Working with your GP

How do you deal with your general practitioner when it comes to Eagles or intracranial hypertension? My GP had never heard of either. The condition explains most of the symptoms I’ve been trying to have him address over the past several years. I don’t even feel that it’s worth seeing him but he won’t give me referrals until I come in for a physical. I’m sure my BP will be high and my heart rate low.

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Well for one you are doing the absolute right thing by coming to this forum and looking for answers yourself. Unfortunately, for those of us with unique and “out of the box” symptoms many doctors don’t know what to say or do. For me, I went through 12 doctors and continued to bounce for 2 years. Your best bet is to 1. find a new GP that is less mainstream as these doctors tend to have no problem writing referrals if you state your case as to what you need. Or 2. Go into this GP with a simple and clear page of research for eagles and perhaps already have a doctor in mind so you can tell them what this doctor will be able to do for you in terms of the diagnosis process/treatment that the GP cant.

Either way, most ENT’s that do eagles will require a referral I am pretty sure, but I could be wrong there.

Hope this helped (:

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Great advice, @hyperichard!! Printing off published research articles that talk about your symptoms in regards to ES is one way to inform a doctor who doesn’t know about ES. You can also refer your PCP to our forum. He can read the info here. We won’t allow a doctor to become a member (unless that doctor personally has ES & is here for that reason), but anyone from the public can read what is posted here except private messages.

There are many links to those papers in the Research Papers tab under the General category. I can also recommend reading the information about Self Advocacy that is in the Patient Self Advocacy category.

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I can’t believe a doctor has never heard of IH! I can understand not knowing about ES, but…as hyperichard says, go armed with a research paper which clearly shows about IH, jugular compression & ES. This paper for example is written by Mr Axon who is pretty much the most experienced ES surgeon in the UK:
An Evaluation of Styloidectomy as an Adjunct or Alternative to Jugular Stenting in Idiopathic Intracranial Hypertension and Disturbances of Cranial Venous Outflow (nih.gov)
Otherwise consider changing your GP!

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And just to clarify, I’m seeing Dr. Hepworth so the referrals aren’t directly for Eagles but more for symptoms I’m dealing with. I have some skin discoloration on my scalp around the area that I developed alopecia so I wanted to see a dermatologist. I’ve also had digestive issues so looking for a good GI doctor. I’m just trying to determine how to best talk to my GP about Eagles and the issues it causes me since he seems clueless and hasn’t been very open in the past.

I might contact Dr. Hepworth and see if they know of any GPs in my area that have referred patients to him or are familiar with Eagles. I’m definitely not opposed to switching doctors.

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My daughter sees Dr. Hepworth and was referred by his colleague, Dr. Terkonda ENT, who was referred by Dr. Melamed our immunologist who is head of IMMUNOe. She’s seen so many specialists over the years and the GPs haven’t a clue, so now if we ever have to list her main doctor I just list Dr. Melamed as her PCP, since he has spearheaded all of her diagnoses, procedures, testing etc. that have actually begun to address her very serious and complex medical conditions. Unfortunately, ES and IH are just two of the multiple rare diseases that she’s been diagnosed as having. My suggestion is also to ask the specialists to refer to other specialists. I think once you are at this level of diagnoses, they get it, understand, and want to help. At the very least they can probably write you a recommendation to your GP that they suggest you see a dermatologist, if not a direct referral.

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My GP had never heard of IH either and she seemed to think it was just high blood pressure. It’s very frustrating. It’s such a crapshoot with GPs and I have no idea how to find a good one. Amazingly my dermatologist was most interested in my diagnosis when she saw my surgery scar she asked a lot of questions about it and actually wanted to learn. Sadly in my experience most doctors don’t care to do that. Maybe Dr Hepworth could send some records from your visits over to your GP to help inform him?

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And May add to what @blossom said that they treat you like who are you to lecture me about medical conditions (Ego thing). The amount of ignorance in some doctors amazes. They do not understand that you do not have to be a doctor in information technology age to learn rare conditions from just googling it if you have the time. So if they do not know it, they assume how come you know it since you have not been into medical school. I say this to everyone, do not settle for egotistic doctors. Move on to a different doctor who is open minded. Good doctors know that patient input is critical and that although they might know what is wrong with them, they can certainly research their symptoms and narrow their suspicions to handful disease. This is important in diagnosing diseases early as the patient knows their body more than any doctor.

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stuuke,

Just want to give you a heads up - gastrointestinal issues are not uncommon ES symptoms & come from the vagus nerve being irritated. It’s most likely if you see a gastroenterologist, you will be diagnosed w/ GERD (which you most likely DO NOT have) & will be Rxed some sort of antacid which won’t help, & may make your situation worse. We have quite a number of members who’ve been down that road.

Please look for the Patient Self Advocacy information that is on the home page for this forum. It’s just under the Welcome Category. There is a ton of good info there that can help you be more direct w/ your existing doctor, & which, in turn, may produce more desirable results for you.

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