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Chiari Diagnosis from CSF Leak ?
Hello....Has anyone been diagnosed with Chiari Malformation as the result of a spontaneous CSF leak ?
If so, can you please provide some information on your situation/symptoms.
It's been 3.5 years and finally dx as this is the problem. My CSF fluid no longer leaks from my nose however after review of my medical records this is the theory they are going with.
Small spontaneous CSF leak which more than likely herniated the cerebellar tonsils to 3-4mm. Could be right, could be wrong at this point, I suppose. Could have been born with it, could have acquired it. So many questions and never any answers with this being the most reasonable thus far. Would be great if I had an MRI prior to the neck trauma.
Crazy symptoms with inconclusive test results.
Blood is always great....pcp says I look great on paper but knows otherwise
Tilt Table Study - not positive but symptoms suggestive of Orthostatic Hypotension
Irregular Heart Beat - short PR syndrome...(extra electrical pathway) PALPITATIONS
Low Blood Pressure
Visual Disturbances with black spots occuring
Shakiness
Bilateral Weakness in legs
Bilateral Weakness in arms
Migraines
Neck Pain
Fatigue - Major
Weakness and Fatigue upon Exertion
Gastroparesis
Blurry Vision
Sensitivity to Light - Severe
Heat Intolerance - No hot showers and No outside time in the summer heat :-(
Difficulty Breathing...originally dx with asthma....cardiologist gave me pulmonary function test NEGATIVE results
Acid Reflux - but then again, everyone is dx with this anymore.
Did cervical/thoracic facet injections and they eliminated migraines, dizziness, light sensitivity, blurry vision. Still kept weakness and fatigue. 3 weeks later symptoms eliminated are back but this was to be expected as they were done as a diagnostic measure only
If so, can you please provide some information on your situation/symptoms.
It's been 3.5 years and finally dx as this is the problem. My CSF fluid no longer leaks from my nose however after review of my medical records this is the theory they are going with.
Small spontaneous CSF leak which more than likely herniated the cerebellar tonsils to 3-4mm. Could be right, could be wrong at this point, I suppose. Could have been born with it, could have acquired it. So many questions and never any answers with this being the most reasonable thus far. Would be great if I had an MRI prior to the neck trauma.
Crazy symptoms with inconclusive test results.
Blood is always great....pcp says I look great on paper but knows otherwise
Tilt Table Study - not positive but symptoms suggestive of Orthostatic Hypotension
Irregular Heart Beat - short PR syndrome...(extra electrical pathway) PALPITATIONS
Low Blood Pressure
Visual Disturbances with black spots occuring
Shakiness
Bilateral Weakness in legs
Bilateral Weakness in arms
Migraines
Neck Pain
Fatigue - Major
Weakness and Fatigue upon Exertion
Gastroparesis
Blurry Vision
Sensitivity to Light - Severe
Heat Intolerance - No hot showers and No outside time in the summer heat :-(
Difficulty Breathing...originally dx with asthma....cardiologist gave me pulmonary function test NEGATIVE results
Acid Reflux - but then again, everyone is dx with this anymore.
Did cervical/thoracic facet injections and they eliminated migraines, dizziness, light sensitivity, blurry vision. Still kept weakness and fatigue. 3 weeks later symptoms eliminated are back but this was to be expected as they were done as a diagnostic measure only
COMMUNITY LEADER
Didn't u make copies?....I suggest u make copies and hand them out, that way u have the originals....
Deff we need to educate ourselves so we know when we meet the right Dr.....
It seems we all get on that Merry go round if we have this DX.
Yes of course. I first have an appt. with the NS at JH who is "supposed" to be very Chiari knowledgeable. We will see when I get there. He actually has all my films so after that appt. I can regain them to my possession and send them off somewhere for a 2nd opinion....or 1st, lol.
I asked the NL if he knew what he was doing....YIKES....it just kinda slipped out. Then I was thinking.....did I really just say that.
Royal Chiari Runaround.....wow, I have been on that Merry Go Round for quite some time. The downside ***** but the upside is that I have gained a tremendous amount of knowledge....knowledge is power.
I asked the NL if he knew what he was doing....YIKES....it just kinda slipped out. Then I was thinking.....did I really just say that.
