stellakitty

Maxine- Have any of your docs put you in a collar yet? I wear a Miami J right now but I'm getting a custom one because my neck is too long and skinny for any of the pre made collars to fit... I habve to wear it anytime I am sitting or standing (which isn't often). I'm seeing Dr. Oro right now and it looks like I'm going to be having TCS surgery and then we're planning on going to TCI to have the patch removed and fusion (can't fly right now)... I had my wisdom teeth in feb removed and what the OS did is he put the head down below my heart and he kept my collar on and he tried not to open my jaw too much... That's all I remember (was drugged up). Good luck... I feel for you. I hate it when my neck subluxes... I wouldn't wish this on anyone else in the world. As fopr docs... I had one oc tell me that my not being able to mobve my right foot was a bad habit.... He then yelled at me in the exam room to wiggle my toes... And told me I wasn't trying hard enough when I couldn't move my toes....

Strangest place... Hmmm... I've fallen off the toilet more times than I care to confess and then can't remember getting up and going to the bathroom and wonder *** I'm doing on the bathroom floor with my panties down around my ankles. But I've read on some website that is a common occurance, only for me it happens just because I'm sitting there.... Strangest thing anyone has ever said... My mom and I were taking the Amtrack back from Milwaukee 2.5 years from a nsg consult to dx chiari malformation... We were at the Chicago station and I kept passing out... Finally this man carried me to a couch from my w/c and laid me down. While I was out, he told my mom if they (the doctors) had ever considered if allergies were the root of all my problems. My mom said no, we are pretty sure that I don't have allergies. Actually we were on our way home from an appointment and we think e know what might be going on... Then he finally siad you should contact Barbara Walters and them... They always figure out those crazy mysteries... They're good at solving murders, maybe they could help your daughter. By then I was awake and it was time to board the train... And no it's not allergies... The problem is with my spine and head and collegen, thank you very much crazy barbara walters fan.

I have Chiari I (decompressed June 7, 2006), Cranial Cervical Instability, Tethered Cord Syndrome, all caused by SEVERE classic EDS... Even after I get the CCI and TCS surgicallly fixed I will still have Dysaut. Hopefully I will not be totally incapacitated by symptoms... Right now I sleep (live) on living room floor and am home bound due to symptoms. The goal of the surgeries will be to bring a functionality to my life not a cure.

Hey... I have chiari malformation (which caused brain stem and spinal cord sompression)... My decompression surgery which was preformed 2 years ago (on June 7) has failed because the surgeon didn't take my severe EDS into account and I know have bad cranial cervical instability (my head is sinking into my c spine and when I flex/extend my head my vertebrae come out of place, causing trauma). I also have Cervical and Lumbar DDD, along with thoracic scoliosis, and kyphosis... We also strongly suspect that I have tethered cord syndrome. In my case dysautonomia hasn't been CAUSED by my spinal issues, but they are being exascerbated by the spine problems. I'm awaiting a surgery to fuse my skull and c-spine together to hopefuly stp my current progresion of symtpoms... I definately think that your spine health plays a role in dysautonomia.

I need to say this... You can't break up the fetynal tablet... It is a tablet that you stick between your gum and cheek right above your molar and it fizzes away.... IT works in <10 mins... Any crushed tablets (and with the sucky packaging when you try to open the tabs you get alot of crushed tabs) you have to throw out. And once the tab is exposed to air, IT MUST be used....you see, your idea wouldn't work. Flop... I used Fentora BEFORE i was on the patch. Most docs prescribe oxyodone for breakthrough pain... BUt I am still having a hard time understanding WHY you want to start off on such a "big gun"... I know that you don't want to be in pain... As a fellower pain sufferer I can understand. Have you tried, Lidoderm? They are lidocaine patches that you stick where they hurt. Have you tried Flector Patches? They are patches and the anti inflamitory meds are absorbed through the skin... You wouldn't have to worry about your tummy. TENS, Inferential stim? Both pain devices that are good for nerve pains... There are so many more options out there other than FETYNAL! Which is a scary drug, trust me... I wish I NEVER took it! I lost out on 6 months of my exsistance... When I say that I mean, I don't remember a thing... I'm already house and bedbound, but I don't remember seeing my friends before they left for college, or my 18th birthday.... I missed out on a lot... Just because you have a hx of drug abuse doesn't make you imune to being addicted to feyt... IT's way more addictive than herion... You can look it up if you don't believ me.

