Another Surgery or Post-Surgery Soundwave Therapy?

I wish things were clear but they are not. It is so important to get as much information as possible before making any decision regarding health or in general. Actually even before buying a puppy but that is another issue.  I am a member of several forums and asked some people for information after I talked more with Ella's neurologist.  I have read about Post-Surgery Soundwave Therapy on Cavalier Health and wanted to know if anyone had experience or could give me some input. I have also asked if anyone had gone through a second surgery. What is interesting is that no one responded to the second surgery experience but I had a couple of people tell me some positive things about Alphasonic Soundwave Treatment. 

The actual machine is expensive but there is less risk. However, surgery is concrete. I know there is more risk but due to Ella's progression do I want to take the chance with Soundwave therapy? There is a local animal hospital that offers rehabilitation therapy, Steele Creek Animal Hospital. They do not have the actual Alphasonic machine but I did not get to talk to the Doctor but I did talk to the tech and it seems to do some of the same things.  Ella's neurologist said I could give it a try but I would not know if it is helping and then would I need another MRI. What if it doesn't help?

Yikes!!! I know one thing for sure! I am not going to do nothing. I am not going to give up and I am going to get as much information as I can so I can make sure I feel comfortable that I am making the best decision.

Just look at her! Would you give up on her either?

Ella Update. New Decisions

I met with Ella's neurologist today to go over her recent MRI results and to talk about what to do for her future. Before meeting with him, i wanted to get as much information as possible. I posted on forums and asked if they could offer me any insite. When people first learn their dog has SM, they want to know what to do. Surgery/medical management. I have people contact me about Ella and ask what they should do. I have always said that the decision is really only something they can make. You can not compare each dog because it is so different with each dog.

I wanted information and i know that the decision will ultimately be up to me.  I would like to say that even with Ella's surgery not giving the results that i had hoped for, i would not change it. The reason i decided to have surgery was because i felt her SM was progressing fast and she was medication seemed to not help. Today i know i was right. Even with surgery which initially released the pressure and allowed for the csf fluid to flow and with several medications, Ella did not improve. In fact she is worse than she was before. If i did not have the surgery would she even be with me now? I dont think so.

Ella having the MRI proved what i had been fearing and even though it was not good, i have the information that many people do not. I needed this because of Ella's progression. There are many things i learned today and one thing is how i have said many times the variations with each dog. One thing i wanted to ask about was the size of her syrinx which i had learned had increased in size. There is hope that surgery will reduce the size but in Ella's case it grew from .35 to .53. That is a pretty big difference in such a short period of time.

My question to Dr. Brofman was that i have read studies with dogs with larger syrinx size and even Ella has a friend with a syrinx .9 (who just had surgery) but Ella seemed much different. He told me they have determined that it is not the size that is as much a factor but the location. Ella's is located at the top and at the worse place. He said this is why she can show different symptoms.

I knew progression was bad, location bad, medication not doing what it should so i asked about alternative therapy. I actually learned a lot about this from a couple of people but he said that this is not a solution. I would like to point out that it was not because he does not believe in it because he actiually will give Ella accupuncture, but Ella really needs something more.

He talked about another surgery that would be done to remove the scar tissue that is blocking the CSF flow. He said the risk would be if the the scar tissue has attached which he will not know until surgery. If that is the case he would have to carefully scrape or remove each tissue. This is where risk comes in. it could cause complications that result in perminant neurological damage. It is not a given and i asked what the odds were and he said that there could be swelling, hemeraging, but he could say it was not as much as i feared.

He would put in a bone cement to cover the space that was removed to help prevent scar tissue to develop again.

We briefly mentioned shunting which he said he would not consider.

So this is where my story is different. Many people dont know at first how their dog will react to medication. They dont know if it will even progress. I could say i am unlucky and wish Ella was like a lot of the others, but i am actually very lucky that i got the MRI because i know a lot of things that make it clear how fast this is for her and even with the subtle signs, i fear where she would be a month or months later.

Ella's neurologist is going to work with me and if i do decide on surgery, he will keep the cost as low as possible since he knows my financial situation. 

I just found out all this information today and i would tell anyone who is going to make a serious decision to really think about it.  I know i can not do nothing and watch her get worse and suffer more pain. Putting her through the risk of surgery is scary and i have to figure out is it the best thing for her.

Someone in my family said no one would blame you if you let her go. I know how much it put you through and how hard it was. It was shocking because the only thing that concerned me was not what it would put me through, but what it would put Ella through. Am i going to do this for her or for me? If she was old and not have the life i see in her would be one thing. It would be selfish to keep a dog barely alive just because i could not let her go.

