scar tissue

[northernstarmn]

i've been having issues ever since oh i dunno the shunt was placed i cant tell from one day to the next how iam going to feel so i try not to plan anything in advance,because i just dont know- anyways saturday i was so tired and hurt ALL OVER head felt awful and it was just so hard to find the ambition to do anything- then after i told my husband where it hurt and how i hurt all over (which was obvious) he suggested i put on the neck brace and place a cold pack inside it- i did that and amazingly enough it helpt relieve some of the pain esp in the neck and upper spine...after removing the cold pack i kept the neck brace on the rest of the day and it seemed to eventually have an affect on the rest of my body, No i wont say it felt a 100% better but at this point to just feel a little less pain is awesome...

so today i wanted to go to the Mall of America to the as seen on tv store- I was looking for something specific of course they didnt have it,so then we walked around the mall for a little bit...after a little while i started wobbeling again (UGH I hate that) and thats when my husband started asking me some more questions being the pain was just starting- on either side of my inscision it felt tight and like i had a knot in my neck- just below the skull on either side you could feel a lump and my face felt like the skin was being pulled tight and i felt other facial pains, so we get back home and i put the neck brace on with a cold pack again and it seems to be helping relieve some of the pain and my stability seems better --no wobbeling as much

so now we are wondering if the scar tissue is building up and causing me some pains.  Anyone have any ideas?

[selmaS]

No worries...let me know what u find out.

We do have an EDS group on MH and a page of info in the Health Pages.
http://www.medhelp.org/forums/Ehlers-Danlos-Syndrome/show/417?camp=msc

"selma"

[northernstarmn]

intersting selma....i dont know if i was ever tested for EDS but it sure makes sense esp knowing that i often feel like a bobble  head...it is very painful and really disheartening-

thanks for the info

[selmaS]

HI Lisa...I am so sorry u r still dealing with this issue...but, what a great DH u have....very good detective skills : )

It is possible that u have scar tissue build up causing some of ur problems, but since u did get some relief from the neck brace, I wonder if u may have cranio- cervical  instability.I am not sure if u were tested for EDS, but do consider the following info:

Ehlers-Danlos Syndrome is a disorder of the connective tissues, which are tissues that support the skin, bones, blood vessels, and other organs. Defects of connective tissue result in hypermobile joints and fragile skin. On its own, EDS can range from very mild to life-threatening symptoms. When connected to Chiari, the most worrisome complication is Cranio-Cervical Instability. This means that the occipito-atlantal joint is hypermobile, or that the head is wobbly on the spine. Patients with Chiari and EDS tend to have difficulty sitting up, because certain brain structures tend to slide and sag upon upright posture. Also, the odontoid bone at the top of the spine tends to poke into the brainstem. The symptoms of this instability are therefore worsened by sitting up, and relieved by lying down. Symptoms include nausea, difficulty swallowing, difficulty supporting the head, and quite a few other "brainstem" symptoms.

Cranio-Cervical Instability is treated with a surgery called a Cranio-Cervical Fusion. The procedure involves precisely extracting the skull and positioning the head on the neck, then fusing the first four vertebrae to the bottom of the skull and implanting two metal rods with bolts and screws around the skull to create more stability for the head and neck.