Royal Chiari Runaround.....wow, I have been on that Merry Go Round for quite some time. The downside ***** but the upside is that I have gained a tremendous amount of knowledge....knowledge is power.
COMMUNITY LEADER
Hmmm well again I have to ask what experience ne of these Drs have with Chiari...as the less experience they have the more u will get what we have dubbed the Royal Chiari Runaround.....they send u from Dr to Dr as they can not admit they do not know and will say it is "all in ur head" which is correct on the basis of what Chiari is, but not in the meaning they are saying.....
Since u feel like u r getting the Royal Chiari run around,,,,I can only suggest u try a true Chiari specialist to review ur films and charts.
I asked if a lumbar puncture would tell and he said not necessarily. I had one done which was ordered by a NL 3 years ago and figured if that was the gold standard test than I could just pull that record. Apparently not an option.
According to him, he would try 2 more medications and then would be at a loss. Explained to the NL that the NS that is referring me to a different NS also referred me to a NL but I didn't see the point as I already had him and really don't feel like explaining the entire situation again to a 6th NL. He said it wouldn't be bad to get someone with a clear outlook.
Okay, well considering I have only seen this NL 3 times, that seems like quite the blow off to me. I am guessing that he isn't very informed on Chiari because all he says is my case is very complicated because they are minimally low lying tonsils. Personally I would much prefer the testing to see if I do have the pressure problem as opposed to just adding another medication to me.
According to him, he would try 2 more medications and then would be at a loss. Explained to the NL that the NS that is referring me to a different NS also referred me to a NL but I didn't see the point as I already had him and really don't feel like explaining the entire situation again to a 6th NL. He said it wouldn't be bad to get someone with a clear outlook.
Okay, well considering I have only seen this NL 3 times, that seems like quite the blow off to me. I am guessing that he isn't very informed on Chiari because all he says is my case is very complicated because they are minimally low lying tonsils. Personally I would much prefer the testing to see if I do have the pressure problem as opposed to just adding another medication to me.
COMMUNITY LEADER
No I was never on DIAMOX.....but if u do have IIH it is good to try meds for it and try and rule it out.....
I was on TOPAMAX and I was told the same that it works similar to a diuretic....
Try not to stress and try what he is suggesting as IIH is common for many with Chirai.....there is also testing to determine as well,,,,,so I would want to know if testing is being done or r they just looking to how u respond from the meds?
Merry Christmas and Happy New Year to you as well. Hope you feel much better reallllll soon !
Glad you caught it when I put "here we go again". LOL, funny so many things in common.
Had endo appt. the other day....she wants me to focus on finding a doctor for POTS.
Had followup with NL today....apparently U of M where he is has the only facility in MD for POTS ??? So this is what the nurse explained to me. Anywho, he does not think that I have POTS and did not recommend another tilt table study upon my request since my first was inconclusive. Great. He wants to try 2 more migraine meds and if they don't work has no idea what to do. Lovely, LOL. To be expected though.
One recommendation was Diomox. Have you ever taken that? He did tell me that Topamax which I currently take acts the same....as a diuretic in some fashion to reduce too much fluid in head, etc. I asked if he was referring to intracranial hypertension and he said yes. Hmmmmm.
Glad you caught it when I put "here we go again". LOL, funny so many things in common.
Had endo appt. the other day....she wants me to focus on finding a doctor for POTS.
Had followup with NL today....apparently U of M where he is has the only facility in MD for POTS ??? So this is what the nurse explained to me. Anywho, he does not think that I have POTS and did not recommend another tilt table study upon my request since my first was inconclusive. Great. He wants to try 2 more migraine meds and if they don't work has no idea what to do. Lovely, LOL. To be expected though.
One recommendation was Diomox. Have you ever taken that? He did tell me that Topamax which I currently take acts the same....as a diuretic in some fashion to reduce too much fluid in head, etc. I asked if he was referring to intracranial hypertension and he said yes. Hmmmmm.
COMMUNITY LEADER
Just one more thing we have in common....lol....most times they took both....at least that is what I was told....
