stellakitty

Hey~ I just had a subocciptal craniectomy with duraplasty and partial lamenectomy of C-1 to decompress a chiari malformation on June 7 by Dr. Heffez. I personally do not recommend that surgery to anyone unless you are out of options. Dr. Heffez recommened surgery to my mom and I based on the fact that I was on O2 24/7 (levels would just drop to the low 60s for no reason at all), had a constant pain in the back of my head (felt like an ice pick had been lodged in my skull), and could no longer sit up due to severe orthostatic intolerence, and my abnormal SSEP study. I think the fact that I'm only 17 probably played into his decision as well. I had tried all of the "typical" POTS treatments to no avail. I continued to go downhill for five years until I got to the point mentioned above. Because of the surgery I ended up with bacterial meningitis and a severe staph infection. Less than a month after the initial surgery the local nuerosurgeon had to go in and scrape all of the infected and dead tissue out along with collect deeper cultures... This surgeon found pockets of puss all the way down to my dura patch. Now with that said do I regret doing the decompression? Absolutely not! Before the surgery I only left the house to go to doctors appts with my wheelchair and "Darth Vadar" oxygen tank, and then when I got to my doc's office I had to lay down on the floor with my feet up on a chair. I went to the movies 2x last week WITHOUT my wheelchair, and I've actually walked through grocery store on several occasions. I've not needed to use my oxygen and I just did an overnight pulse ox study which showed that with the exception of 3 1/2 mins my saturations remained above 90% (and this is at 8000 ft!). Of course the real test will be how I hold up over the months, for now I can say that this surgery has been a success... I still have POTS but I'm hoping that once I'm able to get back in the pool for PT and build my leg muscles back up my blood poolage will get better. I guess I should probably say that I do have EDS (definately hypermobile... I can lick my elbow!). Dr. Heffez feels that he will have to fix my neck from a horse accident five years ago, but he absolutely refuses to touch it until after I turn 21 (when we know for sure that I am done growing). I have several bulging disks and probable spinal cord compression (not true stenosis). Sorry that got so long... If you feel that you have chiari or cervical stenosis then look into it. If you do have chiari I would look at the qaulity of your life before jumping into surgery... For one that surgery hurt like none other, and there's what happened to me post-op (staph is all thanks to my wound flopping back open after staple removal). Alexa

Hey! I live in Colorado as well, but I'm quite aways from you. There used to be a really good doctor over at National Jewish whom was researching CFS, he is the one who finally put the pieces together and daignosed me with POTS. Alas shortly aftere diagnosing me he left for the CDC in Atlanta. My mom and I haven't had too much luck finding doctors... My pcp is really good (not taking anymore patients), and we found a GI guy who claims to see all of the dysaut. patients in the area (he knew what we were talking about), as well as a pulmonologist (she's pediatric, and we don't see her very often). Typically we have to travel out of state... For the decompression we went to Milwaukee, and I've seen Dr. Grubb twice. I know that you've said that you don't really have the money to travel to see someone out of state, but that might be your best bet. Unfortunately Colorado isn't really known for their excellent doctors! Alexa

I believe that initially a "normal" person's bp drops a few points (not enough to notice), and then their ANS kicks in and gets it back where it belongs. I do know a few "normal" people who become dizzy from standing up too fast, but it subsides rather quickly.

1. Name: Alexa (although sometimes my mom Angie posts under this name as well) 2. Age: 17 3. Dx: POTS, Chiari I, EDS III 4. Age at dx.: POTS (age 14), Chiari (age 16), EDS III (age 15) 5. Where you live: Morrison Colorado 6. Symptoms at worst: constant fainting (even when laying down), severe headache/pressure (in the back of head, up left side of face, in ears, behind eyes), nausea/vomitting, extreme fatigue, random pains, consitpation, extremely low bp (even ER can't read it), tachy/bradycardia, tremors, seizures, must put seat in the car all the way back with my feet on the dashboard, hypoxia (use of oxygen 24/7 otherewise O2 levels drop, and I become completey unresponsive or confused depending on how low it drops) (up until recently before my decompression this was the norm.) 7. Symptoms at best: fatigue, dizziness, constipation, joint pain, brain fog, alot of the above sypmtoms to a much lesser degree. At my best two years ago I was functional... I didn't require a wheel chair, oxygen. If you saw me walking down the halls at school you'd never know that I was sick. 8. Medications/treatments, etc. that didn't work for you: Florinef, Mestinon, Procrit, ending up under 72 hr lockdown for a "suicide attempt" (This is why we need to educate docs!! I'm smart enough to know that a 3" paring knife in my RUQ isn't going to kill me... My Vena Cava is on the other side! But it just isn't possible that I had a hypoxia attack, or fainted on it now is it? I was even tachycardic and hypoxic when my mom took me to the ER, told them that was the norm, and they said that was impossible!) 9. Medications/treatments, etc., that do work for you: chiari decompression (I don't recommend it unless you have run out of options... It hurt like &*^^. Plus due to the EDS my wound didn't heal and I ended up with meningitis and a SEVERE staph infection that has earned me 6 wks of Nafcillin through a PICC. On the plus side I can actually sit up, and my O2 sats have remained above 90% ... It had been over a year since I was able to sit up and get away without O2!) Drug wise: Neurontin (helps with seizures, tremors, AND pain... It's been a miracle drug!), domperidone (motilium), toporol xl, provigil, depo (for probable endometreosis), celebrex, stadol nasel spray (for migranes), various prn meds for sporadic sx.

