ive been having heart problems recently, the beat is slow then speeds up, my blood pressure ends up being 204/110, went to hospital, was sent home,
now awaiting a 24hr heart moniter, i get so lightheaded, and weak, heavy, if i take a step of stand, or even roll over in bed, it becomes hard to breath,
I have had this alot, but had never had a BP, or heart listened to while it happened, i dont normally go to doc, but i felt so bad, i decided i should go, which i found interesting as it maked me wonder if this happens every time,
my question is....... Do you get heart and Blood pressure problems with chiari and if there is anything that can help this effect, of relieve it????????
at the moment i seem to have problems one after another. lol
I have read several articles regarding this. There hasn't really been enough research, from what I have read, for them to say they are linked but I can tell you what I know from basic functions. The brain stem (which is often crowded with Chiari) controls several major autonomic functions. Such things are hearts electrical activity, blood vessel size and blood pressure, bronchial diameter( and therefore air flow to the lungs), Digestion, and other body actions that we do without thinking. So in my opnion it would make sense that they could be linked but I am nit a doctor. I do know that no matter the cause of it, high blood pressure needs to be treated to prevent damage to the heart, kidneys etc. I would love to see so much more research (as I am sure all chiari patients and their families would) funded so we could have answers to things like these. I don't know if I have helped but good luck!
I sometimes get very short of breath, but I don't have asthma. I went to the doctors and my tests were all normal...sometimes I feel myheart beating, too much...it does scare me. Usually I notice it more when I get really thirsty.
I said this in another post but I'm not sure which - I get chest pains and hard to take a deep breath and I have had three ekgs' all normal. Clear lungs. I have read somewhere (don't quote me) that there were instances of people with chiari having a heart attack after turning their head too quickly. I will try to find it again, but I am one who reads until 3 am on this stuff and can't remember where I read it but just remember what I read LOL.
Hi...I also was having many of those same issues...I am also a mouth breather I have been my whole life...but the heart palps had increased and my drs did echo's and US's to be sure I didn't have a heart condition.
They did find that I had a thyroid issue, which once on meds the heart palps did stop.....there r other related conditions like EDS that can have an effect on the heart/BP and another one called P.O.T.S.
Talk with ur chiari specialist about this and be sure it is added to ur medical file.
I have a hard time taking a deep breath, frequently. I feel like I am suffocating and sometimes I get a stabbing feeling on my left side, under my breast and near my arm pit, that takes my breath away. When that happens I get the stabbing feeling when I try to breath, then it goes away. I have had two EKG's, all normal.
One other issue I forgot to mention is GERD and acid reflux which can cause many of the breathing issues that Kim u mention.....so do see a GI dr if hte symptoms continue, but the heart is ruled out as a reason.
Hi, I used to post here as GAREVALO. Selma I remember you i dont know if you remember me. I lost my password and id and what not. Anyway. I too have experienced all the symptoms you all mentioned. I was reading your preavious posts (neava) and its heartbreaking and i know how you feel because my docs look at me like i'm insane and i'm making it all up. my heart seems to beat alot more than it should..and i too have had ekg's and they're all normal. 2 wknds ago i was driving and had a palpitation and then i couldnt breath..i said to myself you're ok its an anxiety attack..but as i kept driving my head began to ache and my heart was racing faster than 170..had to be faster. I dont know how i pulled over but i got out of the car (my children had no idea what was going on) when ems gothere my vitals were normal but my heart rate was jumping from 80 to 135 w/o reason. I honestly feel there must be some relation to chiari. The paramedic told me that it might just be that as your brain stem controls your whole body. It scares me. I havent had my surgery yet..because i was too afraid but after all the symptoms i've been having i am truly considering it. Oh and neava, my primary doc put me on anxiety medication too. he said my heart racing was probably just that.
Thanks! I haven't been to a chiari specialist. I am in desperate need for one though. I last saw my neurosurgeon when i had found out i was pregnant (my son is now 4mths old) I don't know why but during my pregnancy my symptoms were not as bad. Where did you have your surgery? I have heard great things of dr. Oro in CO but I'm afraid i dont have the money to travel out of state. I guess i need to look into organizations that can help me. I am so desperate at this point! My surgeon told me it was up to me, how much i could take before i decided to get the surgery. He said he recommended it but he's not a specialist and I want a second opinion.
The health pages does have links to orgs that will fly u free of charge...and we do have our dr list here for u to research and see which ones work with ur insurance and how u may be able to arrange to get there.
I believe there is a dr in TX...not sure if they were a peds dr or not....but do research first....I am sure u will find the right dr for u.
