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View Full Version : Ruby to be MRI'd on tuesday



tupup
21st April 2009, 09:36 PM
After all your great advice about finding a new vet i asked every doggie person i know locally which vet they use, then rang these vets for a chat. the one i chose seemed to know the most about SM i.e he said put her on a harness straight away.Also he says he is a friend of DR Clare Rushbridge & has been to seminars etc most importantly to me, at least, was when i asked him if he thought she could be in pain, he said- without a doubt, its extremely painful for the dogs. we got fitted in to see him this morning by which time the old vet had forwarded our records. he spoke to the point after listening to her list of symptoms & my saying i need to help her asap.He said she needs a neurologist& mri.
He checked on my flea regime, checked her ears then her heart which he says is good(hurrah!)& that he wouldnt expect that in a 5yr old cavalier. we left with him saying he would arrange the referral & be in touch in next few days. Well within 15mins a lady rung me from a clinic & we've got an appointment booked for tues, im thrilled its so quick.
In my surprise at the speed i forgot to ask where this place is(duh!) but she's sending details anyway. the vet did offer wimbledon i think it was but as i dont drive i had to ask for the nearest place for my friends benefit. so where ever we are going we've to be there at 9am tues. my friends have already booked this day off work for us,i managed to rearrange my work ok too.
Sooo..i need to know if there are any questions in particular i need to be asking on tues? anything you would advise me to take with us & for the journey, ive done a list of the obvious things like water& her blankie that i hope to leave with her for when she wakes up but what else please
many thanks in advance for any help
Gx

HollyDolly
21st April 2009, 10:30 PM
tupup

I would pm Margaret C if I were you and listen to what she has to say about what to ask etc she is a mine of information and lovely as well and am sure she will not mind.

Will be thinking of you next Tuesday.

Nanette

Brian M
21st April 2009, 10:31 PM
hi

best wishes next week:-)

linderbelle
22nd April 2009, 12:05 AM
thinking of you. I'll see if I still have my list of questions or I'll come up with some that I asked. I know you will get lots of response on this.

Charlifarley
23rd April 2009, 11:19 AM
Sorry if I am creating work here for someone, but would it be possible for a list of typical questions to be posted up, which would be very helpful for whenever one of us has to see a neurologist?
I am sure we all have the same basic questions, but there must be other questions that I probably haven't even thought of yet, or wouldn't know to ask and knowing me, won't think of until after the visit is over :rolleyes:
It would probably save time in the long run too.:cffee:

Thanks, Charli

linderbelle
24th April 2009, 04:58 PM
Charli:

I'm sorry I haven't responded and today I finally looked for my sheet on questions and unfortunately I think its a goner. I did find my list of questions though in regard to having the surgery--another words before her surgery. My first advice is don't go alone. Take somebody with you. I knew Abbey had it in my heart but its still a blow and it helps to have another set of ears etc. Hopefully maybe the mri will be negative and you can take whoever is with you out for a drink and celebration. :-)

Of course you will be told the severity of it etc.

What are my options?
What do you recommend? Why do you recommend this treatment?
Size and location of syrinx--neurologist would go over that for sure so not really a question
One thing we asked because we had really opted for surgery because of her severity and age and we knew she had it in our hearts and took some time to get in for her mri and almost knew what we would do in regards to surgery depending on what he said.
Abbey had scoliosis and head tilt and in regards to surgery we asked "do you think we caught this in time"--meaning neurological damage etc.

This is a start for you and I'm sure the above is already on your list--I just didn't want you to be left hanging. I still be thinking before your appt.

Hugs.

linderbelle
24th April 2009, 05:08 PM
Oh and another thing we did is take a tape recorder and recorded what he said so we could listen to it later. I never even asked him but he saw it etc. and didn't say anything. I should have asked though. Just an idea if you have one.

ilsamom
24th April 2009, 05:20 PM
Research your medications and ask for them - we had to fight for omeprazole - our neurologist recommended lasex and I did not want a 4 year old on a diarretic for life!!!

If you understand the treatments and medications and what you think is best for your dog you can ask for what you want. If your neurologist disagrees ask why not and listen. They may be right or they may be shoving you on a drug with terrible long term effects. Tell them, if that is how you feel, that you do not want x medications and list your reasons. Ask for alternatives and be prepared to suggest them yourself. At the end of the day, your neurologist is the expert but it is your dog. They think about treating SM but you need to think of your dog's health for life.

If you are considering surgery ask the doctor's opinion about that as well.
Make sure they are able to be flexible, It has taken us almost 5 months to find a medication combo that makes Ilsa feel well. We've changed medications and dosages several times and also changed neurologists to one who actually listened to me. Both the doctor and I had to compromise - for example, I wanted her off cortisone and lasix at this age and I eventually had to agree to a small dosage but it does work.

