Thank you so much for all you are doing to discover more about living with an acoustic neuroma. I was diagnosed just over a year ago and it’s wonderful to think that fantastic people like yourselves are working so hard to help patients like myself.🇬🇧
I get depressed a lot! Have meltdowns over silly things that happen. Can’t hear much in left ear. Getting 2nd mri in 6 months. At least i’m 64. On the down side of my life :)
My MRI showed no further growth so it's now going to be a year before scanning asgain. The headaches I can manage easily with sumatriptan but the ear fullness and especially the tinnitus is debilitating and 24/7 with no restbite. I had crazy vertigo episodes right at the beginning before the diagnoses but no longer have that symptom. I did get acupunture to treat vertigo after running out of options and it simply went away straight after, whether the vertigo cleared up by itself or it was the acupunture I'll never know but it stopped right after the treatment.
This is how i found out i have a Accoustic neuroma. One day after dinner i got a very bad vertigo attack, i waited 2 days and it didn't disappear. I went to the ER and they did an mri and found the tumor. After 3 days in the hospital the vertigo got manageable. Ever since i am a little unbalanced and i have some vertigo problems but not as severe as the first attack where i would fall over. I have not take any medications or operations or other treatments ad yet.
Finally the questions are asked, one would think that quality of life is #1 ...questions of headaches, loss of hearing as well as all the other outcomes are just as important as quality of life yet imagine going through a brain surgery, radiostatic or cutting the skull and coming up with all this,that folks loose their house or way of life bc of the costs of these treatments...hope all of the Surgeons are made mandatory to update their training and treatments after hearing the facts as you stated...sadly the quality of life took this long and answers yet most pcp's ent's and neurologist that given ancient information on a very most scary invasive surgeries one can go for...holistic health care is most important, thank you for sharing your research or make it mandatory as it now considered rare and many people would benefit from receiving the most accurate information. Sincerely appreciated Grace 🙏 ❤️
Hi Mark. I’ve just watched all your videos regarding your surgery. I found it very interesting. I hope you’ve made a complete recovery? I suspect I might have something similar. I am now completely deaf in my left ear with annoying tinnitus, dizziness and headaches. I’ve not been diagnosed yet apart from my self google diagnosis. I know it’s not wise!! I’m still awaiting an appointment with ENT. It’s been almost 6 months. It would be interesting to hear how things went after your surgery?
Id love to have some help with making decision with Facial Nerve Neuroma? Nov 2022 I only notice such a suble difference with my right ear at night (sharpness or brightness of hearing) but really I dont feel anyone else would notice. I belong to a choir and with with the elderly in Dementia care so am more acutely aware of hearing. I had irrigation and only develpoed symptoms after this. The Gp said after the nurse tried irrigation 'there is water behind your ear drum and it looks a little stretched, possible from a passed ear infection, and there is also skin there this is why the nurse could not see your ear drum.' So a nine month wait for ENT. I have since had a CT scan and MRI and have been told it is all one thing the polyp in my outer ear canal leading into the masdoid bone with erosion of the masdoid and canal wall. I am concerned that it is the fluid in the middle ear that has caused erision. I think overall it must be that my ear is not functioning as well and so couldnt get rid of the fluid from the irrigation. It was mentioned I have an issue with my eusation tube at first ENT app end of July. I have been told I have conductive hearing loss high frequency down to 70db and mid to low 30db. MY quality of life is effected atm by hearing my voice as if its inside my head and made worse when there is noise. SO i can no longer go to choir, I have tried over this year but not singing and mouthing the words just makes me feel worse!! I also love yoga and so concerned about my blanace being effected. As atm all I know is they will watch and wait re operating. I really hope ENT will eventually help with the eustatian tube, so I can go to choir and no further risk to my ear with things like cholestatoma etc... I hope i get my hearing restored!
Thanks for your efforts Could you please I have been diagnosed as an endo lymphatic hydrobs with tinnitus and hearing loss (Rigth 4 years and now the left for 8 monthes ) and (5 times yearly) vertigo My question is what is the defferent between the neuroma vestibular tumor and the endo lymphatic hydrobs tumor I should be grateful if you let me know the whatsapp account
Thank you so much for all you are doing to discover more about living with an acoustic neuroma. I was diagnosed just over a year ago and it’s wonderful to think that fantastic people like yourselves are working so hard to help patients like myself.🇬🇧
I get depressed a lot! Have meltdowns over silly things that happen. Can’t hear much in left ear. Getting 2nd mri in 6 months. At least i’m 64. On the down side of my life :)
Great info! Thanks.
