OK, I have debated about posting this pix but it is just too darn funny not to put some humor on all this. BTW - I didnt get any drugs yet in my IV when this pix was taken.This is me getting rolled out of pre-op to go into surgery for IJV decompression on 4/22. Isaiah was there to keep me busy pre-op and I cannot thank her enough…she was at my other styloidectomies (only) in 2020 and driver as well. We had great fun in pre-op doing fun things we shouldn’t. 
Ive been lurking around on and off since 2019 when I first started on Living with Eagles forum and it has been a godsend. I hope to contribute more in the future. Isaiah and Jules need sainthood for all that they do for patients. If you all dont know, they spend hours daily keeping up with posts and helping patients.
I laugh every time I look at this picture! Thank you for posting it. You’re right - humor is the best medicine!! I enjoyed our time together. 
You’ve also contributed enormously to our forum, @Snapple2020. We appreciate you & all the knowledge you’ve shared & continue to share. 
@Snapple2020 Oh my gosh, you are so adorable! Totally agree about @Isaiah_40_31 and @Jules, they are the best!
Love this pic 
Great that after all you’ve been through & all the surgeries you’ve had you can still laugh, good for you
And thanks for your lovely comments, you’ve been so helpful on here too, & @Chrickychricky
Love this photo!!!
It certainly brightened my morning 
All the best with your recovery!
This is great!!
Thanks everyone! I figure what doesn’t kill you makes you stronger! I have an AFTER photo that Im debating whether to post…of course Im high as a kite and generally look pretty darn happy. 
I figured instead of hijacking others threads I should try and start my own thread so others could know what I have been thru and ask me questions that might help them.
I recently hired a vascular surgeon as a consultant to make sense of all my other potential vascular compressions I have. To start, I have Ehlers Danlos - Hypermobility (hEDS) and had 2 whiplashes around age 20. I have had neck issues all my life since that point but also had a history of throat & sinus infections when young and had my tonsils and adenoids out at age 17.
Because of Isaiah, and our shared DX of hearing loss, tinnitus, and menieres since my styloidectomy in 2020, she encouraged me to look further into IJV compression, Im glad she did. I saw PA in the fall, got the CTV and made in person appt in early Jan where I had US of head and neck that confirmed IJV compression. In Dec, I saw an EDS specialist whom encouraged me to get checking for vascular compression in my abdomen and pelvis due to left flank pain. Mind you this appointments take months before you are seen and I had to make flight plans, etc. I flew to St. Louis to see vascular surgeon who did US which indicated Nutcrackers and May-Thurner compression (this one is on back burner) a few weeks later I had an appointment with a thoracic surgeon for eval on Slipping Rib syndrome (SLS) - common in EDS. He did see some rib issues but also saw MALS compression anatomy. Just what I needed, a new DX. I then got the go ahead and scheduled IJV surgery. 1st things first. When I had my surgery, I also had my daughter checked (US and CTV) and she too has pretty significant IJV compression and will need surgery. She also appears might have Nutcrackers vascular compression, CCI and CFS leaks - she has severe POTS/MCAS. This is why I hired a consultant to review all my records and scans (and hers) as its a bit overwhelming to sort all this out. Ill post more later on all that. Talk about a journey…or more like an odyssey. Thats the first chapter or one of them. Generally Im recovering pretty well but my left side at base of shoulder is really tweaked out and the jawline is not happy. Right side is doing very well. I have gone from ice to heat and doing acupuncture to try and calm down the nerves on left side. I cant wait to get a massage next week. My shoulders are tight. Ill post details of OP report next time as the work was extensive on left.
Good that you feel you’re recovering well, I hope you can get your shoulder & jaw sorted soon… must be so hard to know what to deal with first, I hope that the consultant can help you work that out for you and your daughter
Thank you both for all you do!!! And what an awesome picture. Either of you care to meet me in NC in July to keep my laughing before Hackman goes into my neck? Lol
Do you have anyone going with you to help you post op, @wendy5? I’m glad you’re surgery is coming up in not too long. 
Hi Wendy,
My daughter is going to NC with me. Surgery 7/13.
I’m nervous about the swelling from bilateral but everyone heals different. I was going to ask if you happen to remember anyone in the group who had burning roof of mouth that went away after surgery. There were a few people on FB who have burning and also had Eagles and the surgery didn’t take the burning away.
It would be great to actually a see a success story with my symptom. I’m sure the lump in my throat will go away and hopefully my head pressure as Hackman did say my jugular on the left is partially flattened.
How are you??
There have been some discussions about BMS on here, I think that doesn’t always seem to go I’m afraid…some members were trying LDN, I’m not sure how they got on, have you tried that?
Double styloidectomy surgery update - General - Living with Eagle
Burning mouth - General - Living with Eagle
The use of low-dose naltrexone (LDN) as a novel anti-inflammatory treatment for chronic pain - PMC
Hopefully the feeling of the lump in your throat will go away & your head pressure too…Will pray for good results 
Sounds like a road trip Isaiah!!! Time to get an RV and tour the country and meet up with patients. 
Thanks Jules! Im slowly but surely plodding thru it all. As you know, things take months to achieve in the medical systems.
Now I know how I should spend my retirement…I’ve been trying to figure that out!
It is a funny picture! Best wishes and prayers for you!
I totally agree about Isaiah and Jules being awesome! I will always be greatful!
Hi @MusicGeek & how are you doing? You helped lots & gave us good info when you were on the forum too, we’re grateful to you!
I second what @Jules said & have thought about you recently. Should have sent you a message to let you know. Are you back to singing & playing your sax?
Katie Screen Shot.pdf (1.3 MB)
Its so nice to come back and visit. It is like having an extended family. So supportive.
I forgot this was still there (attachment) but I will share it for educational purposes. Its a few screen shots annotated from my daughters CTV we just had. It unusual presentation and significant (80%) compression on one side at C1. She has SEVERE POTS.