Hey! I too currently have a staph infection, along with probable menegitis (cultures didn't grow, but the spinal tap showed a significant amount of white blood cells, and protein). I had chiari decompression on June 7, and I had to go to the ER last weds as I spiked a fever of 102.8 (I run around 96*-97*). They said pneumonia, and I told them to discharge me. Then on Thurs my neck and head hurt so bad I couldn't move (the wound was still open), so my pcp made us go to the hospital. They said menegitis and admitted me. Basically I am currently on two heavy duty antibiotics thru a PICC (vayncomycin, and fortez (sp?))... I haven't had any major side effects. The only thing that has reakky happened that is worth metioning is that the vanyc made me turn bright red, so I get benedryl every four hours (I'm also on a dilaudid PCA, and that makes me really itchy). The big thing for me is that I continued to spike high fevers until the neurosurgeons went in and explored my wound and scraped out all of the infection. I guess I just have a stubborn body! For me I've never really had any major issues with taking meds, for me the issue is I usually require a higher dose. I hope that you get over your staph infection soon! Alexa

I was on oxygen 24/7. We have a pulse oximeter so we could sit here and watch my levels go from 97%-61% (I'd faint and become unresponsive, and that was on 5lpmof oxygen). Interesting news here... I was diagnosed with Chiari back in Feb, and had the surgery on June 7. I woke up from surgery and I didn't need the oxygen! I only needed the O2 for a couple of days when we got back home. Surgery was in Winconsin and we live at nearly 8000 ft.

i've had one normal EEG, one inconclusive, and the five nighter showed seizure activity. I have been diagnossed with chiari and will have that decompressed by dr heffez on june 7. I know that chiari can cause abnormal EEGs, maybe that's something to look into? if you want Dr.. Heffez info you can pm me. It only takes a couple of weeks to see him. I think for the consult we waited two weeks? let me know

Just wanted to add my two cents... Last year I had some issues with my blood suger becoming high (I think the highest was like 260), then it would drop to normal in a matter of minutes leaving me feeling hypoglycemic. Now a days I have to be sure to eat every couple of hours or my blood sugar drops and I become very shakey. I've noticed some help in leveling out my levels with eating less carbs and more protien.

Hey~ Since becoming sick five years ago I have had an appendectomy, gallbladder removel, exploratory lap, knife-ectomy, three endoscopies (I'm a peds so I got general), and a nerve block. I am also going to have chiari decompression surgery like the first week of June. It is not just you. Alexa

I don't know how many of you know Joanie, she was a caregiver to a teen with POTS, Lindz. I am sorry to report, she has passed away. Joanie was a wonderful person, a good friend of mine, I will miss her dearly. This is the link to her obit if you are so inclined: http://www.legacy.com/chicagotribune/Obitu...rsonId=17649500 Peace to all. Angie

