ANA Discussion Forum
Post-Treatment => Post-Treatment => Topic started by: Anasazi42 on April 15, 2015, 11:20:12 am
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Hi, I'm 4 years post op. I was diagnosed with a 3+ cm tumor on the right side. I had it removed in 2011 by retrosigmoid procedure. I've had countless problems since then, among them ataxia, right-facial paralysis, deafness, no fine motor skills on right side of body. Many of you are facing or have faced the same challenges. But I'm actually curious about 2 new symptoms that have occurred only in the past few months. It's April of 2015, so I'd say it has been ongoing since November of 2014.
The first is the gagging. Any time I eat or drink water, food, anything, I start coughing followed by gagging. Sometimes the coughing is quite violent. There is no nausea or other feelings which often accompany nausea. Sometimes I don't cough, but the gagging will start. Since the surgery my husband and I have noticed that I begin coughing at almost every meal. Almost like someone who is choking or swallowed something wrong, except I'm not choking. I just start coughing. Now I'm starting to gag. I don't know why or what could be causing this. Like I said there is no nausea or heart burn or anything else, just gagging. A few times the coughing and gagging became so severe that I actually threw up.
The second is feeling how a person might feel during that moment right before they fall asleep, except I'm awake and not going to sleep. The best and closest description I've read is by AN Forum member "Nancy T" who wrote: "About a month or six weeks after my sudden hearing loss, I began getting what at the time I called "brain blinks" for lack of a better word. I would suddenly get a split-second feeling that I was about to involuntarily close my eyes and conk out, accompanied by a sensation of "total dizziness" or "whump' in my head and also a "burst" of "extra" static in my bad ear (which had constant whirring tinnitus anyway)."
I feel like my brain is going to fall asleep. It's like a wave in my head accompanied by a wooshing sound. I have constant tinnitus anyway, like a radiator hissing, but this is an increase in the pitch in a whoosh.
The only thing is, she didn't have an acoustic neuroma, so I'm wondering if anybody who has had an AN removed has experienced these things. Also did you get a diagnosis for either of these experiences and what did you do?
Maybe this is related and maybe not, but twice in the past 6 months I have experienced extreme vertigo. Granted I was a passenger in a car. The last occurrence was last week. My husband was turning into a parking lot when all of a sudden I had such severe vertigo that it felt like my brain hurt and I felt like throwing up. My brain couldn't make sense of what my eyes were seeing. I can't explain how violent and disorienting it was. I actually put my hands up to my head and started to squeeze my head to get it to stop.
Anyway, any help or response would be appreciated.
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Hi Anasazi42 .....
So sorry you are having these disconcerting symptoms (to say the least!!).
My first question: When was your last MRI? If it was over six months ago, I would urge you to contact your doctor immediately and request another one. These return and/or new symptoms are not the usual course four years post op.
In any event, I would certainly urge you to contact your doctor and report these symptoms. They may be from a totally unrelated cause, but you need to find out.
Many thoughts and prayers .....
Clarice
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Hello Anasazi42,
I have the same symptom (coughing as soon as I eat anything). I was wondering if there is a link with AN too? I didn't get surgery but strongly considering radiosurgery for a 2.1 cm AN.
It seems every symptom I notice I attribute to my AN. It could be unrelated of course, but what type of doctor do I see for this symptom?
Thanks,
CattAN
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I have the same symptom (coughing as soon as I eat anything). I was wondering if there is a link with AN too?
I can't imagine how there could be but with ANs almost anything goes.
I have the same symptom (coughing as soon as I eat anything). It could be unrelated of course, but what type of doctor do I see for this symptom?
Gastro-enterologist.
My friend has the same problem, has no AN, and is being treated for upper Gastro-intestinal issues.
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I've been coughing for the five years since surgery. In my case there was definite involvement with the nerves associated involuntary muscle control. Not only do I have to be aware of what I eat, I need to be intentional about eating, especially dry foods. Allergies become a problem as well. What happens for me is that the normal drainage associated with the mucous that keeps the tissues moist and protected do not flow down naturally. This leads to periodic coughing fits.
This is not to say this an explanation for your issues. This is simply my experience. The trigeminal nerves that pass through the affected area control a lot of important functions. I also have involvement of the vagus nerve which presents some very unusual symptoms from time to time that are somewhat unpleasant to talk about.
You should see your PCP and perhaps have an EGD and/or swallowing test dome to rule anything else out.
-Tod
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hi Tod
Hope you have seen your doctor and things are going better.
Could the problems with gagging / coughing/swallowing be related to facial nerve damage? I'm pretty sure the nerves to the back of the tongue come off the facial nerve. The problem with "mini-sleeping" when awake sounds like lack of sleep from sleep apnea. Ask your doctor about a sleep study, especial if you snore at night. Also that ' "burst" of "extra" static' sounds like "Exploding Head Syndrome." The name sounds like a joke but its real medical syndrome related to falling asleep. Google it, or use Google Scholar, if you want to read research abstracts about it. I get something like that but to me it sounds like a loud clanging pair of cymbals. Exploding head syndrome is nothing serious, but sleep apnea can be. Which remises me I am overdue for my yearly Sleep Doc appointment so my insurance will keep paying for my CPAP equipment.
Just a couple of ideas to check out with your doctor.
Leah
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I have the gagging issue among a host of other issues. It turns out I no longer have a gag reflex. This happened directly post-op. Everything was fine before the surgery. So it means something happened to the nerves during surgery. Unknown to me at the time fluid/saliva builds up in the back of my mouth then flows down and I aspirate it into my lungs. There is no warning and I go into a violent coughing episode where I feel like I’ll never be able to breath and pass out. A doctor on the internet that has treated patients with this issue has described it as being “Water Boarded”. I believe it! One simplie minded quack doctor told me I just needed to swallow more often - REALLY? I don’t know any cure for it. I just have to live with. The VA has deamed it secondary to my brain tumor and surgery.
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hi Gunns,
do you remember doctors name you mentioned that treats this?