Haven't posted in awhile ..some good and bad

Hello all, I have been busy a bit lately and just wanted to check in with you all. The Appointment with Annino was a bust. My appointment that I had scheduled in November was rescheduled last week and it was a different provider who thought I was there for swallowing issues :woozy_face: I told her when I called it was for the jugular vein issue. I brought my discs and showed her my notes from NR. She seemed annoyed I was there and said I need to circle back to the other ENT who I saw before. The ENT and NR haven’t done anything for me. What a frustrating waste of time. I was so hoping I would be able to talk to him :cry: I’m not sure what happened. I was invited to make a patient portal with the Hospital where Fargen is located, so I’m assuming they are looking at my scans and records.The NR who said I don’t have Eagle syndrome or should have symptoms talked with colleagues about my case and I’m going to get a full spine MRI at the end of January to rule out a possible CSF leak, since he thinks I may be experiencing CSF hypotension without the positional headaches. Yet, I have pressure feeling in my head, wouldn’t that be hypertension? . I just don’t understand these providers and this whole disorder. I feel that my jugular vein IS an issue. I can feel it in my neck, especially on the left side. Base of skull throbbing, the pressure has been better. I was offered an appointment at the Mayo Clinic in Phoenix Arizona in February with Department of Neurological Surgery. They looked at my scans and records and want me to be seen due my cervical spine and vein obstruction. Do I want to fly half way across the country for an appointment that won’t lead to anything meaningful. One of the workers said they wouldn’t offer you an appointment if there wasn’t something they could do. What do you all think? My husband thinks I should go. I guess I’m just getting a bit jaded by the medical system. But it is Mayo Clinic. I would go on a Monday and they said I may have additional testing. Just worried it would be a huge waste of time and money and be rough to travel in my state but hopeful as well. Hope you are all as well as you can be. :pray:

I’m really sorry your appt wasn’t rescheduled w/ Dr. Annino. That doesn’t even make sense since that’s who you were scheduled w/ originally. The office should have been clear about that when they rescheduled you so you could decline the appt. I don’t blame you for being discouraged!!

The Mayo Clinic in Phoenix is the only Mayo I know of that even acknowledges ES & Dr. Nakaji is on our Doctors List as someone who does C-1 shaving to help relieve IJV compression so it is likely you’d have a much more productive appt. there. I do agree, they don’t offer appts to just anyone. Though we don’t have much info about Dr. Nakaji, I saw that there was a reference to him working w/ Dr. Lawton who has helped a few of our members, but he’s also turned away some we felt he should have helped, so there may some risk, too. Can you find out specifically who you’ll be seeing at Mayo?

Besides being invited to make a patient portal w/ the hospital where Dr. Fargen works, have you had any follow-up contact from his office regarding making an appt.? If not, get on the phone on Monday & push for that.

I agree that head pressure would most likely be hypertension & the report that said you have hypotension is confusing in light of your symptoms. It’s possible to have a CSF leak & still have IH, but CSF leaks can also contribute to the headaches from IH. Skull base pain often has nerve irritation as it’s cause & is a common ES symptom, but there can be other causes for it. Yours is definitely a complex situation. I think you’re not alone in not understanding the symptoms you’re having. It seems the doctors are struggling with answers too. There may be several layers that need to be “peeled back” to uncover all the root causes but you’re definitely on the right track to seeing more helpful doctors now. I hope you’re able to get an appt. w/ Dr. Fargen sooner than later.

I’m glad you’re feeling a little better than you were & am hopeful you’ll be able to enjoy the upcoming holidays to the greatest extent possible.

:heart: :hugs:

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