So we did not worry. For four days! Then we searched the internet, and the first hit was to the second largest hospital in the Western part of Denmark (Århus Sygehus), where they have a neurosurgon, who was willing to give us a second opinion on the MRI-scan. Her conclusion was very different. She told us that the lipoma indeed is tethering the spinal cord, that it does not seem to be acute, but that she would highly recommend surgery. A lipoma like this can - with high probability - lead to permanent damage of the bowel and bladder function, and make Sebastian forever unable to use his legs.
Sebastian (5 1/2 year old) is still wet a nights (not all nights, but more than 50%), and has the odd accident from time to time. We have been told, that tethering of the cord can be connected to constipation, which Sebastian very often suffers from. He has very poor oral intake, and has not gained weight for 9 months now. He is still growing in height though, being on growth hormones. Sebastian has appr. weekly pais of the feet/legs, which also can be a symptom of tethering of the spine.
As the MRI-scan from September last year was not complete (the machine had been turned off halfways, as the doctors could not find any trouble on the vertical pictures!), a new MRI-scan with axial pictures was performed on the 30th of March 2010 in Copenhagen. So we thought...
A couple of days ago a doctor from Rigshospitalet calls us and drops the bomb: they have now looked at the scan from the 30th of March, and see that they - accidentially - DID NOT do axial pictures, but the vertical pictures (like the scan from September 2009) again. They were, of course, very sorry, but as they can still see no signs of a tethered cord, then they still see no reason to do another MRI-scan with axial pictures!!!
As you might understand we exploded when we heard this. And both Tue and I went to a meeting today with the professors involved in all this. The circus part of it is that they cannot even explain what went wrong. On the order for the scan it says 'axial' - but still it ended up vertical! What a waste of Sebastians precious time - and what a waste of ressources!
We asked them today what causes the big difference between their conclusion of 'no tethering of the cord' and Århus' intent to put Sebastian to surgery for this. Their answer is that there is an American school and a French school amongst neurosurgeons. The American 'wing' diagnoses far more tethered cords than the French. And the French school - even though a diagnosis of tethered cord appears - is not very willing to perform surgery. Apparently the experience of the French school is that untethering of the cord often do not help much to ease off symptoms. And together with the risk included in performing surgery in the spinal cord, they are far more reluctant to put a patient under the knife.
When we asked the professors today what they would do in our situation - meeting two opposing wings in a medical field - they just shrugged their shoulders and said "don't know". Very helpfull. We did manage to get a new MRI-scan for Sebastian (great! this will be the sixth full anesthesia in one year for him) within the next two weeks. The exact date has not been fixed yet. So we will just wait a little longer - again.
When the next scan has been performed, we hope to be able to transfer it to a third neurosurgeon - for a third opinion. If there is a way out, where we safely can avoid - what to us seem like - a risky surgery in the spine of Sebastian, they we would be so happy to find it! - but we need certainty that we make the right decision for him on a qualified basis.
