First of all, I hope many people get to read this, as I’m sure it will be deleted soon by Scott. Keep reading you will see why…
Look into CSF leaks. After 19 months, I finally was dx with a leak. It was there on the MRI in the beginning, but it was small and it was missed.
CSF Leaks can cause so many issues, even mimicing high pressure. This is misdiagnosed and missed often because most doctors dont understand it very well.
There are two great doc’s to seek out Dr. Schievink- LA and Dr. Gray NC. Do yourself a favor and look outside the box. Especially you all that really feel in your heart that MAV is NOT what you have. I did, but I was told by so many that I have MAV. I quickly realized that there are a few people on here, that think everyone has MAV, and it Just cannot be ANYthing else. Well it can. Migraine is most often the dx given to people with CSF issues.
Also seek out other forums. You dont have to be talked down to for your beliefs, or tagged team by Scott and Victoria. You know Scott and I went rounds… he said some pretty horrible disgusting things. I mean I was in shock! But you will never see it because he went back and edited his post and removed my disrespectful four-letter word posts so he looked like he was a saint and I was crazy. Nice huh. BTW Scott, some people on here DID see what you said, and contacted me thru PM and felt so bad that you did what you did, and horrified by your actions. So it didn’t go completly unnoticed. I’m not the only one though, you should see his posts back and forth with several women on FB. He learned very quickly that they were not going to take his BS.
So if you want to know more about my symptoms or my story… check out all my posts under Kristina or Kayera… I came back even though I was banned because I think I have a lot of information and I do want to help. Lets see how long Scott can stand me. This will be taken down soon I’m sure.
I really do want all of you to feel better, that is why I urge you to seek out ALL possibilities or go for additional MRI’s over time… as things can be missed or get bigger… like mine.
I was wondering- was it the headaches that pointed to you having leaks, or the dizziness? What treatment do you need to fix the leaks? What type of dizzy symptoms did you have? Do you have any trouble with your balance/walking? Best of luck in treating this and feel better!!!
Intermittent headaches. Range from mild to moderate. Sometimes Pain. Sometimes a tightness and OR Pressure.
Felt better if I lay down for a bit. Neck felt weak or Head felt Heavy. Like sometimes I would have to hold my head with my hand.
Dizziness was different types… felt like I was moving at times, or when I moved my head quick I would get a lil dizzy spell.
I also get hypotension now and then when I stand up. Really lightheaded.
Balance is generally good, but I find myself Wobbly at times.
Sometimes I feel like Im sick w/ a fever… but never have a fever.
All of my symptoms are common with leaks.
**** it doesn’t happen often… but some people dont even have a headache. Which is the hallmark symptom.
Very strange what csf leaks can do and how you can fill when you have it where it shouldn’t be.
I went and got a new MRI of my neck… because of the tightness and weakness, that showed the leak.
Also I have pain between my shoulder blades as well… this is common!
ALL the same symptoms of MAV.
Thank you Sarah. I really do hope this helps someone.
Yes, unfortunately I do remember you Kristina,
In the 8 years Adam and I have been running mvertigo (one that he pays for) only 4 people have been banned for being rude and obnoxious pains in the ass on this forum – and you were number 4. Unfortunately forums (and Facebook) attract cranks like you every few years. That other charming group of ladies you referred to on Facebook were banned immediately remember? It was that pack who soon realised that no one would take their BS. I certainly have absolutely nothing to hide and will leave this post here for all to see. You know me – I always call a spade a spade and a crank a crank.
Of course if anyone thinks they could have a CSF leak, get it checked out. Be aware it’s a very rare condition and some here have had it patched (an invasive procedure) only to feel far worse afterwards with no positive effect on their condition.
As for you Kristina aka “Kayera”, we can only hope that patching that leak repairs your personality disorder as well.
If anyone wants to follow up with her, you’ll find her ranting away on the MAV Facebook page. Be aware that she believes half of the members here are “brain washed”. Enjoy.
I thought it was worth revisiting the statistics on this before someone suddenly freaks out thinking they may have a CSF leak (easy to think these sorts of things I know as some of us have struggled to get an answer).