A second opinion is good and should be from a chiari specialist....have u had the CINE MRI?Do u know if u have a CSF blockage, overcrowding, tethered cord, a syrinx? EDS?
http://www.medhelp.org/health_pages/list?cid=186 There r many pages with in the Health Pages with helpful info for chiarians.
thanks for comments, this is my third time typing this out, my arms are wobbly and a keep pressing wrong buttons, lol
But thank you,
im back to see surgeon next month, but im unsure i will want to have surgery as, im not sure it will relieve anything, it might come back, or cause more problems.
plus he might not want to operate, he decided not too lasttime before i had my cyst removed, or that could of been the nuero specialist, he hasnt been straight up with me.
OMG i just feel bad all over, i have trouble walking to the other end of my house and its only a 120 m2 size hme, my heart feels like its going to jump out of chest,
i can normally dance for hrs as i teach latin and ballroom dancing, this is not right,
SELMA..... do you remember telling me to get checked for a hiata herina???? well i had a camera down the throat a few weeks ago and it was clear, but i had a scan and it showed gallstones, so that explains my chest pain, so thanks for that i would have just left it, until an ambulance had to get me. lol
im waiting for a lapscopy, in the stomach to check women bits as im having more problems. I must say im tired and fed up, this is so frastrasting,
could be MS, it could be MOTONUERON DISEASE, CHIARI, HEART, does it ever stop,
sorry guys, im so tired with it all and tones of tests which are negative, my doc did say ellimate what it isnt,and have some amo if the specialists to re check brain,
i took lemon juice and olive oil for 7days 15mls of each morning and night, that was a month ago, i havent had any problems since so i think i passed, hard to tell as passed through B/M,
but no problems since so fingers cross
Just read through the posts...I wanted to add that b4 I was dx, I had instances of my heart absolutely racing, pains in the chest etc. By the time I got into my dr it would subside so I gave up even trying... In my 3rd pregnancy I remember taking my pulse and it was something like 120 and it was a resting rate. I really know how you feel when you described the heart jumping out of your chest feeling... I couldn't walk from one room to the other w/o being out of breath. I would actually avoid activity so that I wouldn't start it up again when I finally felt like I could breathe. This would go on and off but when it happened it could be up to 5 days and I had trouble sleeping at night b/c my heart pounding would actually wake me up. I would feel like I couldn't breathe enough to keep up with my heart (if that makes sense). I had a stress test done at a period when I wasn't having the issues and it came out fine.
Now post op, I haven't had any issues to that degree, I actually didn't even think about it now until I read your post. Also, after surgery I found out that I had Hashimotos (auto immune thyroid disease) and sometimes you run from hypo to hyper (which can cause heart racing, breathlessness ect.), so you may want to get that checked out. Or you could be hyper (Grave's disease) in which you most definitely would have those kind of issues. So if you haven't had your thyroid tested, I would do so. I am now getting the Hashi's treated properly so I am wondering if that has helped it for me.
I hope it gets figured out b/c that is a really horrible feeling!
OMG! i completely and fully understand what you are saying. It happens to me so much. It makes pefect sense. I am in awe!!!Everytime i got to the doc it subsides and they think i had a panic attack. I cant sleep either at times because my heart is pounding. and I too stay away from activity afraid that my heart wont slow down or that I'll pass out from how fast its beating. I'm going back to the cardiologist, but I have a feeling everything's going to look good. i had to go through a chemical stress test and it was horrible. A catscan worth 10 xrays and an echo and some other tests. One thing that I think is ODD is that i too was diagnosed with Hashimotos thyroiditis but w/normal function. My thyroid is enlarged but my blood levels look ok except for the antibodies. My specialist has not given me treatment options, which i think is weird. I would think they have a way to treat it. I wonder if all these things are associated with Chiari. Thanks for your post!
I read some news articles on TCI and I had to question wether or not I should try to get myself up there. But news articles are news articles. Anyway I dont know what kind of MRI i had but it did show the malformation with no sign of syrinx withing the portion that was visible. I'm getting another MRI of my spine to determine if I have a syrinx there. I dont know about any of the other things you mentioned. I am trying to get that second opinion and I thank you cause now i know what to ask. I am so glad that I came back to the community. I need as much support as I can get. My family thinks I'm over reacting and that is all in my head...but it literally is lol but they dont see it that way. ..Not even after i showed them my MRI.
I know all that happened at TCI while I was going for my eval and surgery and I am very happy with the drs and the care I received....U also need to look at the rag that printed all of that too !
