Post-Treatment > Cognitive/Emotional Issues

Foggy/lightheadedness

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Barb56:
I had my acoustic neuroma surgery mid May 2016.  Went home from hospital three days later.  I had the expected outcome of little to no hearing in left ear.  The tinnitus I had in that ear prior to surgery returned at about 1 month post surgery, and was unfortunately louder.  Otherwise I was feeling pretty well, clear headed, little or no dizziness, and no headaches.  At six weeks I was continuing to improve and began short bike rides and light work outs along with the walking.  At about 8 weeks I went back to work half days (accounting). 

Beginning Mid July or so I began getting the feeling of foggy/lightheadedness.  It has progressively gotten worse since then.  When I get up in the morning I feel okay, but as the day goes on and the longer I am upright the worse it gets.  I am literally exhausted from it by the end of each day.  I have been back and forth with the neuro surgeon and the head and neck surgeon who did my surgery jointly to no avail for a solution.  I saw a neurosurgeon on Friday and he has an inkling that I may have a spinal fluid leak.  I don't have the typical clear runny nose normally associated with that situation. 

Has anyone had a similar experience? 

ForumParticipant:
I was recently diagnosed and one of my symptoms is brain fog. I found this article on vestibular disorders helpful: https://vestibular.org/sites/default/files/page_files/Documents/Cognitive%20Aspects%20of%20Vestibular%20Disorders.pdf

Best of health to you!

bethtretrault:
THANK-YOU for this link. I have been so worried about what seem to be my decreased ability to function and my increased propensity to make mistakes. Not to mention the way I sometimes I just say what I think (when I used to be a really good at being careful in my delivery). It just feels better to have an explanation.
 

ColleenS:

--- Quote from: ForumParticipant on December 22, 2016, 08:10:37 pm ---I was recently diagnosed and one of my symptoms is brain fog. I found this article on vestibular disorders helpful: https://vestibular.org/sites/default/files/page_files/Documents/Cognitive%20Aspects%20of%20Vestibular%20Disorders.pdf

Best of health to you!

--- End quote ---

Thank you so much for sharing this. I have been experiencing much of this and I worried it might be permanent. I had some complications and needed an additional surgery in the same incision 12 days later to repair a CFL and am still on steroids due to swelling issues. Anyway, this was very encouraging to me.

jim j:
I just found this on ANA website and said finally I am not the only person dealing with these issues.  I also thought maybe I can find an answer has to why I experience these things. In 2003 I was diagnosed with a 3.4cmx 5cm acoustic neuroma pushing on the brain stem. I never knew I had it except for the fact my wife said I was deaf in that ear and needed to check it out. I was only 40 yrs old and at the peak of my carrier as a Superintendent running large structural steel jobs in NYC for Local 40. I had just recovered from back fusion in 2001.  In 2003 my wife and children demanded I see a ENT so I went. She ran test and found I was not getting a signal from the ear to the. Brain therefore I was deaf. Then came the MRI on Dec. 20th. I received a call on Dec.24th and the ENT wanted to see me on the 26th. I asked why what is wrong it is Christmas please tell me me. So she proceeded to tell me over the phone that I had a large Brain Tumor called an An and needed to have it removed right away as it was pushing the brain stem off it's center line. I asked to keep it between us and did not asked any questioned. I heard her hang up then as I proceeded to hang up I heard a click. Well it was my 14 yr old son on the other line. Of course I had to explain to him it was something we need to deal with and he can hep me find the best Neurosurgeon. We did in 2 months and 4 interviews I found with my son and wife the best in NYC. He removed the tumor after a 12 hr craniotomy in which I was left with no facial movement on the left side and could not walk or talk. I was by myself in NYC hospital has it was February and the worse Northeastern storm to hit left 20 inches of snow so no one could get down to see me for days. It was a blessing I was in no shape to see anyone. I spent 6 months in rehab but I was never the same. I again tried and succeeded to go back to work but found I could not do it. It took 1.5 yrs to get to that point but I had no balance and dizziness was bad I feel asleep a lot so I had to retire after 20 years. I was told to have a MRI in a few yrs and I did. Oh no here we go again they found the nucleus was not fully resected has thought and I had a small tumor left over. I kept watching and it kept growing. In 2015 I went to NYU and was told I needed to take care of it agin. I had a choice great right. Surgery or GK. I went home thought it over and went for GK in February of 2016. I thought GK was suppose to be easy.  I can tell you it was not. I got so sick 4 months later I was told you might have bone cancer and we need to do a bone marrow extraction. I was sick tired could not do much dizzy all the time We did the procedure and found nothing so it was determined it could have been from the radiation. But I thought the radiation was pin pointed thought that head brace and the machine they used. I had installed the very first Gamma Knife machine in the USA when I was younger and I asked what was this for ? When told I said I feel sorry for any person that might have a brain tumor yet here I was. I am still suffering so many symptoms I can't overcome. I have overcome many challenges in my life, never give up yet here I am suffering with a head that feels like it's not mine. I was diagnosed with deep brain sleep Apnea and no way to fix it. I don't sleep but 2 hrs and then I am awake, I feel tired all day.  I went to the mall with my wife within 1 hr I was so dizzy and my head could not think Cleary I could not walk straight. My wife took me out. On the way out a security guard came by has he was called and told there was a man that seemed drunk and needed help?  Imagine I was not drunk not taking drugs just living through a real tough time.  But I ask what is this? Why is this? I can't get right. I don't want to live this way. I want my life back. I did vestibular therapy as told both times. I try to walk but my back needs more surgery I have multiple herniated discs but my head feels like I have a alien in there. It feels as if it needs to be removed cleaned out and I would feel better. Is this life. I have always been positive yet here I sit writing to someone , anyone for answers. The Doctors just want me to take meds. No That is not the answer. I need my head back. Please if you have these issue let me know what you are doing for help. Thank you for listening to my long message but I need help and have tried everything. Jim

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