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kathik |
Oh...the HORROR!! |
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Holy Monkeys!! Okay...NOW I get it. When Penny and Mel used to say the Texas heat was unbearable, I would honestly laugh. I couldn't comprehend HOW extreme
heat could be bad for us in comparison to cold, winter weather. I always felt SO much better in the summer in NJ. BUT...in NJ, a week of 85+ weather is
considered a heat wave. It's been 90-100 every day since I've been back in Austin. I am a prisoner in the house!! 10-15 minutes outside here and I am
dizzy, nauseous and all shaky. At first, I was blaming the Fentanyl patch but after reading up on it, I wouldn't be feeling symptoms of a "patch
dump" that quickly. I'm beginning to think it's that syringomyelia thing of not being able to control body temperature. This has been a problem
for me since right after my injury. I became intolerant of the cold. My extremeties would get icy and cold...white and blue. If I caught a chill, it would take
forever to warm up. Now I'm experiencing the same thing with the heat. I immediately overheat. ARGHHHH! I NEVER expected this. Any advice besides the
obvious?
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tiredmama |
i can relate | ||
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I'm sorry you are having that problem, but boy does it explain alot to me. I can't walk to the corner and back without breaking into a sweat and then I
shake from head to toe. I get so weak I can't make it back into the house without my walker. I use the cane to walk there, have to stop several times on
the way back, and then barely make it in the door. I didn't know about the problem with controling body temperature. I also noticed when I catch a chill I
can't get rid of it. I have had that problem for years. I always would have to get a scalding hot bath to get warm again. Anyway, you aren't alone.
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Lisa Stringer |
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People who live in those climates with extreme heat spend the daytime inside as you have probably noticed. They sell all sorts of personal cooling devices not
sure if any of them work. You have also just discovered why people in the Midwest who retire spend the winter in FL or other southern states and then come home
for the summer.
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kathik |
Syringomyelia and temperature | ||
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Yes...this wasn't something I saw publicized much about SM until I really started to dive in to the various medical papers written on the disease. My
understanding is that the nerve damage done to the spine can affect the bodies ability to regulate internal temperature. It not only happens with our internal
thermostat, it can happen on the skin too. Much like diabetics, we can have problems feeling heat/cold on our affected limbs. My right leg can't tell the
difference between hot or cold water in the shower. All it feels in a sparkling sensation of water. Those with extreme damage have to be very careful not to
scald themselves.
It's funny...what's that quote (Eliza...HELP. I'm gonna butcher this..) "The best laid plans of mice and men" Something like that?! Of ALL the things I tried to anticipate about this move...homesickness, empty nest, cultural differences...the ONE thing I never expected was problems with the heat!! I guess I am a prisoner in this house until October. Oh boy. I was going to stay in NJ until September, doing exactly what you said Lisa. But Neil got rear ended while he was stopped in traffic. The woman was doing about 50 when she hit him. The rear of her Honda went under Neil's Shelby. He was whipped around quite a bit from it. He's now in the beginning phase of a series of medial branch block injections. So far, they aren't doing anything for the pain. It's been an interesting dynamic to have our roles reversed somewhat. After so many years as my caregiver (and me the taker), we've had a hard time adjusting. Obviously, my greatest fear is he may need back and neck surgery. I'm already checking our car and health insurance to see what help we can get from nurses and aides. Since we have no friends or family here, I need a Plan B. I can barely help him in and out of the car right now! And boy, does my heart ache for him! This is one of those situations where I can TRULY say "I feel your pain." My instinct is to do whatever it takes to get him OUT of pain because I know how bad I feel. I can't bear the thought of him experiencing the same thing. This experience has made me gain a new respect for the AC/SM parents among us...like Barbara and Sherri and Michelle. Watching someone you love dearly have pain and be relatively helpless is an AWFUL feeling. Anyway, Tiredmama, make sure your blood pressure is thoroughly checked. I also have autonomic dysreflexia. (You can read up on it on WebMD or NIH) Not to scare you but this condition can also add to the symptoms we're having. It's a rare condition but usually found in people with spinal cord injuries and blockages. I take a beta blocker and they monitor me carefully. |
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babkane |
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Dear Kathi,
I am so sorry about Neil! What are his injuries? I have had chronic back and neck pain since I was 17, and had extensive spine surgery on 12/1, so I really empathize with him. Please tell him the Kane family is thinking of him. Is it humid in Texas? Barbara |
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Lisa Stringer |
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Kathi,
