I have a pineal cyst/tumor and was wondering could anyone here who has EXPERIENCED either of these conditions tell me what it feels like.
I have been having some WEIRDER than normal symptoms?
Arms & legs feel jelly like, weird feeling in lower back eyesight worse than usual, feeling shaky. Was just seen in ER for SEVERE back pain difficulty breathing, sat up and all but blacked out.
Doctors found no cause. CT/ X ray /orthopedic specialist and cardiologist- no cause found.
What would a Blockage of Cerebrospinal fluid or Hydrocephalis feel like?
- By JNAHFR · October 26, 2012 at 9:46 pm · 25 replies
- In Living with a brain tumor
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- By shara822
- Reply 3494627
- October 27, 2012 at 5:52 pm
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Ive felt my arms like jelly, stood of to walk once and just hit the floor because it was like my legs werent even there. Ive had trouble grabbing for things... a horrid tremor that has presently gone. Nausea almost always, Ive always been nauseas even when I was just a child. I have such intense pain in my skull and neck today, yesterday it was in my spine more. Ive been in pain x4 days. Motrin aspirin tylenol... nothing even helps. Im asking for gabapentin or neurontin
- By JNAHFR
- Reply 3494818
- October 27, 2012 at 7:24 pm
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Hmmm, I am starting to get nervous. Does it just hit you or is it a gradual build up of the feeling? Hope the storm passes by so I can get to the doc early this week. Crap crap crapity crap!
- By JNAHFR
- Reply 3494827
- October 27, 2012 at 7:26 pm
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Hey shara what treatment have you received for it,if you don't mind me asking.
- By kymomofmany
- Reply 3494975
- October 27, 2012 at 8:49 pm
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My supervisor Bill lived with it for years before his diagnosis, and to the rest of us, he seemed normal, just "clumsy" sometimes. So I don't know how he felt (gradual or sudden onset).
Try not to stress about it, stress is horrible for our bodies, just do what you can to get into your Dr when the storm passes.
- By shara822
- Reply 3495696
- October 28, 2012 at 8:20 am
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The treatment they recommend is wait... a scan every yr. If it doesnt grow leave it. They told me the only way to get rid of it was surgery or that they sometimes go away on thier own. Topomax was the med they wanted me to take, women r given topomax to help them loose weight and I lost almost 30 pounds I felt horrible on even a tiny dose... so I stopped it. Neurontin has been helpful in the past to help me sleep, curb my anxiety and it helps w some of the pain. In all honesty marijuana helps me more than anything else Ive found. It takes away the nausea, helps me relax and center. Distracts me from the pain.... makes me hungry. I see a new neurologist tuesday. I live in Vt., just moved here from Maine. Have an appointment at Dartmouth, hoping for something positive. I have little faith in thier understanding of this...
- By shara822
- Reply 3495703
- October 28, 2012 at 8:24 am
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I think often the headache starts w a sharp pain in the center of my head and grows. But I have so many different types of pain in different areas. The pain in my legs Im sure is all from contracted seizure activity, I just woke up w it the other day. I can hardly climb stairs it is so bad... I may go months and be fine but its as though it creeps up on me and attacks me for .... its been weeks now. It began w alot of dizziness and feeling as though I was gonna pass out just from walking, at least it started w that this last time.
- By Sandras1sc
- Reply 3495995
- October 28, 2012 at 10:52 am
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My daughter had hydrocephalis. She was acting very different from herself confused and told me she felt she was going to die. She was very quite and just sat around staring into space like she was lost all the time. She couldn't concentrate. she didn't have any pain.
- By shara822
- Reply 3496162 · In reply to 3495995 by Sandras1sc
- October 28, 2012 at 11:50 am
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I dont think my symptoms are hydrocephalus, nothing was evident of increased pressure on my scans... I was told that feeling hot, headache, nausea could be evident of increased pressure. I have some of those symptoms I get confused around the times of my episodes but I always get better for a while...
- By shara822
- Reply 3496172
- October 28, 2012 at 11:55 am
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It should show up if thats what it was... idk. Maybe it just hasnt done any damage yet. I get afraid too but I know it doesnt help to worry. I u shut U can have an optometrist check ur eyes for pappilodema... idk if thats spelled right. But ur eyes will show evidence of edema or swelling. I dont know... is it ur optic nerve they look at?
- By Sandras1sc
- Reply 3496310
- October 28, 2012 at 12:58 pm
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Yes they can look in your eyes. The Oncologist did look into Megans eyes and said she was looking to see if she had any swelling or nerve damage. She didn't see anything.
