Hello Hela,(beautiful name by the way). Thank you for sharing your story. You are a warrior and you are tough but no doubt with a generous helping of softie as well. You are an encouragement. Thank you again.
What a wonderful doctor you will be! Where did you have your treatment? Thank you for guiding those of us who have ANs and are trying to see the light at the end of the tunnel.
Great testimony, great video. I too also had acoustic neuroma surgery for a fairly large tumor and six months after my surgery i had the gamma knife procedure to have rest of tumor removed. Just like you at the time of your video also was left with have hearing loss on one side and facial paralysis and still dealing with it. I wish you the best with your medical career.
God bless you ! I go next week to have a CT scan. I have a spinal cord stimulater so I can’t have an MRI. I have psoriatic arthritis so this new doctor I went to who is ton better than the specialist I was sent to last year. Well he told me it could be another autoimmune disease effecting my ear. Or acoustic neuroma. I am preparing myself much in the way I did when I had a hysterectomy and got my spinal cord stimulater. It’s my family I worry about. My illness has effected them so much I just don’t want them to suffer more. God will get us through this. Congratulations on becoming a doctor. You are beautiful. And I know you will do well with your up coming surgery so you can smile again. And I love it when my doctors are understanding. Your patients well love you too. There is a reason for everything under the sun. Take care, Leslye
You are so very beautiful and this is the first time I have seen someone with paralysis the same as mine. I've had 3 brain operations to remove my acoustic neuroma and the doctor's couldn't save my facial and hearing nerve. The fact that you can have corrective facial surgery is such a wonderful gift. May you continue to be blessed 🙌.
I'm 10 years late, but you're absolutely beautiful and brave for sharing your experience. How the first surgeon didn't move it raises questions about him. The 2nd surgeon though must have snipped one of your nerves unfortunately.
Your story is very heartbreaking. You mentioned that you would eventually have facial corrective surgery. Have you had this yet? My reason for asking is that I have had 2 acoustic neuromas. The 1st one was October 1986 at age 28 yrs (5cm), the 2nd was October 2018 at age 60 yrs, also 5 cm. After my 1st surgery I was left with facial paralysis. No point in my having corrective surgery now since I'm almost 65 yrs old. I would love to see a picture of you now. However, you are very beautiful and I'm so sorry that you had to endure such a traumatic experience. May God bless you👏.
WOW.You'v been through very hard one.You will be definately good doctor.You experienced it from patient side,which no doctors had a chance during study.I wish you the best.Mine AN was 2.1cm and I'm still in recovery.
@@HydraTower I'm doing good,7 years post op and no recurrence yet.Lost hearing on the left side and little facial palsy still left, otherwise fine.I wish you the best.
@@MB031 how could you been managing with unilateral hearing loss... Sorry for asking question . I would face the same diagnosed recently .still in dilemma to go for surgery or gama knife .
@@kmnagasrinivaskovvuru6147 I'm very well with left hearing loss, I hear all through right ear, just can't hear much where is too much background noise or people have to speak lauder to my right ear.I can't hear stereo nor dolby music or any surround sound,only mono, that sucks in movie theater but everyday life is fine...I was 39,relatively young and 3cm tumor,I decided for retrosigmoid approach surgery.It's tough few months after, yes .But I'm glad I did it.Gamma knife is good for small tumors 1cm,if larger, there can be risk that radiated mass or tissue around tumor could turn cancerous and also if you have symptoms pushing tumor on cerebellum or pons, those will not go away after gamma knife ,that radiation freezes or kills the mass, but the push of tumor is still there..I had those symptoms vertigo due to pushing on surrounding brain organs..So I wanted that mass out..everyone case is different, but the smaller tumor the better outcome ! The bigger mass the bigger issues afterwards...this tumor is tricky and depends who is doing the surgery as well..I hope that helps...good luck !
@@MB031 hello i m also post op for AN in 2015 recently mri done waiting for result just want to know how frequent u do mri mine is every 2 yrs I am having on n off migraine also left eye no tears also sometime numbness in tongue and muscle twitch hope all goes well
My dear girl You will be fine. Let me tell you for sure. Got mine removed in 1992. 3cm.Had similar post operation conditions. Much better as time passes. God Bless TG.
Amazing how you diagnosed yourself! Not fun either way 😢Nystagmus is what my first symptoms was.. now I’m trying to find out why I’m getting g dizzy when I look to the left or up 🤷♀️ wish me luck.. my problems have been happening for a few years now.
