Urinary incontinence after possible DCI II episode - desperate - any hope?

[Cavetecdiver]

Hi All,

Writing out here as maybe someone had any similar trouble or can direct me to any possible direction as slowly I am loosing hope for any better.
I am 34 years old and I had over 350-400 dives and was also diving tec. Few years ago (~6) I had DCS II episode on 50m dive which was undeserved and full decompression was finished with additional safety stops. Main symptoms were paresthesia, weakness, extreme fatigue, sleeping all time and joint paints. Contacted DAN and after oxygen therapy all symptoms were gone. Just for cautiousness (as case was undeserved) I did vascular doppler, echocardiography and all diagnostics recommended by DAN at that time. It was recommended to increase conservatism but nothing was found.
I continued diving with additional deco conservatism and using nitrox whenever possible.

Then in 2020 I had very easy shallow dive to max 12 meters for roughly 1.5h on oxygen, and most of the time at 5m.
After dive I felt a bit "weird" as my eyes were not able to focus properly and some fatigue for 2-3 days. I had also first bladder incontinence episode but I haven't really realized that at the time. At night I also had paresthesia in hands and legs.

I took oxygen 2x for 20 mins just to be on safe side, and went to neurologist / oculist to do full evaluation following DAN recommendations.
Bladder incontinence was slight and I was connecting it with cold water only / (or just maybe some infection).
Evaluation shown only some eye (-1.5 defect) and after 3 months break physician said there is no obstacle for diving with conservatism.

I continued diving and I realized that more often after some dives I have focus problems and saw that bladder incontinence progresses.
I stopped diving and asked DAN Europe (As this is my region) for advice. They recommended urology/neurology diagnostics and mentioned I should not connect bladder problems with diving/DCS apart from cold water impact (which personally I think was rather driven by the fact it cannot be proven rather than any scientific data). They advised to stop diving until full evaluation.

Bladder problems included detrusor overactivity at random time, random urges and incontinency during physical activity. I realized also slow urine flow.
Every 4 hours I had to replace my pants as they were wet O !!!)
I stopped hoping for coming back to any sport activities not mentioned diving...

I continued Urology / Neurology diagnostics for 2 years which involved:
- several urine diagnostics for bacteria (no bigger anomalies)
- Brain MRI without contrast (no anomalies)
- Several Bladder/Kidney ultrasound (has shown 300ml of urine outstanding after miction, no prostate enlargement or any other anomalies)
- Uroflowmetry (has shown slow urine flow)
- Brain MRI with contrast (no anomalies)
- Different pills (sollifinacinum, tamsulosyn configurations)
Urologist said potentially it can be spinal cord damage but there is no way to check it for sure.

After researching I found on internet there were similar cases to mine but with lack of details about treatment / possible rehabilitation or additional diagnostics:
[Neurogenic bladder dysfunction a main disability of decompression sickness: a case report] - PubMed - Neurogenic bladder dysfunction a main disability of decompression sickness: a case report
The "bends" and neurogenic bladder dysfunction - PubMed - The "bends" and neurogenic bladder dysfunction

Have anyone experienced issue like that with possible treatment?
Any rehabilitation techniques, muscle exercises, electric stimulation techniques? Maybe asian medicine?
Any surgery possibly fixing the issue?

I am completely desperate as I was very sport active person and now I am shy to leave my apartment to go to work, play with children, avoiding people, feeling like close to death and I am 34 year, 75 kg, with very good condition (apart from bladder) .
I cannot live like that and I am open for even the worst surgeries just to be able to come back to normal life...

Any ideas / advices or contacts would be appreciated

Thank you,

 

[crofrog]

You should go see an occupational therapist to learn how to manage the incontinence if you haven't yet.

 

[lowviz]

Try these links, local for me...

https://www.pennmedicine.org/for-patients-and-visitors/patient-information/conditions-treated-a-to-z/urinary-incontinence

https://www.pennmedicine.org/practices/hyperbaric-medicine

Hyperbaric Medicine – Penn Emergency Medicine

www.pennem.com

 

[dsvs]

Urologist here. You need a comprehensive evaluation including urodynamic studies (not just a flow rate) by a subspecialist who has an interest in functional urology, ideally someone who has a link to a spinal injuries unit as they would have the most experience with something like this. If you PM me your location I'll have a look for potential specialists.

 

[Duke Dive Medicine]

Then in 2020 I had very easy shallow dive to max 12 meters for roughly 1.5h on oxygen, and most of the time at 5m.

I'm curious about this part - can you confirm what gas you were breathing? This looks like you were on 100% O2.

Best regards,
DDM

 

[Cavetecdiver]

I'm curious about this part - can you confirm what gas you were breathing? This looks like you were on 100% O2.

