It’s been 4 weeks from I had my Gamma knife surgery for my Acoustic Neuroma and my Balance is terrible! I feel so dizzy and all the same symptoms you have basically. I live in Belfast Northern Ireland and the worst thing for me is loneliness because my ex husband and I got Divorced 8 yrs ago and I never found anyone else and now I live alone. I wish you a the best and glad you do have a wife to help you and for company.
Ed, thank you so much for making these videos, they're so very informative for me personally, and great to also share with others who may be dealing with these same issues or for those who do not fully understand what you're experiencing . It's extremely difficult for me to verbalize and speak what I'm feeling to the doctors or anyone. I don't know if it's anxiety, lack if blood flow to my brain, or everything. In my case I have not yet had surgery, or Gamma Knife, but I am experiencing a lot of the symptoms that you have. I am on very strong painkillers, Gabapentin and anti-anxiety medication even though I wish I could manage without them. I've been having annual MRI's so they've been monitoring the growth since 2015 when it was found by accident. This January 2023 it's grown some more, and it's ( 9cm x 9cm x 1cm). It's also a Vestibular Schwannoma/acoustic neuroma, growing in a nerve sheath in between the carotid artery and internal jugular vein also on the left side for me. So, something's causing very sudden stabbing neck pain and headaches that can last for two weeks. It's just torture. The room feeling as if it's rolling end over end is a new issue, and it's happened several times now without much warning at all. This began last month, in March. Neurosergeon at UM Sylvester Miami has my latest MRI, and CT SCAN done this month on the 10th. She doesn't see anything in the reports that would cause dizziness, and of course since pain cannot be seen, she believes that the tumor and the headaches are unrelated. My pain management Dr. also saw my CT SCAN report, and he said yes, this can definitely be a cause for my dizziness, (vertigo.) And as I'm sure you know already, stress leading to anxiety only increases and magnifies these issues mentioned. I'm also caring for my aging mom who was recently diagnosed with atrophy of the brain. I'm not married. I commend your wonderful wife for being there for you, and you also Ed for being brave enough and able to somehow find the energy to even make these videos. You put into words what I cant. Onto video #1 now. -Nelson
Hi I love watching your posts I am nearly 4 months post op and a lot of what you experience I do too and it helps me to understand what I am experiencing I’m not alone and it’s not just me No one has told me really what to expect after surgery just the basics really and I’m not sure of the do’s and donts at the moment but I will make sure I ask when I go to my follow up appointment Thankyou I’m from the 🇬🇧 uk
Ed, thank you so much for putting these videos. I’m 7 months post-op retrosigmoid. Mine was 3cm in size and I’m experiencing many of the same issues with my short term memory and vestibular issues. I went to vestibular therapy for about 4 months and I feel more sure-footed, but I still have the constant feeling of dizziness and disorientation like you do whenever I move my head. Did that eventually go away for you? I have driven a few times short distances, but I don’t feel comfortable driving anything beyond 2 or 3 miles.
Additionally, I miss the ability to shed tears on my AN side. Immediately after surgery i couldn’t close my eye right away but that came back after a few weeks. I also have tinnitus even though I’m completely deaf on my AN side. When I shift my eye from side to side my tinnitus also shifts pitch. It’s very frustrating to live with.
One year is not enough to see all improovments,it's very individual it can take years,most of the doctors say 2 years is the peak.I'm 20 mo postop now and finally getting back to new normal.The dizziness will get much better around 18mo postop,at least my case.I used to have fobias of falling shelfes when walking aisles at the grocery store and get really unsteady there,but holding shopping cart helped me a lot.I'm doing well now,I'm glad the hell is behind me..good luck and hold on. :)
Hang in there Ed. You are very brave and very inspiring. You are in my thoughts and prayers and will remain there.
It’s been 4 weeks from I had my Gamma knife surgery for my Acoustic Neuroma and my Balance is terrible! I feel so dizzy and all the same symptoms you have basically.
I live in Belfast Northern Ireland and the worst thing for me is loneliness because my ex husband and I got Divorced 8 yrs ago and I never found anyone else and now I live alone.
I wish you a the best and glad you do have a wife to help you and for company.
Ed, thank you so much for making these videos, they're so very informative for me personally, and great to also share with others who may be dealing with these same issues or for those who do not fully understand what you're experiencing . It's extremely difficult for me to verbalize and speak what I'm feeling to the doctors or anyone. I don't know if it's anxiety, lack if blood flow to my brain, or everything.
In my case I have not yet had surgery, or Gamma Knife, but I am experiencing a lot of the symptoms that you have. I am on very strong painkillers, Gabapentin and anti-anxiety medication even though I wish I could manage without them. I've been having annual MRI's so they've been monitoring the growth since 2015 when it was found by accident. This January 2023 it's grown some more, and it's ( 9cm x 9cm x 1cm). It's also a Vestibular Schwannoma/acoustic neuroma, growing in a nerve sheath in between the carotid artery and internal jugular vein also on the left side for me. So, something's causing very sudden stabbing neck pain and headaches that can last for two weeks. It's just torture. The room feeling as if it's rolling end over end is a new issue, and it's happened several times now without much warning at all. This began last month, in March.
Neurosergeon at UM Sylvester Miami has my latest MRI, and CT SCAN done this month on the 10th. She doesn't see anything in the reports that would cause dizziness, and of course since pain cannot be seen, she believes that the tumor and the headaches are unrelated. My pain management Dr. also saw my CT SCAN report, and he said yes, this can definitely be a cause for my dizziness, (vertigo.) And as I'm sure you know already, stress leading to anxiety only increases and magnifies these issues mentioned.
I'm also caring for my aging mom who was recently diagnosed with atrophy of the brain. I'm not married. I commend your wonderful wife for being there for you, and you also Ed for being brave enough and able to somehow find the energy to even make these videos. You put into words what I cant.
Onto video #1 now.
-Nelson
Hi I love watching your posts
I am nearly 4 months post op and a lot of what you experience I do too and it helps me to understand what I am experiencing I’m not alone and it’s not just me
No one has told me really what to expect after surgery just the basics really and I’m not sure of the do’s and donts at the moment but I will make sure I ask when I go to my follow up appointment
Thankyou
I’m from the 🇬🇧 uk
susiehoult51 I'm pleased that the videos have been helpful for you. If you have any questions, please feel free to ask.
Ed Engelking II Thankyou 🙂
Ed, thank you so much for putting these videos. I’m 7 months post-op retrosigmoid. Mine was 3cm in size and I’m experiencing many of the same issues with my short term memory and vestibular issues. I went to vestibular therapy for about 4 months and I feel more sure-footed, but I still have the constant feeling of dizziness and disorientation like you do whenever I move my head. Did that eventually go away for you? I have driven a few times short distances, but I don’t feel comfortable driving anything beyond 2 or 3 miles.
Additionally, I miss the ability to shed tears on my AN side. Immediately after surgery i couldn’t close my eye right away but that came back after a few weeks. I also have tinnitus even though I’m completely deaf on my AN side. When I shift my eye from side to side my tinnitus also shifts pitch. It’s very frustrating to live with.
One year is not enough to see all improovments,it's very individual it can take years,most of the doctors say 2 years is the peak.I'm 20 mo postop now and finally getting back to new normal.The dizziness will get much better around 18mo postop,at least my case.I used to have fobias of falling shelfes when walking aisles at the grocery store and get really unsteady there,but holding shopping cart helped me a lot.I'm doing well now,I'm glad the hell is behind me..good luck and hold on. :)