Ella has a lot of life, love and so much to give. How in the world could i watch that slip away. I did put my life on hold and it has been tough on me, but looking at her and seeing her smile makes everything worth it. She saved my life.  I am not going to give up. I am going to do everything i can (no matter if it is hard) for her. She is the most important thing and i care about her more than anything else

Dr. Shore's Swine Tissue Surgery Hope for Corey

I have been reading about success stories and have heard a lot of good things about Dr. Shores at the Auburn.  You can read about Abby who went to Dr. Shores and from her story my friend is also going to Auburn for Corey's Surgery.  This is a blog about Abby  She also has some videos on YouTube.  I will let her owner tell how she is doing now but this procedure is supposed to reduce the chance of scar tissue to form.  I got the following information from www.cavalierhealth.org

duraplasty using swine tissue



The alternative of a tent graft of swine tissue and body fat is called duraplasty. Dr. Andy Shores, veterinary neurologist at Auburn University in Alabama, Dr. Jill Narak, veterinary surgeon at the University of Tennessee in Knoxville, and others have performed this procedure on at least 21 dogs, most all of them Cavaliers. Swine intestinal submucosa was sutured over the cerebellum and brain stem in a tented fashion (see photo). Fat tissue from the dog's gluteal region was then placed over the site prior to routine closure.






In a report published in October 2009 at the American College of Veterinary Surgeons' annual symposium, the researchers stated: "Overall, recovery was considered to be good to excellent by owners. To date, none of the patients that have undergone this surgical procedure have required further surgical intervention due to postoperative compressive scar formation that has been reported in the previous literature. Follow-up time ranges from 1 week to 1 year. ... The use of the titanium mesh, placement of the screws, and the exothermic reaction of the overlying methyl methacrylate may contribute to tissue trauma. The authors conclude that with the results of this study, this procedure is clinically effective and the use of a titanium mesh, additional hardware and methyl methacrylate offers no advantage in canine COMS patients."

Corey's Surgery is next Wednesday so please keep him in your thoughts.

Ella Needing a Second MRI

I have been avoiding this since Ella's neurologist told me Ella would need a follow-up MRI in August. My previous post told the statistics about her chances of a relapse and even though I have seen the symptoms reappear, I have been scared.  One reason is because I know I will not be able to do anything about it.  If scar tissue has developed they recommend surgery to remove it.  Surgery that I will not be able to afford.  Knowing that she is on medication and I still see some symptoms of pain and eventually she will get to a point that I don't want to imagine and there is nothing I can do, will kill me.  I will need all the support and prayers through the next few weeks. 

Statistics and Surgery Success and Recurrence

There is no cure for Syringomyelia. Those words keep playing in my head. There is also no guarantee that Ella will no relapse after she has had an expensive surgery where they removed part of her skull and she spent months recovering from this procedure.  I knew that when I decided to take that chance.  It was the only chance I felt she had and if she was one of the ones that was not successful at least I did something.  I thought that would make me feel okay and I would worry about that later and figure something out then.  I just prayed that she would be one of the lucky ones.  I knew that surgery gave her time.  That was a given. It would at least relieve the pain but there is a possibility that when part of the skull is removed, scar tissue can form.  This will then cause relapse and dogs will require to have another operation.

Why has this been on my mind recently? There was a post on www.cavaliertalk.com with notes from Dr. Dewey who is a neurologist that pioneered foramen magnum decompression (FMD) surgery and spoke recently at the AVMA.  Someone took notes on what he said and his presentation was targeted to vets so most of it was not new information but reading again some of these statistics made me realize just how realistic relapse could be for Ella.  Dr. Dewey created a procedure using Titanium Mesh with the hope to reduce the rate of recurrence.  I knew about this procedure when deciding on Ella's surgery but it was more expensive, more dangerous, and at the time I did not know what the long term benefit would be.  I am going to copy from Dr. Clare Rusbridge's website who is the expert of SM and Cavaliers says in general about some surgery questions.

CM/SM – surgery





What surgical options are there?


The most common surgical management is cranial/cervical decompression (also described as foramen magnum or suboccipital decompression). The principle of this surgery is to allow CSF flow by removing the bone at the back of the skull (supraoccipital bone) and part of top of the first vertebrae. This may be combined with a durotomy (cutting the meninges) with or without patching with a suitable graft material.


A cranioplasty procedure used in human cranial/cervical decompression surgery has also been adapted for use in dogs. The procedure entails placement of a plate constructed of titanium mesh and polymethylmethacrylate (PMMA) on pre-placed titanium screws bordering the occipital bone defect (Dewey et al 2007).


An alternative method of managing syringomyelia is direct shunting of the cavity. In humans this is not a preferred technique as long term outcome is poor due to shunt obstruction and/or spinal cord tethering.