I am so sorry to hear about Neil. Unfortunately you are now in a situation where each of you has a clarity of what the other feels like that I am sure both of you could do without. Be sure to get a good attorney to look things over you don't want to agree to anything without legal representation. You guys hang in there and keep us posted. We will be sending good thoughts your way. |
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Eliza |
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Dang, Kathi, are you serious? I am so sorry. That is too, too much! I am so sorry for Neil, and for you. And, I am saying this because I know how people in
general are but also because I know how YOU are: don't you DARE try to be a hero. You know what your limitations are, and don't think for one second
that, just because Neil needs help, that that somehow trumps the fact that YOU need help. You got it?! You don't do anything you can't, or
shouldn't be, doing. I don't care how much your instinct is to say, "Well, I can handle doing ___ just this once, 'cause he really can't
do it right now." You can't. If you have to hire someone, if you have to let the grass grow, or the house get dirty, or whatever, the world will keep
spinning, and life will go on. And if you have to pay someone to do it, somehow, somewhere, it will get covered. GOT IT? (At the same time, I can't help
but wonder if, after all of the time you've spent wondering how he could still love you despite all of your "defects," it might not--in some sick
and twisted way--help you to realize that, yes, he's still pretty lovable, even being all cripped up? Obviously, while hoping this is highly temporary and
that he is feeling much better as soon as possible).
Funny you should mention about the temperatures of the showers. When I look back at the various symptoms I had long before I realized there was anything wrong, that is one of the ones that stands out to me, actually in a fairly humorous way (as opposed to the ones that have me pretty pissed off. See: one point off my NYSSMA score for posture, which kept me out of all-state chorus in high school. Yup, still bitter). Anyway, when I was in college, for my P.E. credits, I took WSI (water safety instructor). After class, we'd take showers, which was one of those oh-so-humane set ups where there were multiple shower heads set up around a single pole, so, sort of like a maypole dance, but with semi-naked chicks instead of ribbons. So, we'd all shower in groups around these poles, while still in our bathing suits (sorry, Kevin). And, in the stupid things college kids do, we had this thing about seeing how hot we could bear it, and, for the white chicks, how red we could make ourselves. Well, provided I stood at the right angle, making only my shoulders and upper back get wet, I could go for hot-as-it-could go, and I could "win" every time, no problem. You'd think, after awhile, we'd have either stopped this stupid contest, or I'd have figured out that this was kind of abnormal, but, nope, twice a week for an entire semester, I put up with burning hot water in order to bask in the glory of being the WINNER of being scalded while no one else could take the heat, so to speak. I've since realized it's because: I can't fully sense temperature in that area. Brilliant. And, Kathi, in case you were serious about the butchering (apparently, according to my [now-ex-]*friends here, I need to "tone it down," so hopefully I'm not being too literal...), no, you're not butchering it at all. In Steinbeck's Of Mice and Men, it IS "The best-laid plans of mice and men..., although it's actually misquoted THERE, and the original Burns poem on which it's based is actually, I think, "The best-laid SCHEMES..." (So, you didn't butcher it; Steinbeck did ;-) ). *Because apparently it is nit-picky to expect that, when you do a show, you put the correct composer and playwright on the program title page and not just the first people who show up on Google, even if those people wrote a different show that happened to have the same title, even if it was 34 years earlier. That's why I'm a total c*. I'd be a much bigger c* if the licensing company actually cared about this property the way some of the other companies care about theirs. Like, Rodgers and Hammerstein properties? Oh, man. This show, I'm just nit-picky. If it were an R&H show? I'd be nit-picky, and they'd be being sued for tens of thousands of dollars. R&H loves suing people. This show, they figure they look better keeping their family-friendly image. Bummer. Not bitter about that, either. I'd forgotten there was a perfectly good reason I'd stopped doing theater long before I got sick. It's because most theater people are batsh*t crazy. So, just to clarify, I would not be JUDGING you for misquoting Steinbeck on a messageboard. On the otherhand, if you had spent 12K to put on a licensed production of a musical version of one of his shows but then attributed it to some random other author who once happened to mention Mice and Men in something he wrote, and you printed that in the programs, despite having signed a contract in which you'd clearly stated to whom you'd give credit AND you were supposed to give me the program to copy-edit but didn't because you were involved in some petty pissy match? (Oh, and your director also completely plagarized his entire director's note, which I would have noticed in under 15 seconds, had you given it to me like you were supposed to?) Then I'd judge you. Just in case you were concerned :-) Hypothetically speaking, of course. |
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Lisa Stringer |
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The water temperature thing is an issue here also, only it isn't just parts of my body my hands have trouble too. We actually put in thermostats for a
bizillion dollars on the shower and tub in the master bath. You set them and they don't let the water get hotter than that. They showed them to us at the
bath store and we bought them without ever asking the price.
