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Reduction in CSF Flow/Need Some Support
Opinions please, from people diagnosed with a reduced CSF flow. And from those who have had surgery because of it. Or anyone who had advice.
I am 61 years old. My Chiari is only 1.5 mm. My last MRI said I have a mild reduction in CSF flow. No syrinx.
I am finding it increasingly more difficult to concentrate and wonder if the mild reduction in CSF flow could be the reason. Or, am I just getting old? I need to make a living, yet I have so much brain fatigue and overall not feeling well, that I am not succeeding.
I am not being productive and even though I need to care, I don't have the energy to. People, like my GP, try to convince me it can't be the Chiari (though I have not talked to him yet about the reduction in CSF flow). Maybe he will change his mind. But it is to the point that I doubt my judgement, wonder if it is mostly depression or just aging.
I am not begging my doctor for pain medication so he is concluding it can't be hydrocephalus. I understand that may be so, since that would have shown on the MRI too, but can the mild lack of CSF flow be causing problems anyway? If so, how?
I have learnt to put up with headaches and don't like meds stronger than Tylenol with codeine, which doesn't work. I do not want to end up dependent on more medications. Can't afford the ones I take!
Sometimes I have the headaches and neck pain for weeks. But even when that goes away I feel in a fog, and get double vision. It is both too hard to take in information and too hard to see. I only read on the computer or iPad now. Reading print is too frustrating to be a pleasure.
I hear words but my brain is usually too slow to process it. It's scary. I keep rewinding the TV and asking people to repeat themselves. This is life changing because I don't like to socialize anymore. It's embarrassing!
Throughout my life I have had periods where I feel in a fog and periods where my head feels relatively clear. I went through times of relatively good health, but never knew what kind of a day it will be. I failed grade nine because I couldn't concentrate but later got a university degree.
So I think I am intelligent, but am afraid that with a lifetime of blocked CSF flow there is brain damage. I don't have a bad gait, urinary problems or numbness consistent with hydrocephalus, thank goodness! But I just feel that my thoughts are too slow to function the way I need to, among other symptoms.
I haven't worked outside of the home for five years now, though I do need an income. Been trying to build a career in a field which I prefer not to mention, working from home. But it takes more energy and concentration than I have and I'm being left behind, as usual.
I would like to know if I am obsessing over this Chiari thing, blaming it for my problems when it might be depression and anxiety. Should I just forget about it and leave well enough alone? Or would surgery help me get my concentration and energy back?
I am 61 years old. My Chiari is only 1.5 mm. My last MRI said I have a mild reduction in CSF flow. No syrinx.
I am finding it increasingly more difficult to concentrate and wonder if the mild reduction in CSF flow could be the reason. Or, am I just getting old? I need to make a living, yet I have so much brain fatigue and overall not feeling well, that I am not succeeding.
I am not being productive and even though I need to care, I don't have the energy to. People, like my GP, try to convince me it can't be the Chiari (though I have not talked to him yet about the reduction in CSF flow). Maybe he will change his mind. But it is to the point that I doubt my judgement, wonder if it is mostly depression or just aging.
I am not begging my doctor for pain medication so he is concluding it can't be hydrocephalus. I understand that may be so, since that would have shown on the MRI too, but can the mild lack of CSF flow be causing problems anyway? If so, how?
I have learnt to put up with headaches and don't like meds stronger than Tylenol with codeine, which doesn't work. I do not want to end up dependent on more medications. Can't afford the ones I take!
Sometimes I have the headaches and neck pain for weeks. But even when that goes away I feel in a fog, and get double vision. It is both too hard to take in information and too hard to see. I only read on the computer or iPad now. Reading print is too frustrating to be a pleasure.
I hear words but my brain is usually too slow to process it. It's scary. I keep rewinding the TV and asking people to repeat themselves. This is life changing because I don't like to socialize anymore. It's embarrassing!
Throughout my life I have had periods where I feel in a fog and periods where my head feels relatively clear. I went through times of relatively good health, but never knew what kind of a day it will be. I failed grade nine because I couldn't concentrate but later got a university degree.
So I think I am intelligent, but am afraid that with a lifetime of blocked CSF flow there is brain damage. I don't have a bad gait, urinary problems or numbness consistent with hydrocephalus, thank goodness! But I just feel that my thoughts are too slow to function the way I need to, among other symptoms.
