Ophthalmologist appointment, take 2!

In some ways our appointment yesterday was pretty disappointing from my point of view, at least at first. We were a little early, so we enjoyed the nice weather outside and walked all around the building. Reo was hopping up and down from the curb, going around trees and bushes, and marking where all the other dogs before her had done their business before her!

When it was finally time for our appointment, and we went into the exam room, Reo was really distracted and wanted to sniff everything - she seemed fairly excited (I'm sure she was picking up some on my excitement, too). Dr. C came in and tried to get her to come to him - again, she was really distracted with all
of the smells and couldn't have cared less about Dr. C or his assistant! She gave them both courtesy nubbin' wags, but that was about it!

I gave him a quick update on all of the things that we had done with Reo post SARDS diagnosis (trying to fit 7 months in 5 minutes isn't so easy!). Dr. C was throwing some cotton around, but again, Reo was not focused in the least, and had her nose to the ground most of the time.  I tried to get her to sit and focus, and I would do the cotton test, but wasn't having much success, either.  I kind of wished we could have talked for a few minutes and let Reo get all the sniffs out before proceeding with the testing. :-/

I asked if we could do some functional testing. Dr. C said that they had an obstacle course for large dogs, but that it wasn't appropriate for small dogs (whatever that means!). So, we set one up in the exam room with a chair, the doctor stool, trash can, and my purse. She went through it just fine, and didn't bump one thing!

Then he turned the light off and did her eye examination, while I blabbed on about the treatment we pursued, and the "evidence" we had for her regaining some sight.  His examination showed a "blind" dog - Reo had no menace reflex, and no dazzle reflex. Her PLRs were sluggish, and slightly incomplete. None of this was a
surprise to me - I already knew all of that.

He said that her retinas were "thin", but did not seem detached/very reflective based on the exam. I asked him whether or not he would expect a SARDS dog to have detached/degraded retinas after 7 months of being blind.  I wanted to uncover whether Reo's retinas still being intact was an indication that she still had some retinal activity.  Unfortunately, it seems that this answer isn't so straightforward - another case of "every dog is different". He told me the story of a patient who went blind due to something other than SARDS, and this dog's retinas are normal over a year after blindness. So, maybe not all dogs' retinas go through the apoptosis to destroy them?  This was surprising/confusing to me - I thought if the retina is not used by the body, the body destroys it.  Will have to look into this a little more...

We talked a lot about adrenal exhaustion vs. IMR and IVIg. He is really familiar with Dr. Grozdanic's work. His impression is that Dr. G is taking a lot of flack from the vet community because there are so many different variables with his protocol, and not enough control groups to be a "real" study or show "real" results. This was surprising to me, and disappointing also, as my impression of Dr. G's work was that it was considered a breakthrough in the vet community.  Just goes to show that if a theory is outside the traditional lines of thinking, it can/will be met with resistance from at least some.

I gave him some of Caroline's research papers to review or have on file, including some of restored vision, and also a dog that got IVIg treatment but still developed adrenal exhaustion. We agreed it was really unfortunate that her papers are "dismissed" by the vet community because they are not peer-reviewed (and because Caroline doesn't have DVM after her name), as if it discredits a particular study of a dog.

We reviewed Reo's bloodwork - there was no denying that she has made progress!  Dr. C was interested in this, but it was "outside" his area of specialty, so didn't make too many comments.

Ultimately, Dr. C said that all that mattered was that we thought that Reo had made improvement, and if we think that she can see based on her "real life" tests, than that was a great thing. His examination revealed that if Reo was not blind, her vision would be very, very limited.

At first I thought he was being dismissive and flip, and it sort of offended me!! I wanted to do more functional tests, obstacle courses, take her outside and show him how good she does on her own. I wanted to turn him into a believer, if you will, and prove to him that she has some functional vision!

After some discussion, I decided not to repeat the ERG, or get an ultrasound. I didn't want to put Reo through the stress of both tests, and I didn't want to pay several hundred dollars for Dr. C to tell me she's "still" blind. :-/

I feel like he just wasn't interested enough in the curiosity of Reo's case to really put forth an effort into pursuing a lot of functional testing. Though unfortunate, and upsetting to me at first, I accept it. I had a good cry after leaving the office - mostly my own frustration - and felt better afterwards. I think I was frustrated from my own high expectations, and those expectations not being met.  I also feel frustrated that research from Dr. Grozdanic, Caroline Levin, and Dr. Plechner are being dismissed, when it is so clear to me (and others whose dogs have undergone treatment) that progress can be made!!