I did acoustic neurinoma surgery in 2004 at the age of 23. The tumor was 3.5 cm and was totally removed with right ear loss of ~80% . Since then I have recover a partial facial nerve kinesis and have tried biofeedback treatment. I am seeking more information about Baha machine and where I can found it in Europe. Any helpful is much appreciated
I hope U r a Dr now. Here goes my question, my balance is way worst than before surgery ( I need to walk with elderly trolley) still have headache, some days I'm still tired and sleepy, living dizzy Isa daily thing. Good things after surgery, I stopped my insomnia pills , I take them since I was 18, now I'm 49, 16 months from surgery never ever took a sleeping pill again. Other good thing is I have vomited 12 times in 16 months, before I used to vomited 3 or 4 times a day. I had the tumor and a blood clot which was bigger everything was removed. Don't know why but they said I was left with a thrombosis. Why? Thank U Dr.
Thank you for sharing your story, I have tinnitus,a twitching right eye, headaches ,pain behind left ear,facial numbness on right side.im scheduled for an MRI next week,my Dr. is checking for acoustic neuroma.Please let me know what other symptoms you have. Thank you...Dr. :)
dakurius wan hi I had acoustic neuroma a year ago. How are you doing now. You can look at my video on utube Jennifer Basdeo living with acoustic neuroma. Thank you.
Hi I understand you.I had a 6cm acoustic neuroma removed 6 years ago, I had my facial nerve severed so now living with permanent facial paralysis I also had a shunt put in with many more operations, now due surgery again in 2 weeks to remove a regrowth AN plus a cyst that is growing with it so this is one tough road but being strong is all you can be.
@@BoysLikeMeee Hi im doing OK thanks, I had translab surgery to remove my regrowth 15 weeks ago, it was much easier this time round so just hoping I don't see any signs of any acoustic neuroma again.🙂
Hello... Will you please share me about your experience with acoustic neuroma. Whether it is left or right? And also about gait(balance), body weakness - right or left? Please
@@prenitharuthramoorthy2944 Hi I had a giant sizes AN on my right side in 2013 then a regrowth AN on the same side in 2020 i had surgery both times to remove plus another surgery to put a permanent shunt in. I did loose my facial nerve so left with permanent facial paralysis and I've had balance issues for 10 years plus weaknesses all down my right side that has never got better.
I don't know what to say about this. My story could be very similar to yours. I'm currently studying for my USMLE step 1. I have had progressive hearing loss in my right ear for about 8 months. Just starting recently (about 1 week), I began to have tinnitus in the same ear as well. I saw an ENT the other day. She referred me for audiology exam and MRI. I'm so scared. I know there are many middle ear diseases that could produce unilateral hearing loss and tinnitus, but the gradual onset of my symptoms had got me very worried. I'm so scared.
Hi Hela. I am 25 year old male about to see my Dr. to tell her I believe I have an acoustic neuroma myself. For 1.5 years I have felt an increasing pressure in what I thought was my upper jaw, but now believe is inner ear. Got all wisdom teeth removed thinking it would solve the problem but no. Saw many other doctors on short-notice and they all said put oil in ear, come back and we'll clean your ear again. Never changed anything. Finally 2 weeks ago I started getting balance issues, could not sleep whatsoever and can't properly focus on something especially on the eye on the affected side. I hope I am wrong. Thanks for sharing your story.
hi how are you now,i also have a same problem i had a headache and next thing i had red eye i thought it was from headache the following day i had a blurred vision in my effected eye and my face was numb on the right side along with my right eye that was effected and i started losing my hearing on the left side the Drs dont know whats wrong but im also assuming it could be acoustic nueroma
@@KatieML Hi Katie, that really sucks. I had an MRI and they ruled out acoustic neuroma. I now believe I have some issue with my facial nerve related to my upper back. I have been on a nasal steroid and muscle relaxants for a month and have not seen any change. I still have slight balance issues. None of my symptoms have changed but I am glad I do not have an acoustic neuroma. I am going to try a chiropractor and massage plus physical therapy next. Good luck to you, I hope you're well soon and start seeing some relief.
@@stabhead7188 thanks im seeing a DR on the 15th ,to be honest im not scared i just want a relief on my eye cause its very difficult doing thing while you are half blind,we will get through this i believe
double vision, both eyes even after closing one,real hard head pain at my right side of head that vein, eye pain right side, little bit ear pain , sudden hearing loss at unexpected high moments, l[like your crush proposing you, completely unexpected] a vericose vein in right legand and please tell me if i need to look someone, am 16, male, thnx!