- By Sandras1sc
- Reply 3496315
- October 28, 2012 at 12:59 pm
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That was after the surgery though.
- By medumom
- Reply 3496322
- October 28, 2012 at 1:01 pm
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My daughter had medulloblastoma, a brain tumor that sits in the 4th ventricle. Her symptoms of blocked CSP were a pounding head ache when she would exercise.
- By JNAHFR
- Reply 3496358
- October 28, 2012 at 1:18 pm
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Thanks for the input, makes me wonder if this is the start of it. I could hear the swishing of my blood or whatever in my right ear last night an really bad this morning. Just down to a throb now.
Crazy the stuff our bodies experience.
Sandra's 1sc what did they do to treat your daughter? Was it surgery to place a shunt? This is new to me and I prefer to hear people's personal experience not just what doctors tell me.
- By shara822
- Reply 3496552
- October 28, 2012 at 2:44 pm
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The reason I started working on my circulation was r/t the dizziness I felt when I tried to go on this hike
- By shara822
- Reply 3496554
- October 28, 2012 at 2:45 pm
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I would feel beating or thumping in my face. I would have a hard time focusing my breath
- By Sandras1sc
- Reply 3497252
- October 28, 2012 at 7:43 pm
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They put in an emergency temporary shunt. Then they operated the next day and made a new passageway for the fluid to drain. Made a whole at the back of her brain. She has a tumor between her 3rd and 4th ventricle that caused a blockage. She is doing a lot better now.
- By ABTA_Mary
- Reply 3509582
- November 2, 2012 at 1:34 pm
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Common symptoms of hydrocephalus are headache, difficulty in remaining awake or waking up, loss of coordination or balance, loss or balance or a frequent urge to urinate, impaired vision, or a decline in memory, concentration and other thinking skills. These symptoms usually come on slowly. As someone else stated in a previous post, the only way of knowing whether you have hydrocephalus or CSF blockage is by MRI or CT Scan. I hope you are able to talk with your doctor and describe your symptoms.
Here is a link from our ABTA website that will give you a better understanding about cysts. http://www.abta.org/understanding-brain-tumors/types-of-tumors/cysts.html
Mary Lovely, PhD, RN, CNRN
- By SLStar
- Reply 3517212
- November 5, 2012 at 11:20 am
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My daughter also had to have a shunt put in before surgery. Her brain tumor was in the cerebellum and blocked the flow of spinal fluid causing a hydrocephalus conditon. She had sever headaches, vomiting in the night, seizures, loss of balance. It is not something to take lightly. Talk to your neurologist and get a CAT or MRI. Good luck. I wish you the best. SLStar
- By MyBraveBoy
- Reply 3606830
- December 8, 2012 at 8:11 am
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My son developed hydrocephalus. His symptoms were blurred vision, muffled hearing, dizziness, light headed, general feeling of malaise, coordination problems, severe neck pain, headaches, nausea and severe vomiting. He was diagnosed with a tumor of the pineal gland and it was blocking his 3rd ventricle. Surgery was performed to create a passageway for the fluid to drain and he fortunately did not require a shunt. However, 3 months later, his symptoms began to reappear and he underwent major neurosurgery to remove the tumor. A long, long story, but he spent close to 1 year in the hospital, 3 months were in NeuroIntensiveCare, multiple surgeries, complications, etc. But! He is alive, and recovering. Slowly...very slowly & tediously.
I wish you the best.
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With my daughter, (of course she is too young to tell me how she feels) she was/is off balance, and her fine motor skills are lacking. Now after her 1st surgery I ran into a former supervisor of mine, he showed me where he had a shunt put in. I asked if he was off balance with the extra fluid and he said no, he said it was almost like his legs wouldn't work at times. He said he'd just felt like his legs turned to jelly, and he'd just fall. It took years for a proper diagnosis for him, because hydrocephalus is not something a normal Dr would think to look for.
I would think you should see your neurosurgeon about these new symptoms, with you having the cyst/tumor you would be at a higher risk for excess fluid.
Good luck
Oh I wanted to share a little good news with you since I have told you about my daughter previously. We had our first good MRI this month, she had no new tumor growth so the Dr feels she will be ok to wait 6 months until her next MRI, so her little body can have a rest. She is still facing the possibility of a shunt because her fluid spaces are large, and she still has some tumor speckling left over from surgery so that risk is there, but for now we have a small victory.