How successful is surgery?


Cranial/cervical decompression surgery is successful in reducing pain and improving neurological deficits in approximately 80% of cases and approximately 45% of cases may still have a satisfactory quality of life 2 years postoperatively (Rusbridge 2007). However surgery may not adequately address the factors leading to syringomyelia and the syrinx appears persistent in many cases (Rusbridge 2007). Much of the clinical improvement is probably attributable to improvement in CSF flow through the foramen magnum.


What is the recurrence rate after surgery?


In some cases scaring and fibrous tissue adhesions over the foramen magnum seem to result in re-obstruction and 25% to as many as 50% of cases can eventually deteriorate (Dewey et al 2005, Rusbridge 2007). This can be as early as 2 months postoperatively.


Dr. Dewey stated again about the 50% of "cases" and I hate to think of Ella as a case of relapse.  He stated that his procedure had a 7% relapse rate.  This is a big difference. 

I am constantly worrying about Ella getting worse.  I have days when she is better than ever but then there are the bad days and I see the signs that she had before she had surgery.  I am reliving everything over again.  I know it has only been 6 months and we still have a long way to go.  Every head shake, every stumble up the stairs, every time she hides under the bed, every time she flinches when I try to touch her head my stomach drops. I have these statistics in my mind. I will not be able to handle this again and she is just too young with too much to offer.  I know she has so many good days that to harp on the bad ones is not fair.

When I explained to her neurologist some of the things she had been doing, he seemed concerned and put her on some more medication. He mentioned doing another MRI and that was extremely scary for me. I know the more knowledge is better but if the MRI results are not good, then I am faced with the same thing as before. I worry but I have reason to worry because she has a 50% chance. One person told me to face the facts and that she is getting worse. To just adjust her medications and that is the answer. There are several articles you can read about statistics and dogs that are euthanized and success rates but it just makes me too sad. I am posting this to share my worries but I also know there are people that need hope. I also long for hope too and there is hope for many of them.  Ella is her own case. She is a special case and a special angel.

Future and Progression

Here is a picture I took this week of Ella having a blast riding in the care.  I would like to say that I do not recommend this but we had a little fun.  She has a car seat that I talked about (I think) that has a harness for safty and allows her to look out the window.  I had it before she had SM, but when she couldn't get up, it was good for her to be able to look out.  So I am going to focus on these moments.  A dog with SM is not a death sentence. However, it is quite frustrating because you don't know what will happen. Take time to enjoy these moments and not the outcomes that you have no control over.  Doesn't she look cute?

I am overwhelmed by the response of people reading this blog and having similar stories.  I am truly touched and my heart goes out to each one of them.  I recently joined http://www.cavaliertalk.com/ and the people have been so nice about Ella and there are several different discussions other than SM.

When someone learns that their Cavalier has SM, it is frustrating.  Mainly because each case is different.  I have talked a lot about surgery vs. medication etc, but I read these stories and people are wanting answers.  I wish there was some way to know if a dog will progress.  I wish I knew what Ella's future holds.  I think I was so concerned about what Ella's future was, that I missed some of the joy of her present.  It feels like a roller coaster ride sometimes and right now she is doing great.  She is shaking her head and scratching some but she is enjoying life.

I got a camera so I could start filming her and taking pictures, but she had so much fun at the park last weekend.  She was running after the birds and I could not hold her back.  It was truly amazing.  This dog that I thought would not be here now, is having a blast! 

This is what I would say to others.  I think for a long time I have been thinking of how long.  Will there be scar tissue?  Is it going to progress fast? How hard will it be when she gets really bad?  All these thoughts kept me from seeing the positive.  I don't know those answers and if I did know, what good would it do? Now that I wrote that, I think it would just make me sad.  I how good she is doing on the medication and I can control that.  The other part, I have no control over.  I think maybe people looking at surgery might find that information helpful, but all I know is in my heart I did all I can.

Pray for Corey He is Getting an MRI Wednesday

I am in a cavalier group in Charlotte and I sent an email about Ella in hope that someone will be able to see signs before it was too late. Another member has a pretty Ruby named Cory that sadly has some symptoms. Corey is getting an MRI Wednesday. Please pray that it comes back with good news. I hope that even if he has SM it is a mild case and not severe like Ella's. If her battle has helped another then her fight made a difference. If you have stories please leave comments or send me an email and I will post them. Spreading the word is the only way I can fight back.

Corey was born in September 28, 2007 in Ireland. Yes Ireland! We fell in love with him at the first time we saw him despite his overbite ;). And he’s been the best dog ever since then. When we take him for a walk people would stop us and say hi to him or just smile at him, because he always gives that “smile” face at you. His best buddy is our Siamese cat Honey Bunny. They get along very well and often sleep together in our bed. It is absolutely our best decision in our life to get Corey and we just can’t get enough of him.

