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Can surgery help someone who has gone undiagnosed for 61 years?
Hi Everyone,
I am a 61 year old woman who was told I had a Chiari Malformation about ten years ago by a neurologist, but he said it was not causing my symptoms, and even if it was, surgery would make it worse. My doctor had sent me for an MRI due to MS-like symptoms.
Well, good old Mr. Google has finally given me an education thank goodness. And though I've been warned by well-intentioned family members to be careful what I read, the internet has helped me many times. I diagnosed my Hashimotos and that I needed T3 as well as T4 for instance, at a time I was spiraling downhill. My doctor was clueless, but the endocrinologist he sent me to is great and I have gotten much better taking Cytomel as well as Synthroid.
But, back when I heard I had CM, reading about the surgery scared me and I didn't want to have anything to do with it. I did not trust it, hearing peoples awful stories. So I decided to believe that neurologist, and forgot about the diagnoses for ten years.
However, my health has been getting worse. Chronic fatigue has always been a major problem and I haven't been able to work for a while now. Had headaches since childhood which come and go but they have come back lately with bad neck pain and a whooshing sound in my head with my heartbeat.
About five years ago I developed extreme pruritus, bee sting like sensations all over my body, burning under my skin, sometimes feeling like I have glass chards in my skin and this usually makes me feel nauseated. I believe that food sensitivities can cause this and possibly getting a virus, but I also wonder if it is Chiari related. It is so bad now that I would do anything to get rid of it, but no medications work, and I don't want to live on meds. Your body eventually develops a dependency and you get side effects and end up worse off.
I also have been getting extreme hotflashes for over fifteen years which are getting worse. I change from cold to hot every few minutes and have to constantly throw blankets on and off and I sweat all day long. I don't think this is normal menopause. Tried all kinds of hormones but they didn't work and Premarin gives me hives. I think it might be due to brain stem compression.
Also, I am starting to get a numb feeling and weakness in the muscles in my left leg, and pain in my left arm and tingling in my fingers. This comes and goes. I've also had long periods, years, with extreme thirst and having to urinate frequently, but no diabetes. My sense of smell went off, smelling things that were not there, then not smelling things that are there. This is starting to come back to normal, I think though. Also sensitivity to high-pitched noises like keys tinkling. And I have always had a problem with concentration, hearing and ADD which caused me to fail grade nine. Yet later, I managed to get a university degree. But lately I have to keep rewinding what I watch on TV because I forget to listen, or the words are too muffled. And my vision is double, blurry, greyed-out sometimes.
I believe that in my teens and twenties I suffered from hydrocephalus because aside from the headaches, I felt this pressure in my head and I couldn't think, and my vision would go gray. No one believed me so I wasn't tested for it. Maybe I am wrong. How can I tell if I have it now?
So, I asked my new doctor for a follow-up MRI, and now it turns out that a very highly commended neurosurgeon in Toronto wants to see me. My doctor fought with three neurologists first, to get them to see me, but they all refused, saying I need a neurosurgeon. My GP seemed quite surprised. He seems to think that since I've had Chiari all my life, it is no big deal.
He's always treated me like I'm a neurotic, menopausal, nutcase who "should pull up my socks and get back to work because going on disability is one foot in the coffin". He said that this neurosurgeon is very picky about who he will see, but for some reason wants to see me. First I have to do another MRI of my cervical spine and I think it is also a CINE MRI at the same time. Have you heard of them being done together? Because I don't quite trust that they know what they are doing when they set up the appointments. I cancelled the brain MRI, because I already had one and what is the point of two of them within a few months? I go January 13th.
Thanks to your extremely informative forum here, I have learned so much! I did not think I had EDS, but after reading about it, I suspect I do now, since I had ganglion cysts on both wrists in my teens, and now my wrists slip out so easily it is hard to lift a pot or do much physical work with them, as does my thumb, big toe and sometimes my hips. My jaw used to lock up on me until I became vegetarian--the food is easier to chew. But I can't do that anymore, have started eating meat again because of so many food sensitivities there is little choice left for me.