That lady had some incredible and unique experience and perspective on that event! That even reminds of Mark Ruffalo's case of the same type of tumor, which he dreamt about, and his doctor for an MRI even though the doctor was trying to convince him there was no troubles and agreed to the MRI only so that Mark could set aside his fears. I'm myself over 20 months after a retro-sigmoid surgery for giant (~51x40x31mm) vestibular schwannoma removal - in my case fortunately almost complete removal (3-5% of the tumor is left, mostly around my facial nerve to avoid damaging it). So ~20 months after the surgery is seems there's still no growth of the remainder, but I have a hydrocephalus that doesn't get better. It was originally caused by the tumor by compressing the 4th ventricle and disturbing the normal CSF reabsorption, so in the next weeks I'll get another surgery - intracranial shunt, to allow the CSF to leave and stop the ventricles swelling. So far I lost only my right-ear hearing (completely ... though I'm still trying to sing ... to unclear to me success :/ ). My facial nerve is fine - before the surgery I was feeling constant tiredness in my right face half, but now it's fine. But I got quite interested of your BAHA hearing aid! With my acoustic nerve being damaged I though regular cochlear implants would be useless. That only an ABI (Auditory Brainstem Implant) could restore some hearing in my right side (bypassing the ear and acoustic nerve), but as I understand ABI is really complex surgery, and because of the risk/benefits balance it's not really recommended for patients that have one healthy ear & hearing. So I'm really interested if BAHA hearing aid can be used in such cases!
You, young lady, are a true Hero. Keep this attitude and many doors will open for you in the future
Congratulations on becoming a DOCTOR!!! Your empathy makes you a wonderful doctor. 🎉🎉🎉
Hello Hela,(beautiful name by the way). Thank you for sharing your story. You are a warrior and you are tough but no doubt with a generous helping of softie as well. You are an encouragement. Thank you again.
you are a strong woman. God bless you! and wish you the best.
What a wonderful doctor you will be! Where did you have your treatment? Thank you for guiding those of us who have ANs and are trying to see the light at the end of the tunnel.
Great testimony, great video. I too also had acoustic neuroma surgery for a fairly large tumor and six months after my surgery i had the gamma knife procedure to have rest of tumor removed. Just like you at the time of your video also was left with have hearing loss on one side and facial paralysis and still dealing with it. I wish you the best with your medical career.
You are a brave and smart girl. God bless you my child.
Thank you for this video.
God bless you ! I go next week to have a CT scan. I have a spinal cord stimulater so I can’t have an MRI. I have psoriatic arthritis so this new doctor I went to who is ton better than the specialist I was sent to last year. Well he told me it could be another autoimmune disease effecting my ear. Or acoustic neuroma. I am preparing myself much in the way I did when I had a hysterectomy and got my spinal cord stimulater. It’s my family I worry about. My illness has effected them so much I just don’t want them to suffer more. God will get us through this. Congratulations on becoming a doctor. You are beautiful. And I know you will do well with your up coming surgery so you can smile again. And I love it when my doctors are understanding. Your patients well love you too. There is a reason for everything under the sun. Take care, Leslye
Thanks for sharing your story.
Keep going - well done on how far you've come my dear
God bless you young lady🙏❤️🙏
God bless you Hela, and thank you for sharing your story. I'm dealing with a similar issue and you are an inspiration to me. Thank you! xo
You are so very beautiful and this is the first time I have seen someone with paralysis the same as mine. I've had 3 brain operations to remove my acoustic neuroma and the doctor's couldn't save my facial and hearing nerve. The fact that you can have corrective facial surgery is such a wonderful gift. May you continue to be blessed 🙌.
Very inspiring and uplifting. May God bless you and keep you.
God bless you on your journey love from Ireland 🇮🇪
True hero,Great Inspiration,very very inspiring.
She is very very brave
May she be really great at whatever she does
Power to you lady
I'm 10 years late, but you're absolutely beautiful and brave for sharing your experience. How the first surgeon didn't move it raises questions about him. The 2nd surgeon though must have snipped one of your nerves unfortunately.
God bless you Hela🙏.
God bless you
Your story is very heartbreaking. You mentioned that you would eventually have facial corrective surgery. Have you had this yet? My reason for asking is that I have had 2 acoustic neuromas. The 1st one was October 1986 at age 28 yrs (5cm), the 2nd was October 2018 at age 60 yrs, also 5 cm. After my 1st surgery I was left with facial paralysis. No point in my having corrective surgery now since I'm almost 65 yrs old. I would love to see a picture of you now. However, you are very beautiful and I'm so sorry that you had to endure such a traumatic experience. May God bless you👏.
WOW.You'v been through very hard one.You will be definately good doctor.You experienced it from patient side,which no doctors had a chance during study.I wish you the best.Mine AN was 2.1cm and I'm still in recovery.
