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Thread: Macroadenomas

  1. #1
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    Default Macroadenomas

    My most important point here is that the longer you wait to diagnose a macroadenoma, the less likely you are to be to be able to treat it. My goal here is to encourage you to get a full diagnosis before you go too far. Cushing's and macro's can be managed if you treat the right problem at the right time.

    When Macy was sick I tried so hard to track down information about Cushings and macroadenomas but this tumor causes so much stress to us as owners I just couldn't read through everything to find the pertinent info. I finally found there is a place on this site with some macroadenoma information . Here's the link....

    http://www.k9cushings.com/forum/showthread.php?t=229

    Vets will tell you that a pituitary tumor isn't a macroadenoma until it reaches 1 cm but one of the doctors I've read recently said that a dog's tumor should be considered a macroadenoma when it can be seen on ct scan or mri or when it's 8mm. That's very important because a dog's head is so much smaller than a human's head. In the past a dog's tumor wasn't considered macro until it reached the size of a human macroadenoma - 1cm. They suspect that up to 75% of dogs with a tumor that can be see on ct or mri will end up with macroadenoma's so early screening once the dog is diagnosed with Cushing's is incredibly important. Based on the size of Macy's macroadenoma it was already a macroadenoma when she was diagnosed with cushings! It sounds to me as though the reason they're not caught is that the dogs normally get this later in life and the symptoms are mistaken for dementia among other things. I was told Macy was developing dementia even though she was just 7 years old at the time.

    Another pet owner with a dog who had Dr. Bruyette's surgery said Dr. Bruyette recommends an mri as soon as a dog is diagnosed with Cushing's in order to check the size of the tumor. Apparently early mri's are also done in some areas in Europe. Doing an early mri would have saved me a lot of money and I really wish it had been done for Macy. I can't help thinking that we would have done radiation immediately and Macy might still be with us. I also would not have spent so much money on vet visits and unnecessary tests and medication while we chased after the symptoms nobody seemed to recognize.

    One of the first threads I finally found was by Gina about her dog LucyGoo. I wish I'd found them sooner as they shared some of the same weird symptoms and would have pointed me in a direction. I'm learning there are symptoms are common to macroadenomas.

    Macy experienced the following......
    - diagnosis with Cushing's took almost a year and symptoms included panting, extreme water consumption, inappropriate urination, hair loss, dull coat, mental dullness, increased appetite
    - even before the Cushing's diagnosis she stopped eating favorite foods
    - UTI's
    - choleseterol went up
    - white count went off

    After Cushing's diagnosis but before macroadenoma diagnosis.....
    - trilostane only worked *well* when the dose was kept low.
    - she lost the ability to perform previously well executed tasks
    - personality changed in barely perceptible ways
    - developed muscle twitching
    - repeated vaginitis
    - lost interest in things she loved
    - developed the tendency to arch her back "like a cat" as Gina described Lucy did.
    - stopped lifting her head
    - paced (or circled as some call it) relentlessly
    - periodic foot drag
    - intermittent neck involvement
    - became anorexic
    - trilostane/Vetoryl eventually caused vomiting
    - displayed weakness in all four legs

    When Macy became anorexic 9 months after being diagnosed with and treated for Cushing's I finally stopped giving it to her. That's when her general practice vet and I decided it was time to have an mri done to determine whether the stiffness we were seeing was her spine or caused by her illness. We also decided at that time to forego the full spine mri and look only at her neck and brain in order to see the tumor. I had finally reached the point where I had to see the tumor and know how big it was.

    The first feedback I got about the tumor was that is was so small they could barely see it. A few weeks later my husband insisted on seeing the full report so I picked it up at the vet's office and was horrified. It clearly said Macy had a large tumor. The short story is that Macy's tumor was so large it was referred to as "giant". One option was radiation which would reduce the tumor by 30% and give us maybe another year with her. At a 30% reduction it would still have been a macroadenoma which means she would still feel sick. Eventually we stumbled on the surgical option.