Funny that you should interject Kevin in your story Eliza, because as I was reading I was figuring he could come up with a comment! Kathi, Eliza is right hang in there and don't over do it! |
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Eliza |
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Uggh, I realize that is probably a useful and healthy thing to have so you don't risk burning yourself, but all I can picture is how the Department of
Health used to make us set the thermostat on the hot water heater at camp ABSURDLY low so that there was no risk of campers' burning themselves in the camp
shower. Like, ABSURDLY low, like, dumping my Brita water pitcher from the fridge would give me a warmer shower, low. Now, realize, this camp was in the
Adirondacks, where it would get down to 40 degrees in the evenings by the end of the summer. You come in from sailing and all you want is a hot shower.
Of course, hypothetically, if one were fortunate to be at a camp where one of the benefits of being on an island meant you actually got some advanced warning of a DOH visit (because they needed a boat pickup, vs every other camp, where they just show up), one MIGHT keep the water at a warmer-but-still-non-dangerous level and then just turn it down when the DOH arrived. Again. Hypothetically. Along with all of the other things on the hypothetical checklist of things to hypothetically adjust in the 30 minutes it took to pick up the DOH at the dock (poor DOH. Always had to take the slowest boat we had!). So, I know those thermostats are probably great things to have, Lisa, but all I can picture are like torture devices that would make me keep the water at ice-level that makes shivering children cry. I'm careful now to test the water on a part that (I think? Shoot. Now I'm all paranoid!) has all its feeling, but a hot shower does more in making me feel better than just about any drug or TENS unit. Speaking of, some dude just brought one to my house. Tens unit, that is, not shower or drug. The new physiatrist was all big on how he was gonna get me an inferential stimulator, which was DIFFERENT from a TENS unit. I told him I had one of those, but he told me I was wrong and I had a TENS. Hey, whatever, I don't like to waste insurance's money, but maybe it's a newer version, so I'm not gonna argue, even though I KNOW I have the inferential one (because I ALSO have an old TENS unit, which is only half-useable), because my PT got it for me on my old insurance and I was supposed to give it back and never did and insurance finally decided it was cheaper to buy it out rather than keep renting and trying to get me to give it back, and now I have new insurance, and, ha, I deserve to win on SOMETHING after my stupid school district went against our contract and took away our choice of insurance; send it on over. I ain't making any calls or fighting for it, so I don't believe I'll ever get it anyway, but, what do you know, this dude just calls me, hi, I'm in your neighborhood, are you there? Can I bring it now? Fortunately, he didn't kill me, and all is well. So, we go through the whole deal where I have to pretend I can't grasp the concept of CROSS THE WIRES, and PRESS THE ON BUTTON because the poor man probably deals with idiots all day long so I let him draw me his little picture and he gives me the machine that looks like maybe they've slightly modified the last inferential stim one they give me, so, sure, I'll take it. All of a sudden, I look more closely, and: it's a TENS. Heh. I tell him, "Are you sure this is the right one? The doc seemed pretty insistent that there was no way I already had the inferential and that's what he wanted me to have, and this one says TENS right on it." He looks through his paperwork, definitely looking like he's nervous he's messed up. "Nope, they definitely ordered you a TENS." Brilliant. Whatever. I happen to prefer the TENS, and I tore the wire on my really old one (why I can only half-use it), so, while I DID have an inf. I did NOT have a functional TENS, so, yay for me, but, seriously? You're gonna act like *I* don't know what I'm talking about and then order me the wrong thing? Someday, the world will realize that I am always right, and it will just save everyone a lot of time and energy ;-) Anyway, he sets it up and tells me to stop him when it gets too high. This is the same area where I win the hot shower contest (opposite of where I win the wet T-shirt contest...). So, he's going, and going, and going.... and finally I'm like, "Does it pulsate and go higher? 