Plus, most drs do have some patients that r not happy with the results of surgery, but this rag went to the patient and instigated the whole thing than others jumped on and it was blown out of proportion if u ask me.And the issues were not on surgery, but a scheduling issues which was more the Hospital than the TCI drs!
There r several other drs u may be comfortable with like Dr H in WI....??or Dr Oro...?
Well remember there r drs out there that do not understand chiari so we can not expect our families to ....they will have to learn along with us...so invite them to come on here : )
Yea, I know what you're saying. I found it hard to believe that the doctors with such reputation would do something like that. like I said its the paper . you NEVER know. Did the surgery eliviate your symptoms? I know there are many risks, and I have yet to bump into a comment from someone with a bad outcome. But I'm so nervous about getting it done although I know at this point I believe i really need it. I have my children who need me and I might have someone to help me care for them but I'm afraid something will go wrong.
I still have issues, which many of us will, but glad I had it done...so far no syrinx that is a big plus in having it done and I do not have the same symptoms or the degree of them.
I was told I need surgery for tethered cord and a bulging disk causing a CSF disruption...so I still have things going on.
I have not had a drop attack since surgery so there is another plus.....there is no cure, we can get worse after surgery or develop other related issues like pusedotumor cerebri....(IIH)
so finding a dr u r comfortable with is a must and the first thing, then trust what he is advising u to do.
I look at it this way, I did not expect the surgery to eliminate or lessen all of my symptoms bcuz I knew it took 50 yrs to get them all and it can take up wards of 2 yrs to heal ( I heal slowly so could be longer)...I am patient : ) And very pleased with my outcome.
You're right. I can't expect for it to fix ALL my issues. But I know it can help elivate them being that all goes well. I will push to find the right surgeon/specialist. I wish there would be enough research so that people wont get misdiagnosed or left out on a limb waiting for a diagnosis. Docs make you feel like you really need the happy pill!
Thanks =-) I leave work and don't get online at home..since I have 2 little ones that keep me busy busy. The one thing you all can help me with is finding a dr. in TX. I log on here at work (which i really shouldnt) but its the only time in between calls that i can check the forum and comments. or do research. Thanks for all your help!
i think in away we need to push above our fears and try to atleast help ourselfs, if surgery helps in alittle way, then maybe its worth it,
Somes we get thrown all these curve balls and wonder why its all happening to us, but at the end of the day we need to make choices, maybe to help, if if we dont try then how do we know if it is going to work,
Im in New Zealand, and i think there is about 10 people who have this problem, we have no support systems, no help no place to go, its lonely here, i was thinking of going over seas to see if i can find better drs who know more about it,
im going to try another specialist if the surgeons dont look at it again
last time i saw them they told i had early stages of MS and go back to nueologist, well then he told me theres nothing wrong, so on antidepressants and get pain killers, (but if theres anymore problems sent her back to me) lol what a s#$t head as far as i was concerned, so i have to try find someone else,
as for my heart that wasnt taken seriously as far as the hospital was concerned it was properly MS causing that,
lol the last time i called and ambulance they told me i has anxity, and see my GP, he thought i had a stoke, but when i went to hospital they told me miarigrane, it took me a yr to feel a little normal, so our heath system *****, but i have to laugh, or i would go crazy.
i have 3 kids and a home buisness im trying to get off the ground, so i have to keep trying to find an answer, and keep my head up. lolol that just makes me laugh sometimes, some days its impossible to,
but everyone here knows that, we make the best out of the situation, it hasnt killed us ....yet.
Thanks for the comment. You're right. You're right! We have to make the best of the situation and keep pushing. In a way you're in a worse situation being that your health system isnt all that great. I can imagine how you feel. Keep pressing on until you breakthrough. That's the only way us chiarians will make it!
if any of my friends or family tell me that they are sore or tired, i laugh, and think to myself you have no idea, lol
if only thry could walk in my shoes for a day,then they will truely understand, but the problem you cant see it, so people say you look fine, lol
i think i was trying to convience myself that we should be like that, but hay its really hard to,
we have a public health system here, its a small fortune to have medical insurance, so to go public means its free, but you have to wait awhile normally 3-6months just to see specialist, then months later just for tests, so too bad if you have stage 3 cancer or something.
but i press on because you have to, i modivate alot of prople to get and move, so i have to too
Gmaldonado...I know it is really the worst feeling ever....I had been told since I was 17 (now 33) that what I was experiencing was anxiety attacks...but I never really understood that b/c it would come on while I was lying on the couch watching TV...really stressfull..not..