Because I have had such a time with fatigue, depression and anxiety plus everything else over the years it has been hard to keep working. Four years was the longest I could do but I have worked on and off and do my best to make money. Now I am suffering financially but could not live on disability because, due to my extreme environmental sensitivities, I need to rent a clean, newish, detached home. I tried a townhome and the smoke from other tenants made me totally sick. I simply can't do an apartment. My 69 year old husband is doing his best to work part time to keep us in a house, but I worry about the future. I don't know how people on disability survive when they are forced to live in terrible housing with such a small income!
I appreciate any advice and thank you for reading this long post. Right now I am thinking that even if surgery is recommended I will not do it, because I am terrified of making things worse at my age. But at the same time, my new symptoms, the numbness etc. has me really worried too. I only have my husband and not a good support system for a long recovery. My family lives far away.
Thank you again for this wonderful forum!!!
I am a 61 year old woman who was told I had a Chiari Malformation about ten years ago by a neurologist, but he said it was not causing my symptoms, and even if it was, surgery would make it worse. My doctor had sent me for an MRI due to MS-like symptoms.
Well, good old Mr. Google has finally given me an education thank goodness. And though I've been warned by well-intentioned family members to be careful what I read, the internet has helped me many times. I diagnosed my Hashimotos and that I needed T3 as well as T4 for instance, at a time I was spiraling downhill. My doctor was clueless, but the endocrinologist he sent me to is great and I have gotten much better taking Cytomel as well as Synthroid.
But, back when I heard I had CM, reading about the surgery scared me and I didn't want to have anything to do with it. I did not trust it, hearing peoples awful stories. So I decided to believe that neurologist, and forgot about the diagnoses for ten years.
However, my health has been getting worse. Chronic fatigue has always been a major problem and I haven't been able to work for a while now. Had headaches since childhood which come and go but they have come back lately with bad neck pain and a whooshing sound in my head with my heartbeat.
About five years ago I developed extreme pruritus, bee sting like sensations all over my body, burning under my skin, sometimes feeling like I have glass chards in my skin and this usually makes me feel nauseated. I believe that food sensitivities can cause this and possibly getting a virus, but I also wonder if it is Chiari related. It is so bad now that I would do anything to get rid of it, but no medications work, and I don't want to live on meds. Your body eventually develops a dependency and you get side effects and end up worse off.
I also have been getting extreme hotflashes for over fifteen years which are getting worse. I change from cold to hot every few minutes and have to constantly throw blankets on and off and I sweat all day long. I don't think this is normal menopause. Tried all kinds of hormones but they didn't work and Premarin gives me hives. I think it might be due to brain stem compression.
Also, I am starting to get a numb feeling and weakness in the muscles in my left leg, and pain in my left arm and tingling in my fingers. This comes and goes. I've also had long periods, years, with extreme thirst and having to urinate frequently, but no diabetes. My sense of smell went off, smelling things that were not there, then not smelling things that are there. This is starting to come back to normal, I think though. Also sensitivity to high-pitched noises like keys tinkling. And I have always had a problem with concentration, hearing and ADD which caused me to fail grade nine. Yet later, I managed to get a university degree. But lately I have to keep rewinding what I watch on TV because I forget to listen, or the words are too muffled. And my vision is double, blurry, greyed-out sometimes.
I believe that in my teens and twenties I suffered from hydrocephalus because aside from the headaches, I felt this pressure in my head and I couldn't think, and my vision would go gray. No one believed me so I wasn't tested for it. Maybe I am wrong. How can I tell if I have it now?
So, I asked my new doctor for a follow-up MRI, and now it turns out that a very highly commended neurosurgeon in Toronto wants to see me. My doctor fought with three neurologists first, to get them to see me, but they all refused, saying I need a neurosurgeon. My GP seemed quite surprised. He seems to think that since I've had Chiari all my life, it is no big deal.
He's always treated me like I'm a neurotic, menopausal, nutcase who "should pull up my socks and get back to work because going on disability is one foot in the coffin". He said that this neurosurgeon is very picky about who he will see, but for some reason wants to see me. First I have to do another MRI of my cervical spine and I think it is also a CINE MRI at the same time. Have you heard of them being done together? Because I don't quite trust that they know what they are doing when they set up the appointments. I cancelled the brain MRI, because I already had one and what is the point of two of them within a few months? I go January 13th.
