Hi
I need a help to find a Docter in a Oregon. I already went to 3 Ent docters, which was not very helpful then I went to kaiser docter Dr.sunshine who did suregry for few people here in this group and facebook group . She said all my symptoms from birth control pills (i don’t take estrogen pills at all ) which was very strange, she suggest due to my age (40) hormone can swells veins and cause issue neck swelling and wanted me to stop all my medication and said my spiking up bp and migraines happening due to my birth control pills. and i should get better after stopping all the medication in 2 months . I am not agree with that i stop the birth control not but did not bp medication, i need to check with my docter for that , then i went to 2 more docters one ent who said surgery is very hard for eagles no docter like to do its dangerous, and said i have no eagle but he did not even look at my ct scan. i asked docter did you look at my scan he said i don’t have access to your scan but your report does not says that. and went to another non ent docter but who treating me for thoracic outlet he checked my ct measure the styloid they are 4cm , and one side compression on c1 on jugular vein , other side causing me facial swelling and possible compressing on internal jugular vein due to size . PLEASE refer me to some docter in oregon . if not does kaiser cover any other dcoter outside of state?
anyone had a surgery on Oregon would you recommend any docter ?
Thank you
Have you looked at the current doctors list? Here’s a link if not:
Doctor Lists – no discussion - Symptoms and Treatments / Doctor Information - Living with Eagle
You can search for doctors names in the past discussions to see who’s seen them; hopefully they’re not the doctors you’ve already seen. I’m not sure about what insurance they take though. Unfortunately as it is a tricky surgery not many doctors will do this- & that’s the reason we suggest that members see doctors with experience- so many have had to travel out of state to see someone good. The best doctor for Vascular ES that we know of is Dr Hepworth in Colorado, so quite a trek for you I’m afraid…
A bit strange your doctor’s suggestion that birth control pills might cause swelling of the veins- I’ve had hormonal pelvic vein congestion & the birth control pills have helped with that!
I hope that you can get some help soon, & that others can offer you advice about your insurance- @Snapple2020 has given good advice about getting treatment out of insurance group so you could use the search function for that in the past discussions.
Hi @bizzaresyndrome, I’m sorry Dr. Dwojak wasn’t willing to help you as she is an experienced ES surgeon, & as you saw, has helped at least one member on our forum. The best I can do is refer you to Dr. Jian & his group at Kaiser in Sacramento, CA. He is a neurosurgeon but operates w/ a vascular surgeon & ENT, I think. He has helped at least 2 of our members, & there is another one who’s trying to get in to see him. I know the process of getting referred to out of state Kaiser doctors is quite a process. Please let me know if you try that & are not successful.
4cm styloids is definitely longer than normal, & the fact you have IJV compression means you have vascular ES so it’s important for you to get that taken care of by someone who is experienced.
@bizzaresyndrome - Yes, it has been a journey to move into a different region of care with Kaiser. Im helping another member in Southern Ca see Dr. Jian and his group in Sacramento (northern Ca region) although it has been quite a task and member services has not been all that helpful to this patient and I personally have been making numerous calls. It has taken 4-8 weeks of banging our heads against the wall to figure how to navigate Kaiser.
None of us are aware of any other ES surgeons in Oregon or that have experience with vascular compression. I suggest highly consider Dr. Jian in Sacramento. Although this the patient has not yet had a consult with him, his staff and/or him have reviewed her Kaiser chart and scans in So Cal. He sent a note back to PCP to order a CT Venogram that included the jugular so he certainly is doing his due diligence and looking for compression. My ES surgeon never looked at this and I had wished he had. Although a good surgeon, compression was not on his radar. We just were able to have the test today and will await Dr. Jian’s review in hopes he will approve a tele-health consultation and we can move forward.
Dont bother going to any more docs that have no experience with Eagles or even believe in it. You will just leave their offices feeling dejected and unheard.
Most of all, You can seek care in another region of care outside Oregon with Kaiser. You can go to Washington, N & S California, Colorado and a few states back east. Ive heard Georgia can be tricky. It is important to follow the steps to obtain the care in order or you will get delayed. I would be happy to help walk you thru it.
Here is a good link to get you started: https://healthy.kaiserpermanente.org/southern-california/support/care-away-from-home
You need to set up a new region of care on kp.org and get a visiting member number FIRST. Then be assigned a PCP that is taking new patients in South Sacramento (I can give you a name). Set up a tele-health appt with the PCP in NorCal and request a referral be put in to Dr.Jian. His office will tell PCP if he wants further tests done prior to consult. That first visit can be a tele-health appt as well so you will not need to fly down there for the first few appts.
I would suggest seeing gynecologist or endocrinologist to test hormone levels. Ive never heard of BC causing veins to swell. BP rise is another issue. Migraines, maybe. This is where PCP would step in an evaluate or an internal medicine doctor.
Given you have 4cm styloids and jugular compression…I question what this doc is saying re: BC pills. I suspect she is just being conservative and wants to rule out but the clear compression at C1 can be causing the migraines. IT doesn’t make sense. Its important to have a kp.org account set up for your Oregon care. You can download and see what this doctor is saying in the Visit notes. You can also download and see the Radiology report.
I personally think alot of us with Eagles get pain because of inflammation and the swelling from everything being aggravated. When mine first flared up I was give dexamethasone which worked like a charm. Prednisone could possible do the same. Both are steroids. A short round of this could prove the swelling and inflammation were aggravating the neck.