Now I realize maybe it was more the head position that I was lying it...you know my head up on the arm of the couch...that was causing a problem. The attacks started coming on worse and worse but my GP kept saying that it was stress and panic attacks and that I should keep up my exercise routine. So I did..and that's what did me in in the end.
As for Hashimotos...if you have the antibodies and the enlargement..you can bet that your functions won't stay normal for long...and you should be checked regularly!! The way Hashi's works is that the AB will stop attacking for a period of time and your thyroid can sputter to life and if you get a blood test at that time...it can appear normal!! For me, I was put on synthroid in my 3rd preg b/c my TSH was high...after I had the baby I went off it b/c I was feeling "hyper" and my blood test were done and my TSH was normal. Then a year later I wasn't feeling well so it was tested again and it was way up there!! Also they should be doing more than just your TSH...did they test your free T3 and T4 levels? Some people have problems with converting the T3 to T4 and that can't be detected with just a TSH test. I firmly believe that Hashi's has something to do with this heart racing/pounding issue!!
neava- Just wanted to let you know that I totally relate...here in Canada we have a publically funded health care too...and it definitely is a good/bad situation...I ALWAYS have to wait months for a specialist appt...but am grateful that for the most part I don't have to pay out of pocket (I did for my initial MRI b/c it was either that or wait 9months when you can barely walk!)
We also had just started a small business only about a year b4 I started to get sick...and it has been a really tough time!! Plus raising 3 boys...
BTW- I love what you said about friends or family feeling sore or tired...I feel that way inside all the time...I feel like screaming when my DH comes home after work and complains he's tired and then puts his feet up for two hours while I run around making dinner and doing a million other things at the same time....all while trying to ignore the pain that is overtaking my body...you just wish sometimes for just one second they could feel your pain so they would understand!!!! LOL I guess that just brought out what has been angering me for the last few days!!
Thanks for the info. I think i need to switch my thyroid specialist. they have to give me SOMETHING! the only thing he had given me was metformin to treat PCOS -due to hormone levels not ovarian cysts. but i never took it because i was to scared of the side effects. my testosterone level last i checked about 2yrs ago wen from 37 to 52 in less than 4 mths. thats a whole other issue though lol. thanks for the post, i'll definitely look into another specialist or make sure theyre not only testing tsh.
Metformin?? That is what my dad takes for type 2 diabetes...weird, I guess it has more than one use.
What I find is that even ENDO's do not seem very concerned about your thyroid function but there is evidence that it can affect you well being immensely...I don't get it but I am in the same boat as you...fighting to get the right tests done.
Yes, I have been having heart issues that have gotten worse in the last year. I have mitral valve prolapse (which is pretty common) and always blamed my symptoms on this. Now I have found more and more people have heart palps and other issues that have CM. I feel my heart beating really fast and also really slow at times and also my blood pressure has been crazy. I was always low until November. I did where the monitor last year for 24 hours because of breathing issues in bed and feeling dizzy when I got up too fast but at the time did not know I had CM.
I am actually waiting for my cardiologist to write my NS a letter clearing me for surgery on the 30th.
Good luck with everything.
Kim in NH
I have heart issues as well....the mitral and tricubsib (sp) valve flow both ways. They say they should only flow one way but in my case they go both ways. The drs say it's like this due to the fact my brain stem is compressed and that controls the heart. With the pressure off my brainstem they are thinking that it will go back to normal. The only thing I have been told to watch of mine is that certain meds will harden and stop blood flow. So the one thing that works for my migraines I can't take due to my heart. Go figure. Has anyone else had this and have it go back to normal once surgery was complete?
Yep, metformin is has multi-uses apparently. it is tough indeed. Just wish they would listen to us! I keep telling myself that one day doctors and other people who think we're insane will understand and feel like idiots when they realize we weren't lying.
Selma, do you know when that's happening? I think it would be a good idea to ask questions.
Neava and Sheila: they told me i have a leaky valve..which is very common and not life threatening..dont know the medical term. My heart does race and beats weird at times. They're inserting a chip (lubricor or something like that) instead of the halter monitor at least for 30 or 60 days to catch anything the doctors are missing. It's funny because the cardiologist's PA made me feel like she understood me better than the NL i had seen. She knows about the Chiari and she's said "well it only makes sense that your body is going haywire if your brainstem has pressure, your brain controls everything else" They're also gona do another Echo. Neava, have you been tested for sleep apnea??? It just came to my head that my cardiologist told me once that when you have sleep apnea it might cause your heart rate to go out of whack bc your heart is overworking when you stop breathing...or something like that. Ne way i thought i'd ask if you've checked for that.