'Cause, then I guess I should stop there, in case it's suddenly going to go higher. Otherwise, go up a few more." And he's all, "Damn, I'm impressed. I don't think I've ever seen anyone have it go that high. [beat] Or maybe that's a bad thing. Do you have major nerve damage?" Well, GO ME. I win shower contests AND TENS unit contests. And yet I'm about to go out of my mind with pain inside it. So, explain THAT one, neuros. Oh, wait, I'm sorry, you can't because you're too busy last-minute-canceling my scheduled-two-months-ago appointment so you can be on the news for saving Haiti, a trip that you've clearly had scheduled for weeks. Not bitter. Since I'm clearly not gonna pass as Haitian, I wonder if I can convince anyone I'm a paralyzed football player (since you like those dudes, too), so maybe I can get another appointment before the end of the summer? (Sorry. I realize that the people in Haiti need these services desperately and have almost no options and I am amazingly lucky to have the choices I do as an American, but, dang, it's frustrating when the situation could have been avoided if someone worked in a functional office that knew how to, say, operate Google Calendar, or, say, not act like a total arse. Grrr (Note: not the TENS-guy. That guy rules). Other totally random Hot Bathwater story (warning, explicit but completely relevant language ahead. I've starred it out but I'm warning you if you are super sensitive. Otoh, if you're that sensitive, you probably shouldn't read any posts I write, because the language used here is about as innocent as I get. Kisses) : Baby Eliza. Learning to talk. Mom makes Eliza a bath, goes to check the temperature before putting Baby Eliza in it (GOOD MOMMY!). Water is very, very hot. Mom is surprised by hotness of water. Mom jumps back and yells out, "F*CK" Baby Eliza, learning to talk. Smiles. Points at bathtub. Cute baby voice. "Fuuhh?" For weeks, every time Baby Eliza sees bathtub, Baby Eliza points and says, innocently, "Fuuhh?" Took some de-learning on that one. (Kevin, no comment there, either!). (Never mind. I WAS being totally innocent. I tried. It's hard). |
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Lisa Stringer |
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Oh, how I have missed Eliza and her writing, I am glad you are done with school for the summer so we can enjoy your wit.
Water heaters set at 120 are generally considered safe, so glad to hear that the DOH would prefer cold showers over clean utensils etc. Never fear the thermostat on the shower can be set to over 100 but you have to actuall push in and turn to get it that high. |
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tiredmama |
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Kathi... sorry about Neil. It is really so sad u r both having so much trouble. I'll keep you both in my prayers. As for the rest.
lol... you guys are too much.. lol. I loved reading all you wrote. Um... as far as water/ food temp it comes and goes. I almost scalded my 3 year old with really hot food |
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Lisa Stringer |
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Surgery is no guarantee that you will get sensation back even if it comes and go. Generally the decompression works better for helping headaches, autonomic
issues like temperature control, heart rate etc. and it may improve fatigue. Of course every case is different just be aware that if a dr. tells you that
surgery will cure this they are lying or at the very least have no clue what they are talking about. The Cleveland Clinic is a great place to go. Remember with
CM and SM surgery isn't always the answer and it is only part of the treatment for many patients.
I cannot tell if food is hot so family and friends know to warn me when we are dining out if something is particularly hot otherwise I will burn my mouth. They are also pretty good about giving me a heads up when we stay at a hotel that has really hot water. |
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tiredmama |
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LOL... this is just another case of laugh about something so it doesn't upset u! on the upshot, i am no longer in charge of bath time!
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kathik |
Of Mice and woMEN | ||
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Oh Eliza...one of your posts is on the VERY short list of things that can make me smile right now. It was so good to read it. Even if you ARE getting screwed
over by our great healthcare system. I'd like to write a book called "Stupid Doctor Tricks." And now that I've been in Texas for almost a
year, I'll never, ever say a bad thing about my NJ doctors again. (God...I hope some of them read this in case I ever get back!) These guys make my NJ
doctors look like a bunch of Yale professors. I can't even write about the newest mess at Texas PM because it may get ugly but...trust me...it's enough
to have me puking, not sleeping and losing hair! And various doctors keep saying this weird, one liner to me..."Austin really is just a small town."
WHAT?!? HUH?!?! It is the State Capitol of a DAMN big state?! No, I didn't anticipate medical care/expertise on the level of New york but I DID, however,
expect more than, let's say, Altoona, Pennsylvania.
Okay...where do I start?? Eliza...pardon my ignorance but aren't you WAY past a TENS unit? What I mean is, isn't that a little primitive and Bush League for all you've been through?!? And I HOWLED when I read the stuff about Steinbeck. When I was in the video business, Disney sent out a TEAM (not one, not two but THREE) lawyers to a small, local video store. He had rented a costume of Mickey The Sorcerer when Fantasia was released. Apparently, this was not a Disney-approved, authorized, genuine costume and he was handed a Cease and Desist order. It's amazing to me that a company as large as Disney can know that a video store in Jersey has some 18 y/o kid wearing a Mickey costume on a weekend promotion. Do they have satellites that detect bootleg Disney merch? (Good thing Steinbeck is dead. I may owe him residuals for using his quote. I hope his estate doesn't employ Disney's lawyers...) To be perfectly honest, we don't have clue ONE exactly what is wrong with Neil. I've heard everything from rotator cuff to bone fragments to whiplash to seatbelt trauma to bad flow from his 3rd chakra. (For lack of a nicer way to put it, just about everyone in Austin is a hippie.) They can diagnose and cure EVERYTHING with massage, yoga and vegetarianism. (Even Syringomyelia if you BELIEVE hard enough) He's had one branch block and it made him worse. Round Two is on Tuesday and I'm quite honestly...very hesitant. But since there is no other viable solution at this time, we don't know what else to do. I (obviously) want to take him HOME to our doctors. He won't go. And believe me, I'm not overextending myself because those days are over. It's not a matter of wanting/not wanting to. I am simply...no longer able to. The deficits re growing slowly and surely. And just when I was starting to come to a "place" with that in my head...we moved here. Now, I find the depressions coming back and the urge to just give up on doctors. Just to wander off track for a bit...I need to rant. I was never a Michael Jackson or a Farah Fawcett fan. But last night, I happened to catch her documentary on MSNBC. I wasn't aware that HER actions (while extremely ill), got the California legislature to pass laws regarding privacy of medical records. Because of the breach to The Enquirer regarding her illness, they revamped their entire computer system. It was surreal to see her laying in bed with an Enquirer in her hand with a headline that screams "FARAH WANTS TO DIE". When I saw that scene, my heart broke. Celebrity or not, no human being deserves to see that in a headline. Especially when they are fighting with everything they've got to stay alive. On the flipside, the report also irked me. She went to Germany 6 times for experimental treatment. (Try affording THAT) Between the scenes filmed there and at various medical facilities all over California, she was fawned over...treated like a queen. Doctors SAT in her room and TALKED. Obviously, money and fame CAN "buy" you life...even if it's just an extension of life. How many of US do you think would have gotten that treatment?? "Dr. House" doesn't exist. I think that show also has damaged the health profession just as CSI damaged forensic law. People think you can get a DNA result in 10 minutes and you can also get a doctor to stay awake 3 days straight (with a TEAM of colleagues) in an effort to cure a patient. Everytime I watch that show, I always kid around ..."Think that patient has Medicaid?" But...I digress. Farah fought a DISEASE, very bravely I may add. Yet all the news is about Michael Jackson. I'm making assumptions here but my gut tells me he didn't expire from any disease except drug addiction. How sad whom we choose to idolize. Rant over. I can't stress enough Tiredmama that what Lisa says is the gospel truth! Any doctor who says he can "cure" you of SM should be RAN from as fast as your compromised legs will carry you. The goal of surgery is to (hopefully), stop or delay progression of the disease. There is no proven "cure." I am a surgical virgin so I can't speak to what may come back as far as sensations and temperature. All I know is what I've read and that's the longer the deficits exist, the less likely it it they'll come back. So...they now make a prescription liquid that can grow your eyelashes and make them lusher and darker...but they can't cure syringomyelia. Hmmmm...does that sound bitter? I MUST get out of here. I'm wilting in body, mind...and spirit. |
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tiredmama |
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Well... I must say the only surgery mentioned to me thus far is scoliosis and kyphosis surgery, and that was from the orthopaedic doctor that referred me to
the neurosurgeon at Cleveland Clinic. I don't believe anyone will tell me they can cure me, cuz laughing gas couldn't make me laugh harder than that.
My mother tells me I'm probably the worlds worst patient because I look everything up and come back to the doctors with a zillion questions. She says by
the time I get done I'll probably know more about this illness than my family doctor. Think he'll give me a discount on my bi-monthly visits if I teach
him a thing or two? lol. I doubt it. But anyway, all I know is that if they want to do surgery on the syrinx then they better do it with the scoliosis surgery
because back surgery is right up there with the top ten things Serita is likely to do! lol. You know, like crawl into bed with a tarantula. Since that's
not going to happen then I suggest they do this right the first time. lol. Not that even if they do do (that sounds really wrong! lol) it right then I
wouldn't have to have more surgeries from all I have read and heard from other people suffering with this disease.
And sadly, lol, my compromised legs get outdone and outrun by senior citizens on a daily basis. lol. No offense meant to any seniors that might read this, it's just one of the ironies that I noticed while waiting in the car for my husband to come out with BK for lunch one day last week. All the senior citizens coming out of the building can walk faster and easier than I can. LOL. Now tell me that isn't funny. Another irony I just noticed tonight. Big on irony this week. Most of the replies and posts I have read on here are by women. I thought this disease was supposed to affect mostly men. Hmmmm.... just gave me a moments thought. Kind of like the high heels I used to wear to the office. They had to have been designed by men because no man would make a shoe so uncomfortable! lol. |
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Lisa Stringer |
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Serita,
You are correct you will sound like a dr. as you continue on with this journey. You will know more about SM, CM and scoliosis than mos drs. because they need to know about hundreds and hundreds of things, we however had the privilege of being highly specialized. I have met more women than men with these disorders but i suspect that may be because we are more willing to talk about it. Jerry is our resident guy with SM etc. here and he hasn't posted lately but I am sure he will chime in when he gets a chance. |
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babkane |
Oh...the HORROR!! | ||
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My son was an intern for Marcy Speer years ago at Duke Univ. Center for Human Genetics. Part of his job was to put together the pedigrees of families affected by Chiari and find commonalities. With the data he was given, he found that more women than men are affected by Chiari with and without SM. The generally accepted opinion is that surgery should treat the cause of SM. I can't remember if Serita knows the cause of her SM. Also, SM is a cause of scoliosis. Treat the cause of SM, and potentially the syrinx can start to drain and scoliosis curves can lessen. Laura's scoliosis lessened, but her syrinx did not drain until she had a subarachnoid shunt placed in her spinal cord. The longer there are neurological changes, the less chance there is of improvement after surgery. Laura experienced extreme hand weakness (they were usually useless) before each surgery, but most of her hand strength returned as a result of each surgery. We were not give any guarantees. I had major scoliosis+ surgery on 12/1. The downside of that is I can no longer have MRI's of the area where my stainless steel rods and other
instrumentation are (S1-T9). This would be a big problem if I had SM or if I develop a serious problem that would warrant an MRI. I had a myelogram before the
introduction of MRI's, and I am not a big fan of them.