STAY AWAY FROM FENTORA (the fetynal lozenge).... I tryed it and I am opiod tolerent.... I was on it for headaches from my chiari and cranial cervical instability... I'd only take it when the headaches left me in pain to the point where I was barfing and on the edge of fainting from the intensity of the pain. I ended up addicted. First time EVER! I stole them from my mom's lock box and didn't even remember... It would knock me straight out for several hours (this is someone who goes to the ER and last time I got 3 mg of dilaudid and 75 mg of bendryl due to itchyness from painmeds... I was still coherent). Then I tried the patch I worked up to 75 mcg/day... It did nothing to my pain. But I don't remember the entire time I was on the patch. I was trying to sleep, I couldn't stay awake... NO matter how much we lowered the dose. Finally my mom said give up the fetynal or I'm going to have to put you in a nursing home because I can't take care of you like this. I handed over the unused patches at my next PM visit... Now I take roxinal (liquid morphine), 20 mg, prn, typically 3 x a day along with oxycodone and lunesta to try to get some sleep through the pain at night (which obviously isn't working tonight).... Why are you so sure that you NEED fentora... From my experience it's a NASTY NASTY drug, to only be given out in the most dire of situations. I am not an addictive personality... You have mentioned above that your POTS started after experiementing with drugs (not that I hold that against you), if I can be hooked on fentora with no prior history of drug abuse do you think you can withstand her powers? I became suicidal while on fentora... At 18 I was contemplating ending my life over a STUPID narcotic... Do you want to live your life like that. I remember reading, after I had freed myself from that ****, that Fetynal is 100x more addictive than herion. 100x. It's up to you and your docs if you want to take that chance for your pain. TO me nothing will ever be worth it agian. And I live with VERY severe pain. My pain levels have not been below a 7/10 in over seven years now.... But I'd rather live my life with that pain then ever take that drug agian. I think you should exhaust ALL methods of pain managment (TENS unit, accupunctre, pain patches) before turning to opiates... I just don't understand why you want to go that route... I am living that way and I hate having to rely on my meds.... If you can stomach anti inflammitories they now have them in patch form, Flector PAtch, you stick it on the affected area... Also have you tried lidocaine patches.... There's way more out there than pain meds.

I don't have scolisis that bad... At last measure it was 28*... I also have kyphosis. And yes I have EDS and chiari.

I just wanted to say be careful with the canes... If you *really* don't feel good sit on the floor. My cane at least isn't very steady. I don't use it anymore because I progressed to a wheelchair (and now I can rarely get out in the w/c but...)... There were several times where I felt dizzy and whipped out my "handy-dandy SEAT CANE!"... Either I would lose my balance or I would just pass out but either way the result was the same... I ended up on the floor. Just an FYI... But I do (did) like my seat cane. I took it on a photography field trip to downtown Denver 4 years ago and if I hadn't had the cane I wouldn't have been able to go... I think my mom got mine from "Lillian Vernon" for like twenty bucks...

I concur with Sophie... Also... Chiari decompression most likely isn't going to cure you of POTS but help with your central nervous system symptoms. I see Dr. Menezes in Iowa (for now... I go back on jan 18) and he told me that even after my spine is fused (I''ve already been decompressed... overly actually, which I will get to) I will STILL have sytmptoms. His genetcist concured... The hope is to get me functional (I'm homebound, practically "floorbound", I sleep on the floor). Another good reason to procede with caution is that this surgery has many risks... Example.... I am now part of the endura bovine dural substitutue recall. Which was recalled because their products weren't sterile... And this is in my BRAIN! No wonder I got meningititis and about a million different kinds of staph that required the docs here to go BACK in my head... Now I'm spiking low fevers (between 99 and 100... high for someone that runs around 96*) almost daily and something is WRONG. I saw an infectious disease doc last week and he feels it could be the dumb patch (wasn't sure though...)... Now when I spike a fever above 100* with worse symptoms (so hard to tell these days) we have to go to the ER for another LP and another CT. If you need this surgery I don't want to scare you... If you are having "drop attacks" that is typically a good indication for OR. I also understand that UNBEARABLE, CONSTANT headaches, are usually a good indication as well... As I've said in previous posts I've not had a headache below a 7/10 in nearly 7 years (now on roxinol prn). But POTS alone really (in my opinion) doesn't constitute cutting into your head. I remember the weeks leading up to my decomp I had severe double vision that wouldn't stop... It SUCKED... I couldn't read or anything. Of course I'm not a doctor (I still have to graduate from highschool), but this would be my personal experience and what I've gathered from reading LEGITIMATE sources (NOT wikipedia)... You're more than welcome to PM me if you have any questions... Alexa