I know how you feel... I am a fellow chiarian and I am only 17. When I look back to even a year ago I was much more functional than I am now. I have a hard time sitting up let alone standing. I cannot be left home alone (last time I was left home alone I passed out with a paring kinfe in my hand, knife got lodged in my gut, long story short I ended up under 72 hr lockdown for a "suicide attempt"). We are currently waiting for a call back from my nsg in Milwaukee to see what he wants to do, decompress my head or wait until after I am done growing and address the cervical issues. Luckily for me, my parents still make me get out of the house and my friends arre great about calling. While I have no doubt in my mind that you are deconditioned (as am I and many other chronically ill people), I do not believe that deconditioning is to account for all of your symptoms. I was doing PT from April to November to no avail... I actually began to get significantly worse. I did my stuff in the pool, when I started in April I could walk in the water for like 15 mins, in November I couldn't even do one lap. Case in point while beign deconditioned can certainly make you feel worse, I do not believe that being out of shape can make you feel that bad. If I seem a little touchy about the subject it is because I am. Many of us were in good shape before getting to this point. I had to deal with my dad last summer telling me that if I worked hard enough in PT I wouldn't need the wheelchair and I would be about 80% better. I worked in PT to the point of passing out, and now the majority of the time I can't even make it to the one class at school I am supposed to be in (checked my attendence and I have mised about 58 class periods). Patricia- While I am very glad that PT has worked for your family, it is not the solution for every POTS patient. I am sorry if I have offended you but this is soemthing that I feel very strongly about... In no way am I saying that reconditioning will not help, I am just saying that it may not be the answer for some patients. Alexa

Hi I use oxygen as I am hypoxic, and whenever I go to the pulmonologist and "blow in the thing" I flunk. My pulmonolgist felt this could be due to the EDS

For me, I had already been admitted into the hospital by my GI due to extreme pain, so I got pain meds right afterwards. I was only 12 at the time so my mom was there with me to comfort me. It was really hard not being able to move, as with my attacks I would automatically curl up into a ball. I can't remember much other than it really hurt, as my gb didn't empty at all, so after they injected the stuff mine continued to get larger and larger. As far as the vomitting, it didn't make me puke but I do remember there being at least one tech maybe more. How long have you been having these suspected gb problems? It took six weeks for me to get a diagnosis, my mom would take me to the ER and they would tell her that I was constipated (a symptom of gb dysfunction). So I was on heavy pain meds, by the time I was diagnosed I ended with gastric ulcers from all of the pain meds. I also was unable to eat anything but soup as anything else would trigger an attack so that probably contributed to the ulcers.

Good luck with your Hida Scan!! You are so lucky to have a doctor willing to listen to you. I had a Hida scan and my gallbladder out five years ago. Not to scare you or anything, but for me the Hida Scan hurt like none other, because my gall bladder didn't empty pretty much at all. When mine was taken out it was filled with sludge, and my body had been trying to hide it by layering it with fat. I hope that you get some answers! Alexa

Hi Megan~ Sorry to hear that you had to put up with that bs. I don't go in the store anymore I sit in the car, but I have my own wheelchair. Before getting a wheelchair about two years ago I was at the store with my mom and little sister, I was in one of those carts and one of the staff members asked me why I was using it... It certainly didn't look like I had a broken leg. I told her the truth, and she seemed embarassed when I told her. Along the lines of rude people... I was at the museum last November viewing the Eygptian Exhibit with my family. I would be reading information, and people would actually push my wheelchair out of the way, I mean I know that I'm tall, but I'm not that tall. I confronted all of the people and all of them except one were remoursful. The one guy actually did it again after I called him out on it, needless to say I ran into him. That will teach him, I hope. Unfortunately we are going to have to deal with ignorant people for most of our lives. To qoute Debbie for all of you who are not members of DYNA... "Everyone has the right to be stupid, some just abuse the privilege." Alexa

i have tremors on my right side, i take neuronitn for seizures, and chronic pain, and what'd you know, it helped the tremors. as long as i keep taking my neuronitn i don't get them. As for the tilt on my last one two and a half years ago i was told by the tech that i didn't have POTS eventhough at onoe point my bp was 160 (can't remember the bottom number), and my hr was 210. I was told by my new GI that my case is atypical of his other dysaut. patients as my bp drops really low with tachy. and i get HYPERtensive and brachy. I was recently diagnosed with some structural issues, don't know if any of that helps ya. Alexa

I am hypoxic, and I have been able to associate the facial tingling with low O2 levels. I also noticed that somtimes I get that when I get a pressure headache flare up. I think that it may be nerves as I have had really bad tingling in my right leg since Weds after I fainted onto a car in a funny way, possibly messing up my neck further.