Thanks to your extremely informative forum here, I have learned so much! I did not think I had EDS, but after reading about it, I suspect I do now, since I had ganglion cysts on both wrists in my teens, and now my wrists slip out so easily it is hard to lift a pot or do much physical work with them, as does my thumb, big toe and sometimes my hips. My jaw used to lock up on me until I became vegetarian--the food is easier to chew. But I can't do that anymore, have started eating meat again because of so many food sensitivities there is little choice left for me.
Because I have had such a time with fatigue, depression and anxiety plus everything else over the years it has been hard to keep working. Four years was the longest I could do but I have worked on and off and do my best to make money. Now I am suffering financially but could not live on disability because, due to my extreme environmental sensitivities, I need to rent a clean, newish, detached home. I tried a townhome and the smoke from other tenants made me totally sick. I simply can't do an apartment. My 69 year old husband is doing his best to work part time to keep us in a house, but I worry about the future. I don't know how people on disability survive when they are forced to live in terrible housing with such a small income!
I appreciate any advice and thank you for reading this long post. Right now I am thinking that even if surgery is recommended I will not do it, because I am terrified of making things worse at my age. But at the same time, my new symptoms, the numbness etc. has me really worried too. I only have my husband and not a good support system for a long recovery. My family lives far away.
Thank you again for this wonderful forum!!!
COMMUNITY LEADER
Surgery would depend on your symptoms....a small restriction of CSF flow can change at any time....and create a more substantial obstruction and symptoms.....
Keep a journal of your symptoms....if they change or increase then talk with your Dr....it could indicate a change in the obstruction.
OA is the most common form of arthritis due to age and wear and tear...if you had EDS then I would say it may have a bigger impact on you since EDS affects the connective tissues....
No worries ask what ever you feel a need to...if I do not know someone else here may be able to help....this is how we all learn <3
Thank you Selma!
I guess my main question is, if the CINE MRI is showing only a mild reduction in CSF flow, do you think that means I should have surgery? There is no syrinx or fluid buildup showing on the MRI's.
My chiari is only 1.5 mm.
One last question. Is osteoarthritis a related condition? The cervical MRI showed osteoarthritis changes. Could that cause the headaches that go all the way to my forehead and around my eyes?
So sorry for all the questions. It seems impossible to find the answers. Appreciate your time very much.
Susan
I guess my main question is, if the CINE MRI is showing only a mild reduction in CSF flow, do you think that means I should have surgery? There is no syrinx or fluid buildup showing on the MRI's.
My chiari is only 1.5 mm.
One last question. Is osteoarthritis a related condition? The cervical MRI showed osteoarthritis changes. Could that cause the headaches that go all the way to my forehead and around my eyes?
So sorry for all the questions. It seems impossible to find the answers. Appreciate your time very much.
Susan
COMMUNITY LEADER
There is a way in settings to set up alerts via e-mail.....go to your profile page then click on account settings....
It does sound like EDS may be a possibility for you....those with EDS tend to have more "allergies" or reject foreign matter this is why knowing is so very important b4 surgery as the patch used during surgery to close the dura will need to be tissue harvested from the patient and not one of the standby items...bovine, cadaver or synthetic.....
...and it sounds like you need a Dr well informed and experienced with Chiari as all the ones uninformed seem to look at us like that...lol...You will want a true Chiari specialist and that does not mean a NS that has done a few decompression's on those with Chiari it means a Dr that knows ALL related conditions and how they can affect you should you have surgery.
Hydro would make you need more meds that is true....however having Chiari will cause some CSF to build up and cause pressure...this is why the decompression surgery is done to restore CSF flow.....a shunt should not be needed if this is done correctly and you are not over producing CSF.
Hi Selma,
I am sorry I didn't see your reply until now, but thank you! I am not sure what I had back then but it was in a machine, so I am thinking it was a CT scan.
Is there something I am supposed to be doing in order to get an email notice of replies to my thread?
Thanks,
Susan
I am sorry I didn't see your reply until now, but thank you! I am not sure what I had back then but it was in a machine, so I am thinking it was a CT scan.
Is there something I am supposed to be doing in order to get an email notice of replies to my thread?
Thanks,
Susan
Finally got my results of CINE MRI and Cervical Spine MRI read to me over the phone today. I have a mild reduction in CSF flow consistent with the Chiari Malformation plus I have osteoarthritis changes.
