Ella's bad news and Not what I wanted to hear

I have mentioned before about Ella getting another MRI and my fear of what the results would show. She had her MRI and it is not the news I had hoped for. In 6 months and even on medication, she is worse than she was prior to her surgery. She did develop scar tissue and her neurologist spoke fast but we are going to talk Tuesday more in depth. The syrinx is 75% down her spinal cord and .5 ml thick? He said was wide and he is also concerned of the position. Wow, there is so much to take in.

I have said that each dog is different and the reason I felt Ella needed surgery was because she seemed to progress fast and the medication was not helping. I took this chance because I felt it was her best option. I don't regret that but now I have to think about what others face when they first learn about their loved one and the hard decision of what the best treatment will be. Now I know that in such a short period she has progressed to worse than before. Even on medication, I see more symptoms that makes me believe that she is not one of the ones that manage on medication alone. She has started to yelp which she did not do before.

He told me that a second surgery would be something I should think about or something to give me hope. The problem is that it is more risky and if it is attached and around the dorsel? then it could cause complications. He mentioned also about an implant.

I am meeting with him next Tuesday because this was just a phone conversation and to tell me he is sorry for the news.

On another note. Ella's friend Corey had surgery with Dr. Shores last Thursday. Corey only symptom he showed was scratching so when they found out the syrinx was .9 ml which Dr. Shores said when it is .3 he recommends surgery, they were shocked. Well Corey did well with the surgery and I hope for a good recovery.

I am going to need to learn some more things before Tuesday. I am really sad and would like to know if anyone has similar experience or knows anything about another surgery. It is also the thought of putting her through that again. So many thoughts are going through my mind.

Hi Anne: I am really, really sorry to hear of your MRI result. I think it is good however that you bravely went ahead and had it done, as it gives you more options than not having known at all what was going on. I can't really offer any advice on what to do next -- I think you'll need to have that longer conversations with Dr Shores [oops -- I now see I should have stated Dr Brofman] to hear what he thinks. If it is any consolation at all, some dogs do need a second surgery and many humans do too.

I would think by an implant he might be talking about a shunt -- some neurologists use this in conjunction with a decompression -- it is a kind of drain for the syrinx.

Please let us know what you heard back from Dr Brofman. There are no right or wrong decisions when the choice made is intended to alleviate the pain of this condition. We all have to go with a mix of the best advice we can get, the best information on our individual dog's case, and our own instinct and philosophy. :flwr: This condition is heart-breaking.

I hate to think if I never did get the MRI because to me, it seems like I need this time to figure out where to go from here. I know I just found out and I have a lot of things to think about, but it is hard that in such a short time, it has come to this. Thank you for responding.

I know Karlin mentioned Dr. Shores who is Ella's neurologist. I just mentioned Dr. Shores because I was thinking of Ella's friend who just had surgery and added that thought. My mind is not all there right now.

Karlin said:

I think you'll need to have that longer conversations with Dr Shores to hear what he thinks. If it is any consolation at all, some dogs do need a second surgery and many humans do too.

I would think by an implant he might be talking about a shunt -- some neurologists use this in conjunction with a decompression -- it is a kind of drain for the syrinx.

Please let us know what you heard back from Dr Shores.

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I'm confused - Dr. Brofman is Ella's neurologist; are you also going to have a consult with Dr. Shores?

When Dr. Brofman mentions an implant, I am pretty certain that he is talking about either the titanium mesh implant or the swine submucosa tissue with fat pad graph. I am pretty certain that no one in the US is doing shunt surgery. I suspect that Dr. Brofman is saying that in a second surgery, they would attempt to remove the scar tissue and then they would use the titanium mesh or swine submucosa to attempt to prevent scar tissue from forming a second time. He seems to be saying that it would be tricky to remove the scar tissue. However, since he has not done either type of surgery (titanium mesh or swine), I wonder if he would refer to either Auburn or LIVS? As mentioned before, I am tending to consider the Auburn technique to be superior from what I've researched. Also recall Dr. Dewey's comment that a more global decompression might really be necessary because of the global compression of the brain - I'm wondering if that is the future of decompression surgery? Also remember that Dr. Shores does the laminectomy at the neck (can't remember if it's at C1 or C2 - I think C2) which acts as further decompression.

I'm hoping to hear feedback about Corey's surgery with Dr. Shores also.

I've been working 80 hour plus weeks for the past month, but we have a three day holiday weekend coming up so I promise to transcribe my notes from Dr. Shores' session at AVMA and post this weekend. I'm hoping this will help you when you talk with Dr. Brofman next Tuesday.

Anne, I'm sorry to hear your news, but I think you are brave and wise to get all of the information possible so that you can decide in which direction to go in the future. And remember that Ella's experience will help future Cavaliers and owners who must face this problem.

Take care,

Pat

Hi Anne,

I just wanted to say how very very sorry I am to hear the news about Ella's MRI. I know how anxious you were about getting this done and I am sure you must be feeling very overwhelmed right now.
Hopefully as the news settles a bit and you get to speak with Dr. Brofman things will feel a bit better. There are still so many options for Ella. From what I have seen, read and heard, the disease is so variable. I know I am often feeling very confused about it.There are many different severities, display of symptoms and response to treatments. Only you, (with the advice of a good neuro doc) can judge which route is best for Ella.