I have been sick since sixth grade, so that would five years. My mom and I asked for a MRI of my head a cervical spine after watching mystery diagnosis, as no one had ever thought to do any MRI. Mine showed a chiari, a cyst in my cerebellum, two bulging disks, and my spinal cord is rubbing agianst my vertebrae without any thing between the two. I just had an SSEP and BAERs on monday and Dr. Heffez is going to decide whether or not he wants to do a decompression. But I am pretty ill right now, unable to even read a bp, I can't stand without fainting, and require the use of oxygen. I am still in awe that my mom and I actually had to ask for a MRI in the past five years! I had an MRI of my spine between my shoulders to make sure that my scoliosis wasn't doing anything wierd, and another to make sure that I didn't have a dermatone that was causing my abdominal pain but not one of my head to check for a chiari or any other structural problems. It is crazy. If you feel that you need to ask for an MRI, ask for one... ecspecially if it will give you peace of mind. Alexa

They usually show the weeks mystery diagnosis and medical incredible again on Sunday at 4 and 5 (mountain time, so that is 6 and 7 eastern). I cannot remember which is which though. You can check discoveryhealth.com the name of that particular episode is blood and fire i think.

Hey~ I really LOVE the discovery health channel, and that episode of Mystery Diagnosis. If it were not for that show we would still think that I just had a particulary bad case of POTS, but I sw a neurosurgeon in Milwaukee who came highly recommended and was diagnosed with a "chiari" (for lack of a better term, I have a cyst that is pushing my cerebellum into my brainstem), and some cervical issues. I think that it is great that discovery health does Mystery Diagnosis, otherwise it never would've been brought to our attention. My mom had been told by someone that I had a typical case of POTS even though I pass out about everytime I stand up, have a hard time sitting up, and require the full time use of a wheelchiar, and oxygen. Thank you for bringing this to everyone's attention! Alexa

Hey- don't usually post but i felt the need to chime in on this one... i am 16, and started the lupron shots for six months last december and now i am on the depo every three months in order to prevent a period. like you mid cycle, and during menestration, for like ten days i was unable to do anything. iwasa in sooooo much pain, so my mom took me to her ob/gyn, twice during this pain. he did two ultrasounds, saw fluid on my left overy, where itwas really hurting. he came to the conclusion that i either had nerve pain aggravated by estrogen, or endometriosis (my mom had it). he didn't want to scope me due to my complicated history (at the time i had had three lap surgeries, appendix, gallbladder, and explore) he thought it best to just stop estrogen production, as that would help either senerio. haven't had a period yet, or any pain down there. however i have heard of ppl with dysaut. going on bc and having very bad side effects. there's my two cents. i say if it's something that you might be able to help, do it... we deal with enough problems already. alexa

Vanessa, Yeah, smoking is stupid, I used to smoke... You say you can't do the over the counter stuff? Can you use the nicotine gum? I used the nico gum, it was a script back then, I chewed a whole bunch of gum. I did quit smoking. Another thing that helped is I started this over a two week vacay to Las Vegas (of all places) and California. A change of venue helps, as you are not doing your usual routine; as mine would be get up out of bed in the morning have a diet coke and a smoke. A friend of mine recently quit, she "holed" herself up in her lake cabin for a week and went cold turkey. Let the past go and look forward to what you can do, QUIT. Angie

d4g7, Not knowing your age or sex, who knows why you are having "uncontrolled" outburst? I am the caretaker to a teen with POTS, honestly, there are days when I am more emotionally challenged than she, and I'm 43. I can remember a time in my life (about 20 yrs ago, I'm soooo old), when I would "go off" for no good reason, this was b/f the days of Prozac, mind you. Seems to me the Xanax should "mellow" your mood, (I take this on plane rides, I totally don't care where I'm going then). Looking back, it was definately "hormone induced" rage, ie, PMS... A

Dear Evie... I am from the "Great State of Texas", so fine, I now live in Colorado. Austin, yes as you well know from your reading is very hot and humid, not good for POTS pts. More than likely, there will be NO Dr.s' for POTS in Texas, this, for whatever reason, seems to be an "East Coast'" disease. I take my daughter to Ohio to see Dr. Grubb! Angie Oh, Austin, is not so much known for it's educational system, but for the PARTIES!!!

I gained liked 20 lbs. in a year after getting sick (but i grew 4 inches.). everyone tells me my weight is perfect... i weigh 150 lbs. , and am a little over 5'9". i wear a size 10 in misses, 9/11 in juniors. i actually perfer the way i look now than when i did a couple of years ago... i look like the 16 year old female that i am! however i must say that my health has declined significantly over the past year. when i saw dr. grubb a little over a year ago, i was able to go to ceder point (with my sit and walk.), now i can't get around without a wheelchair, and a lot of the time i require O2. so no... i cannot say that gaining weight helps to lessen pots symptoms.