    At first I thought they did the same surgery on Lucygoo & Macy but Lucygoo's surgery was VITOM while Macy's surgery was done by the veterinarian from Holland who goes in through the roof of the mouth. While Lucy survived Macy only survived the surgery. She was allowed to return home too soon and the stress of that was too much for her and she died the day she came home.

    Macy's surgery was Tuesday, she was released to wards on Thursday and released from the hospital Friday. Friday was the first time I'd spent any significant time with her and it was absolutely horrible. Her stress level was thru the roof. I'd never seen her walk before and as I recall she had a once sided shuffle indicating to me that she'd had a stroke but I thought I'd get time at home to see the real Macy. She didn't live long enough. We were sent home with her for a drive of several hours. She was so stressed by the time we got home she never recovered.

    I've spoken to the vets about allowing owners to spend as many hours as possible with the dogs IN THE HOSPITAL to see what they're dealing with and learn how to cope after such huge surgeries. What's normal???? Also, it's very feasible to skype (or something) so that the vets can see what's going on at home at 10pm when you call them. We should have done that. Finally, Macy should not have been released to me on Friday. She just was not ready. At best I should have stayed near the hospital with her rather than bringing her home but hindsight is 20/20. I was not familiar with her new stress reaction to life. I was not able to comfort her. She barely knew I existed. I didn't realize how little she ate in the hospital. She did not have a normal appetite at all.

    The surgery that was done to Macy caused a very raspy throat. I don't know if VITOM surgery does the same. I'd love to know how long most dogs who have VITOM surgery are hospitalized after surgery. I do know that in comparing notes with Gina she definitely said Lucy was in the hospital a lot longer than Macy so the price tag on the surgery had to be quite a bit higher than the $9k we were billed. Then again, with all of Lucy's hospitalization she also survived.

    At one point I really wanted this surgery to work but now I know it's more important for owners to understand early diagnosis is key! I also want owners to be very aware of the symptoms of the tumor and not put off an mri. A small tumor is much easier to remove than a large one and an mri to confirm a problem is a lot less expensive than treating for a wide variety of symptoms.

    At this point I won't be returning to the the k9 Cushings group very often as it's still emotionally very draining for me and this post covers most of what I have to offer. I do hope other's with macro dogs will join in and provide information about the symptoms their dog showed. It might help someone else.

    Kathy
    Last edited by ktzndgs; 11-15-2011 at 06:20 PM. Reason: clarity and accuracy

  2. #2
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    Default Re: Macroadenomas

    Hello there

    My 5 year old staffie x was diagnsed with a macroadenoma in December last year. He did not have any signs of cushings and the 3 vets he is under the care of now (normal vets, spinal vets and oncology vets) all believe he hasn't got cushings.

    In September last year my mum who doesn't see him that often noticed him often sitting and starign off into space. Her 11 year old arthritic dog often seemed more energetic too.

    When I got back the staring became more apparent and he seemed to become very lethargic and loose his zest for life. He also started to have a problem climbing the stairs. On walks he would often stop and refuse to walk and want to take the shortest route home although he was always keen to go out. He also stopped playing with my other dog, they used to wrestle for hours. He had been slightly dog aggressive before (ok if left alone or with sensible dogs) but he became very good with other dogs, which improved after hsi treatment.

    I took him to the vets; he used to be a typical bouncy nutty staffy type and they instantly could see how subdued he was - they know him as he is regularly there due to an accident he had before.

    He has brain lesions and nerve damage from a serious accident he had when he was younger so wasnt' sure how much was from that .... was always advised he may have problems in the future from these.

    He has always had a slight tremour in his back leg at times and scuffing/ weakness of paws/legs on left side for years.

    The vets said they would try the simple things first, so he had a course of painkillers, a course of vivitonin to see if it was senile related from his earlier accident, and full bloods.

