Aa
Don’t know what to do..
My symptoms the lightheaded feeling, shortness of breath, and just feeling really unwell and disconnected are getting worse.. Is this signs of progression or worse? I don’t see the neuro until next week but I do have an appointment with my pcp this Thursday. I just don’t know if I can make it till then :(...
Ok guys I’m really worried today. I’m having this really bad full feeling in the back of my head, my hearing is really muffled sounding and my dexterity in my hands is really bad and I’m just not feeling myself :(. I’m so scared this is something serious. Does any of this sound familiar or have you heard other members complain of these things? I’m feeling really like disconnected to....
7 Comments
Please someone respond I hope this isn’t something emergent :(
I’ve also had trouble finding words and slurred speech off and on. I’m so worried :(
I’m also very like this weird throbbing in the back of my head and in my chest too.
I am currently experiencing every single one of the symptoms you just described.
I don't always go into the sort of detail that I am about to share with you, but I want you to know the things you are experiencing are common for our condition.
Admittedly, I don't know your pain levels, and I know people experience things differently, so all of this may well be more severe in your case.
I am having very regular bouts of feeling light headed, sometimes accompanied by dizziness. I'm definitely feeling light headed tonight, but thankfully not dizzy.
As I type this I have a tightness across my chest, and a sensation of a weight on my shoulders.
Pressure at the base of my skull.
Pain in my neck and shoulder blades.
A dose of fog brain.
Partial numbness in my left hand and lower left leg and toes.
Tinnitus as always.
And, a lump in my throat, with some swallowing difficulty for certain types of solids.
All of this said, if it were not for the fact that I've been working through all of this for the past year, had work ups by my primary care physician, a cardiologist, updated MRIs showing the problem with my Chiari and small syrinx, if probably beas worried as you now are.
It sounds like from our prior exchanges that you are doing about all you can to get medical attention for this condition.
Is like to challenge you to look for activities, time with significant others, or other things you know that will help you get your mind off this for a bit, and take care of your emotional well being.
I ask this because when I was first diagnosed back in 2008 and my concerns were dismissed out of hand by the neurologist I saw at that time, I passed through a period were I was worried sick about what I was experiencing, and that took a massive toll on my own emotional well being, and I believe my physical health at that time.
And no, I'm not dismissing what you are feeling and the seriousness of our chiari malformations. It needs to be taken seriously, but over time I have just come to terms with my diagnosis and symptoms. (of course, that does not mean I don't take note of new symptoms and check them out, but it has just gotten easier to take them in stride.
I don't know how to explain it, but I'm happier this was, not down and out, more present for my wife and kids, more effective at work etc.
I'm hoping you can fi d similar peace in thus process, and stay engaged as much as possible in your other interests and pursuits. Staying engaged like this keeps my mind off my symptoms and helps me tremendously.
I don't always go into the sort of detail that I am about to share with you, but I want you to know the things you are experiencing are common for our condition.
Admittedly, I don't know your pain levels, and I know people experience things differently, so all of this may well be more severe in your case.
I am having very regular bouts of feeling light headed, sometimes accompanied by dizziness. I'm definitely feeling light headed tonight, but thankfully not dizzy.
As I type this I have a tightness across my chest, and a sensation of a weight on my shoulders.
Pressure at the base of my skull.
Pain in my neck and shoulder blades.
A dose of fog brain.
Partial numbness in my left hand and lower left leg and toes.
Tinnitus as always.
And, a lump in my throat, with some swallowing difficulty for certain types of solids.
All of this said, if it were not for the fact that I've been working through all of this for the past year, had work ups by my primary care physician, a cardiologist, updated MRIs showing the problem with my Chiari and small syrinx, if probably beas worried as you now are.
It sounds like from our prior exchanges that you are doing about all you can to get medical attention for this condition.
Is like to challenge you to look for activities, time with significant others, or other things you know that will help you get your mind off this for a bit, and take care of your emotional well being.
I ask this because when I was first diagnosed back in 2008 and my concerns were dismissed out of hand by the neurologist I saw at that time, I passed through a period were I was worried sick about what I was experiencing, and that took a massive toll on my own emotional well being, and I believe my physical health at that time.
And no, I'm not dismissing what you are feeling and the seriousness of our chiari malformations. It needs to be taken seriously, but over time I have just come to terms with my diagnosis and symptoms. (of course, that does not mean I don't take note of new symptoms and check them out, but it has just gotten easier to take them in stride.
I don't know how to explain it, but I'm happier this was, not down and out, more present for my wife and kids, more effective at work etc.