Before letting him cut into your head you NEED to be evaluated for a connective tissue disorder... If you have EDS or something that changes the gameplan... Unfortunately I know from personal experience!!! I had the surgery June '06 and went from being unable to sit upright and on O2 (with tons of other sx) to putting around the mall wihtout my wheelchair like a normal teenager. But this was after I had contracted Bacterial Meningitis AND several strains of staph that required the doctors here in Denver to go back into my head only 3 weeks after the surgery. According to my doctors I'm very lucky that I didn't die ( I wouldn't know.... That experience is a blur to me.) The sense of normalcy I regained only lasted 3 months as well... Now I'm almost worse off than I was before.... I'm on opiates daily that I wasn't on before the decompression because the head and neck pain are now totally unbearable... I had headpain before, but I was medicating it with a spray ("Stadol") probably only 3-4 times a week. My right leg no longer works either... I could go on all day about what is wrong with my body now.... This is becuase I have severe EDS (according to genetics at University of Iowa) and I have cranial settling and cranial cervical instability.... I should've had a "cranio cervical fusion" at the same time as my decompression (according to Dr. Menezes University of Iowa). I am awaiting the CCF... I go back to Iowa on Jan. 18 and hopefully then we will hav everything figured out... But I think you need to make sure that your "glue" (collegen) is up to par before undergoing this surgery. I don't want to see you go through the same thing that I have been going through. Plus this surgery hurts like **** (that part I do remember and remember it quite well....) Alexa

It depends on how obvious the herniation is... Mine was not caught by radiology. However when we showed the films to my pcp before sending them to the nsgshe said that looks like it right there. Typically you have to send your MRIs out to someone who specializes in chiari and related disorders. Not to mention alot of doctors don't believe that chiari can cause symptoms (in truth, there are alot of people walking around with CM asymptomatic... it's when the CM blocks off CSF flow, and causes brainstem compression that there are issues).

Hi.... This is Angie's daughter, Alexa (I'm the one with Chiari, dysautonomia, neck junk, EDS).... I have so many symptoms due to the chiari cervical stuff. We have determined that my disk issues are from Cervical instability/ cranial settling. We first found the bulging/ herniated disks when I was 16 (I'm now 18) and needless to say that's rather young to have disk degeneration. I have fairly severe Ehlers Danlos as well. Symptom wise I have had a SEVERE unrelenting headache at the base of my skull for almost seven years... It has not gotten below a 7/10 on the pain scale even with narcotics since the day it started. I also have severe pains throughout my body (neck, back, arms, legs).... As well as numbness and tingling. I cannot feel external pains from my neck down (ie if I stubb my toe, I don't notice until I look down and see my toenail is falling off). I have developed "drop foot" in my right leg/foot and can no longer move that leg from the knee down. My autonomic dysfunction is SEVERE... I can no longer sit up without passing out. My blood pressureranges from so low a pulse cannot be palpated, to above 250/150. My pulse can range from 30 to above 200. I have a ton of nausea and vomitting (presumbly from the high amount of pain coupled with my GI dysmotility). My GI tract DOES NOT move... You can touch my gut and feel "matter" up under my ribs... My pupils don't like to react to light. I fall due to loss of balance. Inaddition to passing out, I also have "drop attacks".... Basically on minute I'm fine and the next I'm one the floor with no idea of how I got there. My ears are always ringing. My eyes feel like they are going to pop out of my head. I can't pee at all. I have *very* slurred speech... I sound (and look) like I've had a stroke (I haven't... been checked out for that). I can't flex/extend my head/neck without passing out or feeling like I'm going to die. So basically on top of having a very screwed up ANS my CNS is also choosing to not function... These are just some of the symptoms that I have (meaning the ones that I deal with on a minute to minute basis...). I'm in a Miami J collar for the cranial settling for now.... I'm awaiting a cranio cervical fusion. From my experience with the decompression though, I wouldn't do it unless your qaulity of life is SEVERELY compromised or you are on a definate decline. Post op I contracted bacterial meningitis (along with about a million different kinds of staph) and ended up with a PICC fr 6 weeks to get abx. Now my neck issues are even worse because of the fact that they have to cut through the muscle to do the decompression... I had instability before surgery but now I HAVE to have the fusion (that we were trying to avoid). Of course I would do the decompression all over again as well... Before I got so sick again I had 3 glorious months where I was FUNCTIONAL.... Just be sure to weigh out ALL the pros and cons before going through with the surgery.... Alexa

Sure can. We belong to this club, believe me, you don't want to be a member. Angie

I definately don't have ADD or ADHD... I have always been a "go with the flow" kinda gal... Even when I had a knife sticking out my gut (NOT when they sent me to the pysch ward!) and last June when I was being wheeled into brain surgery. I can just sit down and get my school work done by myself with minimal self proding (I have had "senioritis for the last 2 years...), even though I haven't been able to go to school.

