Good info, hope it helps your daughter 
@Isaiah & 2stuuke - Just received a message today. It appears that Dr. Patsalides contacted a Dr. Massenburg in turn contacted a Dr. Dev Kamdar. This is in regards to ES surgery. I went online and it looks like he has some mixed reviews. Just wondering if anyone has heard of him. He as well as Dr. P are in the New York area.
1 Like
Thanks for the suggestion. I just started looking into histamine blocking supplements. I’ll definitely give Seeking Health a try. A few years ago I dropped 30 pounds, had digestive issues and felt like my throat was closing up. I went to a GI doctor and had an endoscopy and colonoscopy done and then he just dismissed it as minor inflammation. It’s so hard finding doctors that understand we’re not going to have normal issues or normal answers to our problems.
2 Likes
I’m not familiar w/ either doctor &a quick search shows you’re the first to mention them. Just remember that no doctor has a perfect track record no matter how good (s)he is. They do their best but can’t predict how a person’s body will react to surgery or how it will heal.
It would be worth it to meet w/ Dr. Kamdar to ask the questions we recommend when interviewing a potential ES surgeon:
How many ES surgeries has he done?
Intraoral or external surgery? (We prefer external as we feel it’s a bit safer but both types of surgery have proven to be successful)
Outpatient or inpatient?
How much styloid is removed? (removal at skull base is best)
Is the tip of any styloid left behind smoothed off?
Is the stylohyoid ligament also removed if calcified? (complete removal to the hyoid bone is best)
It’s always worthwhile getting a second opinion when it comes to this surgery. I had mentioned Drs. Hackman or Cognetti as other options for you to consider though you would have to travel to see either one. Dr. Cognetti does video consults for a fee so that could save you a trip.
2 Likes
I’m in Massachusetts, I think there were a few doctors in Massachusetts on the list. I’m not sure if anyone has personal experience with any of them. I did contact Dr. Kamdar’s office today in NY. (3 hours away) Distance plays a role but I am willing to travel. I saw Dr. P in NY. I asked the office if Dr Kamdar would do a zoom appointment. They told me he didn’t do that. I don’t see any reason to drive all the way to NY to ask him the questions. Maybe he will do a telephone interview? I definitely believe in 2nd opinions. I read somewhere that Dr. Hackman goes deeper something like that then Dr. Cognetti. Not sure if I used the correct description. Also I have to see which doctors are on my insurance preferred provider list. Well as it stands I have some leg work to do. Thank you Isaiah and if anyone else has any advice please don’t hesitate to let me know.
1 Like
Stuuke,
I did a deep dive into my old records and have been thru the same as you for decades. Mild inflammation, no ulcers, etc. I have a very touchy stomach and can hardly take any medications even some vitamins upset my stomach. Ive also known I have a small hiatal hernia. My EDS hand doc referred me to a thorastic surgeon who has speciality in esophagus related issues. That he was seeing higher incidence of throat cancer in EDS patients. I would never had known to go to have this checked out. Low and behold, my GI junction at stomach is wide open and doesn’t close and the cells in stomach are growing up into my esophagus…it considered pre-cancerous (pre-barretts). I happened to read an article on studies for pre-barretts monitoring at Fred Hutch Cancer Center here in Seattle and contacted them. Although that study is closed, one of the GI researchers agreed to see me, monitor me and tell me what I should do about this. I dont even see him until Sept and within 1 week he had requested and reviewed my biopsy slides so I have a good feeling about him already. I still haven’t gotten to the answers of why I have such a touchy stomach. Im working on that with my daughter’s SIBO doc.
Just as with Eagles surgeons, we have to seek out the right docs that have an interest in our particular problem. Standard GI’s that just scope people aren’t known to be very…well u get my drift. I suggest researching GI docs in your area that have a specialty in MCAS, SIBO and gastroparesis. Gastritis? Have you seen a nutritionist? They do recommend going on a LOW FODMAP diet to see if you having any offending foods causing digestive issues. I do suggest you get tested for SIBO as it seems to go hand in hand with MCAS.
2 Likes
Dr. Annino in Boston has helped a number of our members in that area. He would also be a great resource for you, @Bc2.
Thank you …
He is a preferred provider. I will look into setting up an appointment with him.
1 Like