I have not had the testing on my lungs, but I did everything to build them back up, and even after my decompression surgery I was given the same breathing contraption to use to keep my lungs clear and strong....it is plastic with a float and u breathe into it to make the float rise.....and there is a gauge so u can see improvement....so at this point I do not think I have it....
Hope all is going well.....I have been MIA a bit on here as I am not feeling well.....my TCS is acting up big time.....so, I will be wishing u a Merry Christmas and a health and pain free New Year !!
Here we go again.....I had my tonsils out when I was 9, lol. Not sure about the adenoids.
Do you still have restrictive lung disease? Interesting because I had a chest CT done in 2011 that was clear and next day another type of CT scan that said something along the lines of early emphysema/copd something so I requested the radiology facility to reread the test and they concluded they think it was just movement during exam. Well, since that was 2011 ..... let's hope they were right !
My breathing is/has always been mouth....never though that I get deep clear breaths during exams when they tell you to....but don't know what that is all about....that has been as long as I can remember.
Got call yesterday from NS to schedule appt. Should be interesting.
Do you still have restrictive lung disease? Interesting because I had a chest CT done in 2011 that was clear and next day another type of CT scan that said something along the lines of early emphysema/copd something so I requested the radiology facility to reread the test and they concluded they think it was just movement during exam. Well, since that was 2011 ..... let's hope they were right !
My breathing is/has always been mouth....never though that I get deep clear breaths during exams when they tell you to....but don't know what that is all about....that has been as long as I can remember.
Got call yesterday from NS to schedule appt. Should be interesting.
COMMUNITY LEADER
Well I had 2 issues...one was DX'd as restrictive lung disease which I was told was a result of an exposure to pesticides at one place of employment.
Next, I am/was a mouth breather....I felt as if I would suffocate if I did not breathe thru mu mouth.
When I was 7 my parents had my tonsils and adenoids removed, it did not help.....but I have found I can breathe much better after the decompression surgery....I still breathe out of mu mouth at times but it is more a habit then the feeling I am not getting enuff air.
Not sure if that helps
Selma I have a ? for you....or 10,000, lol.
I know you said you had breathing issues prior to surgery. Can you tell me what they were like. I am having a difficult time describing this situation. It feels as if I have chest pressure and hard time getting air in. It is so discouraging. As I am so very tired and exhausted and the breathing issues just add to it I feel.
I have had the chest xrays which are always negative. A couple years ago I had a CT and it came back early emphysema/copd, etc. I asked to have it reread as the day prior I had a different chest CT for ??? and it was clear and they did reread it and it came back "probably just movement during exam" of course who knows which is the correct one.
I had 2 stress tests, one in 2010 (when admitted to hospital 3 weeks after the neck trauma) and one in 2011.
Lung function testing in hospital setting (in glass box, etc.) in 2011 or 2012 can't remember and it came back upper airway something or other. This is the one the asthma/allergy dr. just decided in August was not negative after all (ARGHHHH) and that time sent me for the vocal chord dysfunction study and he said inconclusive.....but try speech therapy.....not doing it as clearly my speach is fine. Everytime a dr. asks me the outcome of that and I comment the recommendation is speech therapy they just look at me like, WTH.
I was given clonazepam a few months ago when I had intermittent stomach pains that they cold not find anything to see if it was anxiety driven and the med did nothing so the conclusion was that it is not anxiety. Clearly I have acquired anxiety however the drs. all say there is something directly causing the anxiety but ??? Can't imagine what that cause is.
I know you said you had breathing issues prior to surgery. Can you tell me what they were like. I am having a difficult time describing this situation. It feels as if I have chest pressure and hard time getting air in. It is so discouraging. As I am so very tired and exhausted and the breathing issues just add to it I feel.
I have had the chest xrays which are always negative. A couple years ago I had a CT and it came back early emphysema/copd, etc. I asked to have it reread as the day prior I had a different chest CT for ??? and it was clear and they did reread it and it came back "probably just movement during exam" of course who knows which is the correct one.
I had 2 stress tests, one in 2010 (when admitted to hospital 3 weeks after the neck trauma) and one in 2011.