Best regards,
DDM

IT was dive on air. Typo mistake correcting

 

[Duke Dive Medicine]

IT was dive on air. Typo mistake correcting

Thanks for clarifying. Depending on dive profile, the symptoms after your second dive could conceivably be related to decompression sickness. Taken alone they would be concerning, but you're describing consistent neurological symptoms after diving. Whether those are related to DCS or not, that is extremely concerning and I would recommend that you avoid diving until you figure out what's going on. From a diving standpoint, one wonders whether you have some sort of lung pathology like blebs or bullae that are causing repeated pulmonary barotrauma. There's also a possibility that you are a "bubbler", so to speak. Some people consistently produce more venous gas emboli than average, and combined with some sort of right-to-left shunt like a PFO or intrapulmonary shunt, that potentially could be the source of your symptoms. That's all speculation, but it could be something to bring up with your care team. Speaking of which, have you seen a specialist in diving medicine? Also, to your urologist's point, did you ever have any imaging of your spine?

Best regards,
DDM

 

[Cavetecdiver]

Hello Duke Dive,

I highly appreciate your detailed answer.

From a diving standpoint, one wonders whether you have some sort of lung pathology like blebs or bullae that are causing repeated pulmonary barotrauma.

Can I check it by any simple diagnostics as spirometry, rtg or arterial gas blood test?

There's also a possibility that you are a "bubbler", so to speak. Some people consistently produce more venous gas emboli than average, and combined with some sort of right-to-left shunt like a PFO or intrapulmonary shunt, that potentially could be the source of your symptoms.

This is something I suspect after my first incident in 2016. Since that I did:
- Transcranial Doppler with bubble check -> didn't show up any shunt
- Whole heart diagnostics like rtg, echocardiography even holtter monitor
and I checked with diving doctor and with DAN if they would recommend maybe "transthoracic echocardiogram" but they constantly were saying it is not needed for such case and only diving conservatism is recommended.

Is there any other way I can check I am "bubbler" and any potential root cause?
I heard about some portable ultrasound doppler scanners which can be used just right after the dive. Could that show that my number of bubbles is above average which would be good indication to go finally for transthoracic echocardiogram?

I tried also to check saturation just after the dive - but also no any anomalies...

Also, to your urologist's point, did you ever have any imaging of your spine?

I did not have as urologist said "it will rather not show anything" -> but I can try to arrange it from other doctor as I believe you are right to double check there are no any pathology visible there.

That's all speculation, but it could be something to bring up with your care team. Speaking of which, have you seen a specialist in diving medicine?

I tried but I believe I was not able to find one good enough. I even tried to reach via DAN one of best hyperbaric experts here locally -> but official answer was that all these symptoms for sure are not related "to diving medicine area" and must have other root cause which should be evaluated by urologist not diving medicine specialist. And that the symptoms root cause is rather around cold water diving than any DCS consequence.
(which based on symptoms seriousness I don't truly believe it was evaluated carefully enough)
I was even thinking to travel abroad here in europe maybe to evaluate myself in some other "hypherbaric medicine center" but I am not sure if that wont be just only waste of big amount unless I found someone really experienced in such cases

 

[Cavetecdiver]

You should go see an occupational therapist to learn how to manage the incontinence if you haven't yet.

Thanks a lot for that hint - I looked for occupational therapy with some possible electrostimulation and should have some first sessions in next two weeks. I hope it will give any improvement.

 

[Duke Dive Medicine]

Hello Duke Dive,

I highly appreciate your detailed answer.


Can I check it by any simple diagnostics as spirometry, rtg or arterial gas blood test?


This is something I suspect after my first incident in 2016. Since that I did:
- Transcranial Doppler with bubble check -> didn't show up any shunt
- Whole heart diagnostics like rtg, echocardiography even holtter monitor
and I checked with diving doctor and with DAN if they would recommend maybe "transthoracic echocardiogram" but they constantly were saying it is not needed for such case and only diving conservatism is recommended.

Is there any other way I can check I am "bubbler" and any potential root cause?
I heard about some portable ultrasound doppler scanners which can be used just right after the dive. Could that show that my number of bubbles is above average which would be good indication to go finally for transthoracic echocardiogram?

I tried also to check saturation just after the dive - but also no any anomalies...


I did not have as urologist said "it will rather not show anything" -> but I can try to arrange it from other doctor as I believe you are right to double check there are no any pathology visible there.


I tried but I believe I was not able to find one good enough. I even tried to reach via DAN one of best hyperbaric experts here locally -> but official answer was that all these symptoms for sure are not related "to diving medicine area" and must have other root cause which should be evaluated by urologist not diving medicine specialist. And that the symptoms root cause is rather around cold water diving than any DCS consequence.
(which based on symptoms seriousness I don't truly believe it was evaluated carefully enough)
I was even thinking to travel abroad here in europe maybe to evaluate myself in some other "hypherbaric medicine center" but I am not sure if that wont be just only waste of big amount unless I found someone really experienced in such cases

Re the ruling out of lung pathology like blebs or bullae: again this is speculation, not suggesting that you need to run out and do this, but you would need a high-resolution CT scan for that.

Good to hear about the negative TCD with bubbles - it's likely that you can rule out shunting then, which would make you being a "bubbler" something of a moot point and obviate the need for further study like transthoracic echocardiography to determine shunt morphology.

Re saturation, if you're talking about pulse oximetry, a low reading following a dive would be an alarming sign, especially in the setting of decompression sickness. A normal reading on room air doesn't really rule out anything but significant respiratory depression or pulmonary pathology.

Exactly where in Europe are you?

Best regards,
DDM