    He then had x-rays of all his spine and head, which showed nothing and then MRI.

    He had the MRI in december.... his diagnosis was quite quick I think having head and spine injuries made the vets take it seriously.

    In the week before his x-rays he went down hill alot, became very weak and would lean on me and fall over if I moved, had problems standing, refused to walk and try to run home and a couple of times I found him stuck in a corner in the spare room crying.

    He went onto steriods which made an amazing difference until he could start his treatment.

    HIs adenoma was 1.5cm; also at the time the mri showed he had had a spinal mini-stroke at the same time which really wasn't helping matters either and making him be all weak and wobbly.

    They don't do surgery in this country; so radiation was the only option which they said was pallative rather than curative; would shrink the tumour rather than completely 'kill it'.

    They didn't say what it would shrink back to; and that a year is agood result after radiotherapy and 15 months is excellent (its been 8 months) ; I spoke to someone else whose dog had the same and they said dogs had lived for much longer afterwards; my regime was once a week for 5 weeks, theres was the dog went in and stayed at the vets hosptial for a shorter more intense period.

    He as been fine since, had a funny turn about 2 months ago went very drunk and wobbly couldn't stand up was staggering about, was with it ... vets recon some kind of mini stroke or mini fit.

    He is like a different dog now, very quiet and mature and he isn't nutty like he was before. He used to be ball mad but likes carrying round cuddly toys now, he never plays really with our other dog they would wrestle for hours and he used tobe slightly dog aggressive and he isn't at all now. (Alot of this started before the radiotherapy) He is still really food obsessed which he was before but is much worse now.

    On a walk there is a part of the walk where there is often dropped food and he refuses to walk in any other direction apart from where this part of the park is, if you get in the park and try to turn right he refuses to walk etc.

    We were going to mri him again when he had the turn, but he was better the next day so we are going to wait to see if happens again and then do it.

    I am in england btw.
    Last edited by EmCHammer; 08-18-2011 at 01:14 PM.

  3. #3
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    Default Re: Macroadenomas

    My boxer, Dexter, passed due to complications from a macroadenoma. I told the vet he had it after doing research and observing his symptoms. He was diagnosed with Cushing's and it was under control. Dogs with a brachycephalic head are more prone to develop this condition faster than non-brachycephalic headed dogs,,if that makes sense. Boxers, staffys, Lhasas, Bostons, Frenchies = brachycephalic. They don't have as much room in their heads due to the shape than say a shepherd, lab, dobe, etc..
    Christy

  4. #4
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    Default Re: Macroadenomas

    Hi Christy. So sorry to hear about Dexter. Can you tell us exactly what the symptoms were that you saw? I found it really difficult to get my vets to pay attention to Macy's symptoms and connect them with the macro. I hope to help other dog owners if we can help them be aware of what symptoms we all saw.

    Kathy

  5. #5
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    Default Re: Macroadenomas

    Kathy, I am sorry about the problems you had. While my dog didn't have a macro, she has a pheo (adrenal tumor) and I too had problems illustrating/conveying what was going on with my vet. I ended up videoing the episodes. That helped a great deal. Hugs, Kim

  6. #6
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    Default Re: Macroadenomas

    Video is a great idea! Thanks!

    Given the numbers of vets who saw Macy it amazes me that they never connected the dots. She had a long list of unexplained symptoms but nobody else ever looked at the items on the list as being related.

    Kathy

  7. #7
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    Default Re: Macroadenomas

    Kathy, I applaud your effort to provide information to our members about macroadenomas! Like you, I suspect that they may actually be more common than was previously thought. I know you have been interested in hearing more about my own Cushpup, Barkis, who we assume had developed a macrotumor at the time that we lost him. However, his pituitary gland was never imaged so I cannot tell you with certainty that an enlarging tumor was the cause of his problems. However, I am very willing to share our experience, regardless.

