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AVM Survivors Network

Canadian Hospitals That Specialize in Brain AVM


#23

Canadians! Call for help from @shadow see link.

Thanks,

Richard


#24

Hello,

I am almost 74, and was operated twice at St. Michael Hospital, Toronto.

The first time was in April 12, 2017, and they performed a transvenous coil embolization of the venous pouch at the proximal common venous outflow of the dural AV fistula. Unfortunately I had tinnitus again.

The second time I was admitted in May 4, 2017 with a Dural AV Fistula for a Bilateral Onyx Embolization to VASC malformation from occipital supply.

Drs. performing procedure: Dr. Tsecchi, and Dr. Thomas Marotta
Most Responsible Healthcare Provider: Dr. Michael Cusimano

I will be called for follow up with Dr. Marotta for a Digital Subtraction Angiography in 4 weeks time.

Very knowledgeable and kind people, always ready and available to answer my questions and needs.

On my first coiling experience, I did not feel pain at all, and a week later I returned to my swimming daily sessions of 90 minutes without complications.

Four weeks after the last embolization, I still have a tender area over the lower back left quarter of my head. I assume that is due to the nature of the second procedure, which was entering from the groins of my two legs to the back of my head, while on the first embolization they acceded from the front.

That second embolization took me over my back over thirty hours waiting for the stabilization of my groins, and I presume that could be one of the reasons of the still current inflammation on the back of my head.

Relief has been coming as time went by, by lowering the inflammation and tenderness of the the neck (upper and posterior neck, where it joins with the head). Now I can sleep better, especially over one side of my head.

Tinnitus still persists and some times is higher than before.

Big hopes for next step, which will tell us what to do next, including potential Stereotactic Radiosurgery (SRS).

Enrique


#25

Enrique

I think it is more uncomfortable when you have an embolization that is extracranial. Mine in April was a mix of intracranial and extracranial and it was the external part which was the most uncomfortable the longest.

Richard


#26

Hello Richard,

Thank you for comforting me with you experience. This coming Tuesday I will have my post angiogram, after the second embolization, the one that is causing partial insensitivity on the left side of the back of my head, which was diminishing overtime. Unfortunately this week whike repairing the side of my trailer for more that three hours, i was exposed to the sun over my back (including my head); since then it started a burning sensation as well as increased sensitivity over the left tender area.

I will discuss this issue with the surgeons tomorrow, but will keep high my spirit to carry on any suggestion derived from Tuesday’s angiogram, including the potential Gamma Knife Surgery, if suggested.

The hissing sound in both ears persist and is permanent. Sometimes it increases the frequency to later return to habitual level. I can’t determine the triggering of that variation.

Best!

Enrique


#27

Enrique,

I agree, I’m finding regular tinnitus a bit on the increase post first embo, too.

Do let us know how you get on. I might branch this part of the conversation into a new thread… We’ve wandered off the line of Canadian hospitals…

Best,

Richard


#28

A post was split to a new topic: Hospital


#29

DR. Leodante Da Costa at Sunnybrook is great!


#30

Hi, Enrique!

I am not a Canadian but do know much research, diagnosis, and surgical treatment of AVMs originated in Ontario, Canada. I went to a neuro conference about 30 years ago and heard Dr. Charles Drake speak to the subjects and the outcomes of surgery back then. It was breaking edge surgery then. I would search the web in order to locate the hospital(s) he practiced at. Most likely in a university medical center. Wishing you sucess?