Doctors in Japan and questions about retinopathy.

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1/21/2014 6:07am
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Hi Everyone,

I'm completely new to this site and am already excited about all the info that seems to be on here. I am a 26 year old living in Vegas currently but will be moving very soon to Japan for a great job opportunity. I am currently healthy (all negative on my PET scans, blood work, etc.). I however am only 2 years out of my diagnosis so I still will need checkups every 6 months with an oncologist and probably monthly check ups with a retinal specialist. My question is, does anyone know of any resources or great doctors in Japan in the Tokyo or Yokohama areas? I know this is far fetched, but I just thought I'd throw it out there. 

Also, I'm wondering if anyone else has experienced radiation reinopathy after having the radtaion plaque surgery done? My eye formed a pretty large blood clot about a year and 2 months after my surgery and I've had to have extensive PRP laser done on my retina in order to stop the abnormal blood vessels from forming. I am just wondering what experience everyone else has had with that? 

After my surgery, I had severly decreased vision (maybe 75% gone due to the placement of the tumor being smack in the middle of my eye) in my treated eye and since the laser treatments have destroyed what little healthy retina I had left, I'm 98% blind now in that eye. It's hard to deal with at times, it makes me really sad to consider what a valuable treasure I've lost and the treatments are super painful to me, even with the painkillers the doctor gives me before the treatment. My doctor at UCLA advised me that if my body doesn't get the blood vessels under control that it could lead to glaucoma and possible enucleation after that, which is obviously the worst case scenario and my worst nightmare. I'm in a wait and see phase right now to see if the laser is having any effect on these blood vessels forming, and I hope to God that it's working. It's hard sometimes being the only person that I know of with this condition because no one really understands what we go through or how we feel. It would be so awesome if anyone else could share their experience and maybe some advice with me?

Thanks for reading this long post and for any help that you all could give!

Hi Racheal,

   Congratulations on what sounds like a wonderful opportunity in going to Japan for your job.

   If you haven't heard his name already, Dr. Takemi Sato in Philadelphia, has the most experience of anyone in the country in ocular melanoma. Since he is Japenese, and I know he goes back home often, you might reach out to him for a recommendation. Just a thought. His nurse's name is Renee and she will get back to you quickly.

 

Renee M. Zalinsky, RN, OCN, Metastatic Uveal Melanoma Navigator/Senior Cancer Care Coordinator, Jefferson Kimmel Cancer Center Network, 1015 Chestnut St., Suite 622, Philadelphia, PA 19107, Direct 215-955-3158, Fax 215-955-1020   E-mail: Renee.M.Zalinsky@jeffersonhospital.org

 

Hope this is helpful.

Dear Rachel,

You won't believe this- but Hello from Boulder City! Not sure if you have left the Vegas area for Japan yet, but it was nice to "meet" a follow OM person so close by on this Forum.

I"m glad that Nan had someone for you to reach out to. I'm writting to you to let you know that I also went through an OM that was immediately diagnosed as being one where they needed to remove the eye. The tumour was very large, and too close to the tear duct glands to make me a candidate for the other treatments. I know you are struggling right now, but let me tell you- do not be so aftraid.

The loss, the grieving what I'd lost- that was all real. It sounds like you are already going through that. But first off - know you are not alone. There is a great support site here: http://www.losteye.com

These are all folks who have lost vision completely in one eye or another, and the founder/creator of the Forum himself had OM. I was certainly scared of the surgery and diagnosis in general. I too was treated at UCLA and they were beyond the best possible care experience one could ask for.

Your journey will have to be your own, but I urge you to consider that there is life after loosing an eye- a very good one. I hope things go well for you. Let me know if you have not left yet and wish to meet since we actually live so close.

Be Well,

Jean