    Barkis was diagnosed with Cushing's eight years ago at the age of nine. Like many dogs, he had slowly exhibited an increasing set of symptoms over time that finally "came together" in support of a classic profile: hair loss on his haunches and sides, panting, increased thirst/urination, ravenous appetite, hindleg muscle wasting, low T-4 and elevated liver enzymes. In conjunction with the symptom profile, he was diagnosed on the basis of a "positive" ACTH and bilaterally enlarged adrenal glands on ultrasound.

    At the time of diagnosis, trilostane was just being introduced in the U.S. I had already heard about it through the original EZBoard Cushing's forum that preceded k9cushings.com. My IMS had attended international conferences in which it was being discussed, and he was interested in trying it. I jumped on board and we agreed that Barkis would be his first trilostane patient. At that time, there was still a lot of uncertainty and variation in dosing protocols. Barkis started out and also ended up on a much higher dose of trilostane than would be currently advised. But for approx. six months, he generally did well on the trilostane and we saw a great deal of improvement. In fact, we saw improvement in his thirst and hunger within just a couple of days of starting treatment. However, even on the high doses of trilostane, his post-ACTH results were never lower than around 6.0 ug/dl or so.

    I say that "generally" he did well. There was one significant exception. Even prior to beginning the trilostane, I noticed some odd tremoring episodes. Sometimes when I held him, it seemed as though he was shivering across his shoulders. It wasn't constant, just once in a great while. Within a couple of weeks after starting the trilostane, the tremoring episodes became much more frequent and much more pronounced. They happened most often when he was at rest -- laying down or even asleep. They didn't seem to bother him at all, but they totally freaked me out. A basic neurological exam didn't reveal any explanation, and we didn't get the chance to videotape them before they stopped just about as abruptly as they had begun. To this day, I do not know what caused them or whether or not they were related to his pituitary tumor.

    Everything proceeded well for a few more months. But I started noticing some subtle changes and some not-so-subtle changes. He just seemed a bit "off" and not as perky. More importantly, he started to lose his appetite. Unfortunately, these changes occured while he and I were out-of-state, away from home and staying with my mom in the aftermath of her having suffered a major heart attack. So I was very stressed and my attention was divided between the two of them. During the month that I was away from home, we stopped Barkis' trilostane and then restarted it at a lower dosage. He seemed a bit better, but I still knew that something was wrong. By the time we returned home, I knew something was VERY wrong. His ACTH was fine, however, as was all his other labwork. So my IMS suggested that an enlarging tumor might be the source of the problems, and that a CT or MRI would be required in order to know for certain. If we were to go that route, we wanted to take him to the Auburn vet school because they had a fine reputation re: radiation therapy. But that meant driving him to Alabama. While we were debating the imaging, Barkis went into a swift decline:

    Acted distant and dazed, as though "he" was leaving us;
    Was very restless;
    Started pacing endlessly through the house;
    Started relieving himself in the house and in the car;
    Lost his balance and coordination.

    The crisis came suddenly when he stopped eating and drinking entirely. We had stopped the trilostane by that time, and again his cortisol level/labwork was fine. The hardest part was that he acted thirsty and would walk over to his bowl and lower his head and try to lap up water. But his tongue just wouldn't make contact with the bowl -- it was as though he had lost the ability to understand how to coordinate his mouth. It was awful, and that was when we said, no more. Our IMS thought it still might be possible to buy him some quality time with radiation therapy. But for a variety of reasons, we decided against it. At that time, the only option was a month-long course of twelve treatments all requiring general anesthesia. We instead made the decision to release him from his tired, sick body.

    Without the imaging, I will always be left with questions. And that part is hard. Even though all his symptoms pointed in that direction, we do not know for certain that his tumor was enlarging. However, since we decided we were not going to opt for radiation therapy regardless, at the time there seemed little point in subjecting him to imaging precedures at a great expense on so many levels.