It's true that we know Reo better than anyone, and we know that she has some functional vision left.  She went hiking in the woods and did fantastically, for crying out loud!!  In the end, that is enough for me. We will continue to share our story and blog, and do what we can to raise awareness for SARDS, and
the success with the treatment we pursued. Ultimately, I'm happy that she is on her way back to health - regardless of how much she can see, or for how long her vision returns.

I am keeping the faith!  :)

SARDS Resources

SARDS is a complicated disease, and there are conflicting theories about the causes and treatments.  I personally, subscribe to the cause of adrenal exhaustion/Plechner's syndrome (I will sometimes use the two interchangeably), and believe in treating this cause.  I follow the work of Caroline Levin and Dr. Alfred Plechner, to whom I introduced you in my "Cast of Characters" post.  When doing my research, this theory just made sense to me when I thought about Reo's symptoms.

Reo never had any allergies, skin rashes, itchy skin, food intolerances, etc. that would suggest autoimmune issues.  I believe that SARDS and IMR (Immune-Mediated Retinitis) are two different diseases.  I do not believe that SARDS is an autoimmune disease, while I do believe that IMR is an autoimmune disease.  I won't talk too much about IMR or the IVIg treatment for SARDS, as these are not part of Reo's story.

I won't lie - this is a TON of information to digest, and it is completely overwhelming.  It can be highly confusing, not to mention highly frustrating, especially if you don't have a background in science/anatomy/physiology/biochemistry/ophthalmology!  Please feel free to post questions in the comments and I will help if I can.

Please remember that I'm not a veterinarian, and in no way do I try to discredit anyone's research, theories, or experiences.  I just want to present Reo's story, from my perspective, in a way that makes sense to me, in hopes of helping others!  While I may not be an expert on SARDS, I am an expert on Reo and her treatment, and that's why I'm writing this.

Let me be clear about one very important point.  It is highly likely that your veterinarian, and even your veterinary ophthalmologist, does not have any experience with treating SARDS.  It is also highly likely that he or she has not read any research, or is not familiar with the treatments available to SARDS dogs.  This very fact is infuriating, frustrating, and downright puzzling, but I know that veterinarians and doctors can't know everything about all diseases.  The key is, they need to be open-minded enough to educate themselves so they can help you and your dog.  It is absolutely critical that you are an advocate for your dog, and if you want to pursue treatment, you must be willing to find a veterinarian to help you.  You must do so quickly, because the health of your dog depends on you!

Please read the links below to find out more information about SARDS and IMR.

Wikipedia

Always the best place to start for a general, overview definition!

http://en.wikipedia.org/wiki/Sudden_acquired_retinal_degeneration

Caroline Levin, RN

Her site was (and still is) my bible in many ways.  There is a wealth of information and research on this site, and if you are the owner of a newly diagnosed SARDS dog, I suggest you read each and every link on this site!  Take notes, and jot down questions you may have.

http://www.petcarebooks.com/research.htm

Caroline's research articles have a "plain English" translation, and so it makes it easy to read about the symptoms, testing, and treatment that these dogs underwent.  Having this information will help you to communicate with your veterinarian.

http://www.petcarebooks.com/research_case_reports.htm

This article in particular is a nice comparison of the adrenal exhaustion vs. autoimmune theories of SARDS:

http://www.petcarebooks.com/pdf/CaseReport9.pdf

I highly recommend a consultation with Caroline, if your dog was recently diagnosed with SARDS.  She can help you understand this disease, and suggest treatment for your dog.  You may email her to set up a consultation time at consult (at) petcarebooks (dot) com

Dr. Alfred Plechner, DVM

Dr. P's site is also a wealth of information.  While both he and Caroline subscribe to similar theories about adrenal exhaustion, they sometimes use different terminology, and suggest different treatments.  Dr. P hasn't done as much research on SARDS specifically like Caroline, but Dr. P has helped over 150,000 humans and animals during his career.  He has also published several books and articles.  To me, his website helps put everything in perspective, as it is "bigger picture" than just SARDS dogs.

