It is more if u have it...and what symptoms u r experiencing....one test that will allow Drs to believe it should be a CINE MRI to see if u have an obstruction to CSF flow....MRI's of the cervical , thoracic and lumbar spine to rule out a syrinx should also be done as well as testing for related conditions like tethered cord, ICP, POTS, Ehlers-Danlos, sleep apnea...as many of these conditions can have the same or similar symptoms to Chiari...being related it is hard to know which condition the symptoms are from....but it helps determine how u r feeling for sure.
U will need a true Chiari specialist to help with the testing....make sure u request copies of ALL tests done along with reports so going to another Dr for opinions are easier.
The first MRI mentioned Chiari Malformation 3-4 mm herniation which is probable normal variant however rule out clinically. A few weeks later I
had the other Brain, Cervical and Thoracic MRI's.
The tilt table study came back with borderline Orthostatic Hypotension. I was administered the nitroglycerine but did not pass out. Got an extreme migraine and nausea but did not pass out. Instructions were to drink massive amounts of water and lots of salt with a possiblity of adding compression stockings waist high.
Yes, I have all the reports from all the MRI's. The last MRI w/CSF Flow Study is an extremely detailed report regarding the tonsillar herniation and after my research on the radiologist he is the top NeuroRadiologist @ the radiology facility I went to and the NeuroSurgeon that I was sent to is supposed to be one of the top NeuroSurgeon's at JH. (?)
Arghhhh, those compression stockings. They take a small army to put on. I tried them and they are difficult to deal with honestly. If they were to the knee I would be so very compliant however waist high in the summer is hard.
U can go to a world re-known Hospital and see one of the best NS's but if they do not treat and research Chiari on a daily basis it does not mean much....
U need to find a NS that is dedicated to Chiari and related conditions not all neuro issues...
Oh I know...lol...I used talc to try and get them on better...I hear u, even knee high was too much for me....I had swelling after a ankle surgery but it seems the swelling occurred where ever my compression stocking ended so I was told to stop wearing them...which I was more then happy to listen to....
Oh, I understand with these doctors, believe me. I also had a Lumbar Puncture in 1/2011 to rule out MS or any other condition they thought necessary at the time, lol. I truly believe that the MRI w/Flow Study that I had done is an inconclusive test at its best. The reason I make this statement is because if you are in horizontal position not moving during a flow study it will not capture the episodes that take place (dizziness, blurred vision, faintness, etc.) when you turn or bend your neck.
The NS that I saw said she deals with Chiari all the time ???
I had NO health problems whatsoever until an episode with my neck getting snapped and thus started the array of problems and millions of doctors visits and testings. Since this episode I have acquired myalgias, bilateral arm and leg weakness, neck weakness, blurry vision, facial numbness, migraines, hypothyroidism, gastroperesis (liquid), shortness of breath, heart arrythmia and orthostatic hypotension. NONE of these things I had prior to a particular moment in life and trying to get to the root is so very frustrating and time consuming. The shortness of breath was dx as asthma which I persistently denied having and after months of inhalers, was ruled out as not asthma. The orthostatic hypotension I would possibly consider buying into as the primary culprit however when I become dizzy just by turning my head side to side this leads me right back to my neck as the culprit (in my opinion). :-O
I understand how u feel regarding MRI's and us laying flat as gravity plays a role in how we feel...but a CINE MRI is more to see if the tonsils pulsate with ur BP....and it can be seen even tho we are laying flat, no they can not see how it makes us feel.....
It is also not only possible but probable that the injury to ur neck flared ur symptoms .....
Did u have a flexion and extention xray?
I was also told I had asthma like issues yrs ago....and was on an inhaler....I do have improved breathing since having the decompression surgery.
