Just advice

I have noticed a few things looking at this site. I don’t ever want anyone to feel ignored or over looked in anyway. Considering I think people post because they are looking for answers. Perhaps some of this may just be my own perception and how I view the site - not speaking for all.
~ if you have a problem - and would like an answer - may be best to post in discussion area. It is visible to all and for a while it remains on the main page that we all see in big bold print
~blogs are great for expressing feelings and experiences - maybe I am just too old to understand blogging - but unless I am really searching through these I don’t tend to see them. I am guessing g people may feel they are not things for the main discussions because they are sometimes slightly “off topic” we are a support group and if you have chiari but it is something unrelated we still are here for you
~ the main im conversations are great when you can catch them - but perhaps it is better to pick someone you see online and see if they are up for chatting. It comes right up into view so it can’t be overlooked. And it is also a nice way to connect to people you find you have more in common with or you share a similar style.
~ I love when people post on my wall but unless I scan through the recent activity I often miss it. I guess I am supposed to be checking my own wall!! Lol.
~ if you happen to scan through old discussions and you see one that it may have been bumped down the list before people had a chance to see or reply but you feel it does need and should have gotten responses - even if you don’t have info - type bump and it throws it back to the top of the discussion forum.
~my last bit is because we have been getting very recently diagnosed new members everyday. I think they deserve a quick reference to the vocab we all throw around these days like second nature. Even my spell correct now changes has to ha’s!! Can you tell I type that a lot. At least it now recognizes Beeba I was sick of being Bemba - not even sure that is a word!!
-ns - neurosurgeon- if you have chiari this is who you need to see. Does not mean you have decided on surgery
-Nl- neurologist - may be of help for post care management - but here they don’t come highly recommended as they often blow off symptoms and will usually chose to medicate rather than refer. If you get a really good one - do whatever necessary to keep them as they are harder to find than a surgeon.
-CINE MRI- pronounced sinny. Checks for cerebral spinal fluid flow and blockages. Pretty much a must.
CSF - cerebral spinal fluid
-herniation- protrusion of cerebral tonsils below the foreman magnum - measurements in mm
-syrinx- a collection of CSF in the spinal cord
-ICP -intracranial pressure
-POTS -positional orthostatic tachycardia syndrome - often related to drop attacks

I put this together not to be condescending in any way. I just know how busy life is and I often go on quickly - look at the main board then go out. I thought these may be useful tips in case you have an issue but are finding you didn’t get any responses. When. You post on your own wall a status it get bumped down very quickly by other news from the site. I know some are shy and some just lurk but if you have concerns that is why we and you are here. Everyone deserves to be heard and responded to. I hope this helps.

PS TO EVERYONE - I really stink at the birthday thing!! I have forgotten my own anniversary for two years now. I don’t think my best friend has had a birthday in the 34 years I have known her. So if I forget HAPPY BIRTHDAY TO ANYONE HAVING A BIRTHDAY WITHIN THE NEXT YEAR AND IF I HAVE MISSED WELCOMING ANYONE - WELCOME!!! I wish I could blame all my faults on chiari but afraid I have always been this way - doesn’t mean I don’t love ya more than my luggage!! Hope everyone is having a good night.

Thanks Beeba,

I think a lot of people will find this information very helpful. I am glad you took the time and effort to put all of this out there.

Have a great night/day/afternoon/lunch...trying to be silly hope it is working


i agree, very well put together. I Am curios how it is you guys welcome newbies...how do you know when they are new? I see welcomes on their walls, but feel kinda bad and outta the loop. Thanks for posting this.


As a moderator on this site, I would like to add to your vocab list:

CM - Chiari Malformation

SM - syringomyelia

EDS - Ehlers Danlos Syndrome

IH - intercranial hypertension

Also as a reminder, we all need to be aware of the fact that someone as young as 13 can be a member here. Remember to be respectful. Please DO NOT post any pictures on the site that are inappropriate such as nudity or violence. If we respect everyone from ages 13 and up, there shouldn't be any problems. Thank you everybody :)

Hi Nicole, would you like to help Welcome New Members???? We would love to add you to the Greeters Group. Think about it & let me know. I will message you the Greeters Guidelines. Please know, no one person can greet everyone. This is not a high pressure process. I don't want you to think it is stressful.

Tracy Z.

nicole said:

i agree, very well put together. I Am curios how it is you guys welcome newbies...how do you know when they are new? I see welcomes on their walls, but feel kinda bad and outta the loop. Thanks for posting this.

Great information Beeba.


THANK YOU TONS!!!!! you are great!!!