Aa
It all makes sense now....
Hi, new to the forums and very grateful they exist :)
So I had headaches for many years and kinda just got so used to them that they almost didn't faze me. I pop Ibuprofen like its skittles and call it a day. A few months ago the headaches changed... I started to lose vision when they would come. I don't even know if saying I lost vision is accurate but my eyes actually hurt. So I went to my trusty PCP who has been treating all my myriad of illnesses for years and she said that because of the the change I needed to see an ophthalmologist and get an MRI. I went to the ophthalmologist first, and it was literally my first visit to an eye doctor ever as eyes freak me out. He did his little exam then dilated my eyes then put two more additional drops in my eyes and left. He rechecked me when I got back and told me I had a muscle spasming in my eye and that he had paralyzed (for 6-12 hours) that muscle which was why I couldn't read anything. This was surely the cause of my headaches. I had actually cancelled the mri at that point but because my c-spine was still having pain issues I rescheduled it and I am glad I did. Chiari Malformation type 1... doc called me personally and said she had never seen it and that she was getting her info from the Mayo website. Off to see a NS. The guy I saw was a consulting NS who could no longer operate but who sort of weeds out operable cases. I wasn't too thrilled with him at first... he said that since I have had migraines for 17 years that they were now not likely Chiari. I said these weren't so much migraines as headaches and that they were daily and not spaced out like my migraines were. He said I had no nystagmus so was likely not having symptoms but to be sure sent me for a CSF flow study. On my second appointment with him he said I had a very diminished almost non existent posterior flow of csf and that I need to go see another NS to discuss surgery and he even paid more attention to the symptoms I tried to tell him about on my first visit. Luckily I am a nurse at a major accredited hospital in a big city so had a good post op RN friend who recommended a NS who she highly respected and as it happens also had done a PFD surgery on her cousin so I feel pretty confident in her skills.
So that is the history... after doing a lot of research here is why it all makes sense now...
I was ridiculously clumsy as a child. Constantly in the ER, constantly being pulled aside from my parents to be asked if I was abused. My mother would always just calmly tell the doctor "Give her a few minutes.. I guarantee she runs into a wall or falls in the next 5 minutes." And she was almost always right. I have had 2 fractured skulls and at minimum 9 concussions (and my NS said that I was born with Chiari and it wasn't caused by all those head traumas.. mom doesn't believe him though). Now that I know what is wrong I am conscious of it I guess you would say. Sleeping is a challenge... I just can't get my neck to be comfortable. Looking back I have been that way for many years. My husband teases me that it always takes me 5 minutes to get comfortable. I feel like I was probably compensating back then and didn't even realize it. I attributed headaches to the head injuries, numbness and tingling in my hands to basic back pain and stress from work, and neck pain to the same. Now that I know whats wrong, so many other things just clicked into place for me. Crazy huh?
So now I am confused as to why all of my symptoms have been so much worse for the last 3 months. I was dx about 3 weeks ago and I would say that starting about 3 months ago I started into this steady decline... I have had maybe 2 days in that time frame where I have not had a headache. and this week I would say that they have been all day every day. My neck is killing me and is very swollen.. it has felt that way off and on for over a year but over the last few months has been more constant and this week has been unbearable. I am writing this at 5:45 in the morning because I just cannot get comfortable. I am even more concerned about the amount of ibuprofen I am taking. This has been a concern for YEARS but after cycling through numerous drugs (midodrine, baclofen, indomethacin, neurontin, topamax etc) to help the headaches it seems to work best, and that even seems to be failing me now. I have cried more in the last 2 weeks than in the last 2 years.. mostly because brain surgery is freaking me out but I AM NOT A CRIER.. and I hate it. Then I get a headache from it just to add insult to injury. ANd I don't know if it is related or not.. but my stomach has been upset for about 2 months off and on and since its new and has been going on while everything else has been falling apart I am wondering if that is connected too.
Sigh....