My question is would a mild reduction in flow cause symptoms, which I've been having all my life? Lack of concentration, pounding whooshing headaches, chronic fatigue, bad memory, learning problems to name a few? Would it cause mild hydrocephalus? If I have hydrocephalus would it say so on the report? That is all it said. Does reduced flow mean hydrocephalus.
My doctor said after the MRI's this NS, Dr. Cusimano at St. Mike's hospital in Toronto wants to see me. He has a great reputation, but he is not a Chiari Specialist. Do I waste my time going to see him and then ask for a referral to the doctor at the same hospital, Dr. Ginsburg, who is a Chiari specialist?
Maybe I shouldn't bother to go at all, if it is only a mild reduction in flow. I certainly don't want surgery at 61 years old if it won't help or make matters worse.
I am afraid I would reject a shunt because I am very sensitive to plastics and other materials. My glasses bother to the point where I can't wear them leaving me nearly blind.
I am having a lot of problem with my wrists (think it is subluxation) and wonder if I do have EDS. Had Ganglion Cysts (which is apparently a sign of EDS) as a teenager and other joints slips out too, thumb, toe, hip. My doctor just stares at me when I tell him these things. He said if I had hydrocephalus I would be begging him for drugs and wouldn't care about anything else. Well, I am afraid of the side effects of drugs from personal experience, so I've learned to suffer.
Thanks for any advice!
Susan
My question is would a mild reduction in flow cause symptoms, which I've been having all my life? Lack of concentration, pounding whooshing headaches, chronic fatigue, bad memory, learning problems to name a few? Would it cause mild hydrocephalus? If I have hydrocephalus would it say so on the report? That is all it said. Does reduced flow mean hydrocephalus.
My doctor said after the MRI's this NS, Dr. Cusimano at St. Mike's hospital in Toronto wants to see me. He has a great reputation, but he is not a Chiari Specialist. Do I waste my time going to see him and then ask for a referral to the doctor at the same hospital, Dr. Ginsburg, who is a Chiari specialist?
Maybe I shouldn't bother to go at all, if it is only a mild reduction in flow. I certainly don't want surgery at 61 years old if it won't help or make matters worse.
I am afraid I would reject a shunt because I am very sensitive to plastics and other materials. My glasses bother to the point where I can't wear them leaving me nearly blind.
I am having a lot of problem with my wrists (think it is subluxation) and wonder if I do have EDS. Had Ganglion Cysts (which is apparently a sign of EDS) as a teenager and other joints slips out too, thumb, toe, hip. My doctor just stares at me when I tell him these things. He said if I had hydrocephalus I would be begging him for drugs and wouldn't care about anything else. Well, I am afraid of the side effects of drugs from personal experience, so I've learned to suffer.
Thanks for any advice!
Susan
COMMUNITY LEADER
I was a teen in the 70's as well and they didn't do MRI's back then...not sure how you were able to get one...lol....I didn't get a CT, xray nothing....and all they would tell me is I didn't have a brain tumor ( they have x ray vision to tell) and I wasn't going to die....lol...not sure where they got the info from since no testing was ever done on me at that age.......
As to getting a copy...contact the location the testing was done, it will be on micro film now...so it may take a few weeks to get....but worth the try.
Hi, are you north of T.O.? I am. I've seen a couple neurosurgeons at St. Michaels hospital. I am 53. I've had very little symptoms until recently (October). Dizziness, fatigue and aches and pains seem to be my norm lately. I would like to keep in touch, as I'm sure that we could possibly see the same doctors. Good luck with your visit! H
1 Comments
Hi, yes I am north of T.O. I am seeing Dr. Cusimano at St. Mikes, but don't have an appointment yet. He has very high reviews but I am not sure if he specializes in Chiari. Was surgery recommended for you?
I recently found some of my old medical records. I went to many neurologists when I was 12-14 that told me I was just depressed and wanted to get out of school.
Because you haven't had a surgical intervention ... I would wonder what is permanent damage and what isn't. For me. My neurosurgeon told me up front ... he couldn't promise symptoms I had for over a decade would go away ... and some didn't. I don't want to sound discouraging. But your more recent symptoms could possibly be helped!
