Louie, acromegaly, hypophysectomy, off the juice

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Rebecca Thomas

Rebecca Thomas

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Louie had his hypophysectomy to remove his pituitary and it's offending tumour at the Royal Veterinary College in the UK last Monday 6/2. It was a traumatic few days for us humans but he, it appears, was less traumatized. After a couple of days in intensive care he was moved to the ward and came home yesterday. No drama, no infections, fingers crossed no complications. His BG has been steadily dropping over the week and for the last 3 days he has been OTJ. I have to keep testing him morning and night for a couple of weeks and then just once a day for another couple as a precaution but the vets say it is highly unlikely that the diabetes will return unless it is caused by something else later on in life. He's no longer demanding food and apart from looking a bit of a mess, having more skin than fur and being a bit quiet he's back to his old self. I can't express my gratitude to Stijn Niessen and his team at the Royal Veterinary College in London enough. The care and expertise they have provided for him has been amazing and his speedy recovery is testament to that.
 
Very happy to see this good news, Rebecca. I don't think this was available when my Tom was dx with acro back in 2007 or I would have been there like a shot.
Fingers and paws crossed that Louie stays in great shape and that you will both now be much happier bunnies!

Diana
 
@Diana&Tom No you're right the first one was done in 2012 and even though they've only done just over 50 in that time the progress they've made is enormous. Little things like Louie had a wireless gucose monitor fitted on his side from the moment he came out of surgery so they could see his levels all the time and adjust things accordingly. Now all we need is to spread the word that 1 in 4 diabetic cats have acro and with the aid of just an IGF-1 blood test they can identify them and treat earlier and more successfully. Louie was the earliest diagnosis they had seen and operated on and he was discharged only a week after with no complications and should make a full recovery. The more surgeries they do, the better they will get at, the more people they train up and therefore in the future it could become more accessible. The research they are doing has identified the gene responsible and the tumours they remove are now being sent to be examined and researched by 'human' doctors at the University of London to help treat humans with acromegaly. It's amazing how far things have come and how quickly. Also the surgery has cost us £4087 which is not that much more than a years supply of pasireotide, when you factor in if the cat is insured the standard yearly limit is £4000, yes Louie needs hormone pills for the rest of his life but he won't need insulin, testing equipment etc, it's not entirely out of reach in the UK.
 
It's amazing what has been achieved in a relatively short time. I think you're right, more vets need educating about acro - I had to ask my vet several times if this was a possibility (because I'd done my research) and she said no! I don't think she'd even heard of it. Very sad. I had to really force the issue in the end, to get the test done. But then vets could do with more education on all sorts of things. Unless they undertake further study and go on to specialise in a particular area, they are only ever "GPs" and those of us who take it upon ourselves to learn can teach most vets a thing or two.
 
To be fair to them it's only been in the last 12 months they've realised how much more common it is than they thought. When I took Louie to see my own vet last month he admitted that he knew cats could get it but thought it was extremely rare. He's really interested in Louie's case and I think it's eductaed him enormously. I'd printed out all Louie's notes from the RVC up until that point and he was really pleased because although they'd been uploaded to the computer he could take the printed out one's away with him and read up on it so maybe there is hope.
 
What an amazing story! Rebecca, I am so happy for you and Louie. :joyful::joyful: Thank you so much for the update. It's great that he could go home after one week instead of two. And that he's gone OTJ.

I really do hope they can train more vets and spread the knowledge of how to do the surgery to other parts of the world. It's a 9.5 hour flight, not something I could even consider with a cat. And when Neko got her diagnosis in 2012, it was not an option anyway. FWIW, a years supply of pasireotide costs even more in North America. The future is looking brighter though.

Your vet was like mine - trained that acromegaly was something you'd never see and had to go over 10 units in dose, which we never did. After working with me she diagnosed another acrocat in her practice. And Neko's acupuncture vet realized a cat that adopted her at her house was likely acro.
 
That is an excellent story Rebecca. I remember when he was diagnosed and you were still considering this. I hope your kitty stays as a poster-kitty for all acro cats to get hypophys.... Sounds like the surgery has been well practiced at that hospital. I am very happy for you and Louie!!! YAY!!!:):)
 
Sorry it's been so long, I haven't been getting the alerts and have been so busy I haven't checked back. Louie is doing really well, you wouldn't know he'd had anything done apart from his shaved patches.
Bronx's dad said:
That is great news! So the total cost would be £8087 without insurance? How long was the procedure?
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Yes that's about right, the surgery was about 4 hours (he was under anaesthetic for around 5 hours as they do a CT scan afterwards). It involved 8 vets and 8 vet nurses including anaesthetist etc. They are subsidised as they are a registered charity and the op is classed as research still.