Lung function testing in hospital setting (in glass box, etc.) in 2011 or 2012 can't remember and it came back upper airway something or other. This is the one the asthma/allergy dr. just decided in August was not negative after all (ARGHHHH) and that time sent me for the vocal chord dysfunction study and he said inconclusive.....but try speech therapy.....not doing it as clearly my speach is fine. Everytime a dr. asks me the outcome of that and I comment the recommendation is speech therapy they just look at me like, WTH.
I was given clonazepam a few months ago when I had intermittent stomach pains that they cold not find anything to see if it was anxiety driven and the med did nothing so the conclusion was that it is not anxiety. Clearly I have acquired anxiety however the drs. all say there is something directly causing the anxiety but ??? Can't imagine what that cause is.
COMMUNITY LEADER
LMAO...well it is tempting to fire willy nilly but u can't as theycan collect unemployment and u have to go to a hearing, have a lawyer so it costs the company money unless they can put the proof of blame on the employee...and just not doing the job correctly is enuff the manager on the floor has to write them up and sit down with them, u have to offer more training etc......it is a never ending cycle.
SO u get it too....it hurts like heck....I hate it....not sure what it is from.
Fantastic....glad to hear u have another Dr on ur side...u r moving forward....YAY !!
WOW...just a call that the dictation notes are completed form the NS that referred me to the other NS. Throughout his 4 pages of notes, he commented that "in my heart of hearts, I believe something is wrong with her"....I was so touched to read this statement. Woohoo....got my PCP, this NS and my ENT in my court. He also mentions that although not knowing if this 3-5mm herniation is the problem he believes that if it is this than she potentially could get significant relief from surgery.
Actually, I just came from dentist and have a cracked tooth which will require a crown tomorrow....never a dull moment. Cardiologist needs to be rescheduled now.
Ice pick pain is something I have acquired for the last 8 months. Never had ear infection in my life and don't know what it is either. ???????
If I worked in retail, I would so fire people left and right, lol.
Actually, I just came from dentist and have a cracked tooth which will require a crown tomorrow....never a dull moment. Cardiologist needs to be rescheduled now.
Ice pick pain is something I have acquired for the last 8 months. Never had ear infection in my life and don't know what it is either. ???????
If I worked in retail, I would so fire people left and right, lol.
COMMUNITY LEADER
Well I was a HRM at a retail dept store and I was in charge of hiring and training basics...and the dept manager is to do the rest....but the store manager never made the DSM's do their jobs and prove they were training on the floor...so it was very frustrating for me...and with the new computerized registers and time clocks there are some that can not complete training as they have no computer experience.....I had one older woman, that said the training made her feel like Pavlovs dog....lol....not sure what she meant, but I wasted a lot of time trying to help her understand only to have to tell her she was not going to move forward into a position...I wanted to cut her off days b4 I did, but since the store manager hired her, he wanted me to keep on trying past the allotted time which was all of waste...sigh
Hmmm not that I remember....I did have jaw pains....that has all been eliminated ....no issues there ne more...I still have the occasional Ice Pick pain in my ear....it is a sudden pain and feels like someone jabbed an ice pick in my ear....not sure what that is and I am glad I do not get it as much as b4 surgery....
Yes, you are correct in that it is the training or lack of. What I will never understand is how many bad work ethics employees hold these days and that the companies do nothing about it. There are so many people unemployed that surely it would not take that long to train (correctly) and place them in the postiion, smh.
That is horrible about the insurance situation. I hope that I don't have to endure all that nonsense. Seriously, because my day to day tasks are overwhelming anymore and when something comes up that I need to tackle it is the most difficult thing to accomplish anymore....very sad.
Example being....I was hit in a parking lot a few weeks ago by someone backing up out of their space....that is pretty much when my headaches came back however I want to say that the headaches are due to the injections wearing off. Either way I am screwed right now.
Woke up this morning with a horrible toothache. So now I have to go see the dentist this afternoon (one more appt. this week that I really didn't need) and get the xrays, workover and hopefully he does not find anything or need a root canal however this is the same tooth that has given me problems in the past and upon dental xray nothing is revealed. So, embarassing as that is, it will still need to be checked. I am currently on antibiotics so doubtful that it is sinus infection.