Ohh!!!! I found a specialist 2 hrs away to the west of me in Austin..BUT he's a pediatric surgeon w/20yrs experience..i'm gona call and find out if he sees adults. I believe there might be another chiari specialist is houston which is 2hrs to the east of me..i'm excited! I scheduled an appt w/another NS either way for a 2nd opinion..for the meantime.
I have CM1. TIA in 2008 (one dx, one possible), mitral valve regurgitation. My BP is always very high. It was 160 over 100 at my dr on Thursday. I take blood pressure medicine daily. It is interesting that my BP was 80 over 60 prior to 2008. Funny!
no i havent been tested for sleep apnea,
i also gag in my sleep at times, where i wake up chocking, and dream that im swollowing unusual items, like a packet of straws, its such a pain as i wake knowing that i can not swollow as the straws will go down, i end up panicing and swollowing i dream the straws going down my throat, im aware that this is happening but cant stop it, i then realise that it was a dream, its so scarey, im use to it now, i find it funny, and interesting the types of stuff i dream, i havent done this for awhile, lol my friend laugh at me, i dont blame them, every week it was a different item.
i find that my body goes down about every 3-4wks and lasts for a week, when this happens my heart plays up, im lightheaded, i have a mild headache, very weak where i cant walk, i get out of breath just standing, i get so exhusted, my muscles ache and hurt even when lying down, my eyes go out of focus, i feel like im buzzing, i feel like im dying and body shutting down, blood pressure up high (i just found out), think thats my pattern, its unusual, i then start coming right and getting stronger, day by day life seems i bit beta, i get tired alot, and mild symtoms that i just described, but it easier,
well i think thats the pattern anyway, its been like that for the last couple of months, no that ive mentioned it, it will problem change,
i went like that over a week ago, well i had a wedding to setup and spent 3days on it, i have found this wedding very hard to do, i feel its going to take a fews days to get ova it,
sometimes i can go and go with no problems, i was glad this morning when i packed up the last of the reception, i woke with a horrible heartache this morning, to the point i had to stay in bed until painkillers kicked in.
i was wondering if anyone else has patterns like this or is it all the time,
YES!! I think we all do...when my symptoms were really starting to surface..they totally cycled like that..I would have a really bad week and then a good one. That was why it was such a problem to get the DR to take notice..I would have a bad week so I'd make an appt and then a lot of the time it wasn't nearly as bad when I finally got to see her.
The choking dreams...that screams that you are having reflux!!! I had those too...you are most likely having the stomach acid back up into your throat while you are sleeping and it burns making you dream that you are swallowing something weird like straws. You feel like you can't breathe or swallow because your trachea is closing off to prevent it going into your lungs. The best thing if you are awake enough..is to sit back up and gravity will help force it down. I have woken up thinking I am swallowing razor blades, acid...one time it actually came up through my nose!!
Also, if you are having bad heartaches...and you have had your heart checked out and it's okay...it could be really bad GERD too...it causes me exceptional pain when it acts up. One time, I actually went to the ER b/c I thought I was having a heart attack it was so painful. The only thing that cured that attack was 3 days in bed and T3's.
I'm sorry I can't remember...have you had any stomach treatments? Something to neutralize the acid? I would tell your DR about the feelings you get when sleeping. If it is happening enough I would get a prescrip med that you could take b4 bed. I had one for awhile and it really helped..I think it was called Ranitidine.
My theory is that there is a nerve (vagus nerve) that is a cranial nerve that runs all the way down through to your digestion etc...I think if your gag reflex is impaired that it could also impair the LES (sphincter at the top of the stomach) and that is what causes the acid to be able to come up your throat.
The rest you describe is very familiar to me too...a lot of the buzzing and exhaustion happens to me after I overdo muscles that are weak to begin with...then they buzz like crazy. I still wonder if you are not suffering from some type of hyperthyroid..that would push your BP up too.
Dreams are your sub-concious mind talking to your consious mind. it's like, when you are asleep, your sub-consious mind knows something is wrong, but your consious mind is asleep, so it has to do something to make your consious mind take notice. So, since it's something weird like straws, it scares you because that is the only way you will wake up right away.
lol i had to laugh at the razor blades, my worse one is a pile spockets.
Ive had a camera down the throat and everything was good, had a scan it showed Gallstones, that all my stomach tests i have had,
my stomach specialist thinks its just reflux, i should go back to him, and talk about other things that are happening, i forgot to say about the chocking when i saw him last,
your theory on vagus nerve is what my doc thinks the same is happening, He also thinks that its in the brain and not with the body because of cord damage, i also have pain while eating certain foods and food get stuck, where i cant eat anymore,
Sounds like your dr is on the right track..of course, whatever damage that is done to brain or cord...causes effects on the body, so it's a little of both. It's very hard when you first realize how much of your body can be affected from that one thing.