    And even now, I cannot say that I, personally, would go so far as to recommend initial CT or MRI screening for all dogs who are diagnosed with pituitary Cushing's. For an owner who would have the means and ability to pursue treatment for a macroadenoma (either radiation or surgery), then a screening image could be very helpful. But for many folks, finding the money for the basic diagnostic tests and medication is such a stretch in and of itself. And if the pet parent feels as though they would not be able to pursue treatment in the event that a macrotumor is identified, then the imaging may not be serving a useful purpose unless the dog develops symptoms that make a macrotumor seem likely and the owners decide they want confirmation of the problem. But that is just my personal opinion, and of course I am influenced by the decisions that we made about Barkis.

    Kathy, I see that I have written a book here -- probably more than you ever wanted to know! But I do want to tell you that my heart resonates with you over your loss of Macy. And I think you are doing her a grand honor by wanting to help other dogs and parents who may be facing a macrotumor. In this way, you are continuing to celebrate her spirit and her bravery ~ today and everyday.

    Marianne

  8. #8
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    Default Re: Macroadenomas

    Kathy and Marianne, Thank you so much for posting this.

    That pretty much describes what we went through with Roxee. The lack of muscle control in her hind legs, it was as if she knew there was something wrong. She would use her nose to try to lift her hind legs. She lost her sight, her hearing, and in the end she could not find her water or food although they were put right under her nose. Hand feeding became the only way we could sustain her.

    Roxee was on Trilostane and was well controlled symptom wise. (Appetite, thirst, and her hair was growing back )

    Without the CT scan, we also will never know for sure but all the vets we have seen pretty much all agreed that it was neuro related and most probably due to her pit based cushings. It started about a year earlier when a vet discovered she has lost feeling and control of a part of her mouth. We knew she was tired of fighting the fight, and the weekly vet visits.... In the end we had to make that decision. I do hope someday soon that pituitary tumor removal will become a readily available safe and viable option.
    John (Roxee & Rozee's Dad)

  9. #9
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    Default Re: Macroadenomas

    Hi Marianne.

    Thanks for posting. It sounds like you guys really went thru a lot before the final decision to release Barkis from his pain. How I wish none of them ever had to experience that.

    I appreciate all you posted. I think outlining your experience the way you did will be very helpful to others who read it. I just hope we can help other dogs early in the disease.

    Were the tremor episodes you saw confined to a limb or did they involve his torso as well? Macy developed leg tremors and I think I recall Gina saying Lucy also had tremors. I discussed that with the vets but they didn't relate them to the tumor or Cushings. As a matter of fact, I discussed them with my regular vet who said he had a client who spent hundreds of dollars seeking a reason for tremors but gave up and the neurologist I took Macy to who helped us find surgery also said he had no idea why those tremors happen. They have to be related to something!

    To explain why I support the idea of early MRI.... We were completely backed into a corner when Macy was diagnosed with the macroadenoma. Surgery was our only real option because her tumor was diagnosed so late even though she had been under the care of vets for problems that were related her Cushings for well over a year. Probably more like 18 months of constant vet visits. From the time problems started showing up until we drove her to the hospital for surgery our guess is that we spent over $10,000. That money went out a bit at a time as the hole was dug. $100 here $500 there and the hole kept getting deeper. It took awhile to see what was happening though and before we realized it we were in really deep. If we had seen a specialist earlier and had an MRI the cost would have been about $2,000 to maybe $2,200 (and we're in an expensive part of the country from the costs of vet services I've heard others relate). The specialist plus ultrasound was about $800. The follow up radiation would have been about $3,000 so total expense would have been about $5,000 and Macy would probably still be here because they would have been a lot more successful with reducing the size of her tumor. Even if we had decided not to go forward with radiation we could have made more informed decisions about her care and we would not have pursued treatments for things that didn't exist or continue to search for answers about why things were happening.

