Hello again!
I am trying to determine my next destination in diagnosis.
Does Dr. Hepworth in Colorado perform both the ES / Styloidectomy and Stenting surgeries?
Is there anyone in this group that have had Chiari? If so where did you get diagnosed and or treated and what would the differentiating symptoms between ES and Chiari be? They seem to overlap in symptoms in a big way.
Thank you,
G
We have had members in the past who’ve had ES & Chiari, if you use the search function you can see the past discussions, not sure if any of our active members have. Did you know that Ben’s Friends have a Chiari group too?
Dr Hepworth is very good at looking at the overall picture with vascular ES, does lots of testing etc, and does balloon the veins to re-open them during surgery, not sure about stenting though, I think usually they see if ballooning works first, but hopefully some of our members who have had surgery with him will chip in.
JULIES-
Thank you for responding. After I wrote that last message I searched the topic. I apologize for being to lazy… sometimes it just hurts to stand at my computer so I just fire off without much thought.
I really am grateful for this website. It has really helped in many ways. I like the format too!
I called Dr. Helpworth’s office. They need a referral which I already know will be denied. It does not matter if I am self pay or not. His office would not even do a consult with previous imaging… I understand, I am just frustrated.
Thank you again,
G
Goose,
I’m sorry that your initial contact with Dr. Hepworth’s office felt a bit negative. You will find that most, if not all, of the doctors on our list will require that you send them a CT scan with or w/o contrast & the radiologist’s report before you can schedule a consult.
I implore you to go after the referral you need even if it requires seeing several other doctors. Dr. Hepworth is worth the effort. I understand you’re very ill from the symptoms you have. Do you have a friend or family member who would advocate for you, help schedule appts, & attend appointments with you to be your advocate when self-advocating is too exhausting?
Getting a diagnosis or diagnoses can be a long & torturous journey but perseverance pays off.
I appreciate that you did search for answers on our forum to the questions you asked in your first post. If there is ever anything you can’t find please let us know. Also, it’s great that you like the format of this forum as some have found it difficult to use. It took me quite awhile to figure it out. 
HOORAY for your computer skills!
Hi.
My experience with Dr. Hepworths office was not negative at all. The office staff that I spoke with was more than kind and timely.
I am sorry I was not clear… my frustration is with the insurance process in general… I understand the necessities of referrals and imaging…
Thank you so much for all of the information… 
G
Got it! Thank you for clarifying. Sorry I misunderstood or misread your intent.
So your issue of is more an insurance problem than getting a doctor referral?
Yes insurance is the speedbump. Out of state is the issue.
Thank you
G
No worries if you’re not up to spending long on the computer searching the site, as @Isaiah_40_31 says let us know then & we’ll try to help…
@Snapple2020 has been a really good source of info & advice on all things insurance if that’s an issue for you (I’m UK so can’t help at all with that!), here’s a link to one discussion recently about seeing Dr Hepworth out of insurance, there might be some helpful info or you could message one of the members directly to ask:
At what point do you stop trying with a specific doctor? - General - Living with Eagle
I don’t know if the info about advocating for yourself might be useful if you’ve not read that:
Making a First Appointment - Patient Self Advocacy / How to Self-advocate and Be Heard - Living with Eagle
I know that some members have been able to appeal to their insurance on the grounds that there are no specialists in their state dealing with ES…maybe one of the other US members can chip in with info for you…
HI Goose,
Feel free to contact me privately and hopefully I can lend a hand on all things insurance. Sounds like you are in an HMO ie: cant get a referral or imaging needed? You may need to self-pay for a local doc to give you the referral (Office visit /consultation) and/or imaging order you need to get into door with Hepworth? Don’t tell them you have insurance either.
I have EDS, had ES surgery but not Chiari. I have close friend who had been operated on for Chiari twice (Batzdorf @UCLA). I personally have seen Dr. Batzdorf for issues related to neck instability and scar/nerve issues from EDS. Chiari symptoms can overlap w ES but I would consider Chiari diagnosis the higher priority. Not sure what your circumstances are.
Im not sure what end of the country you are on. Im on west coast. The go to Chiari docs on east coast are:
I have removed one doctor from the list because he has a past record of using unethical medical practices & lost his medical license for awhile a few years ago. We do not endorse him on this forum.
My husband had a revision surgery and ballooning with Hepworth. After that didn’t resolve issues he is now sending patients to Dr. Kyle Fargen. He has done more stenting than most Dr.s. Like H he will acknowledge symptoms and treat when others won’t unles “specific numbers”. We were very pleased with his care also. He also used to do Chiari surgeries so knowledgeable about that. My husband has a mild one with jugular still blocked in two areas even after revision. He was not a candidate for stenting. He does a retractable stent during venogram to see if it will work before an invasive procedure. He was also very honest that blockage was in area to dangerous. Can cause nerve damage or move.
Thank you for sharing your experience w/ Dr. Fargen @Samom.4. I am so sorry your husband couldn’t have the stent surgery. Is there anything else that can be done to help him?
Good to hear that you & your husband found Dr Fargen to be helpful, but very sorry that your husband’s surgeries haven’t helped with all the symptoms. Is he on blood thinners?
He has been on I think 5. H is using a different one now than he used to start with. He has found one to be causing some allergies. (Don’t want to give names) With each different one he knew how they work differently for different situations. Totally trust him. He even tried milk thistle for awhile. It works like acetazolamide without the negative side effects. He keeps on trying to find something that works.
I am praying that your husband will find a way to get relief. The upside is you have Dr. Hepworth on your side doing medical “battle” for you. I know he’ll give this his all!
Hoping you find the answers you are searching for and have some relief soon!!
3 months after surgery and I don’t regret having the procedure at all!!! It definitely made things better!!!
Thank you for that update, @JPB! I’m so glad things are better for you now. You sure had a rough start to recovery!!