8 things about Corey:

1. His favorite places are our lap and our bed.
2. His favorite things to do are walking, playing with daddy and doing tricks to get treats.
3. He has an overbite.
4. He snores when he is sleeping.
5. He likes to crawl on carpet. (funny!)
6. He gets over excited when we come home and we need to give him his toy or he’ll jump and grab our clothes.
7. He scared of water, but will do his business in the rain (strange boy!)
8. He loves car rides.

Posted by Cavalier King Charles Group in Charlotte, NC at 8:17 AM 0 comments

The Surgery

 

I decided to get the surgery. The day I took her in for the surgery was long! I had to wait for the phone call to hope there were no complications. When I got the phone call that everything went great and there was little bleeding. The neurologist said that it could not have gone any better. I was so excited. Ella survived the risk of complications that could happen with surgery.

I went to see her the next day and she was walking and wagging her tail. It was so great to see her!!! She had to stay one more night and I could take her home that weekend. I had her stay with my mom because I work and I thought that she could take care of her and it is really important to restrict their activity during their recovery. I would be at work and so I know I could not watch her during the day.

My mom kept her for a couple of weeks and I missed her so much but it was better for her recovery so that comes first. She seemed to do so well and the hardest part was keeping her from walking or getting excited. However the first weekend was scary. She would not come out of her crate to go outside or eat. I think that was because she felt safe and now looking back on it, could I have kept her in there longer? I had to take her outside and I carried her but you just never know if that has caused any damage.

My mom and my stepdad became attached to her. They had to put down their lab a month before they kept Ella and I think that they missed having a dog around. They do not want another dog but they have said they their would keep Ella if it suited. Which I think that is going to be often because my new job requires some traveling and the first trip I went on I just heard how sweet she is. My mom was talking baby talk to her. They wanted her in their bed instead of mine.

I know I got upset because I was going to give Ella her medicine and mom said that she gives her a piece of cheese before and that is what she is used to. Well she definately does not need any extra cheese because with her limited activity she has become quite fat!!

The Choice

I have not posted anything recently which is because any free time time I had, I have spent it with Ella. I promised myself that if I could reach one person and be of help, it would mean I was doing something. I felt helpless sometimes and writing this blog has helped me and was one way I could relieve this feeling. I want to help others and when I have to face the terrible day that Ella is no longer a part of my life I want to help raise funds for research. I will do whatever I could to help win this terrible illness facing more and more King Charles Cavaliers. But for now I feel selfish. I have been so consumed with Ella that I have not been there and trying to do something to raise funds to help fight Syringomyelia is out of the question because I don't have enough funds for her own battle. It has been painful and any energy I have has been with her.

Some dogs are okay with medical management but Ella was getting progressively worse fast so I knew I did not have much time to wait and see. I do not have any emergency funds (not that people that do have any easier time with this news)but it was real upsetting that I did not know how I could manage to pay for surgery which, for me, seemed like the only option.

Ella saved my life so knowing that I could not save hers was devastating. The medication was not working. She was on prilosec (which I don't understand how that helps) but for Ella it did not. This is how Ella saved my life. I was extremely depressed living on my own and I started to seclude myself from all of my friends. I thought getting a dog that would show me affection would help and Cavaliers are definitely known for their affection! I read that if you want a watch dog then King Charles Cavaliers are out because they would greet a bugler with kisses. Ella was not exception. She laid on the couch with me and pretty much nursed me back to health.

I am tearing up when I write this because seeing her look up to me with those sad eyes full of pain was like her pleading with me to help her now and return the favor. So I told my parents that I would sell my condo and move to Columbia to commute to Charlotte for work. I would try to get a second job. I would live on the streets or do anything I could to help her. My parents knew what Ella had done for me and I think deep down they were scared that if I lost her what it would do to me.

My mom got a special credit card for this surgery and I called her neurologist and said I have made my decision. Which after I told him that he said that with Ella's age and how she had a severe case, I was making the right decision. He said that having the surgery earlier may help prevent any more permement damage that may be done.

I would like to say that no one can tell you what the right decision is. There are many risks with surgery and there is no promise that it can not come back or not even help at all.
www.sm.cavaliertalk.com and www.cavalierhealth.com have good information about the different medications, risks of surgery, etc. I am not writing this as a medical professional, I am writing this as an owner of a precious dog who has Syringomyelia. My choice to have surgery is not the right choice for everyone but it was the best choice and the only choice I thought there was for Ella. I still don't know how I can pay back the money I owe but I know that I would always think "what if" and I would not be able to get over it.