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dizzy
23rd June 2009, 08:06 PM
Hello friends,
It is a while since I posted about our beautiful Ruby so I thought you may like an update on her....

Ruby is 2 next month and was diagnosed with SM last November we are under Mr Deutschland and Mr Skerritt at Chestergates Referral Hospital. Ruby is on Furesimide 1/2 tab morning and night and that is all and she is doing really well. For those of you that don't know Ruby's history she presented last November with a few seconds 'absence' where she looked frightened and lay down looking scared - it passed as quick as it came but I just knew it wasn't right. Our emergency vet immediately suspected SM and our regular vet immediately referred Ruby to Mr Skerritt for a scan. Thank God for Pet Plan !

Ruby was diagnosed as having a syrinx which leaked CSF and a chiari malformation where her brain bulged minutely but sufficient to cause concern. Ruby has been considered for surgery but has been identified as not requiring it. Mr S and Mr D held a joint consultation with Ruby a few months ago ( blessed to have such expertise ) and decided Ruby is doing brilliantly on her furesimide. They believe Ruby is fortunate to have been caught very young and unless proved otherwise believe she may just maintain but not deteriorate.

Ruby has never whimpered/screamed although I know pain can present in many ways. Her only tell tale signs are the Air Guitar scratching which she doesn't do unless you touch a certain side of her neck ( you can literally pin point the spot - Mr D did ! ) and just sometimes she rubs her head on carpet. Ruby's episodes of air guitar scratching have reduced quite noticibly over the last few months. (Although she does have periodic peaks!)

Ruby sports a new harness that sits low on her neck and therefore no longer 'bunny hops' on walks! ( or very rarely I should say!)

We live in the present and take comfort from Mr S/Mr D prognosis but also know that they do not have a crystal ball.

Ruby is a joy - a true gift from God.

I write this to encourage others that all diagnosis of SM don't necessarily equate to panic and doom. (Although I did panic at first and sought re-assurance from many sources)

Dawn

mollysmum
23rd June 2009, 08:42 PM
Hi Dawn
Lovely to hear Ruby is doing so well. We to are being treat at Chestergates ( Molly). we recently had a scan which did show a definate "bulge" in Molly's brain ( To quote the Neuro). Her behaviour and problems have worstened over the last few months to a degree where it is awful to watch her. She yelps out in pain for no reason and air scratches whilst running up and down our outside wall. Chestergates want to rule out that she has no other problems which may be causing this ( She currently has a skin infection and so they want a ref to Dermatologist), before they definately diagnose her with SM.
Your post has given me a little ray of hope . . if she has SM then maybe all is not lost.
Thankyou
Mollysmum

Love my Cavaliers
23rd June 2009, 08:44 PM
I know that the immediate response to a diagnosis of SM is panic and the fear that your dog may not live much longer. It's hard to remember that SM presents in so many different ways and each dog reacts differently to the disorder. Like you said Dawn, it's good to be reminded that a diagnosis is not all gloom and doom and that like Ruby, some dogs do brilliantly with medical and pharmaceutical management rather than surgery. I love hearing about SM dogs who are doing as well as Ruby.

It's also important not to judge other people's decisions about how they choose to treat their dogs. There are so many different factors that go into a treatment decision and we are not privy to most of the inner workings of people's lives that lead them to make the decisions they do. In my opinion, we are here to support each other and help each other, not to criticize someone else's decision. However, I also think we can and should offer suggestions. The way people supported each other on this board was the reason I joined. I discovered CavTalk a year ago when I was waiting to hear how Riley did during her decompression surgery. I loved the comfort that the members gave each other as well as the problem solving ability of the board in helping you think things through.

