Momma2Bullies

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ADULT ONSET HYDROCEPHALUS

Hi everyone, I know I haven't posted in a while but I am turning to you for some help and advice. My Wilbur suddenly started having difficulty walking and wouldn't settle down, yelped in pain when I tried to move him (and he never cries - not even when he hurts his eyes with jagged nylabones (yes that has happened - long story) or when he blew his knee out...)

After a long couple of days and endless tests, a CT Scan/MRI and Spinal Tap, he has been diagnosed with Hydrocephalus. The good news is it is not lymphoma, it is not from a tick bite, and it is not from an infection causing inflammation. The difficulty is the cause is unknown (it isn't a physical blockage preventing the fluid from draining either)...and now we know why he started having seizures in 2015, this fluid has been building for a while.

Does anyone have any experience with this? Wilbur is 6 1/2 now. This is normally seen in puppies. He is on a ton of medications, prednisolone (which I have always tried to avoid), antibiotics, Prilosec and Phenobarbitol. He is very sedated and drugged up, I feel like he just isn't even here anymore. I don't know what to do, if this is something that he will live through or if he will always have to be this drugged. Am I allowing him to live a life of misery?

I know there are no answers and in a week I have another visit to the neurologist, but if anyone has any advice or knowledge it would be so appreciated.

xo
 

oscarmayer

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please see my PM
 

Manydogs

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A high specialized technique can also be done where a shunt is placed to redirect CSF from one part of the skull to a more benign location, such as within the abdominal cavity where the excess fluid can easily be reabsorbed. Only a veterinary neurologist or surgeon has the training and expertise to do this procedure.

** I do not have any experience with this, but the fella who used to cut my hay,his wife had this, and after they finally diagnosed, they placed a shunt in her "head", draining down into her stomach, several years ago, and she is functioning pretty well,shopping,etc.
Depending on your Dr.'s advice, this may not be feasible for you. Wilbur should not be expected to "live" a life as a drugged Zombie. I am so sorry this has happened, but I know you will do the BEST for Wilbur. Sometimes their best, is our worst.GOD will help you to make the right decision:pray::pray::pray: [MENTION=5605]Momma2Bullies[/MENTION]
 

Lalaloopsie

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Oh, I’m so sorry for your and your baby suffering ! This is ugly condition, and yes, it can be idiopathic, that means no known cause. There is treatment - surgical, they make a connection between ventricle of brain and peritoneal cavity ( to say simple, they make a duct for cerebrospinal liquid to go from brain to the abdominal cavity). Results are very good.
But I’m not sure where this surgery is available in your state and how much it will cost. You probably need a University clinic and you need to check CSF-draining shunt system surgery for dogs.

What concerns suffering, dogs feel different, unless they are in pain, they don’t suffer from being sedated or anything. So, I would look at his level of pain - if there is no pain, he will enjoy even sedated and drugged life.
 

Dollys Owner

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So sorry you are going through all this. I'm not sure I would put my dog through a shunt operation - about 50 % of shunts fail within 2 years due to blockages or infections. But definitely worth getting a neurosurgery consult to see the options, eg. there is another surgery done in humans where they make a small hole in brain to let fluid drain out called endoscopic third ventriculostomy .
 

2BullyMama

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Re: ADULT ONSET HYDROCEPHALUS

Sending you to s of healing prayers and positive thoughts... i have no experience but send you all the virtual support I can


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OP
Momma2Bullies

Momma2Bullies

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Thank you everyone - I will keep you posted on this situation. I know that when I see my neurologist on wednesday, we will be able to discuss all of the options and if/how this is manageable. Today (Saturday) Wilbur is stable, but I am worried he is in pain. He's not as active as usual by a long shot, and stops short for a second if one of his legs slips or he tries to bound up the stairs (like he normally would). We're just trying to keep him calm and comfortable. My neurologist says we should see some improvement re dopiness soon....
:heart:
 

ddnene

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One of our puppies from Bella's litter was diagnosed w/hydrocephalus... Wellie. He was the runt of the litter, and had problems from the get-go... we tried medication, and we discussed putting in a shunt. He was only a few months old at the time, and he would of never survived the surgery. It got to the point where he was going blind, unable to eat or walk by himself... it was a heartbreaking situation so we ended up putting him to sleep.

