After reading this post at Yes No, I thought I'd put in our little story and update on the shunt issues.
A report was written up about my daughter's C.T. scan by a radiologist, as is the protocol. The report did not compare her scan to any past ones, because the older scans are still on film and not in a computer like they are now. A scan without a comparison is, basically, useless.
My husband popped over to the hospital and asked why no comparison had been made...they had no answers at the desk. He then asked to have the scan prior to this latest one released to him so that he could take it himself to the neurosurgeon and get a plan of action set up. "Well, I have to walk over to the East Wing to get it...." Yes, darling, you do and if there were a Tim Hortons down there, I'm sure it would make your few hundred metre stroll worth it. She got the scan and convinced my husband that it would be better to put the film on the radiologist's desk so that he could get at it first thing in the morning. It made sense, so my husband complied.
A call to the head of radiology got my husband an apology. Indeed, there was no excuse for the comparison to not have been made and for the report to be sent off late...but the radiologist travels from hospital to hospital and is not familiar with all the cases. A promise was made that the report had been immediately sent off.
Well...three weeks later...my husband basically called every day to get some sort of report from the neurosurgeon and none was ever forthcoming...because the report had actually not been sent! Back to the hospital went hubby to get the report and read it himself, along with films and a plan to visit the neurosurgeon himself. The desk lady refused to hand over the report, even though it had been released and the new report was an addendum to the previous one. It is a testament to hubby's self control that he did not kill this woman on the spot because she was flat out wrong. Another call to the radiology boss...another mistake...more time lost. Unbelievable. Long story short...the radiologist actually read the report "in situ", that is, back in Kingston where he lives (about 6 hours away from here), and that he actually did not get to the "desk" with the "films" until much later and then mailed the report. Yikes!
Sooooo....my husband booked a time with the neurosurgeon in London and spoke to her face to face, with all the films, computer disc and reports. She looked at everything and then took all the scans to her own neuro-radiologist for another opinion. These are the conclusions:
* It is clear that over the years the ventricles have, indeed, become smaller. This is a very good thing.
* The dark areas in the frontal lobe are not fluid, but damaged brain tissue. My daughter's entire frontal lobe is one giant near-dead piece of crap.
* There is no indication that the shunt is malfunctionning.
* It would be risky to remove the shunt valve and replace it with a programmable one at this point. Skull bone has grown all around the valve and has tightened around it. To replace the valve risks the little tube to be left behind in the ventricle and the need for another tube to be put in. Should there ever be an infection, they would have to drill a hole somewhere else through brain tissue and try to fish it out.
* If it ain't broke, don't fix it.
* The neurosurgeon is positively astounded, given Sophie's brain damage, that the child can do anything at all, let alone read, write, and memorize stuff...and she is always amazed that her personality remains intact.
* "What about an intrathecal Baclophen pump?!" Been there, won't do that.
* "What about spinal surgery?" Not yet, darling!
So, we just go on as usual. We are, however, going to try ORAL Baclophen. As far as drugs go, it's not too bad, but we have used it before and not only did it not work, it made her eyes all crazy and she had a mild tremor and neurological whine. That was years ago, however, so we're just going to check it out once more. If it reduces some of her spasticity, we can exercise her more effectively and soften her muscles. Hope it works?? Well, I'm not keen on this tack, but the alternatives are not powerful enough to do the trick at this point. Time will tell.
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A report was written up about my daughter's C.T. scan by a radiologist, as is the protocol. The report did not compare her scan to any past ones, because the older scans are still on film and not in a computer like they are now. A scan without a comparison is, basically, useless.
My husband popped over to the hospital and asked why no comparison had been made...they had no answers at the desk. He then asked to have the scan prior to this latest one released to him so that he could take it himself to the neurosurgeon and get a plan of action set up. "Well, I have to walk over to the East Wing to get it...." Yes, darling, you do and if there were a Tim Hortons down there, I'm sure it would make your few hundred metre stroll worth it. She got the scan and convinced my husband that it would be better to put the film on the radiologist's desk so that he could get at it first thing in the morning. It made sense, so my husband complied.
A call to the head of radiology got my husband an apology. Indeed, there was no excuse for the comparison to not have been made and for the report to be sent off late...but the radiologist travels from hospital to hospital and is not familiar with all the cases. A promise was made that the report had been immediately sent off.
Well...three weeks later...my husband basically called every day to get some sort of report from the neurosurgeon and none was ever forthcoming...because the report had actually not been sent! Back to the hospital went hubby to get the report and read it himself, along with films and a plan to visit the neurosurgeon himself. The desk lady refused to hand over the report, even though it had been released and the new report was an addendum to the previous one. It is a testament to hubby's self control that he did not kill this woman on the spot because she was flat out wrong. Another call to the radiology boss...another mistake...more time lost. Unbelievable. Long story short...the radiologist actually read the report "in situ", that is, back in Kingston where he lives (about 6 hours away from here), and that he actually did not get to the "desk" with the "films" until much later and then mailed the report. Yikes!
Sooooo....my husband booked a time with the neurosurgeon in London and spoke to her face to face, with all the films, computer disc and reports. She looked at everything and then took all the scans to her own neuro-radiologist for another opinion. These are the conclusions:
* It is clear that over the years the ventricles have, indeed, become smaller. This is a very good thing.
* The dark areas in the frontal lobe are not fluid, but damaged brain tissue. My daughter's entire frontal lobe is one giant near-dead piece of crap.
* There is no indication that the shunt is malfunctionning.
* It would be risky to remove the shunt valve and replace it with a programmable one at this point. Skull bone has grown all around the valve and has tightened around it. To replace the valve risks the little tube to be left behind in the ventricle and the need for another tube to be put in. Should there ever be an infection, they would have to drill a hole somewhere else through brain tissue and try to fish it out.
* If it ain't broke, don't fix it.
* The neurosurgeon is positively astounded, given Sophie's brain damage, that the child can do anything at all, let alone read, write, and memorize stuff...and she is always amazed that her personality remains intact.
* "What about an intrathecal Baclophen pump?!" Been there, won't do that.
* "What about spinal surgery?" Not yet, darling!
So, we just go on as usual. We are, however, going to try ORAL Baclophen. As far as drugs go, it's not too bad, but we have used it before and not only did it not work, it made her eyes all crazy and she had a mild tremor and neurological whine. That was years ago, however, so we're just going to check it out once more. If it reduces some of her spasticity, we can exercise her more effectively and soften her muscles. Hope it works?? Well, I'm not keen on this tack, but the alternatives are not powerful enough to do the trick at this point. Time will tell.