So like you Dawn, I live in the present with Riley and love her all I can. I'm glad to hear Ruby is doing so well.

renate
23rd June 2009, 09:20 PM
thank you, dawn, for sharing this!
i am glad that your beautiful girl is doing all right!!:hug:

i am new here, and from other cavalier fora not used to discussing sm very openly and objectively.

one of my greatest fears is that one of my girls should be diagnosed with sm, having heard and read mainly the horror tales about this truly awful condition!

it is very good to read that a dog actually can live with this, and with the proper expertise and treatment have a good and happy life.

dizzy
22nd October 2009, 07:12 PM
Just a quick update on our beautiful Ruby - She has settled really well on 3 x Gaberpentin a day. Her scratching has noticibly reduced and now I would say 'she occasionally' scratches each day and for a few seconds only. ( She has still never yelped in audible pain) Walking is usually bunny hop free and playtime is 'real vigorous fun'. She has matured into the most loving, loyal and fun little dog with a huge personality. Simply put - We adore her and thank God every day for her :p

Love my Cavaliers
22nd October 2009, 07:39 PM
So glad to hear that Ruby is being maintained so well on meds and that she seems happy and spunky. It's always a joy to read some good news on the SM/MVD forum.

*Pauline*
22nd October 2009, 07:58 PM
It's great to hear how well Ruby is doing. xx

Charlifarley
22nd October 2009, 08:49 PM
I'm delighted to read how well Ruby is doing. She is one of the lucky SM dogs. (If there is such a thing!).
My little lad still bunny hops quite a lot while walking, also taking Gabapentin, 3x100mg a day too. What kind of harness are you using? I am using a Puppia, and have tried a different type of step in harness, but neither made a difference to him.
Charli

Karen and Ruby
23rd October 2009, 12:23 AM
Well done to you and Ruby. So pleased that she is doing well and hope she stays that way for many years to come!!:jmp2:

Karen

brome
24th October 2009, 06:05 PM
Hi Dawn,
I'm so happy to hear that Ruby is doing so well. I understand how you feel. My cavalier was diagnosed about 2 weeks with sm. It was so frightening. I was an emotional wreck. It scared me so bad because I didn't want her to suffer and I was so afraid I was going to loose her. I had to have a talk with myself. I knew if I was around her tearing up and thinking about how bad it could be, it was sending negative signals to her. For her and myself I had to pull myself together. I did and she is doing very well. She was in a state of not being able to walk, eat, drink or even hold her little head up. Now she's on her meds and with exercise she has learned to balance herself in order to stand and walk and go to the bathroom, she's eating and drinking on her own and her sprits are incredibly better. Before the day I took her to the vet she had very little signs and at this point she still does not appear to be in much pain, all thou I can tell some days she doesn't feel as perky, like maybe things are going on in her body that is bothering her.
And you are so right about living in the present. Live for today and give your baby as much love as you can because our time with them is so short. I feel Sophia and I are so lucky because this condition could be much worse. I just hope and pray that she can continues to live a full and happy life without much pain.
It is wonderful news to hear that Ruby is doing so well. Keep up the good workcl*p
Sophia's mommy
http://i550.photobucket.com/albums/ii407/freebird_bz/Spaniels/Sophia%20growning%20up/thl_285e34a2039be1d75a12945859c1a13.jpg

Kate H
24th October 2009, 09:38 PM
In our efforts to get across the seriousness of SM, and the need to take action against it, we can give the impression that it is always an acutely painful and debilitating disease - which happily isn't true for many Cavaliers as long as they have careful supervision and good medication. My Oliver is 8, he was diagnosed over 2 years ago (I had him scanned on the basis of SM positive forebears, not any obvious symptoms) and has just begun to show his first symptom of favouring his right front leg when he gets tired. It's not really lameness because it hurts, more a caution at putting his full weight on it because his syrinx has damaged the nerves and destroyed the reflexes. A complication is that he also has spondylosis in three vertebrae just below his syrinx; he had 6 weeks of rest for that in the summer but since then we have been building up his exercise, his muscle tone has improved and he can now happily manage 45 minutes of trotting around the park off-lead. He is on minimal doses of Gabapentin and Frusemide and to all intents and purposes leads a normal and happy life (just pops in his buggy if we have to walk too far, as I don't have a car and he and Aled come everywhere with me). Yes, sadly there are many horror stories, but I think we need to be careful not to give the impression that SM is an inevitable death sentence.