    With all of that said, I have to point out that we do carry health insurance on our dogs for situations like this. The coverage for Macy still didn't go high enough but it did make a difference in how we moved forward so we weren't in the awful position of every decision being based on what things cost.

    Macy had a lot of very good doctors along the way. Even Dr. Oliver tried to help! But everyone was operating in the dark until we did the mri.

    You brought up the CT scan and I have a question. I asked about doing a CT scan vs MRI as a diagnostic but the vets didn't seem to like that option. Do you have any idea why? Are veterinary CT Scan facilities hard to find? They did two CT scans in the hospital on Macy. One was done before the surgery and one after so I know they clearly do show the tumor. I would think that if a tumor is suspected CT Scan would be more appropriate. I know there's a worry about the exposure of humans to xray radiation from it but I don't know anything about how that exposure relates to the life expectancy of a dog.

    I have to check but I think Dr. McDonnell has done one or two pituitary tumor removals. I'll ask. I can't imagine what it would cost though. I also hope these surgeries will one day be possible *and affordable*!

    Kathy

  10. #10
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    Default Re: Macroadenomas

    Quote Originally Posted by ktzndgs View Post
    Were the tremor episodes you saw confined to a limb or did they involve his torso as well? Macy developed leg tremors and I think I recall Gina saying Lucy also had tremors. I discussed that with the vets but they didn't relate them to the tumor or Cushings. As a matter of fact, I discussed them with my regular vet who said he had a client who spent hundreds of dollars seeking a reason for tremors but gave up and the neurologist I took Macy to who helped us find surgery also said he had no idea why those tremors happen. They have to be related to something!
    Kathy, Barkis' strange tremors were limited to his torso -- he appeared to be "shivering" across his shoulder blades. Prior to treatment, he did have muscle wasting in his rear end which also caused some trembling in his hind legs when he tried to jump or climb stairs. But that looked pretty clearly like muscle weakness and resolved once he had been stabilized on the trilostane. The shoulder tremors were very different and very odd. Especially because they happened most often when he was relaxed or even sleeping (and they weren't the typical twitching that goes along with dreaming).

    You brought up the CT scan and I have a question. I asked about doing a CT scan vs MRI as a diagnostic but the vets didn't seem to like that option. Do you have any idea why? Are veterinary CT Scan facilities hard to find? They did two CT scans in the hospital on Macy. One was done before the surgery and one after so I know they clearly do show the tumor. I would think that if a tumor is suspected CT Scan would be more appropriate. I know there's a worry about the exposure of humans to xray radiation from it but I don't know anything about how that exposure relates to the life expectancy of a dog.
    I may be wrong about this, so take what I say with a grain of salt. But my understanding at the time was that both a CT scan or MRI would likely have the capacity to reveal the general appearance of the tumor. So if we had only wanted to perform the diagnostic for purposes of confirmation of an enlarged tumor, either image would provide that and a CT would have been cheaper. However, if we wanted to consider radiation therapy, the MRI would have been the preferred imaging process for purposes of visualizing and marking the exact parameters of the tumor for the radiation treatment. The MRI provides a different type of image that is more useful in that regard. And we were told that the vets who would be performing the radiation therapy would probably prefer to do the imaging themselves. That's why we were debating the possible trip to Auburn.

    One other comment about clinical signs...I do remember our IMS telling me that he always suspects an enlarging tumor in a Cushpup who stops wanting to eat but who has otherwise been stable on treatment (cortisol level not too low and all other labwork normal). I know that lack of appetite is also listed just as a possible side effect of trilostane itself. But my own thought is that a loss of appetite as a side effect is not so unexpected early on when the cortisol level is first being lowered. But in our case, it emerged several months into treatment when everything else was looking fine. I certainly would have taken Barkis into the IMS much sooner had I been home, and I do believe we would then have had more time to have made a decision about the imaging, since the IMS suspected a macrotumor pretty much from the get-go once we finally did get back home and I described Barkis' behavior.

    Marianne

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