Vaskulær eagels Tyrkia Dr Kamran

hi
I’m new here but want to tell my story and symptoms of vascular eagles. in 1995 I crashed in a car race. got hit on the left side of the neck. I went and had an x-ray of my neck but they didn’t see anything in the pictures. For years I have been troubled by a stiff neck and pain in the left side. in 2013 I got a black spot on my left eye, I could only see half, it lasted about 5 minutes. that’s when those neurosymptoms started on me. after that it has only escalated with a lot of strange things happening in the body. I see that many here have the same symptoms.
-pain on the left side of the face and neck -harqulin syndrome (split face color) - fatigue -rash on one arm (had for many years) -heavy breathing - high blood pressure when I stand upright -first bite syndrome -pain in the lower back - heavy bones - different size of pupils -burning in the stomach - palpitations - swelling in the face and hands - ear rush - ever hear a pulse in the right ear - flu symptoms in the body - pain in the lymph under the left arm - cannot tolerate physical training - elevated ACE blood test I have been in and out of hospital but no one can help me. I have been in contact with Dr. heim, who is quite sure that this is the result of ves. I have given up on the health system in Norway. so now I travel to Dr. Kamran in Turkey for operation. Does anyone here have any feedback and advice I can follow from there?

I’m so sorry that you have such horrible symptoms, and aren’t able to get help in your country…
One of our moderators, @Henrik was able to have surgery in Norway, I know it was a struggle for him to get diagnosed etc., here’s a link to his story in case that’s at all useful for you:
Henrik’s Story - General / Eagle Syndrome Stories - Living with Eagle
@Val7426 has just travelled to Turkey with her husband for his surgery, she has posted lots of info all about their experience, here’s a link to some info:
A Canadian’s Journey: VES Surgery in Türkiye Dec. 10 - General - Living with Eagle
If you click on her avatar, you can send her a private message and I’m sure she’ll reply if you have questions…
Have you got a definite date for your surgery?

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Hi i am having bilateral procedure with dr Kamran on feb 3rd. Will you be there ?

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Best wishes for your surgery tomorrow @Abhullat will pray all goes well, let us know if you can how you get on :pray:

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@Abhullat - How did your surgery go? How are you feeling now? I know it’s soon after the surgery & am hoping you are already noticing some positive changes!

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@Lenaj - Do you have a date for your surgery with Dr. Kamran?

Hi there im 7 days post op. My right side feels slighty decompressed but my left side is still compressed during a follow up ctv. My left was already very hyoplastic. I dont know when the full benefits of good blood flow will come. Im in high pressure at night right now still.

hi I was operated on by Dr. Kamran 6 days ago. I have regained my energy, my blood pressure is normal and I am not short of breath. I have little pain. I still know a little bit about first bite syndrome, but I have to give this some time so it can heal. I’m very happy I’ve got a new life​:hugs: Dr. Kamran​:+1::+1::+1:

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@Lenaj - Thank you for your update! I’m happy to hear you’re recovery isn’t too difficult & you’re already feeling better after your surgery. Remember to take it easy for at least the first month even if you feel good, because it’s very easy to overdo it and have symptoms flare up again.

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@Abhullat - Did you have your surgery in CA or the US? I’m sorry if you mentioned it before & I forgot. It can take a number of months for a decompressed vein to recover & for blood flow & intracranial pressure to normalize. Rest with head elevation will help you a lot now & easing back into your life slowly even on days when you feel better. Major surgery can take quite a while for full recovery so patience is necessary.

Since your left IJV is hypoplastic, there may be no benefit in having it decompressed later on so your body will be relying mostly on the right IJV for blood flow out of your brain. That may also cause your recovery to be a bit slower.

I will pray for you recovery to progress well, even if it seems slow to you.

:pray: :blush:

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Thank you very much for the tips☺️

man. 10. feb. 2025 kl. 10:10 skrev Isaiah_40_31 via Living with Eagle <notifications@ben-eagle.discoursemail.com>:

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Mine was bilateral in turkey, i also met lenaj. I have normal styloids but c1 compression. My major issues were compression on both sides casuning blood flow issues out of my jugular veins. Sympotms were pulsatile tinnitus and sleep issues along with headaches. My right side pulsatile innitus is less. But left side is still there. Still got the feeling of blood flow restriction at night time when I sleep. So symptoms didnt really get better. Im days 7 days post op

Doctor said my left side is hypoplastic so less chance of it opening. So If worst comes to worse I can get a stent there since theres no boney compression anymore. But dang I got a csf leak in cranium that I know noticed so I dont know if I should fix csf leak or stent first as stenting takes couple of months of blood thinners so no surgery :(x

So sorry that you’re not feeling better after surgery, unfortunately quite a few members have had CSF leaks from the high pressure, some cycle between high pressure from compression, leaks, then low pressure & symptoms from that, the leak heals & pressure builds again…are you getting low pressure symptoms from your suspected leak? I think you would need to discuss which treatment plan is best for you going forward with your doctor, some CSF leaks can be stopped with a patch, some need surgery, so I guess that would make a difference too?
Praying that things will improve for you :pray:

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@Abhullat - You’re still in super early recovery. Healing can take up to a year for nerves & vascular tissue recovery. At 6 mos post op, you’ll have a much better idea how much this surgery helped you.

Also, getting your dominant IJV decompressed could allow your CSF leak to heal naturally. Give it a bit of time (a couple months) to see if that happens.

It makes sense that the left side would continue to be more symptomatic than the right based on your left IJV being hypoplastic since it’s naturally small & decompression won’t make the same difference on that side as on the right.

I had symptoms that took 9+ months to resolve after my first ES surgery. Just when you think a particular symptom will never go away, one day you’ll notice the symptom is gone.

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@Abhullat Hello how are you?

Hi im dealing with inflammation right now, and a some pulsatile tinnitus along with some sleep issues. How are you? What symptoms are you experiencing 2 weeks post op?

sad to hear. hope you get well. Do you have inflammation in the wound or inside? I’m fine, still very swollen in the oprajon area. I also have pain in my face, but I hope it will go away with time. otherwise I’m in good shape

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Sending you both hugs and prayers for healing :pray: