ANA Discussion Forum

Post-Treatment => Cognitive/Emotional Issues => Topic started by: Barb56 on October 01, 2016, 07:17:18 pm

Title: Foggy/lightheadedness
Post by: Barb56 on October 01, 2016, 07:17:18 pm
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? 
Title: Re: Foggy/lightheadedness
Post by: 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:

Best of health to you!
Title: Re: Foggy/lightheadedness
Post by: bethtretrault on December 23, 2016, 05:12:29 am
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.
Title: Re: Foggy/lightheadedness
Post by: ColleenS on June 10, 2017, 10:23:24 am
I was recently diagnosed and one of my symptoms is brain fog. I found this article on vestibular disorders helpful:

Best of health to you!

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.
Title: Re: Foggy/lightheadedness
Post by: jim j on November 02, 2017, 09:45:12 am
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
Title: Re: Foggy/lightheadedness
Post by: jim j on November 02, 2017, 01:47:09 pm
Thank you so Much for this Link I never heard of VEDA but they found a Dr in my area that I might be able to get help with.
Title: Re: Foggy/lightheadedness
Post by: milhaus on November 02, 2017, 09:01:22 pm
jim j:

I too have felt like I have had continuous problems with dizziness and lightheadedness. It started around a year before I was diagnosed, and even after translab and physical therapy I still just feel lightheaded and dizzy most of the time. I think I can fully sympathize with what you are going through. I have had multiple other health issues as well that just makes the acoustic neuroma icing on the cake. Mine was also pressing on my brain stem, which meant I was rushed into surgery pretty quickly. I was diagnosed as a 23 year old college student who (before all these health problems began) had everything going. Things have never been the same for me since either. Unfortunately I can't tell you about any therapy you haven't heard of, or any miracle cure that worked for me. I am 27 now, and still struggling everyday to keep my life together. It is so hard to get up everyday, go to work and work hard, stay positive, keep up with all the housework, and interact with people normally when you just feel horrible all the time. I not only have this foggy/dizzy/light headed feeling going on, and like many of us here single sided deafness, but I am also blind in one eye from cancer. I think that might also contribute to my dizziness. I also have mysterious stomach problems and joint pains which I haven't figured out yet. Since my initial diagnosis 4 years ago, I have had 8 surgeries including two translab brain surgeries. One 18 hours long and the other 8. My wife wants children, but my brain tumor has interfered with my fertility by causing low testosterone levels and we are working to correct that.

I wonder every day whether or not I am going to be able to live a somewhat normal life, or are my ailments going to get the best of me? Will I be able to start a family, develop a career, and push through my own misery enough to enjoy life? Can I fake normal? I am trying. One way I try to describe how I feel to people sometimes is that my brain doesn't feel properly connected to my body. What keeps me going is my wife. We started dating in high school at the ages of 14 and 15 and have basically been inseparable every since. She loves me to no end, and I love her just as much. I feel like almost all of my enjoyment in life comes from spending time with her. So I just keep going, because I don't want to let her down. I struggle a lot with guilt, because I feel like I already have let her down.

When we got married at the ages of 18 and 19, I already felt like I had the world on a string and was going to give her everything she ever wanted. My health has been such a problem that I may not even be able to give her the one thing she wants most in the world: children. That hurts. I just keep going every day though, because as long as I am still breathing I will never give up for her. I am working full time, taking full time college classes, and taking fertility drugs as well. I struggle deeply with depression, and sometimes I wonder if I can really keep this up. I am only 27, how am I gonna do this for another 40 or 50 years? It always feels like another health problem or complication is right around the corner.

I can't offer you a miraculous escape to your suffering. What I can do is let you know that there are others out there who are going through similar circumstances and that you don't have to feel alone. I can encourage you. I am not going to give up, and neither are you jim j. I know that I will struggle with these health problems for the rest of my life, and so will you. We both want back what we have lost, but life sadly doesn't work that way. There are many horrors in life, and so much pain and suffering. There is beauty, bliss, and love as well. I don't know what your relationship with your family is like, but my wife is what keeps me going. Seeing her smile and feeling her approval when I come home to her open arms at night after a long day is worth all the pain I can take.

If your family is like most, then they love you very much and want you to be a part of their lives. They know you are suffering, and probably don't know what to do to help. They forgive you for your shortcomings, because they know you are going through something they themselves aren't sure they could endure. My advice to you would be to focus on them. When you focus on yourself all you will find is your own misery, and shortcomings because of your health. Focus on them, and what you can do for them even in your present state. Even if it is just being there, in their lives. If you are anything like me, then leave the guilt behind and forgive yourself too. I don't mean to be overly presumptuous, but I have struggled a lot with feeling bad about the way my life has turned out because of my health issues. Find enough happiness and strength in your family to endure.
Half of the game is mental. We have real physical problems that lead us to misery, but I have met many people who have endured horrible life circumstances with a grace and happiness that I can't even comprehend. Your mental state has a huge impact on the way you feel regardless of what physically ails you. I  think our best bet to feel better is to focus on improving our mental state, because the physical one has already had irreparable damage done. 

Best of luck,

Title: Re: Foggy/lightheadedness
Post by: jim j on November 05, 2017, 08:59:03 pm
Milhaus, You are so right concerning everything said. I don't feel sorry for myself nor self pity.  I feel sorry for my 3 children and grandchildren and my loving wife who has been there with me through this 14 yr. ordeal.  I get angry when my daughter and son inlay who have twins a girl and a boy 4 yrs. old.  They always ask for us to go with them and maybe go out to diners.  They know how I feel about going out to diner and the noise. We try to work around the hrs. so less people in the place we go to eat. I do my best to stick it out but when I get to the point I start to zone out I would call it they know the kids. They look at me and try to rush that I feel bad about. I would love to sit talk laugh eat. Holiday time is worse when you get the whole family together of 30-40 people in a house and I have to go into a bedroom and lie down do to the dizziness. I can't eat I get sick to my stomach and I try to sneak out for a while. What hurts the most is I was a strong man physically and mentally I was the glue that held things together. I coached all my kids when they where young. I was the guy that said eliminate the negative excunate the positive. I love life everything about life was good. I sat here in my house today because we had a low come in with a lot of rain and the headache is much worse on these days. I just feel so sad they I am troubling my wife and kids. I am 58 and should still be working, running jobs. I love to work and the comradely I had with all the men just made the days go fast.
I am so sorry to hear about your condition and you are so young I should not be laying this on you my son's age. I will pray for you that you work through it and hope you can get to feeling better. I sorry you had to go through that at such a young age. I do try to stay positive and I hope you keep it positive also. What angoras me it I was not this bad after the craniotomy 12 hrs long. Yes it took 6-12 months to feel somewhat normal but I was told the GK was nothing and no side effects. Yet here I sit worse then before that procedure. I thank you for your reaching out to me and putting things in perspective I really do. I know what you mean by you feel like you already let her down I feel that but you have not. She is your wife and from what you have said it's love through the good and the bad. You are very lucky to have a wife like yours. I wish you the best and Thank You again.Jim
Title: Re: Foggy/lightheadedness
Post by: Patti on November 06, 2017, 08:13:52 am
I feel so deeply for both of you.  I feel great because of the changes i have made in my life to accommodate my issues (although they are not as severe as either of yours).  But I do stay away from crowds most of the time.  And I have had to retire (2nd time-first I retired from teaching after my first surgery which really messed with my brain)  My memory to learn new things really sucks.  My part-time second career was that of a paralegal.  I did it for 8 years because the lawyer was a friend. I had to dismiss myself from the job because I could see that she could use someone more on the ball.  But i want to tell both of you that i see a psychiatrist a couple of times a year to get prescriptions and a therapist every month.  All of this since my initial surgery 17 years ago.  I have been prescribed lexapro from the start because of my depression.  I have also had a sleep problem since then and I take ambien (17 years and still effective) and am taking 1 mg of clonazepam at night to deel with anxiety that affects my sleep.  The medicines make my life great and allow me to function properly during the day.  At first i felt guiity over needing these drugs, but if I were diabetic should i feel guilty over needing insulin? 
Title: Re: Foggy/lightheadedness
Post by: Crazycat on November 20, 2017, 07:06:43 pm
Hi Patti,

