So glad to hear you're doing so well! I hope your trip to South America is everything you dream it will be. I'm so excited for you! I'm going to have to ask my surgeon why some people heal so much faster than others. I'm 2 months out from my surgery this week & did a 15k running (jogging for me!) event yesterday & had to stop & walk several times because my throat was swelling closed, & I couldn't breath. It did relax & I was able to resume jogging but it was very annoying. It sounds like you never went through the throat swelling issues. Maybe you just have amazing genetics!!
Charmion, It is so good to hear that you are doing so well. Your story has been very inspirational. I only hope to stay half as strong as you sound! We are heading from DC to Pittsburgh tomorrow to see Dr. Snyderman for the first time. He has a lot of experience with ES. If anyone still on this support site has gone to him, it would be great to hear any first hand experience. Feeling normal sounds great. Thanks again for telling your story!! Susan
New here and looking into possible surgery. Thanks for your update on post-op. I bet that scar will heal in no time. I recently had half my thyroid removed and PT did some Kinesio (sp.) taping, and it's only been three months.. can hardly see a scar. Keep updating, and thank you.
It is now a little over 2 weeks post surgery. Though I didn't plan on an update until returning from my trip, I think it's important to mention in the last week I've had almost 100% relief of throat to ear pain. It has been amazing! No one can even see my scar already.
However, back to normal activities is not exactly how I thought it would be. Running has been ok, as well as yoga and biking . . . but not at the same level that I was.
It seems that lower neck pain has set in now (at the base of my neck where the CT shows some ossification--bone spurs). I wonder if anyone else has experienced lower neck pain after this surgery--it feels almost as if major nerves are being pressed along the back of my neck. So I've started taking Celebrex again, which of course relieves that pain somewhat but is not a long term solution. Any advice is greatly appreciated!
Thank you, I sincerely appreciate the support of everyone on this site . . . it has been the only place where others can understand this issue. And when I see others posting questions and advice, it really helps validate the pain and fear that we have all faced.
Emma has had problems with bone spurs- perhaps you could message her for advice? And I think there was a discussion about DISH a month or so ago- that there could be a link with ES. You could look up that discussion, or google DISH, although that might frighten you a bit!
I get neck pain from a slipped disc, with some pain from pressure on nerves; I've had physio and exercises to do which helped, and use a spikey massage ball to relieve some of the muscle knots I get in that area- I know you have something very different, but that might still help?
Hi, I would try to just put DISH out of my mind. Although it is real, I really don't think it is probable. An xray would solve that issue. I don't like to think the worst. My neck hurt and still does. It hurts down below the neck towards the shoulder right near the joint to the upper trapezius. Generally between the neck and the shoulder just between the area where a woman's bra strap would normally land and the bottom of the neck. My doc says it is a trigger point. I can't take pain meds, so I tried some Flector patches on the spot. They are expensive prescription NSAIDs because I cannot take them orally. I had to use them all the time and I would cut them in half. Massages helped, stretching helped, dry needling helped, therapy, but none stopped the pain. I just tried two more things, my doctor gave me an injection into the muscle. It seems to be helping. I also bought a Deluxe Clavicle Support from FLA orthopedics. I got it on Amazon about a week agon. It is latex free. I have been using it everyday when at home. I don't know which has helped most, the injection or the clavicle support or a combination of both and the therapy exercises, but I will say the clavicle support has made me aware of my posture. I had it for 2 days, and went to a brunch( not wearing it), one of the first people I met mentioned that I was standing at military attention. That was Saturday, I am now feeling better, but I have also spent 3 months 3 days a week doing very simple core and balance training and strengthening, my shoulders, back, core. I am not very strong and I really needed everything to be simple, mostly in a prone position. I have been getting stronger. I am now doing both my neck and shoulder therapy and alternating with my strengthening and core routine and trying to walk about 2 miles every day for exercise. For the first time in several years, I am feeling some progress. I think the surgery position must have a way of aggravating the neck and shoulder, because I have had that pain since my surgery almost 2 years ago. Then I had another suregery that put me on a walker for a few weeks and my neck and shoulder went into horrible objection.All that is much better since my constant rehab attempts. I do not know if it will go away, but next thing will be a shoulder and clavicle MRI if I don't continue to feel strong. Then I will advance to the neck doctor as the final thing. I tend to try to pinpoint the pain before going to the doctor. I am sitting and standing much straighter and my rib cage and back and core muscles are sore from being used. I think I am developing some core muscles and I am hoping that will all help. That is one of the reasons that I am not keeping up the spreadsheet although, I got on here to start compiling some names to send to Heidemt so she can put them on the spreadsheet or Christian22 who are helping. Good luck all.