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tiredmama |
WOW.. what a lot of info... | ||
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I had thought that if I had the scoliosis surgery then they wouldn't be able to do MRIs for the SM. Now that could be a real problem. Thank God I can leave the working of that out to the doctors for the most part. That's why they get the big bucks. lol. I keep picturing someone with steel rods in an MRI machine spinning round and round with the magnets. LMAO at the thought! But anyway... no, I don't have the cause yet. I do know I have alot of headaches... pretty much daily. My headaches started when I was around 5 but now they are a daily thing. They had told me they were sinus related. I won't see my neurosurgeon until July 31 at which time I imagine there will be all kinds of tests scheduled to find the cause of the SM. As far as the nerve damage, I can't really pinpoint how long I have had these problems as I have had so many problems with the scoliosis since I was 12 that I really don't give a thought to what was causing it. I always thought it was the scoliosis. My bones have dislocated since I was 12, and not just vertebrae, but hips, shoulders, neck, ribs. You get the picture. So if I was having trouble moving I just assumed (u know the saying) it was due to dislocation. I never even had to do anything to make them go out. Sometimes it was walking, sometimes I'd go to bed fine and wake up with bones dislocated. LOL. One day last summer I went to bed and woke up with my neck stuck up against my left shoulder. I let it go that way for 3 days till I caved and went to the chiropractor. That should give everyone a laugh. A grown woman walking around with her head on sideways for 3 days. So anyway, I'm glad u confirmed my suspicions about the MRIs because I would hate to be railroaded into a surgery that would prevent the monitoring of the SM. That would be bad. As for the problems I have, it is mostly my left side. I can't lift anything over 10 pounds or I get extremely weak all over. I have had my muscles in my shoulder blade area in spasm for about a week now. I have to use a cane to walk every day. Some days I have to use a walker. I use the cane because my left leg doesn't work so good, and the walker is for days that both legs quit cooperating. I lose sense of heat in my hands sometimes, but not constant. I have lessened sensation to touch on my left side. I also get these funny muscle spasms sometimes on my left side that will jerk my left leg or arm. The really funny one was when I was in bed one night and all of a sudden my left arm just swung out of it's own accord. I was just falling asleep and really glad my husband was already sound asleep. lol. I don't think he would have believed I didn't "smack" him on purpose! lol. Hopefully the specialists will have some answers for me, but in the mean time I did file for ssdi. I have had all 3 doctors I have seen tell me I'll never work again. Don't know if it is true or not, but if not I figure I might as well start that now rather than later. Thanks so much everyone for the info. ttys... Serita |
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Lisa Stringer |
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Serita,
Connective tissue problems are also found in patients with SM and CM so this could explain your dislocation issue. It has taken 30 years but you will finally have answers for problems you started noticing as a child. Don't rule out the scoliosis surgery because of the MRI issue. It may be something you really need, there are other tests they can do if need be to monitor your syrinx. If you haven't had them I suspect someone will send you for brain and cervicle MRIs to check for chiari, it is quite possible you have that along with the SM. Heck even if you have already had the MRIs the right dr. will look at it and be able to tell you if you have Chiari even if someone else told you that you did not. |
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tiredmama |
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The MRIs I had were of cervical thorasic and lumbar spine. I must have had a really great radiologist to read them because my orthopaedic doctor told me they
weren't at the right angle to even see a syrinx. He said you need axial angle MRIs and mine weren't done from that angle. No brain MRIs yet, but I
figure the clinic will want those as well. Especially since I started paying more attention to my head aches and that they are starting at the base of my
skull. I never paid attention before, but I figure that if I can't at least tell the doctors the symptoms then I'll not get the correct tests done.
That is interesting about the connective tissues though. We were told it was because I grew too fast. I didn't slow down in growth like most kids, but
instead just kept growing continually until about 15. I have been the same height since I was 15 yrs. old. Thanks once more for the info Lisa. And Barbara...
Thanks for your info and for the add on facebook.
Serita |
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Lisa Stringer |
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Serita,
TCI has done a lot of the work on trying to figrue out the connective tissue angle so you might want to check on their website to see what they have. The most common connective tissue that seems to come up with CM and SM is EDS or Ehlers Danlos so you might want to do a web search on that. There are a lot of pieces to this puzzle which is why simply doing surgery doesn't fix everything. |
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