Intracranial dural arteriovenous fistula and loud pulsating sound

Posted by ganana @ganana, Feb 6, 2016

I have an intracranial dural arteriovenous fistula behind my ear for which I underwent stereotactic radio surgery 16 years ago. Results were favorable at the time. The unbearable pulsing noise subsided to a tolerable level. Recently the loud pulsating sound and squeaky straining sounds have returned, not the same as before but very uncomfortable, along with considerable tenderness behind my ear and at the base of the skull, the area within which the pulsations extend. Does anyone else suffer these symptoms? Does anyone know what conditions, medications, or changes cause the increased discomfort?

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Hi @ganana,
Welcome to Connect. I moved your message to the Brain & Nervous System group because I think members following this group may be the most likely to chime in.

Here’s some basic information about dural arteriovenous fistulas and care at Mayo Clinic. http://www.mayoclinic.org/diseases-conditions/dural-arteriovenous-fistulas/basics/definition/con-20035656

Have you spoken to your doctor about the possibility of recurrence of the “cured” dural arteriovenous fistula? Could it have come back or do you think the symptoms may be caused by something else? Either way I think it is best to consult your doctor.

Colleen
Connect Community Director

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Sounds like you should have an exam and consultation with a neurosurgeon. If your same health care provider is no longer available, perhaps you can call your internist or GP and ask for a referral? If I were you, I would want to rule out a recurrence, as Colleen mentioned.

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Hello @ganana , I also have a DAVF and SRS has been recommended. I have been searching for discussions about SRS and how effective it is long term. It is radiation, so I am trying to make the best decision possible. Did the SRS not get rid of fistula? Also, I too have the same pain and tenderness you describe behind the ear at base of skull. I always mention it, but no doc thus far was concerned. Any luck with this? I know this is an older thread…

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@lizm2

Hello @ganana , I also have a DAVF and SRS has been recommended. I have been searching for discussions about SRS and how effective it is long term. It is radiation, so I am trying to make the best decision possible. Did the SRS not get rid of fistula? Also, I too have the same pain and tenderness you describe behind the ear at base of skull. I always mention it, but no doc thus far was concerned. Any luck with this? I know this is an older thread…

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Hi @lizm2, I'm not sure if @ganana is still following this forum. I hope they will see your message as you ask great questions and want to get first hand experiences.

Several members have shared about their experiences with stereotactic radiosurgery (SRS) for brain tumors in this discussion:
– Stereotactic Radiosurgery Surgery (Gamma or Cyberknife) for Meningioma https://connect.mayoclinic.org/discussion/gamma-knife-radio-surgery-for-meningioma/

I realize that that you are looking for experiences with SRS for dural arteriovenous fistulas (dAVFs). Perhaps @avmcbellar might have some experience to share.

Liz, do you plan to go ahead with SRS?

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Hi @colleenyoung, I am considering SRS for my DAVF. I am just trying to get some insight from others as I am concerned about getting brain radiation for no good reason. Would love to hear how it worked for others. I am also concerned about radiation necrosis. Thank you for the info, I will check out the discussion you suggested.

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@lizm2

Hi @colleenyoung, I am considering SRS for my DAVF. I am just trying to get some insight from others as I am concerned about getting brain radiation for no good reason. Would love to hear how it worked for others. I am also concerned about radiation necrosis. Thank you for the info, I will check out the discussion you suggested.

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Hi @lizm2 sorry, as far as I know I have not had SRS for my AVM. Nothing was removed. Only the passage of blood was altered by blocking blood vessels. An incision was made in the back of my neck at the base of my skull for the initial surgery. The surgeons were able to clean up the blood from the rupture. The next 2 surgeries involved entry through the groin in order to repair the AVM. Have you talked with your surgeon? He or she will also be exposed to the radiation. What does the surgeon have to say about the radiation exposure and risks? I wish you the best. Keep us posted on how you do. Toni

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My AVM behind my ear was operated on in 2000. All I could hear day and night was my heart beating. The way I was finally able to get the Doctor’s to believe me was when I realized anyone could hear my heart beating if you put a stethoscope to my head. The surgery access was also through my groin and they put six coils in to shut the blood flow down. Keeping my fingers crossed that I will never have that problem again.

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My daughter had a milder form in her hand. I hope you will find answers and a solution. You will be in my thoughts and prayers.

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@scubatropic

My AVM behind my ear was operated on in 2000. All I could hear day and night was my heart beating. The way I was finally able to get the Doctor’s to believe me was when I realized anyone could hear my heart beating if you put a stethoscope to my head. The surgery access was also through my groin and they put six coils in to shut the blood flow down. Keeping my fingers crossed that I will never have that problem again.

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Yeah I am quite familiar with that noise in your ear. Very annoying and distracting. I had embolization too, about 3 years ago. Unfortunately doc couldn’t block everything, so noise came back in about 6 months. Now it’s “recruiting” as he puts it. His only recommendation at this point is the radiation.

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@scubatropic

My AVM behind my ear was operated on in 2000. All I could hear day and night was my heart beating. The way I was finally able to get the Doctor’s to believe me was when I realized anyone could hear my heart beating if you put a stethoscope to my head. The surgery access was also through my groin and they put six coils in to shut the blood flow down. Keeping my fingers crossed that I will never have that problem again.

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I did have noise in my ears after the first 2 surgeries to repair my ruptured AVM. I didn’t know if the embolizations were the cause. I just dealt with it. Luckily it went away after a few months. Toni

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