Dr. Case refused Catheter Venogram

General
1

As those of you who have been following my case know, I had a left side styloidectomy in early December, with enormous relief from symptoms for about 10 days, after which all my symptoms returned. I had a follow up jugular ultrasound which Dr. Hepworth reviewed and determined that he believes I have an additional IJV constriction in my right transverse sinus (inside my skull). I do also have IJV compression at my right styloid, but Dr. H is concerned there is a worse blockage higher up. Dr. H referred me to Dr. David Case for a catheter venogram in order to determine whether or not there is in fact a constriction in my vein inside my skull.

I just called Dr. Case’s office, and apparently he reviewed the same jugular ultrasound report (as well as my CT and MRI scans, I think), and determined that “no neurosurgical procedure is warranted at this time.” I didn’t get a chance to actually see Dr. Case, his scheduling nurse just relayed that information and told me Dr. Case won’t see me.

With that response, I’m getting nervous that perhaps Dr. Hepworth is viewing my case through his own specialty lens and finding more IJV issues because that is what he is most familiar with, and is perhaps missing something else? Or is Dr. Case just far more conservative than Dr. H? Have any of you had a similar experience with both doctors you can speak to?

At this point, I don’t have many options other than to trust Dr. Hepworth, as no other doctor has been conclusive nor consistent in their diagnosis. Having experienced serious relief immediately after my styloidectomy, and having significant improvement in my symptoms by taking blood thinners, seems to indicate that I’m on the right track investigating IJV issues, but hearing from a neurovascular surgeon who Hepworth refers to that he doesn’t think anything is wrong doesn’t inspire confidence.

I have been seeing a different neurologist who believes I most likely have a CSF leak in addition to “possible IJV compression,” and found cysts all along my spine in a recent MRI. However, from what he himself has said previously, and my research, it seems that if I do in fact have serious IJV compression, then there’s no point in trying to address the CSF leak as any patches would most likely make my symptoms worse and/or fail due to high pressure caused by IJV compression.

Are there any other neurovascular surgeons in Colorado who understand IJV compression that I might be able to get a second opinion on the catheter venogram from? I have left a message with Dr. H’s office asking the same thing, but I don’t expect a real answer from then until my next appointment at the end of this month.

Is there any other kind of doctor I should be seeing to figure out if there’s a different issue going on? Or another ENT doctor familiar with IJV compression that I might be able to consult with? Unfortunately my insurance will not cover ANY out of state visits, so I’m confined to working with Colorado doctors at this point.

Thanks for reading. This forum really is a life saver. It is enormously helpful to be able to get info from all of you while figuring out how to navigate this labyrinth we call a health care system!

1 Like
2

What about Dr. Annest whom Dr. Hepworth uses as his assistant during ES surgeries? I would think he’d be able to give an opinion? Is the “neuro” part of the med degree necessary to diagnose a vascular problem deeper in the brain? If not, I’d consider Dr. Annest though I will admit, I have zero experience in this arena.

3

So sorry that you didn’t get anywhere with Dr Case, so frustrating! From what members have said on here, Dr H seems to be the most experienced doctor with vascular ES & many people have been travelling quite a way to see him…would the neuro who’s found the cysts & possible CSF leak recommend anyone to do a further catheter venogram?
Hopefully some of those who’ve had extensive testing with Dr H’s team can give you more info, sending you a hug :hugs:

1 Like
4

I received a voicemail from Dr. Hepworth’s office saying that since Dr. Case won’t see me, my only other option is to travel to North Carolina to see Dr. Fargan, or fly to Honolulu to see Dr. Hui. The problem is that my health insurance is Colorado Medicaid, which specifically states that they do not cover anything but emergencies out of state. Has anyone on here been in this situation? Would you mind sharing what it cost for you to pay out of pocket to see Dr. Fargan or Dr. Hui for a catheter venogram? Does anyone know if there’s a way for me to get the cost of out of state services like this covered by Colorado Medicaid?

And I do have to ask again, is there really no one else anywhere in Colorado or adjoining states that can do this procedure? I called the Vascular Institute of the Rockies, but the nurse didn’t think they do any work inside the skull, and informed me I’d need a referral from Dr. H just for them to figure out if they can do that or not, and for whatever reason Dr. H doesn’t refer to them.

5

MsBears, I’m kind of following your lead but it sounds like Dr. Hepworth is much more helpful in your situation. I had my surgery in September to remove my left styloid and repair a CSF leak in my sinuses and haven’t had any relief. Dr. H has referred me to Dr. Case for a venogram as well and I’m waiting to hear back from him. Hoping you find another path forward and get some answers. I do believe some doctors become fixated on “their thing” and sometimes that doesn’t always match up with what the patients issue is. Unfortunately that seems to happen a lot with specialist but if you’re lucky enough to find one that matches “your thing” then it works out great.

3 Likes
6

@Snapple2020 has posted some great information about fighting for insurance to cover a person outside of their coverage area - here’s one link that doesn’t have a lot of info but does suggest you can fight Medicaid to get the coverage you need since your situation does seem “catastrophic”, & if there are no doctors in your state who can/are willing to help you, then you have no choice but to go out of state.

If you click on the magnifying glass icon & type in: out of state insurance - there are a number of posts that come up. You may be able to get more information by reading a few of those.

I’m so sorry that Dr. Case wasn’t cooperative. So discouraging!!

2 Likes
7

Thanks for the link! I’ll have a look when I find some time.

1 Like
8

Well, it looks like I’m in the same boat. I’ve been waiting to hear from Dr. Case’s office since early December. Finally got a message today. “We have sent a letter to Dr. Hepworth to inform him that at this time your referral is not appropriate for our clinic. Please reach out to Dr. Hepworth to discuss other options for treatment.” And, in the mean time, I cancelled my scheduled surgery with Dr. Fargen. Which I would have had to do anyway, since I was supposed to go out there the last week of January, and my father passed away on the 21st. So now I am apparently back at square one. I was so hoping I could get the surgery done in Colorado by a doctor who was in network. I know Dr. Case has been very interested in what Dr. Hepworth is doing. But apparently they don’t see eye to eye on some pretty basic things.

1 Like
9

@Bopper, I’m so sorry to hear about your father. I hope you & your family can enjoy happy memories of your time with him so you can be at peace about his passing.

Well said - “Apparently they don’t see eye to eye…” I hope Dr. Hepworth & Dr. Case can have a heart to heart so Dr. H better understand whom Dr. C is willing to see or at least which problems he’s willing to help a patient with.

I’m so sorry this situation has thrown you & @MsBearshark into health care limbo for the moment & hope Dr. H is able to redirect both of you very soon.

10

Thank you so much. He was just two months shy of his 100th birthday. And incredibly healthy until he and I both got COVID. It’s a hard adjustment because he lived with me, and now it’s awfully quiet around here. But there is great comfort in knowing he lived a long and beautiful life. And he is reunited with my mother.

Very disappointing about Dr. Case. As my brother said, it would be nice if he would at least see me and give me his take on what’s going on with me. Oh well, back to the drawing board.

1 Like
11

So sorry to hear about your father, and I hope that you can make some progress on the doctor front soon. Sending you hugs and thinking of you :hugs:

1 Like
12

Well said stuuke.
“Their thing” is usually a box they don’t look outside of. Ive thought I have gotten close a few times only to be disappointed with the specialists Ive seen dismissing me or its “not what I do” or because the test results don’t support them during surgery…“its dangerous area to work in”…none have said it directly but I do think their is an age thing in there too re: in my case TOS surgery.

I too have heard the “no neurosurgical procedure is warranted at this time.” I just had that happen to me this week…luckily I have another appointment next week with another specialist whom I hope “hears” me or its “his thing”. Follow your gut MsBear. You know something is wrong. Take these opinions with a grain of salt and keep moving forward seeking the answers. I just keep turning over all the rocks to see what other docs are out there. Given you have all the cysts on the spine, perhaps a neurosurgeon whom is a spinal specialist may be of assistance to point you in the right direction?

I have heard mixed about Dr. Fargan. Someone recently flew out there expecting a similar procedure recently and didn’t get it after flying there. You should not have to go to Hawaii to get a venogram although Hawaii sounds nice. Its high season though and very costly there. There has got to be a place in Denver metro area to get a venogram. Keep in mind, Hepworth is referring to people he knows. There has to be others out there.