Please know that I am thinking of you and Ella.

Hugs to you both,
Irene and Jack

Oh sorry for the confusion over neurologists. I don't always remember who is seeing who!

Pat a few people do shunts as an adjunct to decompression. One of the neurologists who used to be at Ohio State regularly does them for example, or used to, and I know a couple of others have mentioned they had them done. But I don't know of anyone who only does shunts (without decompression) in the US. But yes it would make sense that 'implant' might mean titanium mesh -- though I wouldn't think it would mean the swine or other fatty tissue (at least in my mind that's not really an implant!). I don't actually think the swine surgery is too much different from decompression using other types of fatty tissue but would sure be interested in more details on it if it is.

I am so sorry to hear this. There is so little one can say to help.

I know you were scared of what the scan would show. I commend you for agreeing the MRI could go ahead. You did the right thing for Ella, because now you & the neurologists have the information that will allow you to make the right decisions for her.

The problem with this condition is that we never want to believe things are getting worse, and so we may deny what we should be seeing and acting upon.

Thank goodness Ella is with someone who loves her as much as you do.

My very best wishes,

So sorry to hear about Ella hugs from me and Lola xx

I'm really sorry to hear you didn't get a better report. Ella is lucky to have you as her mommy. I think you were very brave to go ahead and get the 2nd MRI so you would know how she is doing. It would be very easy to just pretend everything is okay and not worry about it.....but foolish to do so. I think it's much more difficult to have diagnostic tests done and get to the true diagnosis but a much more responsible thing to do.

Hoping you are able to get some good information and direction for Ella's future care.

Oh Anne, I'm so sorry. It's what all of us who have elected to do the surgery worry about - that the surgery didn't give our dog the result we hoped for. SM is just so unpredictable. All you can do is gather the best information you can from the best sources you can and then follow your own heart. I know that doesn't help a whole lot - and you'll probably be doing a whole lot of kicking, crying and screaming (at least inside). Please let us know if he thinks that the scar tissue is the major culprit and what kind of implant he is referring to. Riley's neurologist talked about putting a shunt in to drain her cerebellar cyst but felt that she didn't need it once he got in there. We'll all be on pins and needles with you until Tuesday.

Anne... I don't even know what to say.. After receiving all the great support from you and seeing these beautiful pics off Ella.. I am SO sad. However, I have read great things about the shunt... So there is hope! Also please keep in mind Blondie syrinx that is 90 percent down the spine ... She is doing okay.... up and down...
I am sending you lots of love!!!!!!!!! And hugs!!!!! I am here whenever you need me!!!!!!!!! Day and night! I will also send you my phone number in an email.

Ella's bad news and Not what I wanted to Hear.

Blondiemonster said:

Anne... I don't even know what to say.. After receiving all the great support from you and seeing these beautiful pics off Ella.. I am SO sad. However, I have read great things about the shunt... So there is hope! Also please keep in mind Blondie syrinx that is 90 percent down the spine ... She is doing okay.... up and down...
I am sending you lots of love!!!!!!!!! And hugs!!!!! I am here whenever you need me!!!!!!!!! Day and night! I will also send you my phone number in an email.

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Just to say I was so sorry to hear your News about Ella,and am keeping my fingers crossed for both of you.

Bet

Molly, Dougall and Dotty send you all of their love and kiss's, we are so sorry. :hug:

Thank you all for your kind words and prayers. I know when I talked to him on the phone I was having trouble understanding b/c it was a lot to take in. I will know more I will know. I just know he said the scar tissue is a problem and depending on if it attached to dorsel or its position changes risk and makes things different. I am not sure what all the details are but it shows that each dog is different. He could be talking about a shunt but I think we have to look at everything and as everyone always say, get as much information as possible.

I know I will have questions after talking to him and getting more details, but I am doing everything to not give up. I can't think about certain things even though my heart and head is in pieces. I don't know if I can deal with losing her, but for now, I just glad I now know so I can take the next steps.

Thinking of you both, and good luck on Tuesday.
:flwr:

I am really sorry that the MRI results for Ella were not great. As everyone has said you need to talk it through with your neurologist and explore and question every avenue in order for you to make the right decision and one that you are happy with. It is so difficult making these decisions on what is best for our little ones, but we are all here to support you in whatever you decide. :hug:

Hi Anne,
I am so sorry to hear the latest on Ella. I'm sure you are so anxious to talk to the Dr. further about what is available. I hope that you can enjoy every good moment that you and Ella have together. She knows she is loved and she is so very lucky to have you for her Mom.

Anne.. I wish I could do more to help you. I'll be here and if you wanted to meet up and talk I'm here, anytime... Don't give up, Ella has the best mommy in the world.

Love,

So sorry to hear your news. Yes, in order to be a good advocate there is so much to learn. We all do the best we can do. Do not second guess, look forward with an open mind and heart. We will be thinking of you and Ella today.