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-   -   I'm In Pain (https://www.neurotalk.org/hydrocephalus/197865-im-pain.html)

Tink5881 11-29-2013 09:04 AM

I'm In Pain
 
:(So, here's my issue that I need help with. For at least the passed 3 years I've been moderately depressed. Last year, it got worse. I have to deal with mental illness along with hydrocephalus, and the surgeries caused me to have epilepsy starting in my early 20's. In the passed 6 months or so my eyes have been in extreme pain when I'm in the sun. Right now, it's actually excruciating to look at my monitor to type this. The closest hospital to me doesn't have a neurology department. I supposedly have lumbar arthritis and fibromyalgia. I've had 4 shunt surgeries. First one when I was 2 months old. I was an extremely healthy child.....until I was 17, and ended up blind and knocking on deaths door because my parents neglected me. The doctors told my parents that if they had waited 12 hours more before bringing me in, that they'd be bringing in a dead daughter. I had bilateral papalladema....fluid built up by my optic nerves. Those first 2 surgeries were full vp shunt placements. I had my 3rd surgery sometime in my early 20's. My last surgery was in September of '07.
I have always had headaches. But the headaches I've having the passed week or two........EXTREME AGONIZING PAIN! Neck pain. And my face even hurts. Nothing works on my headaches. I have a crappy neurologist. The norm for me is at least a yearly check up including x-ray and ct scan. 6 months ago when I saw him I had to request them, and he only ordered the ct scan. Then he set up another appointment for 6 months later. That appointment consisted of him asking me how I'm feeling, then told me everything looks good. You don't need to set up another appointment. Now he tells me I'll be seeing him on an as needed type thing.The healthcare out here sucks! So basically, Gradual headaches now reaching the edge of my tolerance to pain. My neck feels like it's one huge knot. I have nausea half the time. I've been having sinus problems. Every morning when I wake up, it feels like my eyes are swollen. I don't know what to do! I'm at the point where almost every part of me hurts. I can barely concentrate. For a few years now, I see and feel like my shunt is bent like a kink in a few places but every doctor told me I'm fine. I'm extremely irritable. Most of the time I'm either crying or angry. My anxiety gets so bad. It seems to be getting worse along with the headaches and nausea. Also, can anyone tell me if tinnitus is related to shunts? I really do think something is wrong......but I am not in a good area to suit my medical needs. Any advice would be appreciated. OUCH! My head feels like it's going to explode......I forgot to add in....I'm 32 years old.

annakkro 12-05-2013 12:05 AM

Go see a neurosurgeon (not a neurologist, maybe you meant neurosurgeon) ASAP! Get a different one too. Be assertive, even aggressive if you have to. All of your symptoms sound like any one of them could be due to your shunt. At the very least you need to rule out a shunt problem. But (and i'm extrapolating a bit here) it sounds to me like YOU know it's your shunt, and that's what matters the most. That means you don't stop until you get answers!! Good luck and keep us posted!

jroones 01-09-2014 04:23 PM

I'm having a lot of your same problems pain on the right side of my head, depression mood swings getting worse, sick to my stomach and vision problems. Doctors don't care anymore keep hearing the same thing that everything is fine ct scans are normal. All i can say is get a new neurologist don't give up don't take no for an answer and use your voice until someone listens to you. I hope things get better for you and your not in pain stay strong.

ginnie 01-09-2014 04:38 PM

Hi Tink
 
Welcome to Neuro Talk. Please have hope that things can get better. Can you get to another location for medical help? Sometimes you have to travel to find the kind of doctor who will address your needs carefully. You should have help for your pain, and not just be dismissed on an as need basis. That doesn't sound like good care to me. Pain like that needs to be in control, or that depression creeps up on a person. If you post near where you live, there may be someone on NT that knows of a neurologist in traveling distance. Keep in touch with the folks here who have hydrocephalus, and may be able to offer some suggestions. I will keep you in my thoughts and prayers. ginnie:hug::grouphug:

Dani93 01-30-2014 11:01 PM

Xoloinxcuintli Dogs and Fibromyalgia
 
Apparently, intense heat can help with fibromyalgia. There is a dog breed called the Xoloinzcuintli that is said to emit such heat and help reduce fiibromyalgia pain. I tried to send the link to you...
Although the problems that I have experienced are not identical to yours, I have had problems like yours, myself. Please keep looking up. <3


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