How are you doing today? I was just diagnosed with 2.5 cm
@@HydraTower I'm doing good,7 years post op and no recurrence yet.Lost hearing on the left side and little facial palsy still left, otherwise fine.I wish you the best.
@@MB031 how could you been managing with unilateral hearing loss...
Sorry for asking question .
I would face the same diagnosed recently .still in dilemma to go for surgery or gama knife .
@@kmnagasrinivaskovvuru6147 I'm very well with left hearing loss, I hear all through right ear, just can't hear much where is too much background noise or people have to speak lauder to my right ear.I can't hear stereo nor dolby music or any surround sound,only mono, that sucks in movie theater but everyday life is fine...I was 39,relatively young and 3cm tumor,I decided for retrosigmoid approach surgery.It's tough few months after, yes .But I'm glad I did it.Gamma knife is good for small tumors 1cm,if larger, there can be risk that radiated mass or tissue around tumor could turn cancerous and also if you have symptoms pushing tumor on cerebellum or pons, those will not go away after gamma knife ,that radiation freezes or kills the mass, but the push of tumor is still there..I had those symptoms vertigo due to pushing on surrounding brain organs..So I wanted that mass out..everyone case is different, but the smaller tumor the better outcome ! The bigger mass the bigger issues afterwards...this tumor is tricky and depends who is doing the surgery as well..I hope that helps...good luck !
@@MB031 hello i m also post op for AN in 2015 recently mri done waiting for result just want to know how frequent u do mri mine is every 2 yrs I am having on n off migraine also left eye no tears also sometime numbness in tongue and muscle twitch hope all goes well
Strong woman.
My dear girl
You will be fine.
Let me tell you for sure.
Got mine removed in 1992.
3cm.Had similar post operation conditions.
Much better as time passes.
God Bless
TG.
Hello
Since 1992 how often u do MRI also what's your latest report says does it grow again I am scared mine removed in 2015 hope it don't grow again
Amazing how you diagnosed yourself! Not fun either way 😢Nystagmus is what my first symptoms was.. now I’m trying to find out why I’m getting g dizzy when I look to the left or up 🤷♀️ wish me luck.. my problems have been happening for a few years now.
I did acoustic neurinoma surgery in 2004 at the age of 23. The tumor was 3.5 cm and was totally removed with right ear loss of ~80% . Since then I have recover a partial facial nerve kinesis and have tried biofeedback treatment. I am seeking more information about Baha machine and where I can found it in Europe. Any helpful is much appreciated
I hope U r a Dr now. Here goes my question, my balance is way worst than before surgery ( I need to walk with elderly trolley) still have headache, some days I'm still tired and sleepy, living dizzy Isa daily thing. Good things after surgery, I stopped my insomnia pills , I take them since I was 18, now I'm 49, 16 months from surgery never ever took a sleeping pill again. Other good thing is I have vomited 12 times in 16 months, before I used to vomited 3 or 4 times a day. I had the tumor and a blood clot which was bigger everything was removed. Don't know why but they said I was left with a thrombosis. Why? Thank U Dr.
Thank you for sharing your story, I have tinnitus,a twitching right eye, headaches ,pain behind left ear,facial numbness on right side.im scheduled for an MRI next week,my Dr. is checking for acoustic neuroma.Please let me know what other symptoms you have. Thank you...Dr. :)
dakurius wan hi I had acoustic neuroma a year ago. How are you doing now.
You can look at my video on utube Jennifer Basdeo living with acoustic neuroma. Thank you.
Hi I understand you.I had a 6cm acoustic neuroma removed 6 years ago, I had my facial nerve severed so now living with permanent facial paralysis I also had a shunt put in with many more operations, now due surgery again in 2 weeks to remove a regrowth AN plus a cyst that is growing with it so this is one tough road but being strong is all you can be.
Chris Spears: How are you doing now?
@@BoysLikeMeee Hi im doing OK thanks, I had translab surgery to remove my regrowth 15 weeks ago, it was much easier this time round so just hoping I don't see any signs of any acoustic neuroma again.🙂
Hello... Will you please share me about your experience with acoustic neuroma. Whether it is left or right? And also about gait(balance), body weakness - right or left? Please
@@prenitharuthramoorthy2944 Hi I had a giant sizes AN on my right side in 2013 then a regrowth AN on the same side in 2020 i had surgery both times to remove plus another surgery to put a permanent shunt in. I did loose my facial nerve so left with permanent facial paralysis and I've had balance issues for 10 years plus weaknesses all down my right side that has never got better.