We have been through 6 months of hell and I feel we are finally coming out of it, but as we have mostly decided to have the surgery in the fall, I am afraid that the nightmare will return.

I'd also like to thank Linda for so generously sharing her journey with SM surgery - it has helped me so much in understanding how difficult it is - as I expected - and also showing how quickly that passes and the happy ending. It has given me so much hope!

If you have any questions or need to talk please PM or e-mail me (if you e-mail put CT so I don't delete) - I know how difficult this is!

Jen and Ilsa

meljoy
25th April 2009, 06:22 PM
Hi,
Just something else to think about. When Leo was MRI's several weeks ago they removed his micro chip!!:shock: They called me when he was under the anesthetic to ask permission to do this! I thought they would naturally assume he had a chip but they didnt.

You might want to mention it if Ruby is chipped.

Good luck

Mel

Charlifarley
25th April 2009, 07:41 PM
Best of luck on Tuesday Tupup,let us know how you got on.
I'm waiting for an appointment for my two, so thank you Linda, Jen and Mel for the words of wisdom, especially about bringing a friend and also about the micro chips, both practical pieces of advice that I probably wouldn't have even thought of.
I have read so much here about SM, I feel I know lots, but I think I know more about the symptoms than the actual treatment, so I will have a good search around to get an understanding of whats what, better to be informed and armed from the start.
Charli.

Love my Cavaliers
25th April 2009, 07:56 PM
Two of my dogs have been MRI'd for suspected SM. Oz has the malformation but no syrinxes yet, while Riley has SM and had surgery last June. Oz bounced back from it like he had never been sedated and was a wild man right away (He was 11 months old). Riley however, had problems recovering from the anesthesia and needed to stay overnight so they could monitor her. I think she is definitely the exception rather than the rule though.

If she is diagnosed with SM, I would just be sure you are clear on your options. With Riley I was told by two different neurology groups that she needed surgery and was not a candidate for long-term medical management. See if you can find out how large the syrinxes are - I think how wide they are is the more important measurement and how much of the spinal column is affected. Just be sure you understand the dosing of any medications and side effects. Also, talk about what kind of effects you should see from medication even if she is a candidate for surgery. That way, you will have some idea if the medication is doing what it should be doing. Both Jen and Linda had some great suggestions for questions also. Regarding the microchip - my dog's neurologist said that the MRI can sometimes disrupt the microchip and I should have it read by the vet's office afterwards. Both dog's chips worked just fine.

This is not a journey any of us want to take, but unfortunately too many of us have been down this road. I'm sorry you have this worry. If you get an SM diagnosis, use the support we can all give you. Believe me, it's helped me through some rough patches.

linderbelle
26th April 2009, 02:49 PM
I just thought of something else--you mentioned bringing water. Call your clinic and ask when the cutoff time is for water. Remember they get put under for mri so no food and water. For us it was midnight. I'm thinking of you alot and I mean alot. Please post on tuesday if you're able but let me tell you I'm praying alot that it isn't so I'm really hoping you post it was negative. Hugs.

ilsamom
26th April 2009, 04:09 PM
Linda is right, I brought a bottle of water and a bowl for Ilsa but she wasn't allowed to drink for 6 hours after I picked her up anyway. Even when she was allowed to eat and drink she was so wiped from the anesthesia that she didn't want to that evening. I had to force water down her mouth.

Jen and Ilsa

tupup
26th April 2009, 08:16 PM
Thank you all for your advice & to Margaret C for taking the time to talk to me this week. it really means ALOT to me to know that youre thinking of & rooting for us, its helped when ive nearly lost the plot a couple of times this week-having been told by a few people(aquaintances)to just have her PTS:-X, ive also been told she's looking old & tired:(
i need to collate all the info onto a list as ive scraps of paper everywhere. No food from 10pm mond eve but water only after this. Charlifarley im sorry youre waiting to get your two scanned, you are in my thoughts. i will certainly have to say she's chipped-thanks for that. At the moment i think we need to leave home at approx 5.30am to be there for 9, theyve said i can possibly collect her at 4/5pm then home, any hiccups & i'l book into a hotel for the night but thats not going to happen! I will most definitely try to post when we get in but it may be a quicky with more to follow. apart from feeling sick for days i just want to get it over with & have a plan & pain meds. she yelped again this morn when i lifted her & yest i actually saw her whole right front leg trembling-this hasnt happened before.
LMCavaliers it is indeed a journey none of us want to take& too many are having to, thank goodness for ct & the great people on it

meljoy
27th April 2009, 06:18 PM
Tupup,

Just wanted to say Im thinking of you and your little one.
Good luck tomorrow....please keep us uptodate. I know from experience how horrible this is and the sickening feeling I had returns when I think what you are going through.