I have TOS, TMJ and neck issues likely aggravated by whiplash along with Ehlers Danlos Hypermobility. Had ES surgery in 2020. Im still struggling with neck pain, ear pain and now vertigo. I used to live in CA, Oregon and now live in Seattle. I dont have warm and fuzzy feelings about the healthcare in Oregon generally. Look outside the state. And when you have the option to change out of Kaiser. Do it and choose wisely. A PPO plan that allows you to travel. BCBS usually are good for that.
Feel free to contact me anytime. We can chat privately and even over the phone if that helps.
thank you . i will check it out.
@bizzaresyndrome - Your symptoms sound like internal carotid artery compression not internal jugular vein.
The PCP you need to request in Sacramento is Dr Kandafswamy. You can make a telehealth appt with this doctor, & let this doctor know you want a referral to Dr. Jian. Tell the doctor you have Eagle Syndrome with suspected internal carotid artery stenosis.
Stopping blood pressure meds sounds dangerous to me in your situation, but I’m not a doctor. You should be taking a blood thinner to help prevent blood clots & a stroke. Has any doctor suggested this?
I suggest you send @Snapple2020 a private message (click on her screen name above the post she sent you in this thread) so she can give you more personal guidance. She has helped another Kaiser member who is struggling with the Kaiser system just like you are.
@bizzaresyndrome a CT angiogram to check your internal carotid arteries in your neck is what you need. You can get this done through Kaiser but your PCP will have to refer you for it. Hopefully, if you get an appt. w/ Dr. Kandafswamy at Sac. Kaiser, she will give you a referral for that.
Alternatively, you would get a CT with contrast. You should ask for it to be done w/ your head in the position that makes your symptoms worse.
CT Venogram is a CT scan with contrast. It is to light up the arteries and show compressions or blockages. Not a camera or catheter.
CT Angiogram is with contrast and a catheter inserted either in the groin or in the arm and fished up to the base of the neck and contrast pushed into areas of the neck to specified arteries and/or veins. I had this done and was scared as hell. In the end, it wasn’t all that bad. I was happy they could do the catheter thru the arm.
IN this patients case, Dr. Jian’s office viewed CT scan of neck done that diagnosed the Eagles. Based on that, I assume he determined he wanted to see more and that included the jugular. Interestingly this patient was admitted a few years ago with “stroke-like” symptoms like yours and after a week in hospital they could not determine the cause. She has made several trips to ER also.
Please follow instructions in previous post and the steps to get care out of region. Following the steps in the order I gave will help avoid delays.
- Add region of care (norCal) on kp.org
- get visiting MRN (medical records number) from visiting travel line 1-951-474-4251
- Call appointment line for NorCal 1-866-474-4251. Ask that Dr. Kandafswamy at South Sacramento Medical Center be assigned as your PCP (This is critical step-she has to be assigned to u)
- Set up tele-health with PCP after she is assigned and at appt with her ask for referral to Dr. Jian.
wow. given these results, its hard to understand why Oregon doc would just ignore it and blame it on swelling caused by birth control. I suspect even some of the ES docs out there are not familiar with vascular compression and ultimately don’t want to touch it. ie: do surgery. The Portland doc just may lack experience with vascular type ES and I also don’t now how many ES surgeries she has done. Doctors will make excuses to make you go away because they don’t feel comfortable doing the surgery rather than be honest.
I do think it is worth seeing an endocrinologist to get hormone levels and discuss what side effects might be causing BP spikes and swelling. They are the experts in hormones. I personally had issues with birth control and had to get off them. That was back in the day when there was higher estrogen in them. My daughter tried to take them to regulate her PMS in the past 2 years and had to stop them 4 days in due to huge side effects. Some people can handle them, some cannot.
Im curious how they diagnosed your TOS. Did they say if they thought you had vascular type TOS? What types of scans did they do? I have TOS myself and have been to several specialists. It is a tough one to get diagnosed and even harder to get surgery done.
Dr. Jian works with a team including a vascular specialist. You are on the right track at least getting a consult with him. Because you already had an CT angiogram, he may not want further imaging and will agree to a tele-health consult right away. We were able to get telehealth appt w PCP in NorCal within 1 week once we got her assigned. Dr. Jian’s office responded pretty quickly too once referral was in. I suggest to keep moving forward in that direction.
@bizzaresyndrome - You definitely have a complicated case of ES if you have both a compressed carotid artery & a compressed jugular vein. I hope the doctors in Sacramento are MUCH MORE helpful for you, & I hope you’re able to get an appointment there very soon!
I called California and asked for docter you recommend, they will call me back in few days after checking my insurance, mean time can i see any docter in any other state by video call so they confirm that how bad i have ? would you recommend any i don’t mind paying at this point for consult .
thank you
I’m glad you were able to talk to a vascular surgeon today & his advice is good. I’m sorry he didn’t know more about Eagle Syndrome.
Unfortunately, you would have to make an appointment to talk to another doctor about your scan results & diagnosis. Since you would be a new patient, you would most likely have to wait 2-4 weeks to get an appointment. You will be more likely to get an appointment soon from Kaiser.
Did you follow the steps that @Snapple2020 listed before trying to get an appointment?
Our other member who is finally has an appointment in Sacramento did not know there were steps that had to be followed. She made her appointment in Sacramento, bought her plane ticket & arranged care for her children for the day she had the appointment. Kaiser cancelled her appointment because she had not done all the things Kaiser requires before making the appointment so she had to start all over again.
I will start a private message between you, Snapple2020 & me so you can ask her for help if Kaiser refuses to give you an appointment.
I do not want you to have the same thing happen as it will delay your care.