I haven't worked outside of the home for five years now, though I do need an income. Been trying to build a career in a field which I prefer not to mention, working from home. But it takes more energy and concentration than I have and I'm being left behind, as usual.
I would like to know if I am obsessing over this Chiari thing, blaming it for my problems when it might be depression and anxiety. Should I just forget about it and leave well enough alone? Or would surgery help me get my concentration and energy back?
COMMUNITY LEADER
Have you had a tilt table test? POTS is a related condition with Chiari and can affect BP and other issues.....do look into it....and do not stress out over what you have been told so far....wait to see just what is going on.
Chiari is so capable of changing how our vitals react and are then recorded...so try to relax until you know more.
1 Comments
No I haven't. Guess that will be the next question for my doctor. This gets evermore complicated. Thank you Selma!
This is to Selma and anyone else who might be able to give me advice.
So my doctor decided to send me for a stress test because of my dizziness and lightheadedness. After only two minutes on the treadmill my systolic went to 236 from resting rate of 140 and diastolic fell to 51 from 67.
The cardiologist had to stop the test and told me to have my doctor order a ehcocardiogram stress test to see if it is either hypertension or CAD.
I'm kind of scared. The extreme high and low together are not good, I don't think. That, combined with pathological CSF flow can't be good.
How worried should I be???
So my doctor decided to send me for a stress test because of my dizziness and lightheadedness. After only two minutes on the treadmill my systolic went to 236 from resting rate of 140 and diastolic fell to 51 from 67.
The cardiologist had to stop the test and told me to have my doctor order a ehcocardiogram stress test to see if it is either hypertension or CAD.
I'm kind of scared. The extreme high and low together are not good, I don't think. That, combined with pathological CSF flow can't be good.
How worried should I be???
COMMUNITY LEADER
Not necessarily less invasive....as you said it was years ago, so it would be the same surgery....if the leak healed but the tonsils remained herniated.
If it is just a leak, then maybe a blood patch would work...not sure it depends on if it is a single source leak or a multi source leak....none of this is easy....lol...
It's odd how a recent CSF leak has much more severe symptoms then one that develops over time.....and the one that develops over time can take longer to detect.
Thanks Selma. Definitely something more to think about.
I DO have a CSF obstruction, but I still do not understand if that means I HAVE to have surgery. I am guessing so, but whether this NS will think so is another thing.
I hope the neurologist, or radiologist, who called it chiari malformation knew what they were talking about.
My trauma injuries took place decades ago so I guess the tonsils are not going back on their own, if that was the cause. But, if the herniation is caused from just a CSF leak, then that would be a different, and I am assuming, less-invasive surgery. Would it not? Just repairing the leak and not having to widen the skull?
I DO have a CSF obstruction, but I still do not understand if that means I HAVE to have surgery. I am guessing so, but whether this NS will think so is another thing.
I hope the neurologist, or radiologist, who called it chiari malformation knew what they were talking about.
My trauma injuries took place decades ago so I guess the tonsils are not going back on their own, if that was the cause. But, if the herniation is caused from just a CSF leak, then that would be a different, and I am assuming, less-invasive surgery. Would it not? Just repairing the leak and not having to widen the skull?
COMMUNITY LEADER
There is a way they can tell when they review your MRI if the area is smaller then it should be......I am not sure exactly but that is how it was explained to me.
Drs assume it is Chiari by the size of herniation when Chiari is in fact a malformation of the skull, the herniation is a result of the area being too small....so to say I have Chiari bcuz I have a 5mm herniation or larger is just ludicrous.
If you do not have a CSF obstruction, surgery will do nothing but put you thru a major trauma......
When it is acquired Chiari...low lying tonsils due to an injury or blunt force trauma, many times the tonsils retract on their own....but if not, surgery is still often an option when the tonsils are obstructing flow.....
I hope that helps.
Well, my GP is inept at even listening to me when I mention EDS or CSF leak. I have mentioned them and he just stares at me with crickets playing in the background lol. So I feel lucky just to be seeing the wrong kind of NS at this point.
I guess I will make another appointment with my GP and attempt another discussion about these two possibilities, as I do suspect EDS because of my hypermobile wrists, hips and toe, not to mention my neck feels unstable and I was rather bendy as a kid. I just get really upset when I see him now.