I am going to go troll these forums some more, look into that questions for the NS thread and try to see if anyone has ideas on how to get some freakin sleep :)
So I had headaches for many years and kinda just got so used to them that they almost didn't faze me. I pop Ibuprofen like its skittles and call it a day. A few months ago the headaches changed... I started to lose vision when they would come. I don't even know if saying I lost vision is accurate but my eyes actually hurt. So I went to my trusty PCP who has been treating all my myriad of illnesses for years and she said that because of the the change I needed to see an ophthalmologist and get an MRI. I went to the ophthalmologist first, and it was literally my first visit to an eye doctor ever as eyes freak me out. He did his little exam then dilated my eyes then put two more additional drops in my eyes and left. He rechecked me when I got back and told me I had a muscle spasming in my eye and that he had paralyzed (for 6-12 hours) that muscle which was why I couldn't read anything. This was surely the cause of my headaches. I had actually cancelled the mri at that point but because my c-spine was still having pain issues I rescheduled it and I am glad I did. Chiari Malformation type 1... doc called me personally and said she had never seen it and that she was getting her info from the Mayo website. Off to see a NS. The guy I saw was a consulting NS who could no longer operate but who sort of weeds out operable cases. I wasn't too thrilled with him at first... he said that since I have had migraines for 17 years that they were now not likely Chiari. I said these weren't so much migraines as headaches and that they were daily and not spaced out like my migraines were. He said I had no nystagmus so was likely not having symptoms but to be sure sent me for a CSF flow study. On my second appointment with him he said I had a very diminished almost non existent posterior flow of csf and that I need to go see another NS to discuss surgery and he even paid more attention to the symptoms I tried to tell him about on my first visit. Luckily I am a nurse at a major accredited hospital in a big city so had a good post op RN friend who recommended a NS who she highly respected and as it happens also had done a PFD surgery on her cousin so I feel pretty confident in her skills.
So that is the history... after doing a lot of research here is why it all makes sense now...
I was ridiculously clumsy as a child. Constantly in the ER, constantly being pulled aside from my parents to be asked if I was abused. My mother would always just calmly tell the doctor "Give her a few minutes.. I guarantee she runs into a wall or falls in the next 5 minutes." And she was almost always right. I have had 2 fractured skulls and at minimum 9 concussions (and my NS said that I was born with Chiari and it wasn't caused by all those head traumas.. mom doesn't believe him though). Now that I know what is wrong I am conscious of it I guess you would say. Sleeping is a challenge... I just can't get my neck to be comfortable. Looking back I have been that way for many years. My husband teases me that it always takes me 5 minutes to get comfortable. I feel like I was probably compensating back then and didn't even realize it. I attributed headaches to the head injuries, numbness and tingling in my hands to basic back pain and stress from work, and neck pain to the same. Now that I know whats wrong, so many other things just clicked into place for me. Crazy huh?
So now I am confused as to why all of my symptoms have been so much worse for the last 3 months. I was dx about 3 weeks ago and I would say that starting about 3 months ago I started into this steady decline... I have had maybe 2 days in that time frame where I have not had a headache. and this week I would say that they have been all day every day. My neck is killing me and is very swollen.. it has felt that way off and on for over a year but over the last few months has been more constant and this week has been unbearable. I am writing this at 5:45 in the morning because I just cannot get comfortable. I am even more concerned about the amount of ibuprofen I am taking. This has been a concern for YEARS but after cycling through numerous drugs (midodrine, baclofen, indomethacin, neurontin, topamax etc) to help the headaches it seems to work best, and that even seems to be failing me now. I have cried more in the last 2 weeks than in the last 2 years.. mostly because brain surgery is freaking me out but I AM NOT A CRIER.. and I hate it. Then I get a headache from it just to add insult to injury. ANd I don't know if it is related or not.. but my stomach has been upset for about 2 months off and on and since its new and has been going on while everything else has been falling apart I am wondering if that is connected too.
Sigh....
I am going to go troll these forums some more, look into that questions for the NS thread and try to see if anyone has ideas on how to get some freakin sleep :)
COMMUNITY LEADER
The Dr would give u a questionnaire and in addition do some basic physical eval and the Beighton Scale score test....the Beighton looks at hypermobility....but not all with EDS are hyper mobile and that is not all that EDS is.
Here is a link showing how they do the testing-
http://www.youtube.com/watch?v=IDSwP7iFOJM
And here is a link to the EDS group on MedHelp there is a thread with links to videos on EDS
http://www.medhelp.org/forums/show/417?camp=msc
COMMUNITY LEADER
Many of us here can relate to ur sentiments about being a care giver and have to allow others to help us....it is not easy to cut back and be patient....
So r u not with ur employer a long time that u have to wait until next yr for LTD?....Do u have ne short term disability?
Does ur employer have more then 50 employees?
How many hours have u worked in the last 365 days or rolling 12 months....
Once u use LTD or attempt to u r terminated from employment...STD is better and if u have an employer that qualifies as well as u qualify for FMLA that should help u....
Chiari and related conditions can affect u with GI issues and may be the reason for ur continued issues post op....Have they ruled out H.Pylori?
As for freaking out...take a deep breath, remember u r not alone in how u feel...and then remember to exhale....