I HATE! that as women, no matter what age, we are so often discarded as hysterical humans that have no idea what is wrong with our bodies.
Definitely listen to Selma! she is our treasure trove here! I wish I would have paid more attention to testing before any surgery ...... hindsight is 20/20. ;P
Because you haven't had a surgical intervention ... I would wonder what is permanent damage and what isn't. For me. My neurosurgeon told me up front ... he couldn't promise symptoms I had for over a decade would go away ... and some didn't. I don't want to sound discouraging. But your more recent symptoms could possibly be helped!
I HATE! that as women, no matter what age, we are so often discarded as hysterical humans that have no idea what is wrong with our bodies.
Definitely listen to Selma! she is our treasure trove here! I wish I would have paid more attention to testing before any surgery ...... hindsight is 20/20. ;P
3 Comments
Thank you for your input, Beat. That is what I am thinking too, that the more recent symptoms might be helped and prevented from getting worse. It's just that the surgery really terrifies me at my age. I don't think I could handle ending up feeling worse after going through the trauma of it. But it would be wonderful to get my healthier self back again so the quality of my life is restored and I could start doing things again. I really wonder what I would be like now if I had had surgery when I was young, (the fatigue and lack of concentration ruined my professional life) maybe my whole life would have been better -- or maybe worse. Scary stuff!
Yes, I remember going to the doctor as a child because of the headaches and him saying to my mom, "look at her she is healthy" referring to the fact I was not skinny. The humiliation continued through my whole life with doctors.
Now that I know I was not a hypochondriac, and that what I have is serious, and think how even my parents and family told me I needed to push myself harder, I sometimes feel a little bitter. But I try not to.
Yes, I remember going to the doctor as a child because of the headaches and him saying to my mom, "look at her she is healthy" referring to the fact I was not skinny. The humiliation continued through my whole life with doctors.
Now that I know I was not a hypochondriac, and that what I have is serious, and think how even my parents and family told me I needed to push myself harder, I sometimes feel a little bitter. But I try not to.
Allow yourself little pity parties. They can be somewhat cathartic, at least for me. But leave the party knowing that there is hope.
I know exactly what you mean, though -- it feels like my life was possibly hijacked ... or even ... stolen from me. Every doctor I saw as an early teen wanted to put me on either anti depressants or anti anxiety meds. I gave up and thought maybe I was just crazy. I have a CT scan from when I was 14. And the chiari is so evident on these scans. It's heart breaking to think of what might have been if a doctor would have just listened. But now I have found a neurosurgeon that is bound and determined to help me any way he can. It's a little late in the game, but I'm still kicking and hoping.
I know exactly what you mean, though -- it feels like my life was possibly hijacked ... or even ... stolen from me. Every doctor I saw as an early teen wanted to put me on either anti depressants or anti anxiety meds. I gave up and thought maybe I was just crazy. I have a CT scan from when I was 14. And the chiari is so evident on these scans. It's heart breaking to think of what might have been if a doctor would have just listened. But now I have found a neurosurgeon that is bound and determined to help me any way he can. It's a little late in the game, but I'm still kicking and hoping.
That is SO heartbreaking. It is easy to be bitter, but I assume they didn't know back then. And I also wonder if it was for the best. They could have made things a lot worse for us, if they were inexperienced.
Maybe I would have been advised not to have children, and that part of my life went quite well. I would have been a lot more worried about pushing out two children, had I known lol.
Working plus raising kids with the headaches, fatigue, anxiety, pain etc. was not easy, but I did it and I am glad!
I remember having some kind of brain imaging in my late teens, which would have been in the early 70's. Maybe it was a CT scan too. Now I am wondering if there is some way to get a copy.
Maybe I would have been advised not to have children, and that part of my life went quite well. I would have been a lot more worried about pushing out two children, had I known lol.
Working plus raising kids with the headaches, fatigue, anxiety, pain etc. was not easy, but I did it and I am glad!
I remember having some kind of brain imaging in my late teens, which would have been in the early 70's. Maybe it was a CT scan too. Now I am wondering if there is some way to get a copy.