And also I have read about CSF leaks, that it could cause fluid to pour out of your nose when you bend over a certain way, and this has happened about 1/2 dozen times though I didn't have any congestion or allergies, it totally surprised me. So I got to thinking that maybe I don't have a malformed skull and the tonsils are a result of something else.
I did have headaches as a small child but maybe something happened. Apparently I was walking at one years old, but suddenly stopped for several months.
Also when I was around 14 I fell through the roof of a barn into a concrete pig stall flat on my back. That really hurt but I never went to a doctor about it. Then I was in two car accidents, once, in the backseat, rear-ended on the highway so that the back end of the car was smashed in like a fan and sent us spinning all over the highway. My neck was stiff for a few days after.
Another time in my early twenties the driver lost control and we skid into a ditch and smashed the windshield with our heads and I think I lost consciousness for a few seconds and had a mild concussion. I had glass removed from my head and arm but the doctor said nothing about a concussion.
Never had a lumbar puncture.
So my question is, do you know how they determine if your skull is actually deformed. Maybe they just assume when they see a herniation? So in that case, making more room for the tonsils could be a big mistake, could it not???
I guess I will make another appointment with my GP and attempt another discussion about these two possibilities, as I do suspect EDS because of my hypermobile wrists, hips and toe, not to mention my neck feels unstable and I was rather bendy as a kid. I just get really upset when I see him now.
And also I have read about CSF leaks, that it could cause fluid to pour out of your nose when you bend over a certain way, and this has happened about 1/2 dozen times though I didn't have any congestion or allergies, it totally surprised me. So I got to thinking that maybe I don't have a malformed skull and the tonsils are a result of something else.
I did have headaches as a small child but maybe something happened. Apparently I was walking at one years old, but suddenly stopped for several months.
Also when I was around 14 I fell through the roof of a barn into a concrete pig stall flat on my back. That really hurt but I never went to a doctor about it. Then I was in two car accidents, once, in the backseat, rear-ended on the highway so that the back end of the car was smashed in like a fan and sent us spinning all over the highway. My neck was stiff for a few days after.
Another time in my early twenties the driver lost control and we skid into a ditch and smashed the windshield with our heads and I think I lost consciousness for a few seconds and had a mild concussion. I had glass removed from my head and arm but the doctor said nothing about a concussion.
Never had a lumbar puncture.
So my question is, do you know how they determine if your skull is actually deformed. Maybe they just assume when they see a herniation? So in that case, making more room for the tonsils could be a big mistake, could it not???
COMMUNITY LEADER
I have to ask, did they rule out a CSF leak? EDS?
Many times we are told Chiari due to there being a cerebral tonsil herniation, but Chiari is the malformation of the skull ...the herniation can occur due to several reasons.....
If you ever had an injury/bulging disks, have EDS, or had a lumbar puncture you could have developed a CSF leak which can pull those tonsils down.....
Absolutely! You were so fortunate. I wish there was a universal health care system where everyone who needed it could go to TCI but I know how complicated that all is.
At least there are organizations out there trying to raise awareness. But we do need more institutions like TCI available in other countries.
At least there are organizations out there trying to raise awareness. But we do need more institutions like TCI available in other countries.
COMMUNITY LEADER
I am just glad I had TCI to go to and my medical INS covered most of it....cuz I am not rich either....
It's so sad that there are not more Drs educated and experienced with Chiari and related conditions and that all NS's think that bcuz they are a NS they can do any surgery on the head/brain.....sigh.
All you can do is ask them if/when they say they are not sure they can help.....
That is an interesting idea! I do think I have to be really careful not to accidentally insult anyone though. Not sure how they would take it.
They are all so incredibly busy with patients a lot worse off than me. The surgeon I want to see performs miracles with people who have had terrible head trauma from car accidents etc. So maybe I am not sick enough for someone like him. He is concentrating on research doing new high-tech minimally-invasive techniques on the spine. He lists chiari on his website, but I wonder who many he has done.
But the surgeon I've been referred to on the other hand specializes in brain tumours.
Wish we had an institute dedicated just to chiari like NY. If I were rich I would go there.