  My surgery was 17 years ago as well. I'm starting to get some regrowth now (2mm over the past 10 years or so). How did they treat your regrowth? It's looking like regular stereotactic radiation for me, but sometime over the next year or two. I am also afflicted with what's called "overshunting", or, too little CSF in my head. Too little can be as dangerous as too much, and there's not much that can be done for it.

My initial tumor was about the size of an egg, so I was told by my neurotologist. The discussion went something like this:

Me - So, it was 5cm x 5cm, the size of a golfball, huh?
Dr - Oh no, somewhere in between a golfball and a hardball (baseball). We (he and the brain surgeon) still talk about it to this day!
Title: Re: Foggy/lightheadedness
Post by: ANSydney on November 20, 2017, 09:33:33 pm
If you have a shunt installed and overshunting, can't you get the shunt opening pressure adjusted?
Title: Re: Foggy/lightheadedness
Post by: Crazycat on November 20, 2017, 11:31:09 pm
No. Not in my case at least. It is permanently set. Right now I'm not really feeling any different than I have over the past 12 years since my surgery, (not 17 years as I mistakenly said previously); the usual left-side deafness, lightheadedness, double vision and facial numbness on the AN side. My head feels like a lead-lined helium balloon, floating above and behind my head. The doctor said if the overshunting was bad I'd be getting headaches every time I stood up. I'm not getting far anyway. What's happening is that the lack of CSF pressure which cushions the brain from the skull is allowing the brain to expand, creating an inverse kind of pressure.

I have to say that, reading through the testimonials posted by other patients, and with the size of my AN, I'm very fortunate to have come through the ordeal was well as I have.

We'll just have to see what next year's MRI scan will reveal.

Title: Re: Foggy/lightheadedness
Post by: ANSydney on November 21, 2017, 12:12:35 am
More correctly, you would get headaches whenever your spine is vertical, rather than when your stand up. Sitting straight up is like standing as far as intracranial pressure goes.

Can your shunt be made to be adjustable pressure?
Title: Re: Foggy/lightheadedness
Post by: Crazycat on November 21, 2017, 04:53:29 pm
Good question about sitting or standing. Sometimes I think I'm beginning to feel the headaches coming on. Today, no problems.
I do get tired and need to stretch out several times a day. And no, the shunt is not adjustable, and, short of removing the shunt (which is very dangerous) then there is nothing that can be done and I'll have to learn to live with it. If this situation with the overshunting is a progressive one, I'm in for a wild ride, and especially in conjunction with treatment for regrowth.

Title: Re: Foggy/lightheadedness
Post by: Patti on March 18, 2018, 06:16:10 am
Crazycat-I neer saw this post.  Sorry! Did you have radiation for the re-growth.  I feel fine 2!/2 years out from my SRS.  Next MRI in June.  Headaches are MUCH better.  Patti
Title: Re: Foggy/lightheadedness
Post by: deborahwolfe on August 02, 2021, 07:07:54 pm
This may sound odd but it really does help the symptoms subside: laugh out loud. Start with 30 secs, work up to 3 minutes.  Say 3 sets each of: HA HA HA , HEE HEE HEE, HI HI HI, HO HO HO, HU HU HU. Repeat multiple times per day. This will help increase the production of the "feel good" chemicals, dopamine and serotonin in your brain. You will better cope with your situation. Also, if you are spiritual, offer up your suffering, it helps tremendously.   Good Luck!