It's a downer but unfortunately just another gift from Chiari..
I'm sure you've been told this, but try to limit acidic or spicy food especially b4 bedtime. I would go back to your stomach dr and ask about a nighttime prescription.
Yes, i have good days and bad ones...more like Carolyn..one good week and then another bad week. As far as the dreams go I agree with Carolyn about GERD. I have GERD and i get heartaches REALLY bad if i dont take my meds for it. With sleep apnea though I would get up gasping for air a few times a night. Once it was so bad that it took a few minutes for me to breathe normal again. I seriously thought i was dying cause my heart was beating real fast and i couldnt breathe. My cpap resolved those issues. I just started using it again and i've been feeling more rested and havent had those episodes in a while.
To all: do you know if any type of therapy is an option? come to find out my mom finally believed me since i've been talking about surgery and she told me my aunt has something wrong in her head and they told her she needed surgery. she doesnt know if its chiari but she did tell me that she's been going to therapy and its helped her out a whole lot.
HI...in response to ur ? on therapy...I would think it all depends on if u have a CSF blockage or overcrowding...if so a chiari dr would suggest surgery again looking at symptoms as well.
If u were not a surgical candidate, than possibly PM or some form of therapy may help.
Since we r all diff and tolerate pain on varying levels it is hard to say what may or may not help, but if a dr said u r one to monitor at this time, I would ask what if ne type of therapy may be suggested and at least tried.
ive just been reading all my MRIs again, can anyone explain what
LARGE FORAMEN MAGNUM PRESENT.
and also does anyone else have any lesions on brain?
could it mean that there is still a possibitly that i also have MS,
it was discussed, by surgeon and specialist, but told to enjoy live and see what happens,
that was my last MRI done 19 november 08,
i think its time for another one, ive had no followup since,
its also i have scattered high signal foci, one possibility would include a demyelinating pathology, but not progressive.
ummmm interesting, could i have both, MS and CHIARI???
The foramen magnum is the opening at the bottom of you skull where the spinal cord comes through...if it says that your is large I am thinking that there it means that there is NO overcrowding. A lot of people with Chiari will have a stenoic foramen magnum (which means narrowed) due to the tonsils crowding out the space.
However, it is really hard to know what they mean when they word these things. I think that you should have another MRI too..that's coming up to 2 years ago.
Thanks Selma! I guess we'll look into all that once I have my MRI re-dos. I have a lot of questions for my surgeon. And I'm working on getting in touch with the office of a surgeon who I believe is a chiari specialist in houston. Good thing is that I have family in Houston so it wouldnt be a problem for me to drive there it's only 2-3 hrs away.
Glad to hear u found a dr in an area u can go without too much cost for u...lodging wise. My DD is in NY so it is one of the reasons we went there as opposed to CO...lol...once u find a dr u r comfortable with that u know is a true chiari dr...then u r halfway to getting the proper treatment u need.
I gave up reading what everyone else wrote, because there is so much, lol so if this is just a bunch of repeat, I apologize.
I'm 3 months post op, and I have something called AFIB, which is where my heart skips random beats, and it'll slow down and speed up. I got really dizzy, chest pain, lose of breath. I went to the ER 3 times for it, and they took xrays and other tests. I went on a 24hr monitor and then a 30day monitor. (NOT FUN BTW). And all they could find wrong was the AFIB. I still have this after surgery, so I do not know if this is related or not, but I do have heart issues.
lol call me stupid but what is "DD"? sorry brain fart...I have yet to contact the office in Houston. I got his name from a list that was posted under "chiari specialists" . I will keep you all posted. I've been talking to my mom about the surgery and now she's taking me serious...but she begged me to talk to my aunt about the therapy. well i spoke to my aunt today and she told me the dr told her something about the vertabres in her head...and she told me that they cant really tell her what is causing all the problems. since it can run in family i told her it might be chiari. We have the same symptoms. Maybe I'll be some help to her, I'm excited! We're not that close but she perfectly understood me she told me if the surgery is necessary then lets do it...when everyoneelse says i'm insane.
my mother has mild things that i get, but she has never been checked,
Her idea is if they know for sure what is happening to me, then thats what she has. lol
if i speak to her about how bad i am or how hard it is with normal life, she says "get over it, it hasnt killed you, so dont worry about things, and get on with it,
i dont have a supportive family, when i asked for help a few months ago, and that i couldnt cope, my dad popped over and told me, that i was killing mum and that its all my fault,
i said to him that for once i would like some support from them, he nearly hit me, and told me that i was married and im not their problem anymore, and i was very ungratetful and that mum was there for the birth of my first child, (which was 10 yrs ago), and i did all that work. lol
any if any of your family understands and is supportive, you are very lucky, it makes it alittle easier, so run with it and listen to them.
