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ppotterfield
7th August 2009, 07:34 PM
Thought it might be time to share with all of you that our Buddy a/k/a BudBud was diagnosed with SM in June. He is four years old.

In September 2007 Bud-Bud was diagnosed with PSOM as part of Dr. Lynette Cole's study at Ohio State University and had a Myringotomy to remove the mucous plugs from his middle ears. At that time, based on the CT Scan, there were no syrinxes so no SM diagnosis was made. We knew the CT Scan could not rule out SM, but since his symptoms had been mild, and could have been signs of either PSOM or SM, we decided to just see how he did after the ear flushing. For about 18 months he did really well, was essentially back to being our happy BudBud, enjoying his games of fetch and make-shift agility, always ready for a walk, sneaking in and sleeping with his Clumber sister (Hadley), begging for food with pleading dark brown eyes. Then, about six months ago I noticed that the little, isolated yelps had come back, not often, but more than I would want to hear. He was doing more face/ear rubbing than I would consider normal and he just seemed sad. At the same time we had a new Clumber puppy (Katy) in the house and at first I thought BudBud was just stressed from getting used to Katy. But it soon became clear that as much as I wanted that to be the cause (because I knew she would eventually win him over), it was in fact something more -- a recurrence of the PSOM or the appearance of SM, or possibly both.

I had stayed in touch with Dr. Cole so I emailed her. She agreed we needed to get some tests done and together we decided that rather than do another CT Scan which might just tell us about PSOM, we would go ahead and do an MRI, which could tell us about PSOM and about SM. The MRI was done at OSU in June and yes, BudBud's middle ears were again plugged with mucous -- the PSOM had come back. In addition, three syrinxes were seen and we now also had a diagnosis of SM. Not what I would call the best case scenario.

In July, BudBud had a second Myringotomy and a consult with a neurologist about the SM. On clinical examination the neurologist found mild cervical pain, proprioceptive deficits in all four limb without ataxia and slightly hyperactive patellar reflexes bilaterally. Post-Myringotomy, he was put on Prednisone, 10 mg. twice a day for two week, then 10 mg. every other day for a week and finally 5 mg. every other day for a week. We are just about to finish with the Prednisone.

BudBud is much better since the Myringotomy. He is smiling more often -- like he just feels better. In almost four weeks I have seen only two face/ear rubbing episodes and in the same time period have heard only two or three of his little yelps. We now need to figure out whether it was removing the mucous from the middle ear (and relieving any associated pressure or pain) that has caused him to feel better or whether it was Prednisone or a combination of the two. The neurologist suggested Prednisone long-term for the SM, based largely on the diagnosis of proprioceptive deficits, if I understand correctly. I have questioned keeping him on a steroid without trying other options first, including, for example, Prilosec and Gabapentin (although he may not need a chronic pain medication yet). (It is so easy to say a dog is not in pain, but how do we know? So many dogs are stoic!).

Yesterday we were at OSU for a check-up and a discussion of what to do next. For now, once BudBud completes the last of the stepped-down doses of Prednisone, we will not give him anything and simply watch and see whether the sad demeanor, the face/ear rubbing and/or the little yelps come back towards the level they were before the Myringotomy (in which case they would appear to be more related to the SM and the Prednisone was apparently working) or whether he continues to do much better (in which case they would appear to be more related to the PSOM and improved post-surgery and he may not need to take anything right now or perhaps just Prilosec). We will then revisit the treatment options.

I have a few questions for Karlin and others who might know or lead me to the answers. I will put those in a separate post.

Not sure if my story is helpful to anyone else, but it does help me to tell it -- and I know you all understand. I am worried about the future but for now we are very lucky -- BudBud's symptoms are minimal, I learned enough from this forum and my own reading to follow-up nevertheless, we have resources to address his health issues and we still have our BudBud to love and make us smile every day. Some folks are not so blessed.

Thanks to those of you with whom I have shared private emails or posts for being there and thanks to all of you for listening and sharing information, your worries and concerns and your love of your dogs and of this breed which I hope it is not too late to save.

Cathy T
7th August 2009, 08:13 PM
Thanks for sharing your story Phyllis. As I was reading I kept nodding my head "uh huh, uh huh" I got so much of what you were saying about his behavior and knowing he wasn't feeling quite right. It's so hard to not know what is going on. Is the PSOM causing the symptoms? Will the Myringotomy cure him of symptoms? Did the pred help? It's all so baffling. Buddy is lucky he has you to care for him and love him and do what needs to be done. Please keep us posted on how he does. I'll be thinking about him.

chloe92us
7th August 2009, 10:01 PM
Phyllis- I'm so sorry to hear about BudBud. I am praying that after the steroid trial is over, he will be back to his normal self again and the pain will not return. SM is NOT a guarantee of a life of pain. Hopefully his symptoms are from the PSOM and not the SM. Luckily he has you and his two Clumber buddies (my other loves) to get him through this. Best wishes and big hugs to you all. :hug:Keep up updated.

Trisha

jld
8th August 2009, 04:14 AM
Just curious, what symptoms of PSOM did Buddy have when he was first diagnosed ? Thank you for sharing your story. Buddy is very lucky you love him so much, and are willing to do whatever it takes to give him a full and happy life. Judy

Margaret C
8th August 2009, 03:47 PM
Thought it might be time to share with all of you that our Buddy a/k/a BudBud was diagnosed with SM in June. He is four years old.


Not sure if my story is helpful to anyone else, but it does help me to tell it -- and I know you all understand. I am worried about the future but for now we are very lucky -- BudBud's symptoms are minimal, I learned enough from this forum and my own reading to follow-up nevertheless, we have resources to address his health issues and we still have our BudBud to love and make us smile every day. Some folks are not so blessed.



