Greetings, my story starts three years ago with a neck whiplash injury. It’s been a long journey. I’ve lost my job, partner, friends and family. I now live in a homeless shelter because I can’t work. I have crippling brainfog, fatigue and sleep disturbance. When I lift my head I can hear liquid noises, like pressurized squirting. Dr.Osborne in California diagnosed me with IJV compression/vascular eagles. I was getting nowhere fast in California and my symptoms were getting worse so I flew to North Carolina in hopes that Dr.Hackman could help me. Now I’m worried I should have got a referral for Fargen as he specializes more in vascular issues. I’m also worried I may also have CCI. Please offer some kind words or suggestions. I’m waiting on Medicaid. I’m thinking go with Hackman first as he’s fast, then go to Fargen or if needed? The adrenaline and brainfog have destroyed my life. I want to be one of the people that get better. It’s not fair I have to figure this all out.
You can use the search function on the site to look up members’ experiences with each doctor…
From what I’ve read on here, Dr Hackman is more experienced with ES surgery, and he does bilateral surgery so you would get it over & done with in one go, which in your situation would probably be helpful. Lots of members have had good results with him, some members have had surgery who had VES, if you get a consultation with him it would be worth asking about it.
Dr Fargen has done less styloidectomies, not many members that we know of have had their surgery with him, but as you say is a very experienced neurovascular surgeon…
I’m from the UK so can’t comment on Medicaid, I don’t know whether it would be possible for you to see more than one doctor with that? And I don’t know how long you’d have to wait for an appointment with him either, have you looked into that?
I think your plan of going ahead with a consultation with Dr Hackman is a good idea, see what he says & how confident you feel with him, then take it form there. It’s always a hard decision who you go with for surgery & obviously you don’t want to be needing a revision surgery!
If you are on facebook, the ES group is Eagle Syndrome Group and there is a Jugular Venous Outflow Disorders group. Fargen is talked about in both quite a bit. It looks like there is also a private group for his patients ‘#TeamFarJenn’
@KyleNeedsHelp - As @Jules mentioned, Dr. Fargen hasn’t been doing ES surgeries for as long as many of the other doctors on our list so is less experienced w/ them. He is a “stent guy” vs. doing decompressions. His specialty is stenting veins that won’t stay open. It’s my opinion that stenting a compressed vein w/o first fixing the cause of compression makes no sense. We’ve also heard on here, somewhat often, from members who sent their scans to his office & were told they’d hear in a month whether or not they’d get an appointment but never heard anything. That would frustrate the socks off me! It would be worth calling his office to see about a consult, but if you want to see a surgeon who specifically does styloidectomies & IJV decompressions, Dr. Cognetti in Philadelphia or Dr. Costantino in White Plains, NY, would be the two who are closest to you.
Again, as Jules said, I think meeting with Dr. Hackman & discussing your situation with him first, & even electing for him to do your surgery makes sense since we’ve got members who had IJV compression & who recovered from it once their styloids were shortened by Dr. Hackman. That could be your outcome, too.
Thank you!
Kyle,
The opinions of others are spot on. I met with Dr. Osborne too back in 2023 and I can tell you that he would not accept Medicare; Not sure about Medicaid. I also know that he wanted close to $50,000 to get the surgery done and also required the hiring of a private nurse.
I went out to NC early 2024, and finally had the surgery done by Dr. Hackman June 5, 2024. I went out their alone, but a good friend of mine was able to join me. Stayed at the UNC subsidized " SECU Family House at UNC Hospitals" and that’s a place you have to get referred to by the nurse or coordinator that works with Dr. Hackman.
I realize that you’ve been unable to work so I’ll tell you that my copay with Medicare was $4,658.37 for the surgery. Having said that, have you hired an attorney to apply for Social Security Medical Disability? If not, I highly recommend you EMail or call Cervoni Disability Law, PLLC, for a FREE CASE EVALUATION. info@cervonidisabilitylaw.com 703-241-2625.
Jewels and Isaiah are correct…Dr. Hackman is tops. I highly recommend you go with him Kyle.
Lastly I feel your pain. My own styloids were also caused from a whipflash injury caused by a high speed hit and run driver in Washington DC back in 2012. It was years of hell that gradually got worse. Now, 10 months after the surgery I’m doing much better but have other health problems associated with mold exposure as well as being rear-ended by an 18 wheeler on 9/11/23. TMI I know…but life happens, and their are people who do evil things too.
Christ Bless you
Thanks for that info @HappyBear , & glad your surgery helped, but not good with the other issues!
Thank you HappyBear, you’ve given me some hope. I appreciate all of you who’ve left supportive words here. Can’t wait to put this brainfog behind me. Life is a wonderful thing and I can’t wait to truly enjoy it again. This disorder has taught me that the most precious things in life are the seemingly small things. I pray I’ll get back to where I was before this terrible brainfog set in. I’ll continue pursuing Hackman’s help.