Hela how are you now
I don't know what to say about this. My story could be very similar to yours. I'm currently studying for my USMLE step 1. I have had progressive hearing loss in my right ear for about 8 months. Just starting recently (about 1 week), I began to have tinnitus in the same ear as well. I saw an ENT the other day. She referred me for audiology exam and MRI. I'm so scared. I know there are many middle ear diseases that could produce unilateral hearing loss and tinnitus, but the gradual onset of my symptoms had got me very worried. I'm so scared.
Mit.07.AF how are you doing now???...how is your Tinnitus?...hope your ok...please let us know
How are you now?
What was it? Please reply
A tumor or what?
yes any update?
Sorry what you went thru
Update on her?
💝💝💝💝
Hi there I want know that what is the best treatment option for acustic neuroma either surgical or stato therapy
it depends..consult with your doctor.
😓😢😭
Hi Hela. I am 25 year old male about to see my Dr. to tell her I believe I have an acoustic neuroma myself. For 1.5 years I have felt an increasing pressure in what I thought was my upper jaw, but now believe is inner ear. Got all wisdom teeth removed thinking it would solve the problem but no. Saw many other doctors on short-notice and they all said put oil in ear, come back and we'll clean your ear again. Never changed anything. Finally 2 weeks ago I started getting balance issues, could not sleep whatsoever and can't properly focus on something especially on the eye on the affected side. I hope I am wrong. Thanks for sharing your story.
hi how are you now,i also have a same problem i had a headache and next thing i had red eye i thought it was from headache the following day i had a blurred vision in my effected eye and my face was numb on the right side along with my right eye that was effected and i started losing my hearing on the left side the Drs dont know whats wrong but im also assuming it could be acoustic nueroma
@@KatieML Hi Katie, that really sucks. I had an MRI and they ruled out acoustic neuroma. I now believe I have some issue with my facial nerve related to my upper back.
I have been on a nasal steroid and muscle relaxants for a month and have not seen any change. I still have slight balance issues. None of my symptoms have changed but I am glad I do not have an acoustic neuroma. I am going to try a chiropractor and massage plus physical therapy next.
Good luck to you, I hope you're well soon and start seeing some relief.
@@stabhead7188 thanks im seeing a DR on the 15th ,to be honest im not scared i just want a relief on my eye cause its very difficult doing thing while you are half blind,we will get through this i believe
How are you now. I have Tinnitus in one ear. Should i go for MRI?
@@sagarthurwal441 Yes you should i have tinnitus in my right ear and MRI showed 2cm acoustic neuroma
double vision, both eyes even after closing one,real hard head pain at my right side of head that vein, eye pain right side, little bit ear pain , sudden hearing loss at unexpected high moments, l[like your crush proposing you, completely unexpected] a vericose vein in right legand and please tell me if i need to look someone, am 16, male, thnx!
Hello .... Can you please tell me about gait in acoustic neuroma? Whether the body weakness will be ipsilateral or contralateral?
Facial paralysis for 3 years
I have facial paralysis for 3 years
qwer
@abeautifullifei Twitter
This is horrifying
God only send this things to strong people. We r the choosen strong ones.
Per favore,traducendo in italiano! Grazie
You could have done radiation after first surgery
That lady had some incredible and unique experience and perspective on that event!
That even reminds of Mark Ruffalo's case of the same type of tumor, which he dreamt about, and his doctor for an MRI even though the doctor was trying to convince him there was no troubles and agreed to the MRI only so that Mark could set aside his fears.
I'm myself over 20 months after a retro-sigmoid surgery for giant (~51x40x31mm) vestibular schwannoma removal - in my case fortunately almost complete removal (3-5% of the tumor is left, mostly around my facial nerve to avoid damaging it).
So ~20 months after the surgery is seems there's still no growth of the remainder, but I have a hydrocephalus that doesn't get better. It was originally caused by the tumor by compressing the 4th ventricle and disturbing the normal CSF reabsorption, so in the next weeks I'll get another surgery - intracranial shunt, to allow the CSF to leave and stop the ventricles swelling.
So far I lost only my right-ear hearing (completely ... though I'm still trying to sing ... to unclear to me success :/ ). My facial nerve is fine - before the surgery I was feeling constant tiredness in my right face half, but now it's fine.
But I got quite interested of your BAHA hearing aid!
With my acoustic nerve being damaged I though regular cochlear implants would be useless. That only an ABI (Auditory Brainstem Implant) could restore some hearing in my right side (bypassing the ear and acoustic nerve), but as I understand ABI is really complex surgery, and because of the risk/benefits balance it's not really recommended for patients that have one healthy ear & hearing.
So I'm really interested if BAHA hearing aid can be used in such cases!
I would love to know if she ever gave an update on her last surgery.