Have you ever had dental pain that was "phantom pain" before your surgery?
Truly overwhelmed.
That is horrible about the insurance situation. I hope that I don't have to endure all that nonsense. Seriously, because my day to day tasks are overwhelming anymore and when something comes up that I need to tackle it is the most difficult thing to accomplish anymore....very sad.
Example being....I was hit in a parking lot a few weeks ago by someone backing up out of their space....that is pretty much when my headaches came back however I want to say that the headaches are due to the injections wearing off. Either way I am screwed right now.
Woke up this morning with a horrible toothache. So now I have to go see the dentist this afternoon (one more appt. this week that I really didn't need) and get the xrays, workover and hopefully he does not find anything or need a root canal however this is the same tooth that has given me problems in the past and upon dental xray nothing is revealed. So, embarassing as that is, it will still need to be checked. I am currently on antibiotics so doubtful that it is sinus infection.
Have you ever had dental pain that was "phantom pain" before your surgery?
Truly overwhelmed.
COMMUNITY LEADER
Was the MRI of that area?....Plus, not all CSF leaks show on a MRI....so not sure it would have...
I worked in grocery and department stores and always said thank u for shopping etc....it is the training they get or don't .....
Well now the latest I heard on the INS debacle is those that did use the site are now having funds removed from their bank accounts to pay for it without being told and prior to the due date....
The Sect...Sebelious (sp) stated they could not tell how many had signed up as they did not pay the premiums yet and moat will wait until they were due.,....and now to find the accounts were accessed and amounts removed...no bills were sent....this is just crazy.
The whole thing is messed up really bad....
No idea what a MRI would cost and I hope to not find out....lol...
Thinking about the MRI and the nose incident. Wouldn't the MRI have shown if there was a leak after the nose injury ? Considering the MRI mentions a "probable" retention cyst in the something or other sinus........
Yikes...."probable".
Wonder how much $$$ an MRI is for patients not going through insurance. There is a facility by me that apparently gives discounted rates for such situations. Although I have insurance getting a MRI from a different facility may be beneficial at this point, Such as starting on a clean slate.
I hope your insurance situation works out. Actually watched the news last night and there was a resident of MD trying to register and the website was messed up then asked questions and gave options that did not even pertain to his situation. He was upset because he stated that they had so much time/years to get this together and it seems as if they haven't even done test runs on it. Example: There was an icon of a person with his name next to it, then there was a drop box with choices as to the relationship he is to the other icon on the other side, another person with his name under it. He said there is no option in drop box that states "self".
What frustrates me is that we pay our money to do the work in the grocery store (self checkouts) and the prices just keep going up. Then with the people hired.....ughhhhh......I always say thank you....always.......however, since when are we to thank people for suporting their business....cashiers wait for the customers to say thank you and they say you are welcome.....a little backwards !
Yikes...."probable".
Wonder how much $$$ an MRI is for patients not going through insurance. There is a facility by me that apparently gives discounted rates for such situations. Although I have insurance getting a MRI from a different facility may be beneficial at this point, Such as starting on a clean slate.
I hope your insurance situation works out. Actually watched the news last night and there was a resident of MD trying to register and the website was messed up then asked questions and gave options that did not even pertain to his situation. He was upset because he stated that they had so much time/years to get this together and it seems as if they haven't even done test runs on it. Example: There was an icon of a person with his name next to it, then there was a drop box with choices as to the relationship he is to the other icon on the other side, another person with his name under it. He said there is no option in drop box that states "self".
What frustrates me is that we pay our money to do the work in the grocery store (self checkouts) and the prices just keep going up. Then with the people hired.....ughhhhh......I always say thank you....always.......however, since when are we to thank people for suporting their business....cashiers wait for the customers to say thank you and they say you are welcome.....a little backwards !
Should be interesting to get further testing approved ! We will see what comes of this....if the NS ever graces me with a phone call.
The referring NS office manager called me today and asked when my appt. was....I was like hmmmmmm no idea, have never received one. She was not a happy camper and was going to have her NS call this other one, lol. It can't ever be easy. It's been over a month and can't even get the call to schedule is a bit ridiculous but who am I.
