IIH Support Group May 2021 Facilitated by Dr. Athos Patsalides & Gabrielle Mauro, LMSW Northwell Health: North Shore University Hospital Department of Neurosurgery
I will be having a second stent (Different area) next week 1st Dec 2022. The first stent had rid me of headaches and brain fog which I put up with for years. This second stent should hopefully get rid of tinnitus and fluid leaching thru the base of my skull and into my inner ears. This is the best information I have come across. Thank you Dr.
I most likely will need this procedure done. I have severe Pulsatile tinnitus and it’s so loud and it’s 24/7 with no relief. It started about 2 months ago. When compressing RIGHT side of neck it blocks the Pulsatile tinnitus in my RIGHT ear, and same with the LEFT side. My Pulsatile tinnitus is in both ears but louder in the RIGHT ear. I also have daily persistent headaches that started in February. I take Sumatriptan every day and it helps the headache maybe 50% in intensity. I also get extremely dizzy and lightheaded when the Pulsatile tinnitus is flared up really loud, particularly after eating anything with sodium or caffeine in it. I had to eliminate caffeine, and minimize foods with sodium - but it’s impossible to completely eliminate sodium since almost everything has some sodium in it. I had a CT (a) Scan and no tumor or legions, and MRI showed no tumors or legions. I had an Ultrasound Carotid bilateral on Friday (with the doppler) and while listening to the ultrasound doppler I can hear my carotid pulse on the doppler matching the beat of my Pulsatile tinnitus rhythm. I saw the audiologist 3 weeks ago and no hearing issues, and the ENT doctor this past Friday. He said my Pulsatile tinnitus is venous related and had me take a blood test and return in 2 weeks. In the meantime I have to take Xanax twice a day to calm my nerves down as this Pulsatile tinnitus is absolute torture.
hi A very rare medical condition, especially the pressure of the dura vein from outside the vein, the pressure inside the vein adjacent to the ear, and the installation of a stent. The condition worsened and the tinnitus increased. In addition to the absence of nerve infiltration and the presence of pressure inside the vein and pressure in the cerebrospinal fluid and narrowing of the veins. Is it possible to communicate more securely and mutual trust??.
I have bilateral venous stenosis and I am loosing my vision fast. I also have high sensitivity to sun light (photophobia). I have positional hypotension. I always faint and get dizzy when I stand up from a laying or sitting position. I usually feel the pressure going up to my ears.when I have sex I have a sharp pain on my right side of my head. I do have a very large hemangioma/AVM on my right leg and also have a narrowing vein on my left kidney. All these presentations might have be related to the RATA gene mutation that is common with AVM. My stenting procedure is scheduled for september 23 2022.
@@Jojesse it went well. My doctor found an aneurysm in the right transverse venous sinus vein. There was a complication (I havent asked for details) but my doctor had to place two stents on the right vein (dominat). The left vein is very narrow and will be left untouched. I was given general anesthesia for the entire procedure. Im being treated with steroids for now. But overall I feel good, but a lot of headaches right after the procedure. I felt numbing and cramping in my left arm last night, but everything seems fine. For the pain I was given oxicodon-acetaminophen. I'm still on aspirin and plavix daily. But I feel my vision getting better. The blind spot on my left eyes is still the same.
@@Jojesse one other thing, I been having memory issues and confusion as well as trouble communicating.I also am forgetting words I knew before and now its hard to retrieve them in a conversation for the past 2 months now. It is unclear if it is related but my doctor wants me to see another neurologist soon.
I will be having a second stent (Different area) next week 1st Dec 2022. The first stent had rid me of headaches and brain fog which I put up with for years. This second stent should hopefully get rid of tinnitus and fluid leaching thru the base of my skull and into my inner ears. This is the best information I have come across. Thank you Dr.
I most likely will need this procedure done. I have severe Pulsatile tinnitus and it’s so loud and it’s 24/7 with no relief. It started about 2 months ago. When compressing RIGHT side of neck it blocks the Pulsatile tinnitus in my RIGHT ear, and same with the LEFT side. My Pulsatile tinnitus is in both ears but louder in the RIGHT ear. I also have daily persistent headaches that started in February. I take Sumatriptan every day and it helps the headache maybe 50% in intensity.
I also get extremely dizzy and lightheaded when the Pulsatile tinnitus is flared up really loud, particularly after eating anything with sodium or caffeine in it.
I had to eliminate caffeine, and minimize foods with sodium - but it’s impossible to completely eliminate sodium since almost everything has some sodium in it.
I had a CT (a) Scan and no tumor or legions, and MRI showed no tumors or legions.
I had an Ultrasound Carotid bilateral on Friday (with the doppler) and while listening to the ultrasound doppler I can hear my carotid pulse on the doppler matching the beat of my Pulsatile tinnitus rhythm.
I saw the audiologist 3 weeks ago and no hearing issues, and the ENT doctor this past Friday. He said my Pulsatile tinnitus is venous related and had me take a blood test and return in 2 weeks. In the meantime I have to take Xanax twice a day to calm my nerves down as this Pulsatile tinnitus is absolute torture.
Please update me
Dr.P is amazing and very knowledgeable, I am glad he’s my Dr
Excellent, thanks
hi A very rare medical condition, especially the pressure of the dura vein from outside the vein, the pressure inside the vein adjacent to the ear, and the installation of a stent. The condition worsened and the tinnitus increased.
In addition to the absence of nerve infiltration and the presence of pressure inside the vein and pressure in the cerebrospinal fluid and narrowing of the veins. Is it possible to communicate more securely and mutual trust??.
How do success rates look for patients with AGs and relatively high opening pressures?
Have you ever done a random csf test Neuron specific enolase?
Can you help me please if i send you my MRI MRV MRA and CT oh head
I have bilateral venous stenosis and I am loosing my vision fast. I also have high sensitivity to sun light (photophobia). I have positional hypotension. I always faint and get dizzy when I stand up from a laying or sitting position. I usually feel the pressure going up to my ears.when I have sex I have a sharp pain on my right side of my head. I do have a very large hemangioma/AVM on my right leg and also have a narrowing vein on my left kidney. All these presentations might have be related to the RATA gene mutation that is common with AVM. My stenting procedure is scheduled for september 23 2022.
How did the procedure go? Any updates?
@@Jojesse it went well. My doctor found an aneurysm in the right transverse venous sinus vein. There was a complication (I havent asked for details) but my doctor had to place two stents on the right vein (dominat). The left vein is very narrow and will be left untouched. I was given general anesthesia for the entire procedure. Im being treated with steroids for now. But overall I feel good, but a lot of headaches right after the procedure. I felt numbing and cramping in my left arm last night, but everything seems fine. For the pain I was given oxicodon-acetaminophen. I'm still on aspirin and plavix daily. But I feel my vision getting better. The blind spot on my left eyes is still the same.
@@Jojesse one other thing, I been having memory issues and confusion as well as trouble communicating.I also am forgetting words I knew before and now its hard to retrieve them in a conversation for the past 2 months now. It is unclear if it is related but my doctor wants me to see another neurologist soon.
How are u now
How are u now