tag:blogger.com,1999:blog-2382053184390218829.post7122467516242310878..comments2021-05-16T04:28:00.889-07:00Comments on Chiari Malformation: Pain Man appointmentUnknownnoreply@blogger.comBlogger6125tag:blogger.com,1999:blog-2382053184390218829.post-42083068671420216502008-02-22T12:03:00.000-07:002008-02-22T12:03:00.000-07:00Glue,Some of my surgeries have been in Phoenix, so...Glue,<BR/><BR/>Some of my surgeries have been in Phoenix, some in Flagstaff, some in Tucson, one in Baltimore, some in New York. My local care is provided by my pain man, who used to have a neurology practice.<BR/><BR/>Hang in there with the pins/needles/numbness. I lost sensation on my left side a little over 2 years ago. Strangely enough you get used to it.<BR/><BR/>I had my left shoulder replacement and I do wing my scapulas. Just part of life I suppose. I'm putting off getting this tear fixed as long as possible but as least I don't have to do a joint replacement on this one.<BR/><BR/>Don't worry about not having gone to the ER. They can't do anything for numbness/pins/needles anyway. They'll make sure you aren't about to die (sometimes) and just tell you to follow-up with your doctor to figure it out. *rolling eyes*Zipperheadhttps://www.blogger.com/profile/05680400883267736308noreply@blogger.comtag:blogger.com,1999:blog-2382053184390218829.post-55155920578728748412008-02-22T11:40:00.000-07:002008-02-22T11:40:00.000-07:00zipperhead; I certainly wish I could get in and ou...zipperhead; I certainly wish I could get in and out of doctors offices like you do! I see the neuro on March 4th for the first time for the pins and needles, itching. I can tell it is either my neck or something on my spinal cord; I am assuming it is chiari. I have had winging scapulars since forever. I have no doc that oversees my EDS. I have had the itch on my spinal cord for about a year but now I can't stand to have anything touching my spine; any reaching forward, bending brings on the pins and needles. Itching behind the scapular is pretty constant. I am an artist and about two months ago I was working on a pastel and my left arm went numb to the wrist. That is when the pins and needles hit non stop. I should have went to ER. I spend a lot of time trying not to panic. Was it hard to get aftercare for your chiari surgery or are you in the town you had the surgery in?invisiblegluehttps://www.blogger.com/profile/03514992468370819909noreply@blogger.comtag:blogger.com,1999:blog-2382053184390218829.post-82688576288601683982008-02-21T17:22:00.000-07:002008-02-21T17:22:00.000-07:00Oh, dear Keesha. My my. Well, we say extra prayers...Oh, dear Keesha. My my. Well, we say extra prayers for you every night. I guess all we can do now is send a big cyber hug. I'll do it like Linda does it.{{{hug}}}<BR/><BR/>Bobby, not the liverBillyBobhttps://www.blogger.com/profile/15697668141858001717noreply@blogger.comtag:blogger.com,1999:blog-2382053184390218829.post-15174179889159381352008-02-21T09:04:00.000-07:002008-02-21T09:04:00.000-07:00Hey there invisible glue,I just got back from anot...Hey there invisible glue,<BR/><BR/>I just got back from another appointment and they're adding there is no doubt it's not only the long thoracic nerve but I tore up the rotator cuff (and add in bursitis) pretty badly.<BR/><BR/>I've been on Topamax for 3 years. Good stuff! LOL.<BR/><BR/>How are you?<BR/><BR/>Keesha/ZipperheadZipperheadhttps://www.blogger.com/profile/05680400883267736308noreply@blogger.comtag:blogger.com,1999:blog-2382053184390218829.post-90168554613736666072008-02-21T06:17:00.000-07:002008-02-21T06:17:00.000-07:00You winged your scapular? My doctor put me on Top...You winged your scapular? My doctor put me on Topamax for the pins and needles and itching I have been having from my winged scapular. A side effect is weight loss. The winging will slowly move back on its own - without the medication; but it takes time and from my experience; and other EDSers it won't stay put. <BR/>http://en.wikipedia.org/wiki/Winged_scapula<BR/>http://en.wikipedia.org/wiki/Long_thoracic_nerveinvisiblegluehttps://www.blogger.com/profile/03514992468370819909noreply@blogger.comtag:blogger.com,1999:blog-2382053184390218829.post-35918667355537327232008-02-20T05:15:00.000-07:002008-02-20T05:15:00.000-07:00Chiari Mama,Having had a shoulder replaced when I ...Chiari Mama,<BR/><BR/>Having had a shoulder replaced when I was 24 due to extreme EDS damage, I'm unfortunately quite familiar with different types of shoulder pain and their sources. <BR/><BR/>My shoulders have dislocated several times a week my entire life. The current pain I'm having is different than any pain before--dislocations, spasms, strains, rotator cuff, you name it. <BR/><BR/>I'm in the 3% of EDS patients who have such a severe arthrochalasia/large-joint involvement. <BR/><BR/>I'm a weirdo even among EDSers LOL.<BR/><BR/>I suggest if you suspect something along those lines to seek a rheumatologist knowledgeable in it. I've been fortunate. Though neuro care in this area is non-existant, every single doctor I've ever seen here is very familiar with EDS--even my bladder surgeon! Actually he knew more than everyone else!Zipperheadhttps://www.blogger.com/profile/05680400883267736308noreply@blogger.com