ANA Discussion Forum
Post-Treatment => Post-Treatment => Topic started by: kenneth_k on November 04, 2010, 12:47:33 pm
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Hello everyone.
I need your advice. I felt sick twice.... Up to the time when the AN was discovered, and up to the time when I developed a CSF leak.
Now I feel sick again and I'm going to see a doctor on monday. What should I ask him?
I've been under a lot of pressure at work and many symptoms could be stress related.
On the other hand, all my MRI's says I have a Cavum Septum Pelucidum cyst in the ventricles. It should be harmless but now I'm afraid it causes intermittent increased intracranial pressure.
My symptoms are nausea when waking, pulsating feeling in the head when lying down, needles in the hands/feet when lying down, popping ears and imbalance. Sounds like hangovers, but without attending any party :(
Any comment is welcome, including good luck ;)
Keneth
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Kenneth ~
First, I'm sorry to learn of these recently emerged symptoms. Second, I have no idea why you're experiencing them. Third, I'm not a doctor and so, I can't offer any credible explanation. Fourth, good luck and whatever the exact cause of the new symptoms, I hope it can be discovered and addressed without much trauma.
Jim
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Kenneth .....
I, as well, have no idea if these renewed symptoms are cause for concern or not. It sounds like you have had way more than your share of AN-related issues. Glad you are going to the doctor soon ..... you need answers quickly.
Best thoughts and many, many prayers.
Clarice
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Kenneth,
So sorry to hear about not feeling good....again :(
Just make sure your doctor hears ALL your symptoms. Maybe write or print them up in big bold letters. That's a variety of symptoms.
I don't even know what a Cavum Septum Pelucidum cyst is! Will have to google that.
Sorry again, and good luck on Monday.
Hang in there......
Maureen
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Thank you. I will try to remain calm. A difficult task at best.
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Thank you. I will try to remain calm. A difficult task at best.
Kenneth -
if it helps at all, please remember that we are in your corner and are hoping for the best.
Good luck on Monday. Please keep us updated.
Prayers and good thoughts,
Jan
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Yeah, you know how this whole thing works....you get worked up about something, and that just adds to the stress...but in the end there's not a lot you can do about anything until you find out what's going on. You've seen many newbies on here, and the most common response to their inquiries is "Breathe easy and stay calm". Please do that! Take care and let us know how it goes!
Jay
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Kenneth,
I'm sorry to hear about your new symptoms, hopefully its nothing, but I'm sure going to see the Dr is the best option.
Hang in there and please let us know what you discover, and hopefully its nothing. ???
Try to stay positive as the stress you are feeling is only going to exacerbate things.
Liz
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Hello everyone.
Boy I'm out of luck. My military doctor thinks I'm suffering from anxiety and depression. He was not knowledgeable about symptoms of intermittent increased intracranial pressure. He actually suggested that we tried to google it >:(
Now I have to go to my GP next monday to get her to get me an appointment for a neurological examination. If the results are increased pressure - I'm in trouble. If not - I have anxiety and depression and I'm in trouble. :'(
I don't know how this will end but it will take some time for clarification.
Kenneth
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Kenneth,
Its possible you might have depression, and many of us have experienced this post-op, especially since you've had surgery and also have the cyst, but I don't know why the Dr discounted the pressure and symptoms you are feeling. When I have been really active or the weather changes I feel this pressure you describe and its usually followed by a nasty headache. I'm currently taking indomethecin which is an NAISD that many neurologist prescribe for people who have exercise induced headaches. It helps with the intracranial pressure I experience, not that this is a cure, but my Dr's at lease acknowledge it! Hang in there, hopefully your GP sorts this out.
Take care you will find answers if you keep looking,
Liz
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Kenneth .....
My first reaction to your military docs diagnosis ..... well, duh?!? Of course you are anxious (with a degree of depression) about the thought of more intracranial pressure ..... but that does not really solve the problem, does it? I hope the neurological exam will shed more definitive light. If the test results are negative or inconclusive, work on the stress factors and if your symptoms do not change, seek another opinion.
