Sharing of info

Good morning. Sutures finally out! NP at Hepworth’s thinks I’m having pressure fluctuations so am starting spironolactone to help with IH.

I looked through terms of service but I wanted to ask whether or not I’m allowed to share the names of ES literate doctors posted here to others not on this forum?

There are, in my fervent belief, a LOT of people diagnosed with MECFS that very well could have eagles/pseudo-eagles. If you know about MECFS- it’s kind of a garbage can diagnosis; one often made by primary care docs without any actual work up.

Wanted to ask before I took any action! I have encouraged a few to join this forum, but some patients are just so overwhelmed.

Thanks in advance!
elke

We have a list of doctors familiar with ES in the Doctors Info Section; it’s great to have new doctor names to add to our list, but we do need to know that they’ve done at least one successful surgery on a member. Have you had a look at the list, maybe the doctors you know of are already on there? And for legal reasons we do stress only positive comments can be posted about doctors. If doctors are aware of ES but haven’t actually performed the surgery, we can always make a note of that as it could be useful for people who are looking for a diagnosis.
If you feel others you know of could have ES, the best way to get a diagnosis is through having a CT scan evaluated for ES; the people you know can always read the discussions & the info without actually joining, so encourage them to have a look! As it’s a peer to peer support group for ES specifically, we don’t need an ES diagnosis to admit people to the forum, but do need people to have symptoms.
Glad that you’re making progress with your treatment!

Hi Elke,

Great news abt the progress you’re making & abt Dr. Hepworth’s intervention to help w/ healing. I hope the medication works quickly & effectively.

Since the info for the doctors on our list is public i.e. available on the internet, I think it’s fine for you to share their names. Be aware though that some are much more experienced than others. At the top of the list are Samji in CA, Milligan in AZ, Hepworth in CO, Cognetti in PA, DeLaCure in NYC. Axon in the UK.

I know there are others but these particular doctors’ names are seen w/ some frequency on our forum.

Awesome thanks to both of you!!!

elke

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Does anybody have a count on number of successful surgeries for ES that these Drs have completed?

well, Dr. Samji told me in February he is 450+.

He also does these surgeries weekly along with other types of neck and throat surgery. A certain % of practice is cancer related. When making inquiries, you may want to ask what % of their practices do they focus on on specific medical conditions. Most of your experienced ENTs who do ES surgery have some focus in cancer of the throat and neck.

I like that part. Just trying to wrap my head around flying there and staying there for surgery and recovery. Don’t know how long that would be. Don’t know what COVID 19 is like there either. Any input is appreciated.

Well, you know you have to stay 7-8 days. I flew in alone and had the help of another local ES patient who took me to surgery and picked up. It wasnt my original plan. I had a friend that was supposed to go and backed out at last minute. If you have a friend to go with you, you will have no problem handling this.
If you want to do deep dive into COVID data, go to Santa Clara county public health website. I think generally cases like everywhere have risen. Southern CA in certain counties have some higher numbers. Same goes for some SF surroundingcounties. This is why I suggest a red eye in when flight less populated and stay away form SF airport. Im more worried about the flight with more people on it. If and when I fly in again, I will be getting a face shield along with mask to wear on flight.When I flew in before, the airport was a desert, only 5 people on the plane. Ive heard flights are busier these days and that makes me nervous. Once on the ground, if you rent your own car (and sanitize yourself) you can control your movements and limit your contacts.

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I was very comfortable at my hotel since I had almost a whole outdoor wing to myself. I would even open my door and let the sun in for the afternoon and take walks outside, then back to lay in bed. Watch tv and nap alot. I had a kitchenette with food and drink stocked in advance but did venture out for to go food. The hotel people were super nice and even brought me a vase of roses from the garden. It was much easier than I thought.

Hi eastmas1 -

Snapple gave you great info but I will add that many people who come to see Dr. Samji stay in an Air BnB for the week they’re here. This can be more cost effective than a hotel though Snapple got a very reasonable hotel rate for her stay here. There are numerous people who rent whole houses or have cottages behind their homes so you have your own place to stay i.e. you’re not sharing someone’s house w/ them.

I live in the Silicon Valley (Santa Clara Co.) area of CA, & in spite of the “increasing COVID rate”, I don’t know anyone who has gotten CV. I have many friends who lead busy, active lives & are out & about. I do not feel threatened living here, but I acknowledge that everyone has a different comfort level w/ this. I am 63 so also in that more “vulnerable” age group.

Thanks. Renting a cottage sounds like great option with the COVID-19. I missed the note about her hotel and how long she had to stay.

Sharon Eastman from my iPhone

Isaiah_40_31
August 9

Hi eastmas1 -

Snapple gave you great info but I will add that many people who come to see Dr. Samji stay in an Air BnB for the week they’re here. This can be more cost effective than a hotel though Snapple got a very reasonable hotel rate for her stay here. There are numerous people who rent whole houses or have cottages behind their homes so you have your own place to stay i.e. you’re not sharing someone’s house w/ them.

I live in the Silicon Valley (Santa Clara Co.) area of CA, & in spite of the “increasing COVID rate”, I don’t know anyone who has gotten CV. I have many friends who lead busy, active lives & are out & about. I do not feel threatened living here, but I acknowledge that everyone has a different comfort level w/ this. I am 63 so also in that more “vulnerable” age group.