"It’s Not Just In Your Head": Jenna's Journey
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- čas přidán 6. 09. 2024
- Dr. Athos Patsalides is joined by his former patient, Jenna, and her husband to discuss her diagnosis and treatment of IIH & Pulsatile Tinnitus. Jenna describes her experience living with this life-altering condition and how finding Dr. Patsalides changed her life.
For more information, an to book an appointment with Dr. Patsalides, please visit: nsuh.northwell...
I am close to taking my own life from this Pulsatile tinnitus. No doctors I have seen have a clue what “Pulsatile tinnitus” is. I had all the scan workups and nothing shows anything abnormal. I’m ready to give up
Hello sweetie I have IIH which is absolutely horrible, I'm a single mom trying to work and take care of my children with this. Don't give up there is light at the end of the tunnel!! I have Venus diagnosis but my neurologist says I'll be fine and that doctors really don't like to put stents in but meanwhile it has taken over my life in and out of the hospital getting LPS dizziness pressure headaches it's all so much, but I am blessed to be here and so are you everyday is a chance for a new day. I'm going to contact Dr P's office to see if he can help me you should do the same God bless you and keep your head up!
Dr. P HELP!!!!! I have IIH. I have had right side stent placement April 20th. Good results for the first 2 weeks. Since then severe headaches and pressure have started again. I had 98% blockage in the right side and 78% blockage on the right. My doctor is blowing them off as migraines but medicines don’t help them again. I’ve been fighting this since Oct. 2009. I want me life back
Thank you so much Jenna and dr. Pat for having this video. This truly helps me and gives me hope.!
This is exactly what I have. Took a very long time to get diagnostic studies but got those recently and will be reviewing those with my Neuroradiologist next week. I’m definitely going to pursue treatment options as this condition is miserable.
I’d love to know how you are approaching getting seen by doctors. What type of imaging are you getting and who is approving it?
Actually, my PT symptoms is similar to hers. My PT is very situational, even now it is situational/intermittent unlike hers which unusually became 24/7 later on.
My PT would occur when I stand up quickly from a seated position or when I bend over to get something. Alongside PT, I would get these weird head pressures which would sometimes convert into mild headaches.
I don’t have any vision problems. But sometimes, I do get eye flashes. Once they were gone, I would almost instantly get a moderate headache.
Also, another triggerent of my PT is physical exertion such as exercising in the gym. That is when my PT in my right ear is at its loudest.
Lastly, I also feel this dizziness/lightheaded and blackouts when going from standing to a seated position. I have grab hold of something so that I don’t lose balance and fall down. It would last for a few seconds before I regain my vision.
Hi! I have somewhat similar symptoms. It's intermittent and sometimes comes with headaches. I'm sorry you're dealing with this. Have you had any tests done yet?
@@NM-nc2nh not exactly headaches. I get more like head pressures which are usually mild.
I just mailed my MRI out to your Asst Simone today. I have a virtual consultation on 5/31. Im so ready to get out of misery. Thank you for all your work. Hardly no Dr I have been to have understood.
What was the process to get an appointment with them?
I currently suffer through this I can’t sleep I can’t concentrate on anything I’m woken up several times through the night it is deafening the only time I fall asleep is when I’m so sleep deprived I can’t stay awake any longer. I can’t listen to music watch television I find it distracting to the point that I can only drive the car for short journeys. I can’t hear people speak properly if I exercise it’s so loud that I feel sick and dizzy. The local ent clinic is recommending cbt psychotherapy and or physio for my loss of balance I’m not holding out for a favourable outcome I won’t get an appointment for the clinic for another couple of months but my dr rang and spoke to a dr there and this is his idea of treatment once I finally get an appointment if that is all that can be done I will have to end it this is not living. I had a cat scan that showed there is narrowing of the semicircular dehiscence and the carotid canal I had major surgery woke up from it and it has been with me for 6 months without a break.
Hope you're feeling better by now or found an answer for your suffering.
Thank you for all your detailed information. I’ve been struggling with these symptoms for 2 years. I’ve seen several ENT that provide no results. I’m Exhausted! Can’t wait to book my appointment with Dr. Patsalides
Thank you all the way from Texas
Did you end up having the procedure with Dr. Patsalides?