Kristina (Kayera) wrote on Facebook today, “I need to correct Scott as he is wrong. CSF leaks are not RARE”.
A simple search of the literature reveals this as more misinformation. The exact opposite is true.
[size=130]Spontaneous spinal cerebrospinal fluid leaks and intracranial hypotension[/size]
In one year about 5 in 100,000 people will develop this problem or 0.005%. We already know that Meniere’s Disease is rare and that affects 200 people per 100,000 or about 0.2%.
Conversely, migraine affects 16% of women. In other words, if you are a dizzy female for some unexplained reason (ruled out BPPV etc) then you are 3,600 times more likely to be suffering from migraine than a CSF leak. CSF leaks are in fact extremely RARE. Keep that in mind.
I am another leaker, and also a few others have contacted me because of my story and have found out that they too had a leak and have gotten a diagnosis and help.
I got the diagnosis of MAV at least 4 different times. And so right there, 4 wrong doctors.
If you have a CSF leak, or if you have CSF hypertension, there is about a 95% chance that your first diagnosis would be a migraine because most doctors just don’t understand it. Especially when the presentation is with dizziness. Because dizzy people dont usually like change of position and the first thing docs ask is do you feel better if you lie down. Well I would always say no to that because the act of going from sitting to lying would make be feel more dizzy for a short time until it settled. However, I was always much better in the morning, so lying down did help me recover, and then I would get worse throughout the day!
For people with any of the following complicating issues or scenarios, I would urge you to consider CSF leak as a possible diagnosis.
MAV therapies have not helped you to get better or lead a normal life most of the time.
Topamax makes you feel worse (If Topamax helps, but you are sensitive to weather systems, look into intracranial hypertension instead)
If you have any type of connective tissue disorder yourself or in your family
If an injury to your spine precipitated your MAV symptoms
If a lumbar puncture precipitated your symptoms
MAV is a diagnosis of exclusion, if your CSF leak has not been excluded by a doctor who understands CSF leaks, then it is still a possibility.
I hope if you have not found your answer from a MAV diagnosis, that maybe this could be a helpful direction for you to search. Don’t give up trying to help yourself!
Blessings to you all!
Scott, CSF leaks are not as rare as that Statistic would suggest. It is estimated that they are missed in diagnosis 95% of the time. The doctors who specialize in the treatment of CSF leaks and also intracranial hypertension believe that is a very small tip of the iceberg. This is a new area of medical understanding, and most neurologists don’t understand it, but there is movement in that direction. Now in addition to Cedars, Duke and Mayo having specialized care in CSF issues, Johns Hopkins has recently devoted an entire unti to deal with CSF issues. I believe Cleveland clinic as well. The knowledge is growing, but it is slow in medicine, and the docs on the front line are so busy, they are just trying to keep up with patient demand. I wish they would do more publishing.
Inafog – do you have any evidence of this? As in something published by these guys?
I notice that “Kayera” has not yet been treated yet and is convinced that the fluid leak is the cause of her problems based on an MRI. While this is of course possible there’s been other people here that went this route and it either did nothing or made things worse. Are you now cured since being patched?
I have posted this several times. This is one such study. Specifically addresses the issue of daily persistent headache being misdiagnosed.
I have more links on my PC which I will add in a bit
Scott can you do me a favor and add these links to the documents or somewhere that people can find them if they are interested. I am not on here often, but everytime I am you ask me to repost them, so I think there is an interest.
Yes, I’ve seen that paper before but I don’t see how that throws the statistics out the window. Misdiagnosis occurs for all disease states. This is a group of 18 patients.
I note that the hallmark of this condition for most (but not all) is “a headache that occurs or worsens soon after assuming an upright position and disappears or improves after resuming a recumbent position.” Further … " It is an exceptional patient who has no posture-related component to the headache from the onset of symptoms."
There appears to be some good indicators to make one suspect this problem. I cannot recall any on here – to my knowledge – who has written about a posture-related headache.
Here is an excerpt from this article.