I have never heard of adult onset, so it will be interesting to see what your neurologist has to say. I know they have made advances over the years to help dogs and humans w/this condition. I'm so sorry that you have to go thru this, but we are here for you... and support whatever decisions you have to make. Please keep us posted!!!
 
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Momma2Bullies

Momma2Bullies

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Adult Onset Hydrocephalus UPDATED

Hi all - I have an update on Wilbur's hydrocephalus.

We met with the neurologist as well as my own vet (and I am so grateful to have such a great team!). Neuro was very pleased with Wilbur's progress, he didn't exhibit any of the pain responses that he did a week ago. This would indicate that the medications are working to decrease his CSF. Neuro also explained and went over the CT images of his brain, and how fluid-filled the ventricles in his brain were. The good news that Wilbur is not an "extreme" case, where the fluid has broken through brain tissue, but it was enough to reach a point of immense pressure and pain. Wilbur will always have this and the goal now is to get to a manageable point with as little medication as possible. Question remains as to what caused the high level of lymphocytes in his blood; all we can say for sure is that lymphoma is not present in his spinal fluid or his brain. It is possible he has something going on somewhere else in his body but there is really no way to fish around for that. It is also possible that the stress of his hydrocephalus caused a spike in lymphocytes - we are retesting his blood to see.

Since yesterday both dogs happened to be due for vaccines, my vet only vaccinated Layla. I was very happy that she is in agreement with the risks while he is on prednisolone, so we're holding off on Wilbur's vaccinations until the dose is a little lower.

Neuro has decreased Wilbur's prednisolone by 5mg, so he is now on 25mg a day for 4 weeks. Ideally we will continue to decrease until he is hopefully on less than 1mg/kg which lessens the risks of all the steroid side effect horrors but at the same time keeps his hydrocephalus under control.

I flat-out asked the neurologist if this will be fatal; can Wilbur die from this, can it be managed and is it even fair to try and manage it.
The neurologist told me that no - this will not be fatal in Wilbur's case, we caught it early enough. It can absolutely can be managed with medication, and the worst would be cognitive dysfunction, as in Wilbur may not be the smartest kid in class (well he never was). Shunt surgery is not something we discussed; I want to manage this medically and not surgically, and it seems that this is entirely appropriate in Wilbur's case.

The take-home from this is that if you see something wrong with your baby, don't wait!!!! It was a huge expense to have the CT, MRI and Spinal Tap but it was a critical diagnostic tool and in this case saved his life.

Wilbur is back to himself at this point, he is doing really well apart from seeming a little more snoozy. I have noticed he pants more too. He is extremely thirsty, and peeing A LOT (this would be very hard to manage if I wasn't at home as much as I am able to be). My vet told me this is due to the steroid, and to also expect Wilbur to get very round in his belly. So that isn't good but I am hoping that things will get better as the dose gets tapered off....naturally, with the steroids his skin allergies are completely cleared up. I just hope I don't have to face calcinosis cutis down the road.

So right now (Oct 2017), Wilbur is on:
25mg presnidolone (similar to prednisone but a different metabolic product, perhaps less taxing on the liver)
20mg of Omeprazole (this is Prilosec in humans, an antacid but here it serves to decrease production of CSF)
120mg phenobarbital

Diagnosis: his hydrocephalus is congenital, and he probably had it all his life and it just reached a critical point (he is 6 1/2 now). His seizures that commenced when he was 5 are most certainly caused by this fluid build up. The fluid collects in the interior ventricles of the brain and pushes the brain tissue out towards the skull, causing immense pressure and pain. His is not caused by a physical blockage preventing reabsorption, he produces too much and/or it is not reabsorbed normally. It is not caused by an infection or virus, and not by an injury or tumour (the other reasons for adult-onset hydrocephalus).

Prognosis: quite good, with medication. Will need medication the rest of his life.