I don't know how to be the patient. I mean I do with the long list of medical problems I have had through the years but I usually just deal with it and move along. I was sick with allergies and sinuses for many years and so had my tonsils out 5 or so years ago and got allergy shots for a year and current sinus infection aside, I have been way better in that area. Abdominal pain and nausea for years and knew it was mu gall bladder but couldn't get the medical community to work with me and not treat me like a drug seeker then just bypassed all them and went for the surgeon. Thats out... still hav some abdominal pain and some nausea but maybe a 1-2/10 instead of a 9/10 so was manageable... though maybe this explains why I still have the residual. But through all that I still went to work miserable and kept all the mom and wife balls in the air but this is freaking me out. I do have diminished flow posteriorly and I am miserable with the head pressure and eye pressure and the neck pain but if I could be out an extended period of time maybe I need to do pain management until I either truly can't deal anymore or can get LTD next year. I dislike this whole life altering business. I don't like thinking about how post op I will need constant help for a while. Even that freaks me out.. I'm the caretaker around here... lol
I am totally amazed at your story. It was like you were writing my life...I am waiting to have a CINE MRI to see if I have fluid block. I was diagnosed in April and saw a ns last week, she needs to see the MRI and then will decide if I'm a surgery candidate. If it's not blocked I'm back to square one and wondering what the hell is wrong with me. The extreme head pressure pains occur daily, and sometimes i'm waken by then. She says that's not typical of Chiari, but during the day when I put any pressure on my body I get them as well, which of course is typical. Now I'm sitting waiting to find out if I have to have surgery or start all over again, not even sure what to hope for at this point; and the not being able to sleep, well, I know all about that too! Waiting for results and tests puts an added stress on us, and I believe it makes all the symptoms worse! I hope you get the help you need and if you ever need to talk to someone who relates don't be afraid to message me. You got all these results in your 30's, unfortunately I'm 50 and just starting this awful journey. Take care..
COMMUNITY LEADER
Hi....I have had a EEG, EKG....and many tests....The EEG I had many yrs ago b4 my Chiari DX,...it was to see if there was a seizure disorder....many with Chiari do suffer seizures..,.some develop epilepsy so it is a benefit to see what is going on....
Each of us has diff symptoms so the list of testing may differ a little.....
Remember to look at family history as well....
I see all these different tests that are ordered... I've had none besides an MRI. but the 2nd Dr I saw has ordered an EEG, what will that benefit?I haven't seen anyone discuss EEG results?
COMMUNITY LEADER
Well not having surgery depends on how ur Chiari is affecting u, if u have a syrinx, obstruction of CSF, sleep apnea, ICP, POTS, ehlers-danlos,tethered cord,.....
As Viv said as a nurse u know what delayed health care could mean, and u also know what all could be affected by the nerves ...the heart, breathing...the list goes on....and there are risks with ne major surgery.....so again as Viv mentioned look at urself as the patient and see what is best for ur health, then decided.
As Selma always says, CM is life-altering. IMO, you have to look at yourself as the patient, not as you--wife, nurse, homemaker. You know what delayed treatment can do, especially wrt the brain.
None of us have any control over the situation; unfortunately there is a lot of loss with this condition.
Sorry, I sound like a Mom. :)
None of us have any control over the situation; unfortunately there is a lot of loss with this condition.
Sorry, I sound like a Mom. :)
Thank you Selma.. I will look into this EDS stuff... I "react" to many things already and if I based my life on my long list of allergies I would live in a bubble. I was allergic to the ink in my last tattoo even. That is super fun. I need to be able to drive. The thought of not driving is causing me to have a panic attack :( I can't just go into this so blind with no idea of how long I will be off work. I don't have LTD so may need to hold off until next year. If thats the case that would change a lot about how I approach my next appointment. My job is very physical... but I would go nuts without it. I m going to need to figure out best and worst case scenario for both having the surgery and not I think
COMMUNITY LEADER
Not sure where u got the no driving for a month...but it is 4 yrs and I still do not drive, granted I do have other issues, so do not count ur chicks b4 the eggs hatch is all I am trying to say...going by general guidelines can lead to disappointment and depression over the time it may take ....so wait and see how u recover to find ur own timeline.
Deff demand they look at EDS and the other related issues as I said they can affect how u heal...if u do have EDS and this Dr uses a dura patch made of nething other then ur own skin, u have a higher risk of rejecting it and having a CSF leak....I saw this issue for so many...it leads to more surgeries as the leak does not close with the blood patch....and many times the 2nd surgery is to add stitches which may also not help...it needs to be a replacement of the patch....