I have not had a flexion and extention xray ! My somewhat new DO is the one who mentioned this Chiari again and personally called the NS to get the latest MRI w/CSF done. The wording on this last radiology report is extremely detailed regarding Chiari and I am still trying to find out what the "atlas" is as far as a structural body part. BUT, I do think you just educated me on something when you said pulsate ! It mentions pulse sequence but I don't understand it :-/
Hmmmm....well apparently my 3 or 4 mm tonsillar extension although below the foramen magnum is well above the atlas ??? Which is within "normal" limits, lol. Not sure what constitutes normalcy anymore. No cervicomedullary compression or syringohydrobulbia, no abnormal contrast enhancement or restricted diffusion is identified, no dephasing abnormalities are noted on the gradient echo pulse sequence. Normal appearing vascular flow voids are noted at the skull base.
I hope not...it's only been 3 weeks. I interpret report by radiologist as stating no flow obstruction seen and NS apparently agreed with that after reviewing CD/report and concluded no followup needed as surgery not needed. Who knows !
No to EDS or a retroflexed odontoid. They know something is wrong but trying to pinpoint it has been the problem. I have read that there is an awesome doctor at GBMC that is an Ehlers Danlos specialist.
Honestly, I have seen so many doctors and had so many tests that I am surprised I still have any energy at all.
I have had more full cardiology workups in 3 years then most people have in an entire lifetime. Apparently, I have acquired an arrythmia, more specifically a short PR syndrome, however told nothing to worry about. On the other hand, it is pretty darn scary when 3 specialists (Endo, ENT & NS's PA) in 3 weeks tell me I need a Cardiologist most specifically an electrophysiologist.
This week alone I had 3 drs. appts. Follow up with primary from NS visit, new Endo appt. which she concluded that although I have this acquired hypothyroidism she believes my major problems are from my blood pressure dropping (orthostatic hypotention dx again) and said I need an electrophysiologist. The next day I had a vocal cord dysfunction study by my ENT (requested by my Allergy/Asthma dr. to try and dx this breathing problem that I have proven is NOT asthma) and my ENT asks if i have a Cardiologist ??? He said I need an electrophysiologist and believes I have dysautonomia.
Sorry. I meant to say NO I have not had EDS or retroflexed odontoid ruled out. The retroflexed odontoid I would not be sure who to ask about since the NS said no reason to follow up as I do not have Chiari :-/ It is all such a strange situation since again I had absolutely no medical file to speak of prior to this incident. I know of a NS that has retired and now operates strictly as a consultant so it may be worth visiting him to review my records. Also looking into sending my records somewhere for their review as well and see what happens. BTW, thanks for all your responses and hope you are feeling great today.
SO were u DX'd with POTS? It is a related condition to Chiari and would explain ur BP issues and heart rhythm.....
Well EDS can cause u to have many of the same symptoms as Chiari....
Deff see a cardio Dr and get testing if only to give u something to compare to later it is best to rule it all out, I went to make sure as I had no idea what was going on with me heart wise...palps etc....
U have one of the best EDS Drs in Baltimore...Dr Claire Franamano....look her up if u have it she can tell u.
Yes, she is at GBMC. When I went for the Tilt Table Study last year i was borderline orthostatic hypotension. I suppose they claim borderline since i did not pass out. I am always dizzy and if I lift my head to look up I become dizzy as well. I don't think standing straight moving my neck and getting symptoms is due to orthostatic hypotension/pots, but I could be wrong. I have daily migraines as well which I have always commented as starting at the base of my neck and moving up to my eyebrows.
As far as the heart goes, I was admitted to the hospital thru the ER 2 weeks after this happened, as I was not getting any better only worse.
My EKG was abnormal so they called in a neurologist who ordered the MRI's for the brain, cervical, thoracic (lumber was done later) and they put me on the Cardiology floor with monitors and stress testing for 3 days. Came back as irregular heartbeat but just must be normal for me. Since then I have had 2 more full cardiology workups and now with 3 drs. telling me I need to see a Cardiologist is just mind boggling and stressful to say the least. Then the dr. will say "I think stress could be the problem" WOW, you think ???
I do know when the seasons change I get way worse so I am not sure if allergies make symptoms worse.
It is possible that ur episodes of getting dizzy are just from Chiari as I had that as well, and I even had weeks of vertigo....the vertigo would come and go and stay for periods of time....none since surgery thank goodness.