Thank you all for your support! I will keep this updated so that if anyone else has to go through this, there is some info...xo:heartsign:
 

Manydogs

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[MENTION=5605]Momma2Bullies[/MENTION] This is very good news! So happy that things are looking better for Wilbur(and you!) and he can be managed and have a life! Best wishes to you all and thank you for the good update!
 

2BullyMama

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Re: Adult Onset Hydrocephalus UPDATED

Hi all - I have an update on Wilbur's hydrocephalus.

We met with the neurologist as well as my own vet (and I am so grateful to have such a great team!). Neuro was very pleased with Wilbur's progress, he didn't exhibit any of the pain responses that he did a week ago. This would indicate that the medications are working to decrease his CSF. Neuro also explained and went over the CT images of his brain, and how fluid-filled the ventricles in his brain were. The good news that Wilbur is not an "extreme" case, where the fluid has broken through brain tissue, but it was enough to reach a point of immense pressure and pain. Wilbur will always have this and the goal now is to get to a manageable point with as little medication as possible. Question remains as to what caused the high level of lymphocytes in his blood; all we can say for sure is that lymphoma is not present in his spinal fluid or his brain. It is possible he has something going on somewhere else in his body but there is really no way to fish around for that. It is also possible that the stress of his hydrocephalus caused a spike in lymphocytes - we are retesting his blood to see.

Since yesterday both dogs happened to be due for vaccines, my vet only vaccinated Layla. I was very happy that she is in agreement with the risks while he is on prednisolone, so we're holding off on Wilbur's vaccinations until the dose is a little lower.

Neuro has decreased Wilbur's prednisolone by 5mg, so he is now on 25mg a day for 4 weeks. Ideally we will continue to decrease until he is hopefully on less than 1mg/kg which lessens the risks of all the steroid side effect horrors but at the same time keeps his hydrocephalus under control.

I flat-out asked the neurologist if this will be fatal; can Wilbur die from this, can it be managed and is it even fair to try and manage it.
The neurologist told me that no - this will not be fatal in Wilbur's case, we caught it early enough. It can absolutely can be managed with medication, and the worst would be cognitive dysfunction, as in Wilbur may not be the smartest kid in class (well he never was). Shunt surgery is not something we discussed; I want to manage this medically and not surgically, and it seems that this is entirely appropriate in Wilbur's case.

The take-home from this is that if you see something wrong with your baby, don't wait!!!! It was a huge expense to have the CT, MRI and Spinal Tap but it was a critical diagnostic tool and in this case saved his life.

Wilbur is back to himself at this point, he is doing really well apart from seeming a little more snoozy. I have noticed he pants more too. He is extremely thirsty, and peeing A LOT (this would be very hard to manage if I wasn't at home as much as I am able to be). My vet told me this is due to the steroid, and to also expect Wilbur to get very round in his belly. So that isn't good but I am hoping that things will get better as the dose gets tapered off....naturally, with the steroids his skin allergies are completely cleared up. I just hope I don't have to face calcinosis cutis down the road.

So right now (Oct 2017), Wilbur is on:
25mg presnidolone (similar to prednisone but a different metabolic product, perhaps less taxing on the liver)
20mg of Omeprazole (this is Prilosec in humans, an antacid but here it serves to decrease production of CSF)
120mg phenobarbital

Diagnosis: his hydrocephalus is congenital, and he probably had it all his life and it just reached a critical point (he is 6 1/2 now). His seizures that commenced when he was 5 are most certainly caused by this fluid build up. The fluid collects in the interior ventricles of the brain and pushes the brain tissue out towards the skull, causing immense pressure and pain. His is not caused by a physical blockage preventing reabsorption, he produces too much and/or it is not reabsorbed normally. It is not caused by an infection or virus, and not by an injury or tumour (the other reasons for adult-onset hydrocephalus).

Prognosis: quite good, with medication. Will need medication the rest of his life.

Thank you all for your support! I will keep this updated so that if anyone else has to go through this, there is some info...xo:heartsign:


Fantastic update! thanks so much for all this great info.... and I am over joyed in hearing this is something you caught early and will be able to manage.

sending lots of hugs and positive thoughts to Sir Wilbur!
 