Once considered an exceedingly rare disorder, recent evidence suggests that spontaneous intracranial hypotension is not that rare and has to be considered an important cause of new daily persistent headaches, particularly among young and middle-aged individuals. In the past, our knowledge regarding spontaneous intracranial hypotension was derived from case reports only, and no epidemiologic data were available. In a community-based study conducted in 1994, the prevalence of spontaneous intracranial hypotension was estimated at 1 per 50 000.16 In a more recent emergency department–based study (2003-2004),17 spontaneous intracranial hypotension was half as common as spontaneous subarachnoid hemorrhage, for an estimated annual incidence of 5 per 100 000. Comprehensive population-based epidemiologic studies, however, are not yet available. In the past, spontaneous intracranial hypotension was probably more frequently underdiagnosed than it is now, and it is unlikely that there has been an actual increase in its incidence, although that possibility cannot be entirely excluded.
My sure how you do the quote thingy, but this is your quote that I want to comment on:
“Conversely, migraine affects 16% of women. In other words, if you are a dizzy female for some unexplained reason (ruled out BPPV etc) then you are 3,600 times more likely to be suffering from migraine than a CSF leak. CSF leaks are in fact extremely RARE. Keep that in mind.”
I don’t think anyone on this website think that they are anything like the 16% who have migraines. The issue here is chronic daily migraine that persists and is relentless and causes dizziness. That is a very small subset of migraine that end up here, and in a way saying that people here are the same as 16% of the population. That suffers from migraine is a distortion of fact. Daily persistent, headache with dizzy is horrible and rare, and something most people will ever have to endure or experience.
Anyway, I have more articles, and as far as postural, like I said people who have dizzy with CSF leak instead of pain do not recognize the postural component because laying down causes dizzy, if you read further, you will see that postural is not a necessity…the main article that describes this, I can’t get the link right now, but I will add it.
Scott it always surprises me that instead of happiness for people who have figured out what is wrong, you choose to argue the diagnosis. Would you prefer I was still suffering? Isn’t it cool that I was patched and I am back to normal? I was diagnosed by 4 doctors with MAV, I tried their diet, their drugs and I got worse, should I have continued to beat that Dead horse? A leak that goes undiagnosed can cause many problems. I think it is important for people to see this information, since so many who have CSF leak start off with a MAV diagnosis.
You may find it interesting that Dr. Hain is now beginning to diagnose people with CSF problem and referring them to Dr. S, people who previously had MAV diagnosis. I am happy he keeps an open mind and continues to seek out answers for patients.
I’m looking at this as factually as I can in terms of a dizzy person wondering “what is causing this problem”?
Your 5 criteria makes perfect sense to me as it does that a person should also be aware if there headaches are induced by position – that is, sitting up as stated in the article.
However, if there is ambiguity and migraine indicators present that we all know here so well, the chances of it actually being a migraine-based illness based on the statistics far, far outweighs any other cause by massive orders of magnitude.
Have you put this to bed now that it has been treated? Is it absolutely clear that you never had and do not have migraine? Repairing the leak should put you back to normal right?
The point Scott is that I was misdiagnosed many times as MAV.
The. Same could be true for others. Postural is not necessary, especially when dizzy is present.
I’m not sure you take my questioning of a dx as “not being happy for you”. I have no idea what’s wrong with you. We are words on a page. Of course I hope you are well but I am of a science background and therefore question everything. My questioning does not mean that I am not happy for you – I don’t even know if you are 100% well. I hope you are! If the leak was patched and you feel totally normal, then fantastic – you had the leak and that must be what caused or triggered your issue.
— Begin quote from ____
I don’t think anyone on this website think that they are anything like the 16% who have migraines … and in a way saying that people here are the same as 16% of the population. That suffers from migraine is a distortion of fact.
— End quote
This is nonsense. Any migraineur is part of the migraine population, which in epidemiological studies shows clearly about 16% for women and 8% for men. We are in these groups. Period.
EDIT: This thread started on a sour note from a sour person with an axe to grind and has done it’s time. Inafog says she’s 100% again because her CSF leak was patched. Excellent outcome. Done.