They are all so incredibly busy with patients a lot worse off than me. The surgeon I want to see performs miracles with people who have had terrible head trauma from car accidents etc. So maybe I am not sick enough for someone like him. He is concentrating on research doing new high-tech minimally-invasive techniques on the spine. He lists chiari on his website, but I wonder who many he has done.
But the surgeon I've been referred to on the other hand specializes in brain tumours.
Wish we had an institute dedicated just to chiari like NY. If I were rich I would go there.
COMMUNITY LEADER
Yes I did...and so glad I choose to go up there as there were no Drs around here that knew anything about Chiari or related conditions....I even drove down to Philly and still no help....so NY was the best option for me.
I really liked the Dr assigned to me too....he was very personable...and caring...he explained everything to me and my hubby in detail....
I wonder if your Drs up there would be willing to call a Dr like one at TCI in NY for a consult to get more info??
That is certainly becoming evident Selma. So sorry you had to go through so much before you got the right help.
I wish that I had pursued this more 13 years ago when first diagnosed and not listened to that neurologist who didn't check my CSF flow or spine.
This NS I am seeing hasn't asked for lumbar or thoracic MRI's, so I am not expecting the visit in June to be very productive. If I go all the way down there (two hours) to be told to see a geriatrician I am going to be very upset. My blood pressure goes way up now when I go to these appointments lol.
I wanted to ask you Selma. Did you go to the Chiari Institute in NY? They seem to be the best place. I honestly don't think we have much here and would have thought we would have something similar near Toronto. My doctor told me there is no way our Ontario Health Care Plan would pay for me to go to NY, not unless there wasn't a single doctor who could do the operation. But I doubt anyone here would have the same experience. Sigh.
I wish that I had pursued this more 13 years ago when first diagnosed and not listened to that neurologist who didn't check my CSF flow or spine.
This NS I am seeing hasn't asked for lumbar or thoracic MRI's, so I am not expecting the visit in June to be very productive. If I go all the way down there (two hours) to be told to see a geriatrician I am going to be very upset. My blood pressure goes way up now when I go to these appointments lol.
I wanted to ask you Selma. Did you go to the Chiari Institute in NY? They seem to be the best place. I honestly don't think we have much here and would have thought we would have something similar near Toronto. My doctor told me there is no way our Ontario Health Care Plan would pay for me to go to NY, not unless there wasn't a single doctor who could do the operation. But I doubt anyone here would have the same experience. Sigh.
COMMUNITY LEADER
I do understand your frustration.....I had a drop attack and needed 2 surgeries to correct the injuries from the fall...and the drop attacks are Chiari related but I went to so many Drs and they failed to relate them or think I needed help with the Chiari....2 yrs after that fall I finally had surgery....the medical profession move like snails.
It turns out it was Dr. Ginsberg who did surgery for stenosis on my cousin, and he is recovering very well.
However after the other doctor at St. Mikes suggested I see a geriatrician, My GP contacted Dr. Ginsberg who declined to take me on as his patient. He is too backed up with patients to be able to see me in a timely manner. My GP read his letter to me over the phone, so I may not be quite understanding the reason and will have to get a copy of the letter.
So now the original NS, the one who said I should see a geriatrician has agreed to see me. I am not feeling very good about that. I have to wait until June 9th to see someone who I am afraid doesn't know much about chiari so more time is being wasted.
My GP agreed that a blocked CSF flow is urgent. NOT an emergency though. If it were 100% block then it would be. He told me to drive down to St. Mikes 2 hours from here if I got worse.
However after the other doctor at St. Mikes suggested I see a geriatrician, My GP contacted Dr. Ginsberg who declined to take me on as his patient. He is too backed up with patients to be able to see me in a timely manner. My GP read his letter to me over the phone, so I may not be quite understanding the reason and will have to get a copy of the letter.
So now the original NS, the one who said I should see a geriatrician has agreed to see me. I am not feeling very good about that. I have to wait until June 9th to see someone who I am afraid doesn't know much about chiari so more time is being wasted.
My GP agreed that a blocked CSF flow is urgent. NOT an emergency though. If it were 100% block then it would be. He told me to drive down to St. Mikes 2 hours from here if I got worse.
