Well I just got back from Vancouver and the Bladder Care Centre where I went yesterday to see Dr. Stother to get my urodynamic test results. I guess it's a good news bad news type situation.
One one hand it is good that the testing showed something that supports my Occult tethered cord diagnosis but bad news that I have nerve damage to my bladder.
Dr. Stothers once again proved to be such a great doc. Easy to talk to and acknowledging that I know a lot about my condition. It was really validating to have a doc with this kind of attitude. She showed me the graphs from my urodynamic testing and explained it really well.
A normal graph shows a sharp incline up to about 20mmH2O as you bladder contracts and then you start voiding. It stays up at 20 until you bladder is empty and then drops off. My graph stays at nothing for a long time and then finally slowly climbs to about 10 then drops back off then goes up again to 15 then drops back off then up to 12 drops back off etc etc. My graph looks like small waves and goes on a long time. This is consistent with my experience voiding. It takes forever, starts and stops and I can't empty. Both times I was there they did an ultrasound of my bladder following voiding and I always have a 150-250mls left.
The good news is that although my bladder contractions are weak and intermittent, the pressure in my bladder remains low. If you have high bladder pressure you are in danger of urine backing up into your kidneys and this is very serious. Luckily I don't have this issue. Dr. Stothers states that this could be consistent with tethered cord but is definately originating from very low down on the spinal cord. She said this is not a brain issue of a brainstem issue.
She also mentioned that there is ongoing contraversy about tethered cord surgery and improvement of bladder function. She said the research is still "fuzzy" and is constantly in debate at every urology conference she goes too. In other words tethered cord surgery will not guarantee me a return to normal bladder function. I did know that but I am hoping that it will prevent further damage and I think this fact is less contraversial.
I also asked her opinion on my oldest daughter Sophia who is 8years old. She has had UTI's since she was toilet trained and has been to see a urologist and had all sorts of tests including a voiding cystourethrogram (VCUG) She has a small pouch off of her bladder in which urine collects and leads to frequent UTI's. She has had less since we have concentrated on having her go more frequently and not holding it until the last minute but 2 weeks ago she had another one and was back on anti-biotics. All this investigation was done before I was diagnosed so I didn't know to suspect tethered cord or related disorders.
I asked Dr. Stothers opinion on whether or not it was worth revisiting the issue now that I know what I have or if I am just being a neurotic mother. She said it is most definately worth looking into and she highly recommmends the urologist that we have already seen for her. So I will be making another follow up appointment for her and maybe she will need an MRI to see what is going on with her spinal cord too. I have kinda avoided thinking too much about it as I know she doesn't have symptoms severe enough to require treatment but still I guess it is worth knowing what is going on.
So Dr. Stothers is forwarding my test results to my neurosurgeon who I see in June and she will see me again in 6 months to track what my bladder function is doing.
(the graphs above are of a normal test showing bladder contraction and flow rate)
Well I just got back from Vancouver and the Bladder Care Centre where I went yesterday to see Dr. Stother to get my urodynamic test results. I guess it's a good news bad news type situation.
One one hand it is good that the testing showed something that supports my Occult tethered cord diagnosis but bad news that I have nerve damage to my bladder.
Dr. Stothers once again proved to be such a great doc. Easy to talk to and acknowledging that I know a lot about my condition. It was really validating to have a doc with this kind of attitude. She showed me the graphs from my urodynamic testing and explained it really well.
A normal graph shows a sharp incline up to about 20mmH2O as you bladder contracts and then you start voiding. It stays up at 20 until you bladder is empty and then drops off. My graph stays at nothing for a long time and then finally slowly climbs to about 10 then drops back off then goes up again to 15 then drops back off then up to 12 drops back off etc etc. My graph looks like small waves and goes on a long time. This is consistent with my experience voiding. It takes forever, starts and stops and I can't empty. Both times I was there they did an ultrasound of my bladder following voiding and I always have a 150-250mls left.
The good news is that although my bladder contractions are weak and intermittent, the pressure in my bladder remains low. If you have high bladder pressure you are in danger of urine backing up into your kidneys and this is very serious. Luckily I don't have this issue. Dr. Stothers states that this could be consistent with tethered cord but is definately originating from very low down on the spinal cord. She said this is not a brain issue of a brainstem issue.
She also mentioned that there is ongoing contraversy about tethered cord surgery and improvement of bladder function. She said the research is still "fuzzy" and is constantly in debate at every urology conference she goes too. In other words tethered cord surgery will not guarantee me a return to normal bladder function. I did know that but I am hoping that it will prevent further damage and I think this fact is less contraversial.
I also asked her opinion on my oldest daughter Sophia who is 8years old. She has had UTI's since she was toilet trained and has been to see a urologist and had all sorts of tests including a voiding cystourethrogram (VCUG) She has a small pouch off of her bladder in which urine collects and leads to frequent UTI's. She has had less since we have concentrated on having her go more frequently and not holding it until the last minute but 2 weeks ago she had another one and was back on anti-biotics. All this investigation was done before I was diagnosed so I didn't know to suspect tethered cord or related disorders.
I asked Dr. Stothers opinion on whether or not it was worth revisiting the issue now that I know what I have or if I am just being a neurotic mother. She said it is most definately worth looking into and she highly recommmends the urologist that we have already seen for her. So I will be making another follow up appointment for her and maybe she will need an MRI to see what is going on with her spinal cord too. I have kinda avoided thinking too much about it as I know she doesn't have symptoms severe enough to require treatment but still I guess it is worth knowing what is going on.
So Dr. Stothers is forwarding my test results to my neurosurgeon who I see in June and she will see me again in 6 months to track what my bladder function is doing.
(the graphs above are of a normal test showing bladder contraction and flow rate)