I have been experiencing PT for 6+years. You literally have told my story of symptoms 😒 verbatim. Unfortunately I have so much more going on in my IJV. THANK YOU FOR SHARING
6 years?? Why would you want to live like that??
Don't you have health insurance?
@@ahilleastsavalos5573 It goes without saying but yeah, no one wants to live w PT 🤦♀️🤷♀️, as I mentioned, I have a lot more going on within my jugular vein and bulb. I’ve had 2 reconstruction and resurfacing surgeries and 1 stent placed with no relief of sound or symptoms. Each case is unique, while the story can sound the same or similar the causes can be more complex. I remain, Beating on!
@@Willowrain6666 then you get a better neurologist to look at you..... preferably a neurovascular surgeon or neurovascular doctor......have they done a sonogram on your neck and temple?
My Pulsatile tinnitus started a month ago after noticing I started hearing what sounds like a field of crickets chirping mostly in my right ear, lower in the left ear. I got an MRI and no tumors or legions, also got a CT scan and nothing abnormal. My Ultrasound Carotid Bilateral showed no major stenosis.
The Audiologist hearing test showed no hearing issues. Finally this past Friday I saw the ENT doctor and he said my condition is venous in nature and that I have turbulent blood flow. Meanwhile my anxiety is at all time high and had to start taking Xanax to calm me down, and now I am getting addicted to Xanax as a result. I went to the ER several times in the last few weeks and none of the ER doctors have a clue what Pulsatile tinnitus is. They just call it ‘tinnitus’. I tell them that it’s not regular tinnitus but even the ER can’t help. They said that tinnitus is not an emergency and I have to stop going to the ER for this. They said I should see a regional sub-specialist if the specialists can’t help. I will try to go to the Pulsatile Tinnitus clinic at UCSF and see if they can help. I am nearly suicidal from this. I also have severe vertigo. I can’t sit up straight or walk straight. I am bedridden and ready timo take my own life
I hope you find the treatment that will help you, I know where you're coming from. Don't give up, there must someone out there with an answer.🙏
i’m very sorry to hear this but how r u now? is it the sound that bad you want to commit suicide? 😢 or is it the vertigo bothering you?
I find this really interesting, I am 35 and also have Hypothyroidism and have been getting all of your symptoms. I’ve just had a contrast CT scan so waiting for these results. The pressure in my head when I bend down is intense with louder PT. Standing up quickly, I get loud and faster PT. It sounds very much like this actually! Wondering about the connection between Thyroid disease & venous stenosis? Thank you for sharing your story.
I appreciate this so much. I have been dealing with PT for five years. This podcast gives me hope
I can’t wait for my consult!
What is the risk of doing any upside down yoga or handstands, etc with Venous Sinus Stenosis? Good or bad idea? THANK YOU Jenna for your story- I have VSS and PT also. I appreciate you sharing your story. Thank you Dr. Patsalides for all this great information.
The suffering from PT is really painful
Thank you, very interesting 😊.
I believe it has something to do with the blood circulation in the brain. It's a pre diabetic symptom that you need to address with. I'm doing intermittent fasting and avoiding junk food. Prayer and self healing also helps. It's still a big mystery why this happened but you need to change your lifestyle and avoiding toxic environment and chemicals.
Once you said prayer and self healing all your credibility went out the window.
I've had pulsatile tinnitus for 6 months in my left ear. I did have fluid in my ear that cleared up. I have significant hearing loss. But i have continuous pulsatile sound in my left ear. How do i know for sure its not just hearing loss and might be from something like this. I am so miserable and it drives me crazy.
Do you remove fistulas that narrows the internal jugular vein??
I live in Australia and have had pt for6 months only.
I’m having to educate the drs I talk to about this from watching your videos .
I cannot seem to find anyone here that can help?
I asked to join whooshers unite but have not yet been accepted. It would help .
Can you recommend anyone here, anyone at all in Australia that can diagnose and treat this.
I’m having an mri on my request from dr to start with.
Any suggestions
My insurance (Cigna) has denied this and said it was experimental surgery. We have gone through multiple peer to peer reviews and the appeals process - all denied.
Any ideas or suggestions on going about this to get the surgery?
I am from India, how to contact doctor
please stop associate pulsatile tinnitus with iih, you might scare a lot of people who have pulsatile tinnitus
Thank you, very interesting 😊.