Hankster

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thanks so much for the update!!! Great news, and great information!!! You are one heck of parent/ or parents ;) to do all this for your pup. Keep in touch with this, and hopfully in the next few weeks, the tapering off of meds will be a success as well :)
 
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Momma2Bullies

Momma2Bullies

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Thanks guys!!! :) the support and positivity is awesome here - there are many people in my life who tell me to just "put the poor dog down". I know you all understand that these are our children, and I won't just give up on him because it becomes inconvenient. He is happy and back to himself and I have hope that this can be successfully managed!

Just a little addition: Blood work results show that his white cell count has decreased a little bit. It was at 30 (x10 000 000 000), which is very high (normal would be 16-17). He is now at 25. We hope it will continue to decrease.
After a week on the steroids his liver values are already up, meaning his liver is working hard. I hate this. My vet said this could indicate he is sensitive to prednisolone. So, I really hope he can get to a low dose. I guess I can also take this as a sign it is working well for him in terms of draining the fluid.
He is insanely thirsty - he is drinking so much and he is so full but its almost OCD how much he drinks!!!! My vet said that if this continues for the next two weeks, we will call the neurologist to bump up the recall visit and see if we can decrease the dose sooner rather than later.

That's all for now! xo
 

2BullyMama

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Thanks guys!!! :) the support and positivity is awesome here - there are many people in my life who tell me to just "put the poor dog down". I know you all understand that these are our children, and I won't just give up on him because it becomes inconvenient. He is happy and back to himself and I have hope that this can be successfully managed!

Just a little addition: Blood work results show that his white cell count has decreased a little bit. It was at 30 (x10 000 000 000), which is very high (normal would be 16-17). He is now at 25. We hope it will continue to decrease.
After a week on the steroids his liver values are already up, meaning his liver is working hard. I hate this. My vet said this could indicate he is sensitive to prednisolone. So, I really hope he can get to a low dose. I guess I can also take this as a sign it is working well for him in terms of draining the fluid.
He is insanely thirsty - he is drinking so much and he is so full but its almost OCD how much he drinks!!!! My vet said that if this continues for the next two weeks, we will call the neurologist to bump up the recall visit and see if we can decrease the dose sooner rather than later.

That's all for now! xo

Great to see his WB counts are lowering.... thirst is definitely because of the steroids- known side effects


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Momma2Bullies

Momma2Bullies

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Hi everyone,
I thought I’d give an update on Wilbur’s situation over the past month. His thirst and urination are insane - I am up every hour for him to get water and go outside. No one is getting any rest. He's also crazy hungry, wanting his breakfast by 5 am. That part has been tough. He is suffering from bad diarrhea and gas too, maybe a combination of all the water as well as the pred, I don’t know. I had to be out of town right after Thanksgiving (in Canada) and of course while I was away Wilby had a cluster of seizures, his first in over a year. So that was very upsetting. He is subdued and lethargic, and kind of clumsy (falling up the stairs or mid-judging where the couch is, things like that.
I had a blood work up on him this week, and unfortunately his white cells (specifically lymphocytes) are super high, higher than the initial test. His liver function is off the charts too. As a result, I had an abdominal ultrasound to see if there were any masses or issues and my vet said nothing appeared abnormal. Today I had a recheck with the neurologist and I reported all of this to him. He lowered Wilbur’s pred to 20mg a day, Prilosec and phenobarbital stay the same. I am hoping that the lower dose of pred will help lower his liver values, but at the same time I don’t want the hydrocephalus to get out of control. The white blood cell count is a big concern. We are having a cancer panel done and flow cytometry to help pinpoint the cause. It is beyond the range of what you’d expect from a stress response. Wilbur also has a milk thistle extract and another drug to help support his liver function.

Not a very good time here, it is starting to look like the hydrocephalus is just the tip of the iceberg...
the bloodtests have to be sent to California so it will be a while before I get any results. Right now I am babying him and loving him and so scared. His sister Layla is always by his side. My sweet funny boy. He doesn’t seem to be in pain, and he does have spurts of being himself now and then. But he’s sick, I know he’s so so sick.

I’ll keep you posted, thanks for reading.
 

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