I pray you get the same news we did:hug:

Mel

tupup
28th April 2009, 03:07 PM
UPDATE-well it was as expected, Ruby's now diagnosed with SM/Chiari. we didnt get an mri scan as he diagnosed on seeing her in action, so to speak, as when we went in she was air scratching a lot, my friends tried to stop her as they always do(bless) but i had to tell them to leave her cos thats what we were there for.
im going to try to be very careful what i say next (karlin plse delete as you see fit) & i wont mention his name on here but i thought he was tosh IMHO. as you all know i went armed with Q's-17 of them, i felt patronised & lectured at, ie; what do you feed her? so i listed what she has in a day, he said who told you to give her all that, thats far too much,however he didnt ask what size portions of! Says she's overweight, i tried to explain she's always been skinny until steroids, but no, cavaliers are always overweight.she is 7.4kgs today, up from 6.8,around 15lbs normally.
he wanted to do a CT scan today for any future surgery purposes, but then said surgery was way down the line so this didnt get done either.
he said this condition doesnt usually bother them or progress:bang::bang:, we got a full history lesson in all things medical. said her lethargy, not wanting to walk was down to having steroid jab 2weeks ago& that pain killers dont work on this& theres no treatment that works.
he started then on my notes-oh i see youve been on the internet, its all rubbish,nothing but anecdotes.i got an endless lecture on this he even suggested i read "snake oil & other remedys"
By this time i had nearly walked out 3times but my friends would have been mortified but they were anyway when i started, there they were nodding& agreeing all nice,& then i just interupted in the end & said ok what about pain meds? he says if youve come here for pain meds youve come to the wrong place. i was polite-just-but i wasnt leaving without any! this went on& on so the upshot is-she's now back on the diuretics she was on 3weeks ago that didnt work,but at a lesser dose& Metacam once daily. ive to ring him in 3 weeks to update him. if i want an mri he'll send us to chestergates. im afraid id resorted to Dr.Clare Rushbridges dna sample scheme etc that id be interested in, by this point. it did seem to make a difference to his attitude.
I was in there 1 1/2hours so cant complain of being rushed.
im sorry this is so long but i needed to vent a little to others who know about these things as the silence in the car on the way back was deafening for the 1st 2 hours!
any opinions anyone please?

Karlin
28th April 2009, 03:42 PM
:eek::eek::eek:

Appalling. Will you PM me who this was?

I'd go to Chestergates directly and simply arrange a vet or neurologist appointment. They will be much kinder. Or PM me for other options. :mad:

That is simply beyond belief.

AT
28th April 2009, 03:56 PM
I wonder if that was the vet we saw years ago for one of our dogs epilepsy, he hated cavaliers , infact hated anything that wasn't gsd shaped.
it was a complete waste of time

tupup
28th April 2009, 04:01 PM
thanks Karlin ive pm'd you.
AT could be cos as you know we dont live that far from you-will pm you, as dont want to publicly post the name!

ilsamom
28th April 2009, 04:12 PM
I sympathize,our neurologist was much the same we are in Paris and were lucky to find a specialist but still. Did he prescribe and medications such as gabapentin (or neurontin it's the same) omeprazole or a cortisone? I'd switch and find a new neurologist especially if you have not been prescribed any meds. It does help when seeing a new neurologist to have done the MRI and to have a copy with you.

That said, I've seen 2 neurologists and had phone consults with 2 more (having sent a copy of the MRI and medical records) and all do recommend attempting to control symptoms with medications before considering surgery. There are many great successes with the surgery but it is invasive and dangerous with a long recovery period. It is of course your decision but if it were my dog I'd like to start medication asap, weather or not I was planning on the surgery, if only to make her more comfortable.

I do understand the silence, they did an MRI for Ilsa the day I brought her in, (and I still remember the day November 13) and even though I expected the answer I almost fainted and did scream in his office and cried for a week. People think it's better to know but for me it was hell.

If you'd like to talk PM me,
Jen and Ilsa

Karlin
28th April 2009, 04:17 PM
Thanks. I imagine your vets will be a bit shocked -- they really sounded supportive and on top of things.

I wouldn't say you necessarily need an MRI unless you are considering surgery -- but certainly having the MRI to consider surgery sooner rather than later would be the norm. You would generally want to know if you are looking at discomfort from say a small syrinx, or lots of syrninxes that could cause serious pain sessions, or what... :neutral:

I'd mainly want to talk to someone who would take seriously the idea of pain management. Adding metacam would be the start, but I'm surprised he was stating that the condition doesn't progress (goodness! He must not believe any of the published scientific papers or the experience of neurologists who have seen hundreds of dogs now with the condition!) -- especially in a dog so symtpomatic he could make a diagnosis on clinical appearance alone without an MRI! :eek: -- and also that he doesn't seem to think any of those symptoms indicate pain. :(

Brian M
28th April 2009, 04:25 PM
Karlin

I suggested if needed Mr Skerritt at Cranmore /Chestergates ,what would you think
Brian

AT
28th April 2009, 04:27 PM
yes the same vet we saw. our dog had staticus epilpeticus ( one fit after another) he said we could just leave him having fits for hours & he'd be fine.