Does anyone know if dizziness can become permanent as a result of neurological damage? My dizziness, weakness and staggering is getting worse still and I am worried it will become permanent. (Maybe I am having a stroke? Probably being a hypochondriac.) Have never felt like this. So tired. My BP was 180 over something the first time she tested it at the doctor's office the other day while I was talking, but the second time was 160 over something.
I almost feel like I have MS too. Yesterday my left hand on the outer side felt like I had bruised it, very tender. Then this spread to half my hand and up the outside of my arm. Even washing my hands was painful. The end of my fingers went tingly and now today the tips of my middle to baby finger feel like they have frostbite. I have had this before but not as severe. And my arms both feel weak.
Also, I've noticed that when I take a shower the muscles in my legs feel a bit weak and kind of numb on the inside. Is that a chiari symptom?
Just wondering if this is my chiari, my cervical stenosis or something else that might need attention. Anyone else have these symptoms?
I almost feel like I have MS too. Yesterday my left hand on the outer side felt like I had bruised it, very tender. Then this spread to half my hand and up the outside of my arm. Even washing my hands was painful. The end of my fingers went tingly and now today the tips of my middle to baby finger feel like they have frostbite. I have had this before but not as severe. And my arms both feel weak.
Also, I've noticed that when I take a shower the muscles in my legs feel a bit weak and kind of numb on the inside. Is that a chiari symptom?
Just wondering if this is my chiari, my cervical stenosis or something else that might need attention. Anyone else have these symptoms?
I always have to get a referral from my GP for any kind of specialist, here in the U.S. Sometimes,(ok, in my experience, it's been like that&I've been sent to countless specialists in my time,( just as we, the Chiari Community know all too well!) & it can takes months to get in w/said specialist...after the referral has even gone through 1st. though (and of course, can't make an appt. until it's "approved")! It can be such a hassle & a test of patience!
I hope you guys keep pushing along! If our engine fails, we'll help each other chug-chug-chug along! ;)
~emme~
I hope you guys keep pushing along! If our engine fails, we'll help each other chug-chug-chug along! ;)
~emme~
My cousin's daughter's husband also had surgery for stenosis at St. Mike's. I think if I recall correctly it was Dr. Ginsberg. His surgery was also successful last I heard. I will contact him and let you know.
Hi, so sorry to hear about your situation!! I can't really help but thought o would mention that I saw Dr. Loch McDonald at St. Mikes. my NL is Dr. Mahar. He has referred me twice to St Mikes and my symptoms at the time were minimal. I probably had more anxiety symptoms than Chiari. (Things might be changing now...still not sure, but thanks to a great GP, all symptoms are being checked out.
I don't know how we know, in Canada, who is the best specialist in this field. All we know is that St. Mikes specializes in brain/trauma. Dr McDonald did do neck surgery on a friend of ours after having a terrible chiropractor incident. It was very successful. It wasn't Chiari, however, but he did tell us he's done hundreds of Chiari surgeries. Whe else do we go when we live here?? They must do plenty of Chiari surgeries due to that fact. Dr McDonald is also listed on the chair.ca site. (Not sure I have that site name correct but will check it out for you). That's all I can tell you. I hope you get the help you deserve soon!!!
I don't know how we know, in Canada, who is the best specialist in this field. All we know is that St. Mikes specializes in brain/trauma. Dr McDonald did do neck surgery on a friend of ours after having a terrible chiropractor incident. It was very successful. It wasn't Chiari, however, but he did tell us he's done hundreds of Chiari surgeries. Whe else do we go when we live here?? They must do plenty of Chiari surgeries due to that fact. Dr McDonald is also listed on the chair.ca site. (Not sure I have that site name correct but will check it out for you). That's all I can tell you. I hope you get the help you deserve soon!!!
2 Comments
Thank you, I was not aware of Dr. McDonald. My doctor is referring me to Dr. Ginsberg. I found him searching the Internet. He lists chiari as one of his specialties on his website. He was an engineer and has some very advanced surgical techniques, doing spinal surgery without even opening the patient up. So far I am impressed. I'll let you know what I think, if I ever get to see him. I know Dr. Mahar as my husband saw him. Did you see on the news that St. Mikes is only taking extreme emergencies right now due to a burst pipe which shut down the ER! Thanks so much!
Yes, I read about him last night. Probably the best choice! My son has a friend who's brother had the surgery in Toronto. I have asked to find out who his doctor was. His surgery was successful. I'll let you know when I find out.