Kate, Oliver and Aled

Wagtails
27th October 2009, 08:07 PM
In our efforts to get across the seriousness of SM, and the need to take action against it, we can give the impression that it is always an acutely painful and debilitating disease - which happily isn't true for many Cavaliers as long as they have careful supervision and good medication. Yes, sadly there are many horror stories, but I think we need to be careful not to give the impression that SM is an inevitable death sentence.

Well said, Kate, and I can echo your message from my own experience with Megan, my ruby, who will soon be 11 years old and was first diagnosed with SM when she was 9. Since then we have all adapted to her pill regime and her walking limits, but she still leads a full life, eats well, sleeps through and generally seems stable.

It's very worrying to read reports of some vets still being ignorant of the signs and symptoms, but it's equally worrying when owners seem to be given the impression that the future for their beloved pet is inevitably gloomy. Far from it, as I'm sure other members of this Board will also confirm.

Good luck to everyone with an SM Cavalier - there IS definitely hope after diagnosis, so nil desperandum must be the "take home" message! :thmbsup:

dizzy
26th October 2010, 11:44 AM
2 years on from Ruby's diagnosis of SM at Chestergates I thought I would let you know where we are up to with her. We have been so blessed to have Martin Deutschland's expertise and care for our little Ruby. She has been ticking along on Frusemide 10mg x2 daily and Gaberpentin 100mg x3 daily. Ruby tolerates these meds very well. There is no doubt that the physical signs of deterioration are present but she still enjoys a very happy and spoiled life!!! Ruby's only visible sign of SM is her hyper-sensitivity to touching the left side of her neck - she starts to kick when you do so. But, as a family we avoid doing this, and just cuddle her on the other side! She enjoys long walks and often these are bunny hop free. There is no doubt that when she is nervous or excited she 'air scratches for England' but head rubbing remains very infrequent. Ruby never vocalises her pain ( I know that doesn't mean she doesn't feel it though )
Yesterday RUby had her 2nd MRI - almost exactly 2 years apart from her first one. Martin was, as always, a gem. He took the time to explain that -

Ruby's syrinx has increased in size, although there remains only one syrinx. It is still more pronounced on her left side.

There is no change in the size of her herniated brain.

After much discussion we have decided to give Pregabelin a months trial. (Just paid 145 for 86 25mg caps - Thank God for PetPlan!)
Martin will see her on 22 Nov to discuss whether we go ahead with surgery (he suggests inserting a shunt) or if Pregabelin is helping we will reassess.

I would be grateful to hear of any experience people my have had in using Pregabelin or of their beautiful cav having been through surgery involving shunting.

Love to all

Dawn x

Nicki
26th October 2010, 11:52 AM
That's so good to hear that Ruby is doing well.

I think Pauline is using Pregablin, also Tania, so I'm sure both will write with their experiences, and I believe Karlin is about to use it too...

I think if you obtain a prescription you should be able to obtain it cheaper than that from a normal chemist - just keep your receipt and submit it with your insurance claim.


It's always hard to hear that there is some progression, but generally I guess we have to expect that - but it sounds like Ruby is having a good quality of life.

I wasn't aware that Chestergates were still doing the shunt surgeries - do you know why they are considering that option rather than decompression?

Let us know how she does on the Pregablin.

dizzy
26th October 2010, 11:59 AM
Hi Nicki,

I got the prescription made up at my local pharmacy and they took 30.00 off the price - I know the Pharmacist! They should have been 175.00 ! ( I read that Pauline thinks Boots is cheapest so I may well go there in future)
Martin did mention de-compression but because of how Ruby is presenting he believed a shunt to be better? He described to me that they would 'bypass' her weak area with a shunt. Hope I've understood this correctly - I think I have, but will check in Nov.