Close ur eyes b4 u go in the MRI tube and imagine u r newhere else with a LOT of road work being done....lol...sometimes they can do the lumbar with ur head out...so ask for this option.....it helps those that do not like enclosed spaces....
But I do think u should push for more testing for the related conditions....
My appointment isn't until the 3rd and if things keep up like this I feel like I will be in the ER before I make it another week. All night I felt like my left eye was just going to pop out onto my cheek. My neck is so stiff and swollen... I can barely even turn my head. Nothing is working. I think I will try to make it to Tuesday and see if the NS who saw me will prescribe me something to get me through. I just hate asking. I hate when I feel like they think I am lying when I'm not sleeping and miserable while awake. I show these pics I have of a normal brain and my brain. A.. I show my medical pals cuz its so cool to look at.. Would be so much cooler if it wasn't my brain. It's a fascinating bizarre thing and nurses love that stuff... But this is so not funny anymore :(
My head pain shot up unexpectedly recently, so I went to the NP. She was shocked at how much ibuprofen I gobble. (I still don't understand what the big deal is; it doesn't bother my stomach, and my kidney function is fine). Anyway, she prescribed hydrocodone & amitriptyline at bedtime, and no ibuprofen. The amitriptyline has given me some much needed sleep!
SO the nausea isn't just me then? Thank goodness.... I hate it. I am trying not to blame everything on it but I figure anything new in the last 2 months probably is.
I am concerned about how much time I will need post op. I am on intermittent FMLA right now for these wacky headaches but I need to have at least 2 vacation days built up prior to surgery or I don't get paid at all those 2 days. I suppose in the big scheme its whining but money is tight and all these doctor bills and MRI's aren't helping. I know you can't drive for like a month.. But what will the doc say I HAVE TO have off?
As for emotional... I am not a fan of this emotional junk. Seriously. I was at work the night after I found out and I started to cry and couldn't stop. That literally has never happened to me. Lasted like 20 minutes. And I know I am just making myself crazy with the whole "hope I don't leave my child without a mother or my husband without a wife" thoughts but I did look up the mortality rate and it is like 1-2% which is actually not as bad as I thought. I cried about having to cut my hair. Here.. take a piece of my skull but PLEASE OH PLEASE don't cut my hair.So dumb in retrospect.
And the age fits.. I am 37 Loriann so... yeah.
And if surgery is the only answer I am going to Cedar Point and Kings Island and riding every ride.. even if my head feels like it will pop off.. I don't see it being something I can do after.
Selma, I know my new NS has done Chiari surgeries with great outcomes.. but should I demand she checks if she doesn't offer? I don't have a total blockage of posterior flow.. just very very diminished flow. The pics are so crazy.I am super claustrophobic and will be super irritated at ANOTHER MRI as I have had 2 already in as many weeks and doctors act like you are a drug seeker if you ask for anything for anxiety or pain.. heaven forbid. A third would make me sad..but if I need it.......
As an aside, I was chatting with my lawyer and she was the very firts person to know what I was talking about as her cousin and their 3 kids all have it. It was nice to chat with someone who knew what the heck I was talking about.
Sorry.. I ramble when I am tired...
I am concerned about how much time I will need post op. I am on intermittent FMLA right now for these wacky headaches but I need to have at least 2 vacation days built up prior to surgery or I don't get paid at all those 2 days. I suppose in the big scheme its whining but money is tight and all these doctor bills and MRI's aren't helping. I know you can't drive for like a month.. But what will the doc say I HAVE TO have off?
As for emotional... I am not a fan of this emotional junk. Seriously. I was at work the night after I found out and I started to cry and couldn't stop. That literally has never happened to me. Lasted like 20 minutes. And I know I am just making myself crazy with the whole "hope I don't leave my child without a mother or my husband without a wife" thoughts but I did look up the mortality rate and it is like 1-2% which is actually not as bad as I thought. I cried about having to cut my hair. Here.. take a piece of my skull but PLEASE OH PLEASE don't cut my hair.So dumb in retrospect.
And the age fits.. I am 37 Loriann so... yeah.
And if surgery is the only answer I am going to Cedar Point and Kings Island and riding every ride.. even if my head feels like it will pop off.. I don't see it being something I can do after.
Selma, I know my new NS has done Chiari surgeries with great outcomes.. but should I demand she checks if she doesn't offer? I don't have a total blockage of posterior flow.. just very very diminished flow. The pics are so crazy.I am super claustrophobic and will be super irritated at ANOTHER MRI as I have had 2 already in as many weeks and doctors act like you are a drug seeker if you ask for anything for anxiety or pain.. heaven forbid. A third would make me sad..but if I need it.......
