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Brain & Nervous System Disorders Message Board


Brain & Nervous System Disorders Board Index


Hi Scout~

The rain passed you and is heading to us in the form of snow. I'm already feeling it and I'm laying low today:D

The little oak figures are so adorable. And the talent those people have. I am a very creative person and have tried sculping but i stink!! I would love to be able to make these little people. And just think of the money to be made!! I havent made any baskets to offer on there, I just have tons of character items. Dora, spongebob, etc. If you look for 300 pumice, you'll see. You must be a master at keywords to find your little dolls. If you search under differant keywords, you can find some steals!!

Bladder issues are soooo chiari. Actually, the tethered cord is a big factor. We get incontinence, frequent urination like you cant hold it as well as not being able to fully empty the bladder. I know you mentioned the urinalysis. Befor my TC surgery, TCI has us do a eurodynamics test to see how our bladder is functioning. I could never hold it before my surgery. The trip to New york, i had to stop several times. After the surgery, I made the 4 hour trip without one stop. It was amazing. I also had leakage issues which are resolved now. My bowels were an even bigger problem. I really thought i had a tumor. I would get so backed up, I was relying on enemas and spent many nights in the ER in pain. Horrible. I now go regular.

by the way, the laundry has now become my duties. Yuk:mad: I can only fold a few things at a time and to load the dryer, I'm careful how many wet items I pick up. I think for you, you really have to pay attention when your at the sink. Bending your neck can be causing your balance issues because your putting pressure on the nerves. Try to act like your wearing a collar on your neck and dont bend it so much and see if it helps.

Also, I run hot and cold all day. Thats common as well. We get alot of temperature fluctuations. We even run low grade fevers as well.

I've been following Bills post but havent fealt well enough to respond. But so many things make me think chiari. His head pressure, worcening of symptoms after a bowel movement, because of the straining, it makes things worse. Not empying the bladder and so forth. If you want to share this with him, feel free and maybe a bit later after I lie down for awhile, I'll send him a post as well.

Talk to you soon

Cindy
Hi Scout~

Its funny, but so many people with chiari have sinus issues. On my MRI it noted that my sinus cavities are blocked and many others have said the same on their MRI. I had sinus surgery in my early 20's. I had a headache that wouldn't go away (hmmm... little did I know) so I had a CT scan and the Dr recommended surgery. wouldn't recommend that one. It was horrible:(

So my headaches and sinus issues followed me throughout my life. Of course my headaches were still there but took tylenol daily and really never spoke of them to my Dr's. I didn't want them telling me I needed another cleanout!! Even when I started with the neurological stuff, I never mentioned the headaches. They just didn't seem relivent because I guess I was so used to them. But then I had the lumber punture and the headaches changed to head pressure and lifechanging pain.

Now, when my head feels really bad, I can press on my skull and feel it seeping into my sinuses. I had read (but its not a fact) that when the CFS flow is blocked from Chiari and has nowhere to go, it leaks out the sinuses. I just found this so interesting because this has been an issue all my life. They even did allergy testing and i'm allergic to everything!! So it made sense back then. Now I think thers more to it. Just MHO:D

Having the dogs there with you keep you company, I'm sure. Its nice to be talking to something all day besides ourselves;)

Being up so late really takes its toll. I have oxycodones that I only use if I'm desperate, which is once or twice a week. I am so afraid to become dependant on them. They don't cure the pain but it takes the edge off when nothing else helps. When I take them, I wont go to sleep. With chiari and narcotics, it can affect our respitory function and this is the leading cause of death with chiari. Generally chiari isn't fatal but add pain meds, sleep apnea (which I have) and it could be harmful. So I stay up very late when I take one. Sometimes, I make my hubby promise to watch me while I'm sleeping. Then I'll nod off. I'm such a chicken!! But it is scary.

Don't feel bad that so many are begging for testing to be done and your complaining. It takes us alot of energy just to get through a day. Then throw in an errand or two and our energy is spent. I completely understand. I'm supposed to go back to my GP so we can play with some differant things to help the pain. He wants to try one thing at a time. I was supposed to go back two weeks ago. But I'm too tired and in too much pain. How ironic? But I do know what your feeling;)

Online shopping is so much better!! I usually do that too but I haven't even begun mine. I bought a few things yesterday at the store but I just can't get into it. That after Thanksgiving thing sale. Yuck!! Its a zoo. I've gone at the opening of the stores and people will literally run you over to get those bargains. And I just can't out run them these days:D I'd rather pay a few dollers more and not deal with that.

I'm like you. It has to be a special gift for each person. And it does take alot of time and energy to do that. Gifts from the heart are so much more meaningful.

I'm glad your here to recommend the best B12 to use. I'm gonna pick some up. It can't hurt to take it and maybe it will booste the energy, who knows?

Rest up scout. We certainly deserve it:)

Talk to you soon

Cindy
Hi Scout~

I'm so happy to hear coopers ok:) Its so scary when that happens. My cat, who is like a 2 year old, ate something last year. He got so sick and ended in the hospital for 3 days. $750 later, we never found out what made him sick. We really thought he wasn't going to make it. So don't feel bad that he got sick while he was with you. Those little devils have to learn to behave. Maybe he wont eat what he ate again. But I'm really glad he got better on his own. He must have had a belly ache or an upset stomach.

Today was not a good day for me. I woke up with a big kink in my neck. Didn't think much of it but my whole left side has been numb with pins and needles. Thats not unusual for me though so I just ignored the neck pain. But my hearts been racing like crazy and I can hear it beating in my head. Its so scary because we just assume sometimes the chiari is bringing on these weird things. But then I start worrying that my heart could be acting up. I couldn't get my blood pressure machine to work, which made me more frustrated. It was causing me pain in the left side of the face. I was miserable. I had to drive Rheacel to work and she said "mom, why don't you just take a pain pill" I just feel like lately, I've had to take them too often and you know how I feel about that.

I'm going to call my GP tomorrow and get in there. AND I'm calling TCI tomorrow too. Its time to move ahead Scout. My 2 wonderful aunts sent me $260 yesterday, to help out. Then I sold one of my sons Dragon ball DVD's for $120 and my great friend contributed with a sale too so with all this, I'm taking my $400, setting it aside and making that appointment. I am so very greatful for all the help everyone has offered and with that, its time to head back to NY. It will take a bit more but I know it will be a bit before they can get me in so I have time to build up some more funds. This just gave me the push I needed;)

When I'm feeling up to it, I'm going to get myself that B12 and give it a shot. Thanks so much for letting me know the best kind to use.

I'm gonna keep it short tonight because I really need to kick back and let my neck rest. I'm just so glad your here Scout. That I have someone to share with. Thank you for everything:angel:

Cindy
Hi Kimberly~ Chiari is when the skull at the base of your head is too small, causing the brain to be squished and descend into the hole in the base of the skull, compressing the nerves of the brain stem and spinal cord. There is a wide variety of symptoms but here is a small list with the more common symptoms. Take care~ Cindy

Headaches in the base of your head that worsen when bending, straining, laughing or crying

pain radiate behind your eyes

Neck stiffness~ pain radiates into shoulders /arms

Light sensitivity~ Blurred vision~ double vision

Pressure in ears~ ringing~ sensitivity

Difficulty swallowing~ Sleep apnea

heart palpitations~ dizziness

Tingling~ numbness~ burning in extremities~ weakness~ stiffness

Bladder and bowel disfunction

Fatigue... And theres many more





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