Love Dawn x

Margaret C
26th October 2010, 02:58 PM
Martin will see her on 22 Nov to discuss whether we go ahead with surgery (he suggests inserting a shunt) or if Pregabelin is helping we will reassess.

I would be grateful to hear of any experience people my have had in using Pregabelin or of their beautiful cav having been through surgery involving shunting.

Love to all

Dawn x

I thought that it was more common to do decompression surgery now, but it is well known that a closely linebred puppy had a shunt fitted at Chestergates back in 2001.

The owner reported that he still scratched when excited, but up to a year or so ago he was said to be doing fine.

Sandrac
26th October 2010, 04:31 PM
I'm just about to move Minnie to Pregabalin as I do not like the sedative effect that 3 x 100gm of gabapentin is having on her.

Tesco's quoted me 138 for 100 x 50mg pregabalin tablets - so it is certainly worth shopping around. I just purchased 100 x 100mg gabapentin for 5.06 from Tescos.:o

Karlin
26th October 2010, 05:01 PM
Pregabalin is on patent still and will be for a few years yet whereas gabapentin is available as a generic hence the price differences. Many find pregabalin more sedative than gabapentin but all dogs are different.

I would not consider a shunt surgery these days -- almost no one is doing this any longer and even those who used to do them regularly o not seem to recommend them much any longer. Personally I would go for a second opinion on surgery before doing a shunt. A lot of them seem to stop working or need replacement and another surgery. Some do a shunt alongside decompression in more severe cases but even that is quite rare.

Just a personal opinion.

*Pauline*
26th October 2010, 06:40 PM
I can't really compare prices with you as I give 50mg caps (102 for 56) but I would think Boots would do yours a lot cheaper. Go there and ask for their price, they will happily give you a quote. Lloyds charge more.

It takes a long time with the paperwork in Boots each time. Make sure your prescription says the word *"cascade" on it or they won't give you the drug. This may be in small print and you will save the pharmacist a lot of time if you find it for them before you get there.

Boots must stamp your prescription and unless you have repeats on it, they should make you a copy and they keep the original plus give you a normal till receipt. You will need both for your insurance. My vet kindly takes these for me and sends them off for insurance with an up to date history.

*Cascade is an act that allows human drugs to be given to dogs. Your vet will know this.

It's not as complicated as it sounds, honest. Karen (and Ruby) emailed me with instructions and I was pretty worried but it wasn't too bad.

Pregabalin is wonderful, we saw results straight away. :D

*Pauline*
26th October 2010, 06:42 PM
Many find pregabalin more sedative than gabapentin but all dogs are different.

Hi Karlin, did you mean this the other way round? I ask because I have heard the opposite.

Jane P
27th October 2010, 08:54 AM
Boots are NOT the cheapest and are fairly difficult to deal with. I get my pregablin from vetpharmacy.co.uk and pay 126.27 for 84 x 50mg (1.50 per tablet). However, Sandra's quote from Tesco is by far the cheapest - I will try there next time. 25mg is a low dose - is that just twice a day? Dylan's on 50mg twice a day which seems to be the usual dose.

I found gabapentin had a sedative effect on Dylan to begin with but did not have any problems with the pregablin although it hasn't improved his symptoms at all.

I hope you see some improvement in Ruby soon.

dizzy
28th October 2010, 10:34 AM
My local vet is referring Ruby to Clare Rusbridge for a 2nd opinion before we progress with any invasive surgery. This is not a reflection on my opinion of Martin at Chestergates as he has been nothing but professional, informative and caring in all my dealings with him; it is more a case of making the best informed choice I can as Ruby's carer and Mummy ;)

Nicki
28th October 2010, 11:30 AM
I think that is very sensible, you need to be certain you are making the correct decision and this is a huge decision to have to make...

