I have been reading on this sight on and off for a little over a year now and have found solace in it throughout my time dealing with ES. So here is my story in hoping to get even more answers to my issues and upcoming surgery. I was also able to change my CT into a 3D model per the website’s instructions and will post them on here as well. (Sorry so long!)
Ok, where to begin. Outside of years of pain from my ear down to my throat including molar like pain and a clinching jaw with muscles so tight I could hardly open my mouth amongst other things including neck, chest and other pain seemingly associated with ES. Over the years I saw roughly 5+ doctors without really getting anywhere. Many CT scans and MRIs with everything from abscesses to possible thyroid cancer were discussed as possible diagnoses. I had some good and bad days.
Then, October 2015, I sneezed and ruptured my throat. I coughed up some blood and had a severely painful throat. The night of, unknowing of the damage, I used my CPAP machine which filled my soft tissue up with air around my throat via the puncture. My neck felt like rice krispies. Went to the local clinic and they rushed me to the hospital. Spent five (5) days in the hospital fasting and being hammered with antibiotics. Luckily I did not get an infection and the air finally absorbed into my body and a few weeks later was back to normal. Nobody ever figured out that my styloid did the damage until roughly a year later when I was diagnosed with ES and saw the spike shaped styloid bone where the puncture was located.
After that, my amazing dentist made me message him symptoms, as I had them, to try and help determine what was going on and what to do next. One day I messaged him stating that I was having issues swallowing and a light bulb went off. He went straight to my cone beam and diagnosed me with ES within 5 minutes. He referred me to a local ENT got me setup with physical therapy while I locate doctors to try and find a surgeon. If you have the tightness in your jaw or similar symptoms please do therapy as they loosen your jaw and face muscles allowing you much relief. Physical therapy has been a blessing in the meantime. It allows me to continue eating and functioning and is keeping my mouth looser. Since then I have seen several doctors in Mississippi with none ever dealing with ES much less performing the surgery.
Luckily, through some of my family connections I was able to get an appointment with Dr. Annino at Brigham and Women’s Hospital/Harvard Medical in Boston, MA. On May 10, 2018 I finally meet with Dr. Annino and after a short visit with him he thought surgery would help. He only does external surgery due to the decreased risks. Hard not to trust a Harvard Doctor and never thought I would see someone so well trained. He has done ES surgery many times and seems to be very routine to him along with cancer in the surrounding areas.
Surgery is scheduled for June 5, 2018, in Boston, MA, with a one night stay in the hospital. I am curious about other out of state surgery patients and have a few questions:
When they were allowed to fly back home?
Was anyone able to do follow ups in their home states?
How long before returning to work on average? I understand that everyone is different and I am slow to heal but am trying to at least have an idea of what to expect.
Nice pics, JonK! Impressive styloid! The 3-D pics are always so confirmational as to why we feel the pain & have other symptoms of ES.
I didn’t have surgery out of state but will answer your questions based on experiences of at least some of the members on this site:
The surgeon usually requires a follow-up visit w/in the first week post op. You will need to confirm this w/ your surgeon’s office so you can plan to stay in town till your follow-up visit. Unless you’re having surgical complications, you can plan to fly home the day of your post op visit. If no post op appt is required, usually you’re fit to fly about 3 days post op (bearing in mind that days 3-5 are the period when you reach max post op swelling & should adhere to your pain med schedule during that time). Generally a final follow-up occurs about 1 month post op, but if all is well, that’s an optional visit & could probably be done at home.
As far as returning to work, some people can go back at the end of the first week post op. For others, it’s 2-3 weeks. It just depends on your pain, energy level & how physically demanding your job is. If you have a job that requires a lot of heavy lifting, a modified work schedule for the first 1-2 months is best so you don’t strain your wound site while it’s healing.
Having your surgeon prescribe steroids along w/ the pain meds post op will help keep your swelling at a lower level which can help speed healing. Additionally, being patient w/ your body & not jumping back into your daily routine too soon will also help hurry recovery.
Hopefully others will write their experiences to you as my response is generalized.
It certainly is a very spikey spike, one of the pointiest I’ve ever seen!
Regarding work, it does depend on what sort you do- some people with desk jobs have gone back after a week or two, if you do much talking with your job it can take longer, & obviously the same with any physical work, lifting etc. Given your healing problems, I would allow longer off…
Hey Mac. Just spoke with one of my therapist and she said its called, “Trigger point release to buccinator, medial and later pterygoid muscles and others.” Basically they stick their fingers in your mouth and pinch your muscles in order to release them and offer much relief. Also offering some basically skin rolling to your outer cheek and jaw to further help loosen. It hurts but is soooo worth it!
Hey Rob. My dentist did an estimated length of additional growth or from what he could tell and it was 42.61mm. Thinks it probably longer due to angles etc. This image was done during a routine checkup over a year ago and went back to it when he thought it might be eagles. Not sure how fast they can grow but it sure feels much longer!
Thanks Mac. Therapy is definitely keeping me much looser and functioning fairly normal. Just ready to get this thing out! Two weeks from today!
BTW: Make sure that your insurance covers TMJ as mine does not. I did not find that out until I got the bill. They ended up having to change it to neck/back in order to make it work, fingers crossed. Just some advice to avoid all the headache I am having with insurance and billing right now.
Can I ask how long your Styloid is? Did they give you the length?