the information we need if spreading around to Germany, Belgium being such a small country.
I hope that your surgery was a success.
Again, thank you very much,
Caroline

Dan

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Re: best surgery in Belgium?
« Reply #3 on: October 17, 2008, 06:35:20 am »
Caroline,
From what I have learned on this sight GK and CK usually can be used up to 30mm depending on position.  22mm is still concidered a medium size AN, does your husband have any other symtems. My AN was 17mm and I had 30% hearing loss and slight tinnitus, AN side.  After surgery I didn't have any problems the first 5 days but then they think because of swelling after 7 days I had paralysis on the AN side.  After about 4 weeks in Reha I started seeing movement again.  Three months after surgery I went back to work, I could have gone back sooner but we have to lift 20-25kg packages and the Dr said that I shouln't.  Now one year post OP I still notice a little paralysis but people that don't know I had surgery wouldn't see it, I also have 50% hearing lose in my left ear (AN side) but its only a problem when I'm at a party there is alot of background noise and someone speaks german to me from the leftside. 
Something that you must understand is the surgery effects almost everyone a little bit different.  There are people on this sight, people I met in the Hosp, and  Reha that had no problems after surgery but then there are others that had a small AN removed and SSD or even paralysis before surgery.  It depends on where the tumor is the procedure used to remove it, the surgeon, and the bodys reaction to the surgery. 

Dan in Germany 
   
US Army Retired, age 51,  residing and working in Germany.
Retrosigmoid 21 Sept 07 left side 1.76cm AN, Prof. Mann, Uniklinik Mainz Germany

Kaybo

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Re: best surgery in Belgium?
« Reply #4 on: October 17, 2008, 07:05:43 am »
Caroline~
Welcome to our little group.  I am sorry that your husband has an AN but glad you found this site.  There are a LOT of people willing to help out and answer questions!  I think DAN is already your best bet since he is over that way!!  Please don't be a stranger - let us help you - NO question is ever to minor or "dumb."

;D
Translab 12/95@Houston Methodist(Baylor College of Medicine)for "HUGE" tumor-no size specified
25 yrs then-14 hour surgery-stroke
12/7 Graft 1/97
Gold Weight x 5
SSD
Facial Paralysis-R(no movement or feelings in face,mouth,eye)
T3-3/08
Great life!

MYRIAM

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Re: best surgery in Belgium?
« Reply #5 on: October 29, 2008, 08:36:15 am »
Hi Caroline

I live in France and underwent AN surgery in December 2006 at "Hopital Beaujon" at Clichy (just outside Paris). My surgeon was Professor Olivier Sterkers the Head of the ENT department.

At the time of surgery my tumour was 1.6CM. The operation went well, no balance issues, no facial paralysis but I did become SSD (single sided deaf)

I returned to work (Translator in a Pharmaceutical Company) 5 weeks after the operation and have never looked back.

Please feel free to contact me if I can help in any way

Bon courage
 

Caroline

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Re: best surgery in Belgium?
« Reply #6 on: November 08, 2008, 02:04:51 am »
Merci and thanks for all this encouraging information.
The last 3 weeks have been very hectic because we have been talking to half Belgium in order to get better information. First of all, we have heard quite some unpleasant stories about the hospital and staff where my husband had seen the surgeon, and in the end someone asked "are you really sure that you can not try the GK?"
Because the medical staff seen previously had so firmly denied any possibility to be treated other way than by surgery, we never thought about it before. But now we have seen the belgian specialist for GK (Hospital ULB Erasme near Brussels). Although the AN's location is not the easiest, it seems that the GK therapy can be tried, but must be done with no delay. My husband has now decided that he wants to try the GK first, because being nearly without any symptoms, he does not want a surgery.
So he is scheduled for Dec 9, and we can only hope that everything will go well.

sgerrard

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Re: best surgery in Belgium?
« Reply #7 on: November 08, 2008, 12:34:26 pm »
Hi Caroline,

It is nice to see Myriam with a good surgery report from France, and of course Dan in Germany. Welcome to the forum, and thanks for starting an international topic. :)

I think radiation treatment is quite common in the USA for ANs up to 25 mm, and fairly common up to 30 mm. The actual AN location does determine what effect swelling may have after treatment, but with steroid treatments if needed, most post-radiation issues can be managed. The swelling effects can come and go over 6-18 months, so it can take a while to get stabilized. Generally speaking, the symptoms of swelling, which may include any of the usual AN symptoms, are temporary, not permanent.

Best wishes to your husband.

Steve
8 mm left AN June 2007,  CK at Stanford Sept 2007.
Hearing lasted a while, but left side is deaf now.
Right side is weak too. Life is quiet.

 


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