COMMUNITY LEADER
I agree with you 100%...but not all Drs think like we do.....sad really as they could save us time and $$$
Will your medical INS allow you to set up the appointment without a referral....??? I do not require a referral and can call the Dr myself....
The Dr you saw obviously is not a Chiari specialist, so it is a good thing he did what he did...as you would not want a Dr like that doing surgery on you.
2 Comments
I knew he was not a specialist, and was upset that my GP had not gone to the trouble to find one. I had no intention of letting him do surgery, but hoped he would then refer me to a specialist at the same hospital.
I think we need to go through our GP for a referral. Our system is much different in Canada. But I did send an email to the specialist explaining my situation and that my doctor is also writing him. Not sure if that was the right thing to do.
Thank you Selma.
I just don't understand why the NS accepted the referral after seeing my brain MRI, requested the CINE and cervical MRI, read the results saying I have a chiari and blockage, and then suggested a gerontologist. (One that is three hours drive from here as well!)
There is a NS who claims to specialize in Chiari (says so on his website) at that same hospital. They must know each other well. Why wouldn't he refer me to him? It just. makes. no. sense. And, it is highly insulting!
I just don't understand why the NS accepted the referral after seeing my brain MRI, requested the CINE and cervical MRI, read the results saying I have a chiari and blockage, and then suggested a gerontologist. (One that is three hours drive from here as well!)
There is a NS who claims to specialize in Chiari (says so on his website) at that same hospital. They must know each other well. Why wouldn't he refer me to him? It just. makes. no. sense. And, it is highly insulting!
COMMUNITY LEADER
I am so sorry you had this experience and so many of us can relate as it has happened to us as well. And from experience it is bcuz the Dr is not well informed about Chiari and ALL related conditions...
Try to relax...and I know it is easier said then done....but do try.
Just wanted to update on the terrible appointment I had with my GP today.
After waiting six months from the time my GP's referral was accepted by a NS regarding my chiari malformation and after all of the tests that the NS specifically requested were completed and sent, the NS sent my GP a short letter suggesting he refer me to a geriatric doctor of internal medicine!!!
Even my doctor is livid and doesn't understand why. He wrote him a letter asking why a 61 year old in otherwise good health would have such a referral. Meanwhile he is trying to expedite getting me into a see a NS who is a Chiari specialist.
While waiting my symptoms got worse. I was in tears at the doctor's office and so upset I thought I was going to pass out. My blood pressure was higher than it has ever been. I can't understand why this happened. I am NOT elderly!!!
I think the NS's assistant must have made a mistake, or he doesn't even know what a chiari is or... I just can't make sense of it. I am worried that the MRI is suggesting to this NS that I have dementia. Perhaps because of signs of NPH. But surgery would be the solution then, wouldn't it, not a geriatric doctor???
My doctor admitted that sometimes there can be pressure even when the ventricles are not enlarged. Meaning that I probably do have ICP. And my endo yesterday said the flattened pituitary is a sign of it.
So all this time is being wasted while permanent damage may be taking place. I feel like my life is over.
After waiting six months from the time my GP's referral was accepted by a NS regarding my chiari malformation and after all of the tests that the NS specifically requested were completed and sent, the NS sent my GP a short letter suggesting he refer me to a geriatric doctor of internal medicine!!!
Even my doctor is livid and doesn't understand why. He wrote him a letter asking why a 61 year old in otherwise good health would have such a referral. Meanwhile he is trying to expedite getting me into a see a NS who is a Chiari specialist.
While waiting my symptoms got worse. I was in tears at the doctor's office and so upset I thought I was going to pass out. My blood pressure was higher than it has ever been. I can't understand why this happened. I am NOT elderly!!!
I think the NS's assistant must have made a mistake, or he doesn't even know what a chiari is or... I just can't make sense of it. I am worried that the MRI is suggesting to this NS that I have dementia. Perhaps because of signs of NPH. But surgery would be the solution then, wouldn't it, not a geriatric doctor???
My doctor admitted that sometimes there can be pressure even when the ventricles are not enlarged. Meaning that I probably do have ICP. And my endo yesterday said the flattened pituitary is a sign of it.
So all this time is being wasted while permanent damage may be taking place. I feel like my life is over.
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