He was the first person who ever mentioned sm to us

Wear refferals in bishop auckland have an mri scanner, perhaps you'd have more luck there

linderbelle
28th April 2009, 05:03 PM
Oh tupup I am so deeply sorry. You know this disease is bad enough but it sucks big time that the list of neurologists is so small. Not alot of them if you know what I mean. I know you're getting messages of other good neurologists to see and of course Karlin knows. I am so sorry again. I would have blown my top so you did better than I would have.

Margaret C
28th April 2009, 05:07 PM
I'd mainly want to talk to someone who would take seriously the idea of pain management. Adding metacam would be the start, but I'm surprised he was stating that the condition doesn't progress (goodness! He must not believe any of the published scientific papers or the experience of neurologists who have seen hundreds of dogs now with the condition!) -- especially in a dog so symtpomatic he could make a diagnosis on clinical appearance alone without an MRI! :eek: -- and also that he doesn't seem to think any of those symptoms indicate pain. :(


I am so sorry you did not get more help and support from the neurologist you saw. It is extremely worrying that there are specialists around that still know so little about the condition, and about how to manage the pain & discomfort these little dogs endure.

Thank goodness you had done your homework, so you at least got some pain relief for her.

I know it is difficult when you need to rely on other people to transport you, but Chestergate are extremely experienced when it comes to diagnosing & treating SM.

Thinking of you,

Margaret C

Love my Cavaliers
28th April 2009, 05:32 PM
What an excruciating experience to go through! Even though he diagnosed her with SM, he showed no empathy whatsoever. AS karlin said, his behavior is simply beyond belief. There are good neurologists out there, but it does take time to research them and I know you are limited to where you can go because of transportation issues. I feel very fortunate that I live 5 minutes from Riley's neurologist. He calls me back the same day I call him with any concerns. When he couldn't get me one day (he called really late and I was already in a plane on my way to my parents house), he called the next day without me having to make a return call. Because he's so close, I have been taking Riley in probably every other month as she has lingering problems with her vestibular system and we're adjusting and trying new meds.

This is a disease that in order to cope better you need an empathetic doctor. One who knows that she is your baby and won't mind your 17 questions or if you cry in front of him. One who is responsive to your needs and is concerned for the welfare of your dog and making sure she is living pain-free, as well as monitoring the relief of or progression of symptoms. It almost sounded like he thought you were trying to turn your dog into a drug addict!! Keep trying - you will find a good doctor. We're here for you.

Karlin
28th April 2009, 05:45 PM
It turns out this person is not actually a neurologist; he has a different qualification. That is not necessarily a problem -- for example Dr Marino at LIVS is a surgeon, not a neurologist. But your experience reveals a shocking level of ignorance about SM.

meljoy
28th April 2009, 05:52 PM
Oh Tupup,

Im so sorry. Im sitting here enraged at what you've been through.:mad:
Thank goodness your little one has you to fight for her, at least you got her pain meds.
I hope she improves with these.

Mel:lotsaluv:

Karlin
28th April 2009, 06:07 PM
Now that you have an SM diagnosis, I'd go talk to your new vets with the info on treatment from Clare Rusbridge as they may be happy to work with that.

My vets do this.

tupup
30th April 2009, 10:21 PM
Thank you all for your support & valid opinions, i find it somewhat shocking that he isnt even a neurologist despite my vet saying you need to see a neuro & get an mriicon_nwunsure
i spoke to the vet today, he had already had a letter from this man. i asked if i could see the vet from now on regards her meds & used the distance as the reason for not wanting to go there again. he said to go see him in a few weeks but yes he could see to any pain meds etc, and for me to go ahead with the duiretics b.cos if the man thought that was best etc, him being so good at his job!!
she has had 3days on metacam now& today only on fusamide, so we'll see. i wont wait too long if i dont think these are having an effect
on a better note her treatment for her dry eye is working wonderfully, ive never seen her with such shiny beautiful eyes. we go back to ripon to see the fab eye consultant may 13th:D

Karlin
4th May 2009, 08:55 PM
There are people in other specialities, familiar with doing MRIs, who are very good at diagnosing and working with clients with SM dogs. So the problem isn't really that he isn't a neurologist.

It is more that he seemed very underinformed on the condition and quite insensitive to the client.