Guest guest Posted January 19, 2009 Report Share Posted January 19, 2009 Hi Nathalie, I was operated on by a NS in Karlsruhe, Germany 4 years ago. He does significant numbers of de-tetherings every year; not sure if he is specialized in pediatric or adult detetherings. If you are interested I could dig out the name. By the way I am not too far from you - Milano. Regards, Subject: My daughter Emma To: tetheredspinalcord Date: Monday, January 19, 2009, 8:02 AM Hi everyone, I wanted to introduce myself to this group. My name is Nathalie and I have a 14 month old girl with Caudal Regression Syndrome. Recently we discovered that she also has a tethered spinal cord. We live in Malta, which is a small island in the middle of the Mediterranean sea. Since these conditions are so rare we fly to Germany very often for her to be visited by doctors. Luckily the government and a lot of organisations are very helpful. We are still unsure whether to operate on her tethered cord. She is not in pain or spastic but they do not know whether the incontinence is due to the tethered cord or the CRS. They told us that if we operate she could loose the sensitivity in her legs. If we don't she might loose it just the same. Any suggestions for specialists in this area, we consider also going to the US. Thanks, Nathalie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 19, 2009 Report Share Posted January 19, 2009 Nathalie, You may wish to consider the UK for some or all of your daughters' care and surgical needs? I know that there is a great bond between our nations, as a result of World War 2 and Malta's closeness to Italy and Sicily. I have visited your beautiful island on a few ocassions, staying in places as divers as Melliha Bay, Mdina, St s and the Blue Grotto aree. I love both the country and it's people. I would consider it an honour to be able to assist your fact finding journey, for suitable care for your daughter, from the UK? Best wishes wheelzuk > > Hi everyone, > > I wanted to introduce myself to this group. My name is Nathalie and I > have a 14 month old girl with Caudal Regression Syndrome. Recently we > discovered that she also has a tethered spinal cord. > > We live in Malta, which is a small island in the middle of the > Mediterranean sea. Since these conditions are so rare we fly to > Germany very often for her to be visited by doctors. Luckily the > government and a lot of organisations are very helpful. > > We are still unsure whether to operate on her tethered cord. She is > not in pain or spastic but they do not know whether the incontinence > is due to the tethered cord or the CRS. They told us that if we > operate she could loose the sensitivity in her legs. If we don't she > might loose it just the same. > > Any suggestions for specialists in this area, we consider also going > to the US. > > Thanks, > > Nathalie > Quote Link to comment Share on other sites More sharing options...
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