Do u also have GERD/acid reflux? If so, many of us with Chiari do, it is possible the vagus nerve is compressed and that can cause heart palps....I too had them...made my heart beats seem irregular...well post op that too is gone.
I have had quite a few Drs try and sell me on stress the only stress I had was finding a Dr to investigate what was really wrong and all the dumb and lazy DX'd they came up with....
My body hurts all over right now, I know it is the change in temps and the seasonal issues as I always get this.,...I think it is more my EDS acting up.
Interestingly enough I just got out of the ER with a DX of vertigo. What an experience it is. Never had this before and can not work with it. The meds they gave me do nothing but make me sleep. This is horrible to say the least.
I agree with the doctor hunting process. The stress is bobbling between doctors that have no idea or are afraid to admit they don't know and take that extra length to look into it. It is much easier to had a RX to someone and call it a day. I believe my current DO hit the nail on the head and wasnt afraid to say Chiari because my very first meeting with him he asked me if he told me what he thought was my problem was I willing to go full force ahead. Unfortunately when the NS came back with not Chiari as the radiology report says however the 3-4mm herniation is present, that put a hold on that situation. I was upset to learn that the NS didnt even review the CD she just read the report. I believe a surgeon must always look at the actual CD/films so now I need to move past her to someone else.
I have periodic episodes of acid reflux but had it before my incident which started all these problems. I experienced lots of dizziness for months at the time of my initial incident then it went away until now. The only thing that has been different is that I had my nose scoped by the ENT's asst. thursday and this all started immediately after that. So, not sure if that process activated something. Getting an answer is always difficult.
SO many Drs do not realize how a small herniation can affect us, they do not want to look closer to see it is Chiari no matter the size of herniation, it is the malformation of the skull that makes it chiari not the herniation.
It is frustrating and this is y we suggest researching to locate a true Chiari specialist as they research Chiari and ALL related conditions to help us feel better, and they do not discriminate on the length of herniation they look to see if u have a CSF obstruction and ne other related conditions.
Yes, it was a congenital malformation of the skull , so I have had it since birth. I went to many Drs over the yrs was told I had issues with anxiety and given meds, told it was migraines and given more meds...also told many of the pains I had were growing pains.....in high school I was sent to a shrink....
I was not DX'd until age 48....keep in mind MRI's were not in use for the major population for DXing issues like HA's when they first were used it was for cancer DX's.....and then when they started to use them for more issues they were very expensive....
The symptoms I have now are more from my other conditions as I also have tethered cord and ehlers-danlos and a few bulging disks with spinal stenosis and Hashimoto's.\
It is difficult to know what symptoms are Chiari and which are from the other conditions but I have more strength then I had yrs ago, plus no more drop attacks and my HA's are more manageable now too.
Wow. That is a long time for a dx. Yes, I hear the same things from drs. about congenital and so on. My only concern is that I did not have any of these problems before my day in the park which leads me to the belief they are not correct. Very well could have been there but did not cause me any symptoms as such for the last 3 years. I used to run around like a nut with my child and do sumersaults on the hardwood floors with no problems whatsoever. I am lucky now to have energy to walk around the block, which is pretty sad. For these last years if I apply too much strength or energy I will pay for it for days to come as I become extremely weak.
I remember initially my drs. being concerned over a borderline positive ANA and was sent to Rheumatologists (3) of them actually as they kept telling me to find a different one. They did the same with the NL. I had one NL that said if anything is eventually found with you rheumatologically I believe it will be a connective tissue disorder. I remember someone I knew had Ehlers Danlos and now can put two and two together in what direction that NL was going at. He did however claim that I did not have symptomatic Chiari. LOL, but no one can explain one day being problem free and the next being bombarded with all sorts of symptoms.
I am very hesitant when it comes to meds and refuse to take any anxiety medication. For me that would just be masking the problem and that is just not going to happen because I know my body and what transpires with it the best.