*Pauline*
28th October 2010, 12:59 PM
Hi Dawn, glad you are taking Ruby to see Clare :)

dizzy
1st November 2010, 06:04 PM
We have our appointment with Clare Rusbridge - Tuesday 16th November :wggle:

*Pauline*
1st November 2010, 11:43 PM
Oh brilliant, not long now. :)

Brian M
2nd November 2010, 11:41 AM
Hello dizzy

Firstly my kindest thoughts to you and Ruby at this horrible time and I hope the outcome of all this is nothing but good .
Living in Prenton in Cheshire with Chestergates about 10 minutes away and as I and my little girl Rosie have recently visited them with Rosie having a full Scan with Martin ,it is informative seeing other peoples opinions and ideas of Martin and Chestergates as a facility as really when any of our beloved Cavaliers become poorly and scans or advice for related illness's are required our choice of locations seems to be Stone Lion or Chestergates .So when either of these places or people may be required it is so important to oneself to know you have chosen correctly and wisely and that you have total confidence in that persons skills and that if things do not turn out that you have no recriminations or guilt that you may have picked the wrong practice irrespective of distance traveled and time taken .
My best wishes to you on your visit to see Clare .

sins
2nd November 2010, 11:44 AM
If you're contemplating any major surgical procedure,a second opinion is always valuable...whether it's a dog or a human.
Good luck with your appointment on the 16th.
Sins

Karlin
2nd November 2010, 12:32 PM
Agree with Sins -- and will add that experts differ on their beliefs and approaches and a pet owner needs to listen to the various perspectives, research as best as possible to help them ask the questions they want answered, then make a decision that seems the best to them.

There is often no 'right' answer -- much of medical care is subjective when it comes to conditions like this. I'd want a second opinion before undertaking any invasive procedure, and I'd want to hear a strong defense of doing any procedure that varies from general practice.

*Pauline*
2nd November 2010, 02:42 PM
If you're contemplating any major surgical procedure,a second opinion is always valuable...whether it's a dog or a human.
Good luck with your appointment on the 16th.
Sins

Just what I was going to post. There are different approaches to treating SM and you have to go with what feel best for your dog and you.

Brian M
2nd November 2010, 03:00 PM
Hi Pauline/Sins

Say after two opinions they were both the same how would one choose who to carry out the necessary procedure or would one go by your own instinct .:? What I am trying to ask in a very roundabout way is if say one of my girls required surgery which both Stone Lion and Chestergates could offer and it was planned surgery so no emergencies and therefore for me distance no object what advice could you offer as to how I could arrive at a decision .

sins
2nd November 2010, 03:27 PM
As long as you're dealing with a "centre of excellence", ie a well equipped hospital with experienced vets I would always choose the one nearer.
If any post op complications developed,such as haemorrhage or infection,then you would be able to get immediate veterinary attention rather than travelling across the country at short notice.
Sins

*Pauline*
3rd November 2010, 09:19 AM
Hmm...I agree with Sinead but I did in fact travel a little further to see Clare, the RVC is nearer. My original neuro at the RVC where Dylan first went had moved on to another practice. I requested Stone Lion because Clare has a wonderful caring reputation and a passion for her work. I felt I trusted her before I met her.

dizzy
17th November 2010, 06:32 PM
Well we went to see Clare yesterday here's an account of my day .....

Up at 2.15am with Ruby - something had 'spooked' her and she wouldn't settle. Being the good mummy I that I am !!!! I cuddled her on the settee where she promptly fell asleep snoring and I remained wide awake until our 'get up time' of 4.30am arrived.

We left the house at 5am and I offered to drive as I was wide awake and knew I would be tired at the end of the day so Aidy could drive home. Fog, Fog, fog and mad HGV drivers kept us company for most of the journey! :drivecar:

Arrived at Stonelion at 10.20 (20 mins late) and saw the wonderful Clare. I love her philosophy of treating the Patient and not just the scan results. Of course - professionally she couldn't tell us not to have the shunt surgery but what she did do was explain in detail experiences she has had and the options available to us. I made it clear that I needed to be told if I was choosing an option for my benefit (avoiding the reality of Ruby's condition) or for Ruby's best interest.

