I am glad to have found this group. I will be turning 40 in October and was diagnosed in April of 2013 when I was 38. I had Neck pain for quite a while and headaches many times a week for years. Eventually in October of 2012 I found a lump on my neck which I was first told was a cyst, after further imaging I was told it was a Benign nerve sheath tumor. I was told its nothing to worry about , I finally got through all the doctors appointments and got up the courage to have surgery and have the tumor removed in April of 2013. The surgery had chances of nerve damage which could effect my left arm. I am an electrician so It was a big concern to me, as I use my arms over my head during normal work. I had the surgery on April 2, 2013 and was happy to hear all was good and I was on the road to recovery. My left arm could not be raised above chest height but PT would help it . My world changed on April 10th 2013 when I went for a follow up on the stiches in my neck. I was told on that day That I had Synovial Sarcoma. My left arm was no concern anymore. As you all know your mind goes spinning , I had no idea what a synovial sarcoma was or how serious it was. Long story short I found myself at Sloan Kettering in NYC and Commack NY for 35 Radiation treatments to clean up my surgery site. My tumor was removed in a few pieces. After completing my Radiation treatments I had lost my taste buds, and the ability to swallow food. I can say Luckily none of the effects were permanent. I have fully restored my taste buds, swallowing food, my left arm is working good enough for me. I have been scanning every 3 months since my surgery and have been NED ( no evidence of disease) for 17 months. Early on in 2013 I attended the Sarcoma foundation of America annual patient conference in NYC and met a Girl for Gave me the Hope I needed at that time. She Had the same disease as me and also a similar tumor site in her neck. She was 24 years old and was diagnosed at 18. She was my light that I could and Would be ok, that I was going to live life and move forward, and I have been doing that since. All I can hope is that others can read posts like ones in this forum or meet people and gain the inspiration I did by meeting another dealing with what we all have here. I'm sorry if my writing is a bit babbly but I wanted to share some of my story and introduce myself to you all. I look forward to reading posts . Thanks for accepting me into the group.
Hi Joe
I was 34 when I was diagnosed with high grade synovial sarcoma of my right pelvic. I had 8 surgeries in 6 years with high doses of radiation. I had a 5 year old daughter. I am now 62 years “young” with a beautiful 3 year old granddaughter. While I am now dealing with late onset radiation induced lumbar plexopathy, I am living my life to the fullest and am moving forward. I have been graced with a wonderful life and am blessed to have great doctors and a strong support group around me. While there are days when it is difficult to walk as the muscles in my right leg have atrophied I am so thankful for each day of can put my feet on the floor and take those steps forward. I do not allow the word CAN’T in my vocabulary. I CAN and WILL keep moving forward. Bless you for sharing your story. Keep moving forward
Gracie
Elodie,
Yes I have tattoo’s. We did chat at the conference I believe. I wish there was more time at the conference for us to get to chat with each other. After all we are a pretty rare group.
I look forward to chatting here in the group.
Elodie Espesset said:
By the way, I was at the conference too and I think I may have talked to you there. Do you have a tattoo?
Thanks for your reply. That is great !!! You are an inspiration . I have two children who are 9&7 my wife along with them keep me quite busy which is keeps me loving and living life …
Grace said:
Hi Joe I was 34 when I was diagnosed with high grade synovial sarcoma of my right pelvic. I had 8 surgeries in 6 years with high doses of radiation. I had a 5 year old daughter. I am now 62 years “young” with a beautiful 3 year old granddaughter. While I am now dealing with late onset radiation induced lumbar plexopathy, I am living my life to the fullest and am moving forward. I have been graced with a wonderful life and am blessed to have great doctors and a strong support group around me. While there are days when it is difficult to walk as the muscles in my right leg have atrophied I am so thankful for each day of can put my feet on the floor and take those steps forward. I do not allow the word CAN’T in my vocabulary. I CAN and WILL keep moving forward. Bless you for sharing your story. Keep moving forward Gracie
My son had SS in the neck area too and his surgery and treatment are similar to yours, except that they knew it was SS before the surgery. That was 3.5 years ago.
Thanks Grace.I had synovial s in my neck 19 years ago.I never seem to be able to forget about it.I have tremendous problems with swallowing ,talking,etc...I'm doing well but sometimes my mind gets the best of me and I still get scared.I'm a Christian so my faith keeps me strong.It's those awful moments that creep up in my mind sometimes.Anyone else have this?
Fear also gets hold of me once in a while. I have applied a variety of techniques to get rid of it. The most difficult is when it comes at night. In that case, I found that mindfulness meditation helps. The idea is to empty your mind by focusing it on the sensation coming from different parts of your body. It could be the sounds captured by your ears or the pressure of the sheet on your toes and so on...
beechreader said:
Thanks Grace.I had synovial s in my neck 19 years ago.I never seem to be able to forget about it.I have tremendous problems with swallowing ,talking,etc...I'm doing well but sometimes my mind gets the best of me and I still get scared.I'm a Christian so my faith keeps me strong.It's those awful moments that creep up in my mind sometimes.Anyone else have this?
My case is very similar to yours, had a 10.5 cm tumor in my Neck,also can`t use my left arm ,have eating problems and dizziness will remain with me for good. But thats 2 years now since my op and no sign touch wood.
There is hope always... 19 years clean .6 cm synovial in my neck.Very little options back then. Surgery and agressive radiation.I was 33.A lot more information available now.