Hi...too many have had the same issue with no support from their family...the problem is, guilt...why didn't they do something sooner...were they a bad parent to miss it...or what did they do that u were born that way....
It is not u or ur fault...they just can't deal with the guilt.
But, u have us...we understand and r willing to listen : )
really? thats what it means? lol Once I call the office and get more info I'll let you all know what happens from there. Yea its not that it's a good thing that someone else in the family would be dealing w/chiari but you're right things happen for a reason. Perhaps we'll be closer even though she's 5hrs away. I'm sure we I can help her out . Here in San Antonio there arent any specialists and much less in brownsville (tip of texas, border city to mexico) so I'm sure I might have more info to give her.
Neava: I'm sorry about all that but like Selma said you have us and we understand and are willing to listen =-)
I was down to San Antonio a few yrs ago....and Austin....and I loved the huge mall btwn the 2....can't remember the name of it tho....I enjoyed driving in TX...very flat and roads were easy to navigate : )
0o0o0o0o ok it makes more sense..lol I thought it was a medical term i was missing lol told you brain fart! I love it here.semi large citi w/o the "citi" feel like houston or dallas. Oh yea I havent been to it but it's an outlet mall in San Marcos its awesome. There is one in Edinburg, TX down south to I've been to that one and it was great. Lol yea flat roads here in San antonio though you'll run into a few hills.
yup HUGE. 0o0o I like the riverwalk but Ive lived here more than 4yrs and have been there twice in the timeframe lol well now that I know your abbreveviations I'm not lost and I ahve no issue with them =-D ...wheres the list??
I had an MRI of my brain today (thought it would be of my spine...guess not) ? 1. will a plain MRI of the brain show CSF blockage? Syrinx? ( in the portion of the spine viewable?) 2. Does Iodine make you feel lightheaded?..I havent had an episode of my heart racing for more than 5mins...and today it seemed after i had the MRI I had to go straight home instead of work and lay down for about 2hrs cause my heart was beating faster than usual.I'm not sure if it was my plain ole chiari-ness or the iodine...
thanks selma and gmaldonado for your support, i love coming on here, and knowing that im not the only one who has problems or feels that way, even though i would perfer if none of us were here at all,
with my family everything gets put under the rug, when i was a kid there were i few things that i did, which now dont make since and why my parents never took me to get checked, but oh well, i guess they didnt think, the good thing that has come out of my family showing their true colours is that, i now know how not to treat my own kids, so i must thank them for that, no seriously, if in anyway it helps me be a better parent, than yeh i thank them,, still ***** for me lol
when i had an MRI and they wanted to check my fluid i had a moniter put on my finger, (i dont know how that checks it) but thats what they told me. seems dumb now that i think of it, sorry you werent feeling very well after MRI, i hope you are doing beta now.
i went away last night without the children, it was just me and husbsnd it was great, but today i have muscule weakness, i hate that when you go away or do anything you pay for it later, but atleast i am relaxed, just picked the kids up, that was sad, i dont get breaks very often maybe once a year, but its good to be home, now i can get over the travel.
thanks again everyone for your support, you are my second family
HI...oh I totally get the family thing...I had a drop attack in front of my mom, I wasn't taken to the drs for it either....but when I went myself, they gave me prozac....so, we thinks drs give us the run around now...
LOL...I always said my were like ostrich's....lol... buried their heads in the sand...so really similar....
When u had ur CINE MRI the clip is added during the second half of the testing and is used to monitor ur BP...if the CSF moves in rhythm with ur BP (blood Pressure) then u most likely have a blockage.
You're welcome! All I've ever had is a plain MRI. My next NS visit I'm asking him for more. Last night i was at an aunt's house and i mentioned that if i dont get the help i need from a specialist here i have a friend in chicago who says i can stay w/her and she can help me out. My aunt said " AND YOU'RE GOING TO CHICAGO?!! JAJAJAJAJA" yea that went great lol. I'm used to it. Thanks for giving us a little more info Selma =-)
lol ok you dont want to spend the night in jail so calm down lol but i do know what you're saying..i dont want to leave until he tells me he's gona run more in depth tests. and ama go back to my endocronologist (mispelled) for hashimotos thryoiditis..i'm convinced they have to treat it!!