My MRI showed no further growth so it's now going to be a year before scanning asgain. The headaches I can manage easily with sumatriptan but the ear fullness and especially the tinnitus is debilitating and 24/7 with no restbite. I had crazy vertigo episodes right at the beginning before the diagnoses but no longer have that symptom. I did get acupunture to treat vertigo after running out of options and it simply went away straight after, whether the vertigo cleared up by itself or it was the acupunture I'll never know but it stopped right after the treatment.
This is how i found out i have a Accoustic neuroma. One day after dinner i got a very bad vertigo attack, i waited 2 days and it didn't disappear. I went to the ER and they did an mri and found the tumor. After 3 days in the hospital the vertigo got manageable. Ever since i am a little unbalanced and i have some vertigo problems but not as severe as the first attack where i would fall over. I have not take any medications or operations or other treatments ad yet.
Finally the questions are asked, one would think that quality of life is #1 ...questions of headaches, loss of hearing as well as all the other outcomes are just as important as quality of life yet imagine going through a brain surgery, radiostatic or cutting the skull and coming up with all this,that folks loose their house or way of life bc of the costs of these treatments...hope all of the Surgeons are made mandatory to update their training and treatments after hearing the facts as you stated...sadly the quality of life took this long and answers yet most pcp's ent's and neurologist that given ancient information on a very most scary invasive surgeries one can go for...holistic health care is most important, thank you for sharing your research or make it mandatory as it now considered rare and many people would benefit from receiving the most accurate information. Sincerely appreciated Grace 🙏 ❤️
Thanks so much!!!
Dizziness (vertigo) isn't the same as unbalanced.
Hi Mark. I’ve just watched all your videos regarding your surgery. I found it very interesting.
I hope you’ve made a complete recovery?
I suspect I might have something similar.
I am now completely deaf in my left ear with annoying tinnitus, dizziness and headaches. I’ve not been diagnosed yet apart from my self google diagnosis. I know it’s not wise!!
I’m still awaiting an appointment with ENT. It’s been almost 6 months. It would be interesting to hear how things went after your surgery?
It is fully curable hai
Hello, are you guys sending this survey to new diagnosed people?
Id love to have some help with making decision with Facial Nerve Neuroma? Nov 2022 I only notice such a suble difference with my right ear at night (sharpness or brightness of hearing) but really I dont feel anyone else would notice. I belong to a choir and with with the elderly in Dementia care so am more acutely aware of hearing. I had irrigation and only develpoed symptoms after this. The Gp said after the nurse tried irrigation 'there is water behind your ear drum and it looks a little stretched, possible from a passed ear infection, and there is also skin there this is why the nurse could not see your ear drum.' So a nine month wait for ENT. I have since had a CT scan and MRI and have been told it is all one thing the polyp in my outer ear canal leading into the masdoid bone with erosion of the masdoid and canal wall. I am concerned that it is the fluid in the middle ear that has caused erision. I think overall it must be that my ear is not functioning as well and so couldnt get rid of the fluid from the irrigation. It was mentioned I have an issue with my eusation tube at first ENT app end of July. I have been told I have conductive hearing loss high frequency down to 70db and mid to low 30db. MY quality of life is effected atm by hearing my voice as if its inside my head and made worse when there is noise. SO i can no longer go to choir, I have tried over this year but not singing and mouthing the words just makes me feel worse!! I also love yoga and so concerned about my blanace being effected. As atm all I know is they will watch and wait re operating. I really hope ENT will eventually help with the eustatian tube, so I can go to choir and no further risk to my ear with things like cholestatoma etc... I hope i get my hearing restored!
Sacral sachwomma tumor ka solution
How does removing a large tumor that is pressing on the brainstem make the person feel better? What symptoms may be lessened or go away?
Seizures stopped. Facial paralysis moved lower.
Türkçe atyazı istiyoruz.Lutfen
Last dec I went through the surgery to remove tumor.. now facing several side effects
Which hospital u consult and surgery
I consult nimhans Bangalore
@@pinkys2822 siims Chennai
الو
Thanks for your efforts
Could you please I have been diagnosed as an endo lymphatic hydrobs with tinnitus and hearing loss (Rigth 4 years and now the left for 8 monthes ) and (5 times yearly) vertigo
My question is what is the defferent between the neuroma vestibular tumor and the endo lymphatic hydrobs tumor
I should be grateful if you let me know the whatsapp account