I know there is some insurance stuff going on but honestly know nothing regarding in depth details. The news is so depressing anymore that I don't even watch it. I will just stay in the dark with current events. Kinda like staying in the dark with my health care, LOL....(that was a good one for sure) When I lose my sense of humor I am gonna be doomed !
So basically if we lose work insurance would that make me eligible for medicare/medicaid....then I can get accepted into Dr. Fraser Hendersons office.... :-) JK
The referring NS office manager called me today and asked when my appt. was....I was like hmmmmmm no idea, have never received one. She was not a happy camper and was going to have her NS call this other one, lol. It can't ever be easy. It's been over a month and can't even get the call to schedule is a bit ridiculous but who am I.
I know there is some insurance stuff going on but honestly know nothing regarding in depth details. The news is so depressing anymore that I don't even watch it. I will just stay in the dark with current events. Kinda like staying in the dark with my health care, LOL....(that was a good one for sure) When I lose my sense of humor I am gonna be doomed !
So basically if we lose work insurance would that make me eligible for medicare/medicaid....then I can get accepted into Dr. Fraser Hendersons office.... :-) JK
COMMUNITY LEADER
Yes, it is all over the news...ACA is starting and ALL INS comps must meet the new GOV standard...many with individual private plans (not thru a job) were dropped first...over 5 million are without INS and must use the GOV site to sign up but the site is not secure or working properly....it is all a mess.
They claim those with INS thru work may begin to lose INS come Jan....so we shall see....
Well ur nose is part of ur issue I feel....not sure if u had a leak that sealed or partially sealed....could be a very slow leak as opposed to a faster one b4....
????
Who knows !
Originally I had the leaky nose when this all happened in 2010 for many months.
After I hit the nose, I have not gotten that leaky nose.
Did you say your insurance cancelled you ? Why do insurance companies cancel people. Didn't know they did that.
Originally I had the leaky nose when this all happened in 2010 for many months.
After I hit the nose, I have not gotten that leaky nose.
Did you say your insurance cancelled you ? Why do insurance companies cancel people. Didn't know they did that.
COMMUNITY LEADER
Plus the MRI u had was concentrated on the back/ posterior of the brain...not where u nose is located ...unless u are from a diff world....lol...
Really?....if it is all diff they do not tend to have an issue and it also depends on what type INS u have......I know mine may send an approval but still not pay for a service such as labs....
yeah, possibly....makes the most sense....but I am not a medical professional....
But...I had my Brain MRI w/flow study 4 months after the nose injury. Ahhh, unless you are referring to the scope down the nose that resulted in gagging. I tell you that is when the vertigo (wrong dx) instability issue came in and turning the head gives off horrible dizziness.
Interesting about the bloodwork as there was a time when so many doctors were orderding so much bloodwork from me that it was a weekly basis and the insurance never mentioned a word, lol.
Oh absolutely regarding pain. I have had kidney stones a few times during life and tell you they are horrible. I would much rather endure natural childbirth again anyday then those kidney stones.
So again, are you thinking CSF leak from hitting head in May or from vocal cord dysfunction study in September ?
Interesting about the bloodwork as there was a time when so many doctors were orderding so much bloodwork from me that it was a weekly basis and the insurance never mentioned a word, lol.
Oh absolutely regarding pain. I have had kidney stones a few times during life and tell you they are horrible. I would much rather endure natural childbirth again anyday then those kidney stones.
So again, are you thinking CSF leak from hitting head in May or from vocal cord dysfunction study in September ?
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Not sure what u will be eligible for u would then go on the Gov web site and see what u qualify for....some may qualify for subsidies....lower rates....some medicare/medicaid.....there are a lot of diff plans, and I really do not understand half of the ones available out there....just do not understand y we had to lose one and choose another one....makes no sense...just add what was missing....sigh....
U may want to dip ur toes in and see what is going on so if u r affected at some point it will not be a shock and u will be prepared....
I agree we need to keep a sense of humor, but this INS stuff unfortunately is not funny at all....very depressing...right now I do not think I will be able to keep ne of my Drs either so that has me upset too...not sure I can go to Dr F in Baltimore at this point....
Glad to hear someone called to check on things for u....at least u r not forgotten tottally....