He went for his post op check this Monday, his IGF-1 has dropped to 15!!!!! and he has lost 2lbs in weight as his organs, paws etc have all shrunk back to normal. He's been treated like a rock star by both our own vets and the RVC, he's getting very used to having his photo taken and travelling round, he now sits on the passenger seat next to me and looks out the window when I'm driving lol. Everyone is really pleased with his progress and sometimes I wish I could tell them something that isn't right with as to every question I have to answer 'he's great'. I have realised how long he has been ill and interestingly the diabetes was the last thing that happened and not the first as is often thought. His stridor (breathing noises) started at least 12 months ago but we never knew what they were, they've completely gone now. The stridor is the sound of his enlarged epiglottis at the back of his throat vibrating when he breathed, it sounds like snoring but he's awake.

He's on hydrocortisone and levothyroxine sodium tablets and will be for the rest of his life. They are both to regulate his hormones as he doesn't have a pituitary gland to do that anymore. He's also on desmopressin which works as a antidiuretic hormone for patients with cranial diabetes but this is temporary until his body gets used to life without diabetes and we're already cutting it down gradually so he should be off it in about a month.

As far as his diabetes is concerned, I tested him for daily for a couple of weeks after he came home as instructed and his numbers were between 3.5 and 5.5 (65 and 80) so he is definitely OTJ.

A note to those of you in the US - the RVC - Stijn and Patrick are speaking at the New York State Veterinary Conference in April so if you could drop massive hints to your vets that they might like to go and learn something we can continue spreading the word, more details can be found here http://www.nysvc.org/

I really hope that Louie will leave a legacy of how to spot acro early, how to test for it and how to treat it because the early diagnosis and fast treatment has meant he has a long, happy and normal life ahead of him.
 
Thank you for the update. I love the IGF-1 of 15. :cool: And that he's returning back to normal size. It's interesting how much of the changes are reversible. After radiation therapy Neko's few changes went away, but it took longer. It's unfortunate we don't have experienced vets able to do hypophysectomy with the same track record on this continent.

I have also heard that people see acro signs up to two years before the diabetes. With Neko, I saw a sign (in retrospect) 6 months before her diabetes diagnosis.

Wishing Louie continued good health. It's OK to be boring and doing great. :)
 
Wow, just plain wow! That is amazing news. What a great success story. Normally I would ask how Louis is doing, but it sounds like he is now a mostly normal cat. Thanks for posting the update. And I'm really happy to hear another Acro cat has been successfully treated.:D
 
Wow. I'm sure it's a very challenging procedure necessitating incredible skill, but the results are undeniable. I wish it were available here in the States. It could benefit a lot of kitties.
 
Yes, I have heard the procedure available at Washington State U. In a paper by the folks at RVC, they say the success rate of the procedure is in proportion to the experience of the surgeons. Which is a catch 22 for vets wanting to offer the surgery. I have heard of a couple of cats having the surgery at WSU, but neither did as well as Louie.
 
Hi - new here so be gentle!

Can't add anything to the original poster's excellent write up of the wonderful work done by the RVC, but thought I might offer a small ray of hope to anyone who finds themselves with an acromegalic cat, and lives in SW England.

My cat, Charlie, was diagnosed as diabetic in January, and after several months chasing his rising glucose levels with increasing doses of insulin, he was confirmed as acromegalic in May. We'd heard of the work done at the RVC, but the logistics of getting Charlie to London were problematic. In researching alternative providers of feline hypophysectomies I was advised that Bristol University's Langford Hospital would undertake the procedure and, having had superb results when they treated our elderly hyperthyroidal girl cat last year I would have been happy to speak to them about Charlie. In the end however I had a response from an even closer referral hospital - Cave Veterinary Specialists in Somerset (http://cave-vet-specialists.co.uk/) and spoke there to Dr Nicolas Granger. Nicolas is an experienced neurosurgeon with experience of pituitary surgery in cats. He arrived at Cave last year (from Langford interestingly...) and, although he had never performed a hypophysectomy whilst working at Cave, foresaw no problems. He was at pains to point out the risks of surgical intervention and was modest in explaining that even successful surgery is only one part of a possible cure as quality medical care of the cat post-operatively is an essential component of a good outcome.

Charlie had his surgery on 26th June and is now doing well. His diabetes hasn't gone away, but he's currently on 1.5IU once daily instead of 7.5IU twice a day. It looks like he's heading for diabetic remission and we have our fingers crossed that will be the case. I really can't speak highly enough of Nicolas, and his colleague Emma, who between them (and of course the rest of the team at Cave) have given us hope that Charlie has been cured of his acromegaly.
 
That is great news, and thanks for the updated information Daniel. I hope it is also helpful to someone in SW England.
 
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