Well he told me i had a goiter and my thyroid is enlarged BUT my TSH, Free t3 and t4 are ok...the last they checked. My friend recently went through thyroid cancer. they removed her thyroid. I'm not saying that I might have that but at one point it was suspected bc i had a mass. It went away and so they didnt biopsy my thyroid. My friend tells me that she felt a lot of the symptoms i'm feeling w/the exception that her neck was very swollen. So i'm going to keep pushing for that too. I just went to the specialist 3wks ago and they still havent called me w/results.
But when you get any blood tests done, make sure you request a copy of the results. It is a fairly simple process in Canada...I'm sure it is easy to do in the states too. I found out I had Hashi's from the results I received way ahead of when my GP finally decided to contact me. I get ALL my results now from everything.
My dad has the same thing...a large goiter but all his thyroid tests came out fine. He recently had bladder cancer and so they did do a FNA but it came out cancer free. I still don't buy it though...I think they just tested his TSH at a time where his thyroid was functioning ok. With Hashi's it will let up and your thyroid does sputter to life here and there, it happened that way with me for awhile b4 it finally went downhill all together. Did they test for TPO antibodies?
I actually have a followup US tomorrow on my thyroid to see if the nodules have got any bigger..
neava: yes i'll have to follow up myself. Idk whats the deal w/these doctors!!
Cmoeller: I'm going to call and try to get them. You see I don't get that, the way it's up and down. I know it can be hypo or hyper back and forth. My doc told me it can go hypo a few months then hyper a few mths. I wonder does it happen from wk to wk? I just find it odd that supposedly my blood work is always "ok:" I really think that my heart racing and my hair being so thin when it was super thick (and i had a lot) is caused by my thyroid. They did test the antibodies. Idk what they look like now but the last test they were high.
Well if they were high...you can bet that it is affecting your thyroid. You said that they did free T3, T4 testing too? Sometimes the TSH levels are not accurate.
I think the hypo/hyper swing just varies person to person. I would get hyper for several days and then get really tired and lethargic after that for several days. The antibodies attack in waves and that affects how your thyroid functions. My AB were extremely high too and my GP and ENDO said it is just matter of time until I lose all Thyroid function so they have to keep following it. I went from 50mg to 75mg (of synthroid) which is holding me now at 1.2 but they expect that eventually I will be on about 125mg.
Maybe it hasn't succeed in damaging your thyroid yet? But they will need to do a follow up test every 6months b/c it will at some point.
I have half the hair I used to...it won't grow past my shoulders anymore when it used to go down my back. I clog the shower drain on a regular basis...even with my TSH where it is now...it still comes out in handfuls.
You see that makes more sense. I really need to get a new ENDO. Mine told me to go back in 3mos then after that he didnt give me a follow up until i asked for one this yr. I think it just might not be damaging my thyroid to that extent. My hair falls off in handfuls too my tub gets clogged now =-( I noticed it happening more after i had my children especially right after childbirth (the months following) I noticed it doesnt grow as fast or as much as before either so i keep it at shoulder length...IF i dont manage to chop it off for summer =-D
Got my results! TSH=3.679, FT4=1.1, Antibodies= TG20.00 TPO 10.00 . No FT3 was done IDK why...but they told me the ENDO is not sure if I have PCOS and they said my vitamin D was way too low so they're giving me a prescription for 5k units =-\ don't we get vitamin D from the sun?? ( among other things)..would explain why i'm so pale
Well I'll give you what I know...mainly advice from a friend of mine...
Your TSH could still be lower and should be...I didn't feel better and notice the weight start coming off until it was at 1.2 and my ENDO said it definitely had to be below 2.5..so yours is still too high.
Where there reference levels listed on your report? There is different comparisons depending on the lab.
For instance my reference level was 600 so very high!!
You want your T4in the top 3/4 of the range and your T3 close to the top (but not over) this is according to my "thyroid expert"
They should have done your free T3 b/c for some ppl the problem is converting T4(the thyroid hormone) into T3(which is actually used in the cells)..so they should have made sure there wasn't an issue there.
For Vit D...we do supply our own from the sun ..but if yours is really low it could also be that you are not absorbing the Vit D properly in your body. This is cause for concern b/c it can signal other issues such as metabolic disorders or digestive disease...so the SHOULD be checking it out. Plus, Vit D has been proven to be very important for nerve impulses...so you need to make sure you have a sufficient amount!!
As why they don't just do the right tests w/o us asking...I would give a million $ for the answer to that one!!! I keep hitting that wall over and over again..
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