It was at this point that Aidy announced he 'didn't feel well' and promptly went weak on us. Clare sprung into action whilst I just went into panic mode! Aidy has never done this before but we can only conclude that he felt tired, stuffy, hot and didn't like hearing about surgery options etc. Hmmmm I'll be keeping an eye on him. Although I have to say I did find the room hot, small and stuffy so maybe that's all it was. icon_nwunsure

Anyway, back to Rubes - Clare was satisfied that her clinical signs don't suggest that she is at the stage of needing surgery but suggested a change in medication. An increase in Pregabelin dose - from 75mg up to possible 150mg a day. Keeping on with the Frusemide and introducing Previcox 1 tab a day.

We intend to try this new medication and keep a diary of how well Ruby responds/tolerates it and I will liaise with Clare in a month or so to review.

So, no surgery yet (if at all) and well worth the visit / 2nd opinion. :thmbsup:

Coming home I decided I had better drive (due to Aidy incident) and found myself in Knightsbridge (following TomTom !) It hadn't brought us through London coming but for some reason brought us that way home - 8.00 congestion fee !!! :swear:

On M1 just before Toddington Sevices as I was overtaking a lorry the acceleration disappeared on my car - very,very scary. Luckily Aidy sorted us out (Overheated Coils or something like that?!) and I continued driving...... :slp:

Home at 8pm and straight to bed to find my lovely Mum had been and left a tray with a flask of Hot Chocolate and biscuits on my bed side table - perfect!:hug:

Ruby slept like a baby and so far is tolerating the Previcox.

All in all a very eventful day!!

I know Clare reads these boards so, if you're reading this can I just Thank You sincerely for your expertise, gentleness with Ruby, quick action with Aidy, taking the time to explain things so well, understanding of our concerns, honesty, integrity when talking about other practices and most of all your devotion to the well being of our beautiful Cavaliers. :flwr:

Thanks also to Margaret C as always for her interest in Ruby, advice and bravery in speaking out for our 4 legged friend even though she has suffered back lash for doing so. cavtiny

Thanks to Karlin, Pauline and all of you for being interested, caring and above all such a wonderful support network for times when the going gets tough.:thnx:

Love Dawn x

*Pauline*
17th November 2010, 10:02 PM
You are very welcome Dawn :hug:

Dylan is on 50mg Pregabalin twice a day. Is 50mg three times a day the maximum dose?

Margaret C
18th November 2010, 12:21 AM
Hello Dawn,

I was thinking about you.
So pleased you got there and back safely, although the whole day obviously had some very hair raising moments.

I hope Aidy's funny turn proves to be just a one-off.

You really did have a driving marathon. Didn't you do well?
We just don't know what we are capable of achieving until circumstances force us into coping with the near impossible.

It is strange about the SatNavs. My one has taken me a variety of routes to Wimbledon. I'm never sure which bridge I will end up crossing.

Fingers crossed for Ruby.

anniemac
18th November 2010, 12:28 AM
I am so so so glad you got a second opinion. Not saying anything about either one, but if you feel in your gut not right, a second opinion seemed to help.

It seems after much worry, You feel better so I'm glad the appointment went well, no car accidents and got a good night. I really hope the medication helps.

I hope Ruby feels better

Sent from my Droid using Tapatalk

dizzy
20th November 2010, 05:41 PM
So far, so good. A definite improvement just by adding Previcox - very little air

scratching on waking after a long sleep or when excited by door bell !! Very happy in

herself - playful and inviting play with her toys :wggle:.

Going up to 50mg dose 2 x day from tomorrow.


Aidy went to get her Pregabelin earlier from our usual chemist and was charged 4.90

for 60 x 50mg I rang them on his return to explain we owed them a lot of money!

The Phamacist informed me that they had triple checked the price as they knew they

are very costly but it is a central computer and she couldn't over-ride the price !

Hoping for continued good progress for our little lady :d*g:

Dawn x