I think that every time an owner posts about their SM dog it is immeasurably helpful.

There are still a lot of owners that don't know about the many and varied symptoms, and breeders who prefer to believe that it is not really a problem.

To all the owners of SM dogs reading this, it is really helpful if you tell your cavalier's breeder about the diagnosis. If they are unhelpful, or don't answer, send a registered letter.

Karen and Ruby
8th August 2009, 05:22 PM
Margaret

Do you mean just send a registered letter to the breeder? Do you think it would make a difference as Ruby's breeder wasnt much interested when I told her?

Karen

Nicki
8th August 2009, 05:36 PM
Thank you for sharing your story Phyllis, and I'm so sorry you are going through this.

I've answered your other thread - sorry I saw that one first, so answered without knowing the full story.


It is always helpful to share our stories - it helps us to know that there are others out there going through similar things, and sometimes putting it down in writing helps to clarify things in our minds.


I really hope that perhaps it was the PSOM that was causing Buddy's symptoms - I think you are wise to have a trial period to see exactly what is happening, this also gives you time to research and discover what to do if that is not the case.

It is a problem knowing how much pain they are living with - or perhaps more to the point, how they are coping with that level of pain. I think we have to accept that we may not be able to control pain completely, but like many humans, dogs can still have a good quality of life even with a level of pain. It's learning to recognise when they are not coping. {Teddy has times when he does not seem to be coping - other times he is chasing around the garden like a lunatic and it would feel like "murder" to consider letting him go. A very hard decision - at present we are on a day to day situation.}

Also dogs learn to live with their pain - again like humans do, you learn distraction techniques.

Weather conditions and as you say, stress in the home, can also have an effect.

Perhaps give him a few weeks and see how things go.

If you are still seeing symptoms, I would definitely consider one of the drugs to reduce CSF production. I haven't seem great results with Frusemide but know that some dogs do well on it.


Your love for Buddy shines through - he is blessed to have such a caring guardian who only wants the best for him.

please keep us posted.

Margaret C
8th August 2009, 06:11 PM
Margaret

Do you mean just send a registered letter to the breeder? Do you think it would make a difference as Ruby's breeder wasnt much interested when I told her?

Karen

Yes.
It is a very positive action that indicates you think the matter is serious
and you expect them to take notice of what you are telling them.

Some breeders do seem very reluctant to discuss health issues in cavaliers they have bred.
They are especially reluctant to put anything in writing, although they may talk to owners of sick puppies on the phone.
They make sure that they say & do nothing that will admit to any liability, and it is not unknown for them to deny that they have been told there is a problem.

I know of kennels that have produced puppies with inherited conditions and the owners flatly deny they have even heard of the condition
Sending a registered letter can be used as proof they were informed, very useful if action is ever contemplated by the puppy owner, or by a welfare organisation, or a breed club.

ppotterfield
10th August 2009, 03:04 AM
what symptoms of PSOM did Buddy have when he was first diagnosed ? Thank you for sharing your story


Buddy was first diagnosed with PSOM almost two years ago and had a Myringotomy at that time. To be frank, he had very few symptoms that would be associated with PSOM -- he let out little single yelps which appeared to be related to movement of the head area, he never liked being approached from the front, he seemed to have lost some of his always happy demeanor. I applied for him to be in the PSOM study at OSU (Ohio State University) not really thinking he had PSOM but because it is reasonably close (three hours) and he would be seen by a number of board-certified specialists -- a neurologist, a cardiologist and a dermatogist -- would have good basic medical exam, a CT Scan, etc. I suspected at the time that he might have SM and knew that the CT Scan would not be definitive but thought that it and the whole experience might tell me something. Well, it turned out he did have PSOM and they did not see anything at that time which confirmed SM. He was so much better have the first Myringotomy that I hoped that was it. When about six months ago he started having the little yelps again and now also had some face/ear rubbing, I hoped we might have just a recurrence of the PSOM but elected to get the MRI instead of the CT Scan we had before so we could eliminate (I hoped) concern about SM. Well, we had both.

It is so hard to describe but I think if you are in tune with your dogs you have an extra sense and you just know when something is not right --- just as many people with children do. You then start watching and observing even more carefully and start looking for answers. It is so difficult with both PSOM and SM because most of the "symptoms" are variations on normal behaviour. We walk a fine line between overreacting and worrying to death that something is wrong with our perfectly healthy dogs on the one hand and dismissing as normal dog behaviour real symptoms of disease on the other. For me it was the little yelps which while at first very intermittant seemed to be out of proportion to any knock or bump or other activity or movement that made me follow-up -- that and the loss of his constantly smiling face.

I know Lynette Cole at OSU is still accepting Cavaliers into her PSOM study (which is looking for ways to make the diagnosis without the expense of a CT Scan or MRI). If you are reasonably close and think your Cavalier may have PSOM, consider applying for the study. After the initial exam on day one (which costs a couple hundred dollars), the rest is free -- including the CT Scan and if needed, the Myringotomy.

tara
10th August 2009, 03:29 AM
Thank you for sharing your story about Buddy. I'm so sorry you and he are going through this, but I'm also so relieved that he is with you. It sounds as if you're doing all that is humanly possible to help him and I believe our animals sense this. He surely loves you very much and is very grateful for the care and compassion he's shown every day.

heather r
10th August 2009, 08:36 PM
I also thank you for your telling Buddy's story. I wish him and you the best .

Having had a golden with severe allergies requiring a lot of meds, vet visits ,shots etc. I know that it is difficult to see your best pal in discomfort or pain.

Heather R