I tell the dr. I have anxiety wondering if you guys are ever going to figure this out and upset of how much $$$ I have spent so far on nothing. I get the....we can be sure of what you don't have ! Well, that's no help to me...so I keep plugging away. Actually dropped all my films/cds/reports off to a consultants office today and will see what he has to say then will try out the Drs. in Bethesda.
It is possible that u had Chiari all along, only ur symptoms may have been so minor and cycled so infrequent that u attributed them to other things, when ever u have a certain sensation for as long as u know, u consider it a "normal" thing, not a symptom....But the more I learned about Chiari and symptoms, I found some of the issues I dealt with were symptoms and not just the way I was, or it was the way I was due to Chiari.
A fall, even a hard cough or sneeze can trigger a flare of symptoms u had not had b4....the doing too much one day and paying days later is a typical Chiari issue we all have had to deal with...I use to use my days off to sleep so I could continue to work full time...and if I had a special event I wanted to go to I would rest up and make sure I did not have to work early the next day....
The biggest problem we have is Drs that do not know or understand Chiari dismiss it as much as they do us, it is not that u do not have symptoms from Chiari , it is they do not understand y u do and what to do for u or who to send u to.....
Ehlers-Danlos is a related condition to Chiari that is painful and can be as cyclic as Chiari symptoms...cause HA's and many other pains and symptoms...subluxations, and all out dislocations.
I did refuse meds that were RX'd for me for anxiety and the like as I also felt like u, how will I know if I am getting worse, it is just a band Aid...and not a way to find out what was wrong....
I pray the Drs in Bethesda will be able to offer insight as to how ur Chiari is affecting u and if u have ne other related conditions.
Still having muscle pains as it is a change of seasons...but I know this too shall pass : )
Hope your muscle pains are getting better. The funny thing is when you talk with people and they seem to have the same symptoms and then you mention Chiari and they go back and look into MRI's they had years and years prior and find the same exactly statement on their reports. Kind of scary actually.
As I mentioned in the last post, yesterday around 12:00 noon I dropped off my reports/films/cd's with a detailed letter requesting the consultation (as per office guidelines) and outlining symptoms, etc. This doctor typically is booked out for two months to get an appointment. Well, this morning I received a call before 9:00 am requesting that I come in in 2 weeks and I have been placed at the top of the cancellation waiting list. Not sure whether to be scared or glad. As we know, this could go either way but the more the merrier.
One thing comes to my mind frequently. I wonder since Chiari is "so rare" and only being picked up upon nowadays due to MRI usage, how big a part Roller Coasters play in people becoming symptomatic with congenital Chiari Malformations. I for one, love(d) roller coasters. The bigger, faster, twistier the better the ride. I must admit that after my day in the park with my dog snapping incident and recupperating for a few days I decided to "pull it together" and take my child to Hershey Park, ride some roller coasters and have never been the same since. :-(
Well I feel Chiari is not rare, but Drs well informed and experience with it are....again JMHO.
I too was a Roller Coasterolic.....the more loop de loops it had the better....I know I had symptoms that came and went even after being on one but I would never admit to it then as Ioved them so much....I also know that things like roller coasters can trigger symptoms to flare, but so can a hard cough or sneeze...or a car ride on a bumpy road....I do avoid roller coasters now....and I do enjoy when they show the riders vantage point on TV, I can just feel it....lol...I really want to try a virtual ride to see how that is...just may help the sense of loss over no more rides.
I also feel once we have a flare that affects us slightly diff then others we may have had,....that everything we do going forward will affect us more as well....not knowing how to really explain this I hope it makes sense, but this is what I believe after all my experience and contacts with others with this condition have left me with.
I definitely don't believe that it is rare. I was making light of how doctors respond sometimes. Such as, "oh, a true Chiari is so rare". My favorite quote from a doctor was, "even if it is Chiari, it would take alot more than that to allow someone to decompress me". Of course, my response was somewhat of, "well, if you had all the symptoms and felt like dirt every minute of every day then you might think differently. However, since you are not in the position to experience this joyful time than you really can not comment on the situation regarding surgery now can you". Hmmmm, one of those moments where the patience ran out, lol.
just read through your chat with SelmaS.