Further advice:
Prayer is good! I prayed a great deal and visited the Relic of St. Jude. “Treasures of the Church” is the organization that shows different relics (Upcoming Expositions - Treasures of the Church). Alternatively, look up a nun order: Religious Orders for Women - Catholic Diocese of Arlington
Call up one of their offices and ASK if they have any relics. Take a Cruxifix or Rosary or some other sacrad object and ask for it to make contact with any relics they may have. Pray to that St. for intercession. That is what I did…I prayed to St. Jude after finding out about his Relic in Los Angeles and also prayed the Rosary. I did experience a miracle on June 5th 2024 when the Virgin Mary appeared while I was in the operating table. I did NOT see Her; but I did feel Her and knew it was Her. The feeling was of the Holy Mother with perfect authority and power.
This disease has hit you for a reason and their is a lot to be learned from the experience Kyle including the suffering you’re going through. I suggest you offer your suffering to the Christ to do as He wishes. Don’t let what you suffer go to waste.
I’m so sorry for your suffering!
If you get Medicaid, it’s usually attached to your state, and it will be a hassle seeing anyone outside your state.
If you get Medicare, that’s a federal program and is much more flexible. Medicare comes automatically with disability, and it certainly sounds like you’re disabled. The process can take time, but sounds like it could be worth it for you.
@nnaeve - I didn’t know that about Medicare vs Medicaid. Thank you for educating me. I know @KyleNeedsHelp has applied for Medicaid, but it sounds like he should consider starting down the Medicare path for more diverse medical care opportunities.
@HappyBear - It’s good to hear from you & to know your ES surgery has made a positive difference in how you feel. I’m sorry you still have health things going on that you’re having to deal with. I hope you’re able to get the help you need so you have good recovery all the way around.
Thank you for your encouragement for @KyleNeedsHelp.
I used to be a disability examiner (the federal disability program that is run through social security). It can be a very lengthy process involving multiple denials and appeals. Once approved a person will receive money backdated to the date of the original claim. Often people end up getting a disability attorney who get their fee paid out of that backdated lump sum. It is true that people who qualify for social security disability get Medicare but (unless it has changed) that doesn’t kick in until after 1 year.
Thanks for that info @Chrickychricky , a complicated system!
I think the Medicare comes in 1 year after you apply. So if your application takes more than a year, you’ll get it right away.
I also highly recommend getting a disability lawyer invovolved. They are only allowed to charge a percentage of your payout, if you get one. The Nola Guide to Social Security Disability has lots of great Information.
There are two different types of disability, SSD and SSDI. As I recall, SSD is for anyone with a disability, and has no income restrictions. It will also pay you a monthly payout based on your prior earnings. SSDI is need-based. I know less about that, but I believe it can kick in when you’re exhausted your resources, as it appears klyeneedshelp has probably done.
I have had a referral to Dr Fargen since Oct 2024, It seems I may hear from the team this fall. (He takes two out of state patients a year) So there is some insight on scheduling. The wait is at least one year! So if you have another option for better quality of life, take it! I am proceeding with surgery through Dr Nakaji and hope for great improvement and maybe I wont need to proceed with the Fargen appt. Good luck with your scheduling
This is extremely helpful information about Dr. Fargen, @birdie1. Thank you for passing it along.
Wow, that’s a long wait, more like UK times! I hope that you don’t need to wait too long for surgery with Dr Nakaji, have you got a date yet @birdie1 ?
Im scheduled in a couple weeks! Dr Nakaji was hoping by doing one side it would help with the blood flow and help the symptoms for bilateral compression. But after the venogram we are finding there is no blood flow connection between the two sides. So I probably will need bilateral surgery. My dilemma is choosing which side for this first surgery??, My right side/arm is so messed up from thoracic outlet surgery last fall, that they thought would help symptoms, but instead has caused permanent damage. My right side is slightly more occluded, but Dr Nakaji said there is only a slight difference so he will do either side. I have pulsatile tinnitus in the left, I know that is just a minor symptom in the realm of the debilitating symptoms, but it sure would be nice if that went away. So start with messed up right side or hope for the best and do left? I only wish I wouldve found this site prior to proceeding with the TOS surgery. Dr Nakaji feels I may still need to see Dr Fargen, so I still have a long road ahead of me, but I am hopeful his surgery will show great improvement. fingers crossed
Very tough situations for you @birdie1! I hope the IJV decompression on the right, whenever it happens, alleviates/reduces symptoms left over or caused by your TOS surgery. We have seen TOS symptoms reduce in some members after the styloids/IJV compression are taken care of, but it’s not a guarantee just something to hope for.