COMMUNITY LEADER
I do not think surgery can help with the skin issues you are having....but having a EDS specialist take a look may be helpful as many of us have Mast Cell disease related to EDS...bcuz of this relationship I was put on antihistamines a few yrs back and I deff see a difference with my PND, IBS, Reflux and even sleep better.....but Mast Cell Disease can affect blood vessels....so look into that as well as EDS.
1 Comments
My endo sent me for a 24 hour urine test to test for Mast Cell disease and also Carcinoid Syndrome because of the itching and hot flashes (flushing). I haven't heard anything so assume the results were negative, but will see at my followup. Antihistamines (3 different types for a month) did nothing for the pruritus which is why I feel it must be neurological.
I am wondering Selma, did you have to have spinal fusion due to your EDS? The lack of mobility looks horrific!
I am wondering Selma, did you have to have spinal fusion due to your EDS? The lack of mobility looks horrific!
COMMUNITY LEADER
what I find interesting is I was on thyroid meds b4 surgery and 6 months post op...I was removed from them....my levels are all "normal" now....
You need to have them rule out Ehlers-Danlos....it may help with why your skin hurts
I understand this is a frustrating situation to be in as there are not a lot in the medical profession that actually know enuff to help guide us....
1 Comments
I believe that about your thyroid. There has always been something going on in my throat, some related to the Hashimotos. After taking T3 some of that soreness and the brain fog went away. The hoarseness and the double vision got a lot better, but I still have days of the double vision when my headache is bad. I have what I think is a gland on the right side which is always sore. And the pain in my neck feels like it stems from a tendon which goes up the right side of my head and down my forehead in a line. I have other tendons which get inflamed on the right side of my body, could that be related to EDS? Should I ask my GP to send me to an EDS specialist? Or just wait to see what the NS says? Strangely, I have features like those with Vascular EDS, but I doubt I could have lived until 61 without any ruptures, and I don't bruise easily. I do have many small broken blood vessels but I am sure that is just normal aging. I would just like to get to the bottom of the constant itching, zapping, burning and sore skin all over but nobody seems to have a clue, and now I am wondering if it a rare form of EDS since I do have joints which go out on me and chronic fatigue and Chiari. The skin thing is not easy to live with and it would be nice if surgery would relieve it, but I doubt that.
COMMUNITY LEADER
Deff look into both Drs...some go by the reputation of the Dr and not the specialties....while others look at the name of a clinic or hospital...you want and need your Dr to be well informed and experienced with Chiari and ALL related conditions...and ALL NS's can do this surgery but not all should.
EDS is not a reason to not have surgery it is a reason to make sure your Dr is well experienced and informed so he makes the right decisions for you . Certain precautions when taken can help lessen post op set backs.
I have EDS and had surgery a few months b4 my 50th birthday...and I am doing sooooo much better then b4 surgery.
1 Comments
That is very encouraging, to know that your surgery helped you so much! I cannot believe how tired I have become lately. Even though I am sure I have my thyroid under control, it is a different kind of fatigue. I no longer feel motivated to go out of the house like I used to. Even to go out to a show is too tiring to be worth the effort. I haven't gone out since Dec 27th. That can't be normal. We moved to the beach so we could swim every day in the summer but I barely went this year. My skin hurts like I have the flu all the time. Could that be related to my Chiari? This is why I am so torn about having surgery. My quality of life is going, but I am afraid to make it worse. Thank you for your time Selma. It is much appreciated!
COMMUNITY LEADER
Hi and welcome to the Chiari forum
The Dr that told you surgery could make you worse was half right...it could make you worse IF ALL related conditions were not ruled out and precautions taken and IF you did not research Dr to find a true Chiari specialist.....
Most post op horror stories when all is said and done we find that they have other related conditions which the Dr did not look for or take precautions for. And lastly the Dr was not well experienced with this condition....having done a few surgeries is not the same as well experienced.
A Dr told me not to have surgery ( he did not believe Chiari gave us symptoms) well I found a few other Drs after that...had surgery and am doing so much better.....
Just know you are not alone <3
1 Comments
Thank you Selma. The NS I have been referred to is highly recommended but I see nothing about him doing Chiari surgery, yet at that same hospital there is another highly-recommended NS who specializes in Chiari. Don't know why I would have been referred to the former but I will be diligent in my research. If I turn out to have EDS, does that mean I wouldn't be a good candidate for surgery?
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