Joey and Sophia... If you guys are willing... I will send you two a PM. I think that's enough... I don't want to end up overwhelmed... Thank you! I will let you know what the results end up being.... Alexa

Firewoman... I have the same problem with the not being able to move my leg below the knee on my right foot... I cannot move my ankle, or my toes, PERIOD... Unless I am in cervical traction. This for me is constant... I have NO feeling in my extremities (unless it's the nerve pain, of course... but I can't feel external pain sources). I've been diagnosed in my right foot with significant "drop foot"... I have an AFO brace that I wear several times a day in order to prevent an incapsulated calf muscle (since it doesn't get "used) and muscle "shrinkage". My central neurological symptoms are not stemming from the Dysautnomia... I have Chiari malformation (decompressed June 2006) and because I have severe EDS post op my head has sunk BIG TIME (cranio cervical instability/cranio settling). I am awaitng a Cranio Cervical Fusion to stop the progression and hopefully make me somewhat better... Have you had an MRI of your head/neck and sent it to a doctor who specializes in chiari and related diseases? If you PM I will give you the info of the nsg I am currently seeing... He is VERY straightforaward and will look at your MRIs without you having to go up there... If he feels that a visit is warranted his office will call and schedule you for a consult. There is a possiblity that CM and CCI and EDS AREN"T causing your issues but at this point in the game it's a good idea to rule EVERYTHING out!! I was diagnosed with dysaut. when I was 14 and wasn't dxed with CM until 3 years later... I had to ask for the testing for CM. And this was after I had gone from being able to spend 6 hours at the amusment park, to being w/c ridden, to practically bed ridden... After I was decompressed I felt really good for about 3 monthes and then I got sick again in Oct. 2006 really fast due to the head falling... Now I wear a cervical collar full time... I can't sit up due to the pain and dizziness it causes. If I do go out it is typically only for doctor's appointments, and I have to come home and sleep. I told you my story not to make this post all about ME, but to let you what happened... CM snuck up on me. I just think it might be worth your time to check out because in my experience it HAS caused me to not be able to "use" my legs, my bp gets EXTREMELY high (about 250/140 with hrs above 200 at rest). Feel free to PM me... Alexa

Tammy and Jhjd... Thanks... I will send you guys a PM with my email addy. I have to get my research together (which is hard since I don't leave the house...) and I'm not finding alot... The correalation I'm finding tends to be "poo-pooed". I am thinking I would like to start gathering data in mid November. And will probably do this 2, maybe 3 times a day (if that's not too much... I know some people have jobs). I still have some thinking to do... LIT... Thanks for the info... I decided on this project becuase all I know is I end up eating more pain meds on these days... I'm not sure of my bp because I kinda gave up on trying to take it (I rarely get a reading), but for school credit (and to put highschool behind me) I'll squeeze the heck out of my arm...

I know what you mean Maxine... I've been doing the traction almost daily (several times a day) along with wearing an Aspen collar (switching to a Miami J) and I've noticed my neck is sooo much weaker than it was (if I take off my collar my head falls to the side). But this is what my nsg in Iowa wants me to do, and he's the boss. Plus we have no other choice than the fusion at this point anyways as I continue to decline(and we've known that since Feb.). But if you can avoid that and the CCF I would. I hope that you don't have MS that would be a drag on top of everything else...

