I see a lot of positives impressions about him but I’m really disappointed about the communication myself. I don’t know is it something wrong with me or smth on his side but anyway it sounds like I can’t consider it as an option and won’t get any treatment.
Initially, Dr Kamran responded very quickly but his impression about my scans was only “you need more examinations”. That’s ok.
But later I spent 3 weeks with his assistant just to agree to schedule online or call - he was pushing me to come Turkey just for a consultation - I’m beddriden and there is a great chance I win’t survive the trip, so I’m willing take that risk only to go for the surgery and than we have at least to agree what to do and schedule all examinations needed?
We finally managed to schedule an appointment for today, and I was just sitting and waiting for 5 hours from the scheduled time, reach out assistant 2 times and he was like - yeah, we gonna call you in 2 minutes. And they didn’t call.
I’m texted them to reschedule it, but I’m not even sure how I even gonna get some positive outcome from a such a way of communicating - I cannot just wait for the whole day not doing anything. Honestly, I haven’t experience this for a long time living in Balkans myself.
I’m sorry that you’ve had this experience with his office- I haven’t heard of other members having trouble, but hopefully those who have had consultations can chip in, @Val7426 , @Bowser
I can only guess that maybe he’s got very busy now, unfortunately this seems to happen with the VES doctors particularly as they’re in such high demand! It’s beyond frustrating when you’re feeling so ill and need help, I hope that you can get somewhere with him soon…
Here’s a link to @Val7426 's posts, you can click on her avatar to send her a private message if you want to ask anything…
@Jules I understand pretty good that surgeons could be busy and got used it long ago. If that was just the issue with that, I won’t be so frustrated.
But for now I’m still communicating with drs assistant and he systemically gives that vibe of gaslighting like they are not interested in me as a patient for some reason (not bc the Dr Kamran didn’t managed to join the call today but bc how this situation is handled).
@eggisnotaplant - I’m terribly sorry to hear you waited for 5 hrs & got no phone call. I also haven’t heard of that happening w/ Dr. Aghayev. It’s unfortunate that his assistant didn’t just tell you Dr. A wasn’t going to be able to speak with you today after all & reschedule you rather than keeping your expecting the call. That is very unprofessional!
I hope tomorrow you’re able to get the appointment rescheduled & very soon & also that the next appointment works out. If you feel like you’re being gaslit by the assistant, maybe have someone else from your family call to make the appointment to see if that goes more smoothly.
I replied on your other post about the tongue tie…maybe it’s worth looking into that first, but it does sound like your symptoms are pretty extreme, hope you can get some answers soon, & I’m glad at least that Dr Osborne was helpful…
@Jules for tongue-tie there is probably no need to go Istanbul. If so, it can potentially relive the pressure around TMJ, carotid sinus and e.g., and make me more stable for traveling.
Well, today appointment was on time but this was only to talk with his assistant again. Again he said I need to come personally to Istanbul for further investigation and that’s it.
It’s a bit tough to go there with such degree of uncertainty bc the transportation alone will cost me about 3000 euros…. On the other hand, I’m glad to hear a surgeon willing do further diagnostics - that’s rare. Processing it.
@eggisnotaplant - As you said, it’s good that Dr. Aghayev wants to check further to make sure he can help you & doesn’t just have you come out for surgery. Since an ENT surgeon can potentially also take care of a posterior tongue tie, if that does seem to be present, it’s something else you could discuss with him if you see him & if you haven’t found someone more local to assess you for that.
P.S. I have to say that your screen name makes me smile every time I see it. It’s one of the more creative ones I’ve seen on our forum.
TBH, I’m not stable to travel even 50 miles - it is unsafe at all. I need to try to stabilize myself somehow next 2-3 months but I still wasn’t able to succeed in that, so dunno how it is gonna work. Not too much options I have.
@eggisnotaplant - Do you have family members or friends who could travel with you to help you? Would that make it possible for you to travel to see Dr. Aghayev if he feels he can help you?
@Isaiah_40_31 Yep my partner and my friend are willing to travel with me but this won’t help too much. The issue is my HRV goes down to zero and my heart rate goes to 200 and I pass out at this point - already ended up two times in emergency after a short car ride recently. Can not tolerate even small vibration around my neck.
And it’s hard to get any more less serious procedure like stellar ganglion block done (I mean out of pocket), so I believe I need to get myself a lawyer first…
That was NOT my experience with Dr. K. The initial video consultation had Dr. K on the call, however, JC had multiple scans and a confirmed diagnoses by 4 ENTs. Having the surgery was almost a certain.
In Türkiye, most surgeons have a “doctor’s assistant” and this person is much more than a receptionist. This person is in the actual surgery, and is the surgeon’s right hand. They often can assess whether a person qualifies for surgery. This is quite different from what we have in North America. I’m in Türkiye right now for my mom’s knee replacement and 75% of the correspondence and in-person is with the assistant.
That said, Bassam should not insist on coming to Türkiye for the consultation. Don’t back down. Ask exactly what scans are needed for a virtual consultation, and demand that Dr K join for a call. Someone else has told me that Bassam is gatekeeping and Dr. K is less present in the consultation phase.
All this to say, push for your imaging at home, and don’t lose faith in Dr. K’s actual surgical abilities. If you go on his Instagram, you can see that he is a very skilled brain and spinal surgeon, and ultimately you want a competent surgeon who can help.
That exactly I was worrying about that maybe Bassam is gatekeeping Dr K.
I don’t know is it gonna work for me with doing some imaging at home if Dr K (according to Bassam) he need my full clinical history to evaluate for that and need to show that in person. It’s ok if it is really going to be like that and if Dr Kamran is really willing to diagnose me. But I’m still confused to do that travel not knowing what exactly I’m buying. I even can’t travel at my current condition and I don’t have any documents on hand to show doctors at home to get any procedures and treatment done needed for the travel and don’t have any recommendations from the surgeon how to stabilise myself for the travel and what exact procedures are reasonable to do, like figure it out yourself with chatgpt, girl.
@Isaiah_40_31 HRV goes to zero means my parasympathecic system (that tells body and heart to relax) just shut downs and sympathetic (which does the opposite) is getting out of control.
Hiring a lawyer would help me to get symptomatic treatment in my country, so I can travel to Istanbul. But as I posted in my latest comment, the true issue is that I don’t have any report from Dr Aghayev or something like that, so the situations is that I have to ask myself doctors at home to perform invasive procedures to help me to travel…. where? for what reason? who thinks it is necessary? Nobody is gonna do it without written documentation from a surgeon.
Thank you for your answer, @eggisnotaplant. Now I understand better. I had a similar symptom with my ES but usually only during exercise where my blood pressure would drop very low then my heart would race crazily to try to oxygenate my blood. I would feel like I was going to pass out so I’d stop my exercise until I’d recovered then try again. It was miserable. That problem did go away after my right styloid was shortened.
You do have a dilemma regarding the information you need from Dr. Aghayev, which isn’t forthcoming, but which will help you get the therapy you need in your country so you can travel. The best I can do is to keep praying for you & hoping that step by step you’ll make the necessary progress so you can get the consult you need.
The situation is that I’m not going anywhere. I don’t have neither adequate documentation from serbian doctors bc they don’t know what do with me (they actually do, I just don’t deserve their attention) so don’t bother themselves with writing reports, neither from Dr Aghayev. Fantastic.
Feel free to vent on here, I just wish we could give you some answers, it genuinely is such a difficult situation & catch22…maybe like you’ve said if a male rings it might make a difference