I take it that you live in MD?
I had the decompression surgery at John Hopkins. Yes! I was told that the NS was a Chiari Specialist. I am seeking a second surgical opinion somewhere else because of all kinds of strange symptoms I have now that I did not have prior to surgery and my so called NS has done nothing when I have asked for a CINE MRI.
Also I happened to recently gogled the NS name and I was shock to say the least. I don't know if its the same Doctor but please send me a PM. I only wish I had found this site prior to having the surgery. Would I have had the surgery? because I was told I had an obstruction in CSF. Yes but would I have chosen John Hopkins? .........I was also perfectly healthy until I had my second child and starting having upper arm pain and weakness and had to do PT and saw someone else who worked on my neck.
Oh I know just what u mean, but I hate Drs that use the word rare in the same sentence with Chiari as it is they, the Drs that have experience, and knowledge of Chiari that is rare not Chiari itself and it drives me while how they can also say that Chiari would not or could not cause the symptoms we all have....ugh....I also had a feeling u were only venting, but I like to make a point of saying what I did so that those just reading posts and not participating know that it is not a valid comment for a Dr to make...
I went to the consultation appointment today. What an informative appointment this was. The most thorough neurological exam to date was performed today. I have been to 6 NL and one NS previously (the NS did not do the exam the PA did).
Detailed history was taken.
Explanation of division upon doctors opinion on Chiari and different types of Chiari.
I further explained looking up, down, left and right makes me dizzy, blurry vision, etc. Also mentioned the recent dx of vertigo in the ER.
They asked if the room was spinning or if I was unbalanced. I said, I was unbalanced, the room was not spinning that's why I was confused when they dx me with vertigo. Apparently, it is not vertigo but ........ can't remember the term.
Left the room to view films/cd's.
All of my symptoms go hand and hand with Chiari. All of these symptoms were noted prior to and reasoning for ordering first MRI of the brain.
Something is wrong with the odontoid. Can't remember what was said as I was overwhelmed by the fact that someone actually acknowledged something was wrong. I remember you mentioning this word in a previous post to me so when it was mentioned today, I was like uh oh.
Moving up, down, left and right now with other symptoms occuring has now become a possibility of impingement of arteries/veins. Ordered Flexion & Extension & Rotation xrays. I remember you mentioned these as well.
My irregular heartbeat that keeps being passed off as "not a problem"....well, apparently it is a problem and is probably connected to
this Chiari and now all my Cardiology reports (which is ALOT) are being requested.
They want to see specifically the Tilt Table Test. I told them it was moderate and symptoms not induced by nitroglycerine which is even more suspicious of Chiari related and not POTS/orthostatic hypotention/etc. in and of itself. Scary !
Lastly. CSF flow is believed to be blocked but needed to see the report. I whipped out my extra copies in hand. Apparently, there is a difference of opinion and it is believed that my CSF fluid is in fact blocked.
So in conclusion I went from nothing is wrong to a list of problems in one visit from someone who actually decided to do their job. Wow, I was scared today but relieved and back to scared again.
Cervical with Flexion/Extension and Rotation
Cervical Dynamic Films AP Lat, Obliques, F/E & Views of Occiput C1, C1-2, C2-3 with head rotation r & l and bending over and ear to shoulder r & l looking for instability in upper cervical joints
Still shocked they mentioned the Dysautonomia "umbrella" and of course I mentioned EDS which they were well aware of but we didnt get too far into that as of yet.
Hi, I am in the process of getting an appointment with the Neurosurgery Dept. at Johns Hopkins. I don't know who I will be seeing, since you have to "apply" and they set you up with someone. Could you PM me if there is some reason I should start looking elsewhere? I've already been through one awful experience with a neurologist and I don't wan't to get started with another one that may not be right. Plus, I'm in the DC area, so while it's fairly close, it's still not a fun trip in traffic for an hour or more. Thanks.
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