That being said, I had a heck of a time getting a catheter angiogram of my neck and brain in Seattle and that was with an order from my UCLA doc. It was so troublesome, I flew back down to LA to get it done. Im only using UCLA as an example, because it is a large educational based medical school and center whom performs these kinds of procedures all the time and has vast number of specialties all under the same roof. I suggest you seek out a big center like this. My friend in medicine always prefers the East Coast for a higher quality of care.(Boston, New York - John Hopkins, Brigham Young?) You might be able to set up a tele-health and send scans in advance for review and then pay out of pocket for consult? Often these big centers have financial hardship policies. You fill out a form and prove your low income and often they write off the cost. In that event, I might consider flying there with the possibility of getting the diagnostic tests during the stay? It’s quite possible you could get it all written off under hardship? I was able to do this with my daughter at Boston Children’s. We also got reduced housing for patients while we stayed there.

That being said, I am seeing more and more discrimination in the healthcare system for those on medicare and medicaid. I am having a harder time getting into see the specialists I need or want because I am now on medicare. This applies to medicaid even more so especially if you are a new patient. Practices are limiting how many patients they take even if they accept them at all. Most all now wont accept medicaid patients. Decisions to do or not to do a procedure behind the scenes can be being made due to your insurance. The healthcare system already had some of this going on but it has worsened due to COVID and I see it breaking down.

There is certainly a dance now with medicare and medicaid. Ive kinda figuring it out. With medicare, I am finding I have to pay cash for the some of the specialists I see now for expert opinions. These are the highly specialized ones that deal with complex issues which many of us have. It is best to say you are uninsured and pay cash sometimes to get the opinions you need. That cost can save you months or even years bouncing around to other doctors. Those opinions can support getting the care you need (with your insurance company) even if you have to go out of state to get the opinion. There is a set of hoops you have to jump thru. If you happen to be out of state (visiting a specialist) and need “emergency” care ie: surgery or ER, medicaid will pay for it. Most insurances have emergency care clauses that don’t allow travel out of state. For example, if you are out of state and go into an ER for emergency care and they deem you need surgery immediately, it “should” be covered.

It takes so much work and frustration. It is the nature of the beast. Thankfully we all have each other to help pick us back up when we get knocked down and keep pounding on the doors to get the right care we need.

3 Likes
13

Sorry Bopper for the loss of your father. My dad is 90 and still going strong. He got COVID awhile back but apparently sailed thru it but wouldn’t admit it if it slowed him down at all. That quiet space has got to be tough, the loss of any parent no matter how long they have lived is a sadness than never really goes away. Wishing you well. :hugs:

3 Likes
14

@Snapple2020 - Thank you for the great information & encouragement for @MsBearshark. What you share always has universal application for all of us. Much appreciated.

I also whole-heartedly agree w/ your compassionate response to @Bopper - the loss of any parent no matter how long they have lived is a sadness that never really goes away. :sparkling_heart:

1 Like
15

I hear your frustration! Unfortunately there are really no specialists in CO who understand patients like us in the way that Dr Hepworth is working. He continues to search daily for an NIR to work with him but he has hit brick walls. This is why he is referring you out to NC and HI, these are two of the doctors who met in HI last month for the first ever conference in a new group they are building. This leaves patients like us in a waiting place:(

I had to change my insurance from a HMO to PPO in order to get out of state benefits (kindof as the NS does not contract with any insurance so it is still a big out of pocket for me but my hands are tied) I am not sure of the Medicaid rules here, sorry for the lack of help. You would have to call both offices for Fargen and Lui for their cash pay options but with travel it is going to be $$$$

Hang in there :purple_heart:

2 Likes
16

So well said Stuuke!
And very diplomatically :+1:t3:

17

Sorry not to have followed up on this earlier, but I was able to get a catheter venogram done locally here in Denver with Dr. Yakes of the Yakes Vascular Malformation Center. Dr. Hepworth interpreted the results slightly differently than Dr. Yakes, but he did the procedure without issue.

2 Likes