Seen Dr Karam for my ntos last week, he’s determined to find me a surgeon to do my eagles, hurray someone on my side, he’s going to do a venogram to see the extent of the compression and has made me an appointment to see Dr Cha, who may be able to help me find a surgeon and give me more coping mechanisms whilst I wait, finally starting to move forward again, fingers crossed they find someone, my insurance won’t cover out of state surgery
Millymay,
Im on the VTOS and NTOS merry-go-round myself and had eagles surgery. Im glad you are getting a venogram done as it will be beneficial and that you have a doc to advocate on your behalf. I’m curious what Dr. Karam suggests for your NTOS after you have the venogram. I have significant venous compression (subclavian vein) and the one TOS guy I have consulted doesn’t feel it is a problem because the compressed veins will “reroute” themselves. Im getting a 2nd opinion.
Im not sure what insurance plans are available to you ie: employer based, marketplace, or private. Often you can get a plan that does allow for travel out of state…these are usually PPO plans though which normally are higher in premium. Since open enrollment is coming up, you may want to look into choosing a different plan.
Good luck on your Eagles journey and keep me updated on your TOS stuff.
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I’ve been off work since October when things went drastically down hill for my health so I’m on a state care plan, so I can’t change it, Dr Karam offered to do surgery for me but I feel most of my symptoms are related to the eagles so I want to see how I’m doing after that surgery before I decide to have tos surgery, eagles is a little less invasive, I also heard that veins can reroute which may be why I’m feeling 70% better than I was last October it’s been slow progress but the headaches are constant and sleeping is terrible, good luck with your journey also I will let you know my results and what he says is next .
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I understand. State plans are very limiting but it is good you have a doctor to advocate to help get Eagles surgery. There is always a way to get an exception made to medicaid insurance just keep fighting for what you need and want. Lucky or not, I decided to take SSA retirement and get on medicare. Feel pretty disabled by this and find it difficult just to keep up my yard and do much with my arms.
I took the same approach. Did Eagles surgery first knowing it wouldn’t be 100% cure.
They wont even offer me (yet) TOS surgery as it is a surgery of last resort. I had rotator cuff surgery in 2012 on this side (right), severe osteoarthritis in elbow, new surface tears in the shoulder, vertigo, sudden mild hearing loss, mild (supposedly) issues w C5-C6…all kinds of symptoms in arm and neck. I have ehlers danlos - connective tissue disorder and have a long history of compression due to scar tissue. Recent scan does not show rerouting of the subclavian vein. I wonder if there is a mass of scar tissue compressing the vein in the area whether it can reroute itself? This will be a question for my 2nd and 3rd opinion.
Ive been dealing with chronic headaches for decades and run the gamut in treatments and feel for you. Long history of neck instability and TMJ. I do get quarterly botox in my temples and neck which is somewhat helpful. I generally don’t do medications but do take .25mg of zantax at night for sleep. Everything is worse when I don’t get enough sleep or it is disturbed.
I hope the Eagles surgery gives you some relief. It’s good to have a strategic plan when approaching this and have realistic expectations. Look forward to hearing how you progress.
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Pleased at least that you have a doctor on your side! Hopefully between him & Dr Cha you can find things to help- whether that’s medication until you can get surgery or whatever…I hope that your venogram shows definitely what’s going on, let us know how it goes 
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You have a tough health situation @Millymay! It is exciting that you have a well known doctor on your side & as your advocate. I hope he’s able to find someone to do your ES surgery ASAP. I’m so sorry for all you’re dealing with.