As an aside, I was chatting with my lawyer and she was the very firts person to know what I was talking about as her cousin and their 3 kids all have it. It was nice to chat with someone who knew what the heck I was talking about.
Sorry.. I ramble when I am tired...
I totally understand your situation. I've know for well over a decade about my CMI, but didn't research at all, thought the only symptom was the headaches. Within the last month my symptoms have increased in so many ways so quickly that I feel like I'm going to either die or go crazy. The weirdest part for me is that, coincidentally, they all started to the day after I learned that a friend of mine also has Chiari I. My husband thinks that it's odd that I've only been having increased headache & neck pain, accompanied by new symptoms like lumbar pain that shoots down my right leg, nausea nearly non-stop, vertigo, and blood pressure fluctuation since we went to my friends house and she offered me a C-Collar to wear while in the car, so prevent whiplash injury and promote cervical stability on our town's bumpy roads. He practically blames my friend for "causing" these issues :/
Talk about "it all makes sense"... After reading Selma's last response, something became all too clear to me... the day the symptoms all started to accelerate I tripped and fell.
I have told my husband that whatever is causing all these symptoms, I know one thing for certain. I have a Chiari I Malformation. If that is or is not what is causing all the problems I'm having, I need to find out. So I'm carting myself off to NY to see a Chiari specialist.
I hope for you the same that I hope for myself and everyone on here... better health, speedy healing, and ANSWERS. <|:o) Lori
Talk about "it all makes sense"... After reading Selma's last response, something became all too clear to me... the day the symptoms all started to accelerate I tripped and fell.
I have told my husband that whatever is causing all these symptoms, I know one thing for certain. I have a Chiari I Malformation. If that is or is not what is causing all the problems I'm having, I need to find out. So I'm carting myself off to NY to see a Chiari specialist.
I hope for you the same that I hope for myself and everyone on here... better health, speedy healing, and ANSWERS. <|:o) Lori
COMMUNITY LEADER
The comment not to rush back to work is for when u r post op...but u still should listen to ur body and rest as much as u can pre op too.....
I know what u mean having to work and for yrs I pushed myself to work and it can back fire on u...so be careful.
With work u said u do not have vacation....what about FMLA? do u work full time for a company with 50 or more employees?
The fact it got worse for u now could be a fluke and u may go back to a down cycle...the worst for me was when I was in my mid to late 40's ....
Chiari can also make us very emotional....more so then how we may typically respond to different events. Like a Hallmark card commercial...
Yes, there are many with Chiari that have a syrinx in the thoracic and or lumbar so just looking in the cervical spine is not ruling it out.
A true Chiari specialist will look at the whole spine and rule out ALL related conditions....so many that go with a NS that has done a few surgeries find out post op they also have EDS or something else but this can affect the recovery process and I feel it is important to know b4 u consider surgery. JMHO
The problem is work is not optional.. for now I have to suck it up until I can suck it up no longer. I know I will need time off for surgery and I have little to no vacation stored up. Its already going to be a huge financial hit so I need to bust it out as long as I can. He said I have no syringomyelia but only checked my cspine... from what I am reading I think they are supposed to check the whole way down? I will add it to my questions for my NS when I go. Sleep apnea is a no.. I had it years ago when my tonsils were blocking my airway at night and I am pretty sure I would recognize it... but will have my husband look for symptoms since we sleep opposite shifts. I need to look up the rest and I will ask. THANK YOU for pointing that out. So the all of a sudden worsening in my 30s is a normal thing? So freakin weird... this whole thing is.
COMMUNITY LEADER
Hi and welcome to the Chiari forum.
What u wrote neone of us here with Chiari could have written....we r all so similar...not that we are all nurses, but in how ur symptoms all of a sudden changed and worsened....I had mine my whole life, I was aware something was not right, but I had no idea just how much was Chiari related until I started researching it....
It is possible that stress, a hard sneeze or cough or a fall could have triggered ur symptoms to change...I have no idea what the catalyst was for me .....u may never know.
Finding the right Dr is key it is important that u r tested for ALL related conditions as they can affect how u feel and heal should u move forward with surgery, I can not stress this enuff....u need to rule out syringomyelia, sleep apnea, ICP, POTS,tethered cord, and ehlers-danlos......
DO not try and rush back to work or over do things, listen to ur body....and rest when u feel the need....
Know u r not alone : )
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