I do suggest that you read each and every page on Dr P's site, using the navigation links on the left.  Again, take notes, and jot down any questions you may have.

http://drplechner.com/home.php

Bonnie Sue the Scottish Terrier's mom wrote an extremely interesting article on her experiences, including Levin's and Plechner's theories, Dr. Grozdanic's theories, and IVIg information.  It is very well-written, and a great overview of Bonnie Sue's story.  It should be required reading for any dog owner, let alone SARDS dog owner!

http://drplechner.com/sards01.php

I highly suggest a consultation with Dr. Plechner, but he typically requires that your dog already have the EI-1 panel from NVDS (see next entry).  Dr. P treats Plechner Syndrome/adrenal exhaustion quite aggressively, and not all vets will be willing to undertake his protocol (this was my personal experience), so be prepared.  However, Reo is living proof that his treatment WORKS, and isn't your dog's health worth it?  You can fill out the consultation request form on Dr. P's site:  http://drplechner.com/consultations.php

National Veterinary Diagnostic Services (NVDS)

This laboratory will perform a critical blood test to help diagnose your SARDS dog's underlying adrenal issues.  Caroline Levin reports that 98% of all dogs diagnosed with SARDS have adrenal exhaustion.  Therefore, it is of utmost importance that your dog is diagnosed and properly treated!

NVDS performs the most sensitive test, and is recommended by both Caroline Levin and Dr. P (please note that neither is affiliated with the laboratory, but just endorse their testing).  The needed test is the EI-1 panel (endocrine-immune 1 panel) and reports on total estrogen, total cortisol, thyroid hormones, and immunoglobulins.  This information, taken together, will help diagnose your dog.  Your veterinarian may want to send the test out to the University of Michigan, or the University of Tennessee.  I suggest that you push for the NVDS test, as it is more sensitive, and measures all of the analytes which are important to diagnose your dog.

This lab can also be very helpful if you need to find a veterinarian in your area who may have used Dr. Plechner's or Caroline Levin's protocol in the past (some individuals have had success [like me], and some individuals haven't had much success, but it's worth a try if you are desperate to find a vet who'll help you!)

Print out the forms on the website, and bring them to your veterinarian.  Your dog's blood sample should be spun down, and the serum shipped via overnight on ice packs to be kept cold.

http://national-vet.com/

SARDS Dogs - Adrenal Exhaustion Yahoo Group 

This is a group that I started, and is intended to be a safe place to learn about and discuss adrenal exhaustion/Plechner Syndrome, and the specialized treatment for this disease, following the recommendations of Dr. Plechner and Caroline Levin.  Members are encouraged to share their own experiences and make suggestions to other members that need help (keeping in mind that we are not veterinarians, and our suggestions should be discussed with a vet!).
http://pets.groups.yahoo.com/group/SARDSdogs_AE/

SARDS Awareness

A site that talks about some of the differences between SARDs and IMR.  I personally do not agree with all of the information on this site, as it is heavily weighted toward IMR and the associated IVIg treatment from Dr. Grozdanic at Iowa State, but it is a good resource nonetheless.  Unfortunately, it is not regularly updated, but if you are interested in learning more about IVIg therapy, including Dr. Grozdanic's treatment protocol, it is on this site.

http://www.sardsawareness.org/

SARDS Dogs Yahoo Group

This site was a great support to me when Reo was first diagnosed - the members are very knowledgeable and helpful about SARDS, IMR, IVIg, and blind dogs.  If you need suggestions about how to help your blind dogs cope, this is the place to visit and pose your question!

http://pets.groups.yahoo.com/group/SARDSdogs/

Blind Dog Info
This page is a collection of stories from owners whose dogs were/are affected with SARDS.  Sometimes it helps just to read others' experiences.
http://blinddog.info/sard.htm

There is also a message board, which you could find useful.  It covers other topics than just SARDS.
http://blinddog.info/msgbd/

After spending countless hours on these sites, perhaps consulting with Caroline and/or Dr. P, and getting your dog's blood test back from NVDS, you may come to the same conclusions that I did:

My dog has adrenal exhaustion/Plechner's Syndrome.  My dog's adrenal glands are not making the cortisol s/he needs, and they're making adrenal estrogen instead.  These high estrogen levels are toxic to my dog's cells, including his/her retinal cells.  High estrogen levels also mimic the symptoms of Cushing's disease.  My dog is sick, and s/he needs help immediately!

So...forward we go!