Best thoughts. Clarice
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Kenneth,
Here's my take on it so far: Doctors are just humans who know more about a specific system or group of systems of the human body than we lay folk. But they're not "all knowing". You said so yourself, sort of, "He was not knowledgeable about symptoms of intermittent increased intracranial pressure. He actually suggested that we tried to google it." You see? He doesn't know everything. (I googled it. I didn't understand any of it :D.) So if the neurological exam that your GP sets you up with doesn't work out, take Clarice's advice: keep looking.
But frankly, I don't think you're in trouble if you have anxiety and depression, after all, you've been there before, haven't you? I mean, who on this forum hasn't been there and we have each other to get through it? As Jay says, "Breathe easy and stay calm" you know how to do that.
I'm no doctor, but how do you know that it's the Cavum Septum Pelucidum cyst that's causing your intracranial pressure? Is it possible that it's something else? I mean, I'm a former school teacher and I used to have some of the symptoms you describe when I had to call a parent about their misbehaving child :D . Really, I know it's no laughing matter but first, you don't really know what it is and second, you know that stress can't be helping it any.
So best of luck and keep us posted. I'm sending you all my best positive thoughts and well wishes and do your best to "Breathe easy and stay calm".
Hang in there,
Mark
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Kenneth -
depression is a very common side-effect of AN treatment - especially surgery from what I've heard.
I suffered from it myself without even realizing it. My hearing loss had a huge effect on me. I didn't realize how big it was until the day I was approved for my BAHA and then it was like a cloud lifted.
Your SSD might not be what's depressing you, but it's very possible that some aspect of your AN treatment is.
Just my two cents worth - and no, I'm not a doctor ;)
Jan
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Update......
There is no doubt that I'm influenced by a lot of stress at work. My doctor wants me to reduce my workload and only work part time for a period. My boss allready agreed to that so that's positive.
However, my nose started running again intermittently and it is positive for glucose. That means I may have a CSF leak again. I don't think it is as bad as the last time, and maybe it will stop by it self. I am going to have it checked out though. Don't know when but the hospital will send for me.
Best regards, Kenneth
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Kenneth .....
I'm glad you were able to reduce your workload. Regardless of the possibility of another CSF leak, just reducing outside work pressure should help your body to heal faster. There is a huge range of time spans for recovery from either surgical removal of ANs or radiation treatment ..... no one can tell another person "You will be fine in 'X' weeks (months)." As we tell everyone, listen to your own body. This is not a time to be heroic and think you should be able to return to previous activities on a pre-determined time schedule.
Hopefully you will find out soon about the leak.
Clarice
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Kenneth,
Hang in there while you wait for the news. Hopefully a quick fix.
I would imagine no heavy workouts either? :o
Make rest part of each day in some form or another, and don't do the guilt trip! Gotta get this under control.
Glad you got the part time work, too.
One day at a time,
Maureen
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Kenneth .....
I'm glad you were able to reduce your workload. Regardless of the possibility of another CSF leak, just reducing outside work pressure should help your body to heal faster. There is a huge range of time spans for recovery from either surgical removal of ANs or radiation treatment ..... no one can tell another person "You will be fine in 'X' weeks (months)." As we tell everyone, listen to your own body. This is not a time to be heroic and think you should be able to return to previous activities on a pre-determined time schedule.
Hopefully you will find out soon about the leak.
Clarice
Great advice Clarice in not being heroic I use to feel bad when I read so many others were doing great and couldn't figure out why I still could not get it together.. we are all different and yes we have to listen to our own bodies .
Best Wishes,
Pat
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Hoping it is just the work load of course we all have been there we had either surgery or radiation for a AN and some of us fear leaks, regrowth or another one we are only human how can we not think about this for some of us all the time and others once in a while.. Could you explain about the glucose and the cyst it has to do with the septum could cause something with your nose and that is why it is leaking and not a CSF ?? My nose has been constantly running since the surgery and was diagnosed with a deviated septum on the AN side and since the surgery so much pressure and leakage ... Wishing it is just a simple fix and not another CSF leak...
Hope your visit with the neurologist goes well.
Best Wishes,
Pat
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Kenneth,
How long after the surgery did you get your first CSF leak?
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1½ half year. Strange, seldom but not unrealistic. ;)