Hey Maxine... I just wanted to let you know... I too have terrible weakness and slurred speech (CONSTANTLY) and we have determined in my case it is from the CCI.... It's become so bad that I have "drop foot" and now I can't move my right foot AT ALL... Are you able to do Cervical Traction? Maybe that could point you in one direction or another? I don't know... I know for me it provides ALOT of relief (only while I'm hanging) and my mom can actually understand what I'm trying to say. But I don't know if it's an option for you because you've had cervical surgery and you're not decompressed... I don't know what the deal is for non invasive traction for un decompressed chiarians. I just tought I would throw that out there for you though... Maybe you could talk to your surgeon and you could try it at PT that way if somthing happens you're in a controlled setting? Alexa

That's interesting that you mention Autonomic Dysreflexia, Pat, because that's what pain management calls it and my cardio doesn't know WHAT to call me other than I have something wrong with my ANS. Last night I had an AWFUL headache that woke me up and I took my bp and this is what it did over several hours: 162/119 pulse:163 161/94 pulse:111 195/85 pulse:85 82/59 pulse:160 102/63 pulse:164 127/97 pulse:150 It's like Dr. Jekyll and Mr. Hyde (BTW this is my lying down *trying* to go to sleep between 10:45 pm and 2:00 am). Not to mention I felt like death. I know that there have been several occasions where I wasn't wearing my hard collar and fainted and ended up popping something out in my neck because I couldn't move until my mom "straightened me out" (I know that sounds odd and far fetched).

Hey... I am working on graduating from high school (only 3 credits to go) and one of my "things" to get credit is I'm supposed to do a "science project"... I decided that since typically people with Dysautonomia feel even crummier when pressure fronts move in I am going to do vitals (blood pressure, heart rate, temperature) in relation to the barometric pressure. Here's where I need your help. I only have one "subject" (me) and that doesn't lead to very good results. So If I could please have FOUR more Dysutonomia patients "sign up" I'd really appreciate it. If you participate I will make you a medic alert bracelet for your time. If you are willing please post below and I will PM you with my email address. All you would have to do is give me your "zip code" (so I can look up your weather), and take your vitals and possibly record your sx. I'll also need to know your diagnosises, and your age, activity level. You don't have to have POTS... Just Autonomic Dysfunction. Thank you! Alexa

I just started going to Pain management within the past year and this has been an issue for quite some time... For my craniotomy for chiari we drove from Denver to Milwaukee (I was on NO pain meds on the way there) and I didn't go pee once! Kinda odd... I was even this way when I was in grade school... According to mom when I was in kindergarten I rode the Pike's Peak Cog all the way to the top, took the tour, rode it back down, and drove home... Didn't go pee, once. I was five! But now my doctors are really concerned that my bladder is going to rupture and I won't know (I have loss of feeling below my neck from the instability/compression). And the PM doc mentioned something about urine backing up into your kidneys? IDK... it's really pathetic when your mom has to remind you to go to the bathroom because you don't have th URGE to go... PT mentioned a stimulator one day... Anyone on here have one of those?

I didn't want her to think it was "just a chiari thing"... I was just putting it out there as I know she was recently dxed. Maybe after she's decompressed it will get somewhat better (fingers crossed...). I just know that in all the chiari clinics I've been to that is one of the questions they ask you again and again...

The urologist didn't want to deal with me... She walked in the room took a look at my chart and said that I was potty trained too well and that there was a very little chance that this could be caused by anything else (ie meds and my other problems). When I go I have to manually push on my bladder... I HAVE had an ultrasound of my bladder and kidneys a couple of years ago looking for disease and that was (-). I also do know that IT is filling up (they made me down alot of water for a US of my ovaries once). My intestines do the same thing (I go weeks w/o a BM).

Okay... I've read on here about how people ALWAYS gotta go... What about never having to go to the bathroom? I have dysaut., chiari, EDS, and cranial cervical instability and I NEVER pee. I've had people literally call me "the camal". I can go >12 hours without going pee. I've seen a urologist at the urging of my pain managment doctor and she told me the reason I'm always so constipated and "can't pee" is because it's a bad habit (ie I'm overly potty trained). I've tried the whole go to the bathroom every four hours and NOTHING comes out. I'm not dehydrated... I drink AT LEAST four 17 oz water bottles a day and WHEN I go it's CLEAR. Also I currently have a concussion (my w/c tipped over backwards on tuesday and whacked my head/neck good... was wearing a hard collar). But since tuesday I've been peeing even less... The other day I went 28 hours before I had to pee (my mom finally made to sit in the bathroom until I went). So I'm wondering if my head/neck has something to do with it... And it's been like that since tuesday. We're going to give it a couple of days but if I don't start going potty again my mom is going to call my neurosurgeon to see if I need a new MRI... My neck has been making noise even in the collar. Does anyone else have problems with not peeing? Do you know what it is? I realize my meds *could* cause it (I AM on opiates for pain control) but this is a longstanding problem... I was able to ride in the carr from Denver to Milwaukee without getting out to pee ONCE... And I wasn't on pain meds then. Alexa