I'm hoping you can fi d similar peace in thus process, and stay engaged as much as possible in your other interests and pursuits. Staying engaged like this keeps my mind off my symptoms and helps me tremendously.
Do not accept that this is your lot! Seven, yes seven neurosurgeons and five, yes five neurologists told me that yes I had Chiari, but told me and my wife that my symptoms where probably related to anxiety, and that apnea and constipation and breathing problems and brain fog had nothing to do with Chari. WRONG!!! Blocked CSF flow and compression of the 12 cranial nerves ARE what causes our symptoms: headache, numbness, apnea, brain fog, tachycardia, brachycardia, shortness of breath, memory lapse, motor skill lapse, photophobia, vision loss, numbness, dizziness, swallowing problems, tinnitus, etc. So, I had posterior fossa decompression surgery, which although has about an 80% success rate at relieving symptoms for most, I found very little relief, and 4 short weeks later, back came everything. But, I kept researching, and kept praying, and the Lord led me to: filum terminale dissectum surgery. This 45 minute surgery slowly gave me my life back. It is performed just above the intergluteal cleft (butt crack) and is a release of the filum. This release removes the downward pull on the hindbrain and thus allows for gradual increased CSF flow and thus decompression of the 12 cranial nerves. Our brains are collagen (think cottage cheese) and with the help of a safe form of inversion therapy (I stand and lean downward at the waste while reading a book for about 45 minutes a day) there has to have been an upward migration of the hindbrain (Chiari malformation tonsil). My neurosurgeon, Dr. Miguel Royo-Salvador noted that said upward migration could take "several" years, and I am just shy of the three year period since such surgery. Additionally, a multi-year study on hundreds of patients by Dr. Bolognese of New York, found and upward migration of the Chiari tonsil by an average of 3.5 millimeters! If Chiari is medically diagnosed as 5 mm, then WOW! The University of Alabama found an upward migration of said tonsils close to 1mm when the release of the filum was done on cadavers, obviously in rigor mortis, but if a cadaver can have an upward migration, think what it can do for us Chiarians. Do your research on the 12 cranial nerves, CSF flow, filum terminal dissectum/release and realize there is hope and that much is still to be learned about Chiari. Three US surgeons perform the filum surgery: Heffez in Wisconsin, Henderson in Maryland and Bolognese in New York. Dr. Royo-Salvador in Barcelona, Spain performed mine. God Bless, do your research, become your own expert and pray non-stop. The longer a patient waits. the worse the herniation can become!
Edit: University of Alabama at Birmingham did the cadaver study. Except for some apnea and fatigue, most of the 12+ symptoms I had before the filum release are GONE!, and said surgery got me out of bed after 3 years! Godspeed
Holy smokes Washfeet. I've NEVER heard of this. While I need to research it more, your description alone has me visualizing the physics involved in this filum terminale dissectum surgery. I'm intrigued.
Though, at present bending over upside down is very difficult for me to sustain at length. I quickly start hearing my heart beat in my head, to a pounding sensation of my heart beat, to being light headed, and then if I don't get up to losing my balance and feeling like I'll pass out. So, I don't know how well I'd pull 0ff that bit of the therapy. Maybe slowly but surely I work myself up to it, as the tonsils continue to migrate upward.
Though, at present bending over upside down is very difficult for me to sustain at length. I quickly start hearing my heart beat in my head, to a pounding sensation of my heart beat, to being light headed, and then if I don't get up to losing my balance and feeling like I'll pass out. So, I don't know how well I'd pull 0ff that bit of the therapy. Maybe slowly but surely I work myself up to it, as the tonsils continue to migrate upward.
It just really worries me because the pressure and pain aren’t going away just makes me scared it’s serious :(
Also I’m hearing a lot of of popping like fluid in my head with the pressure could that be from increased pressure?
12 Comments
I have heard of others mention popping like this, but I have never experienced it. Most often it seems like I have heard this in reference to points in time where their symptoms became more pronounced or worse. It seems like those cases were sometimes associated with a trauma of some sort.
I’m just hoping it’s not like hydrocephalus or something because this pressure is like a intense crushing feeling from the back of my head around to my temples. Another reason it really concerns me is that it was never constant like this...
I’m theory of it was obstructed wouldn’t I hear these squishy sounds from fluid trying to go by the obstruction?
I definitely have an obstruction, but I don't hear anything. That said, I also have pretty bad tinnitus on a constant basis, so maybe I'm missing it because of that. The only popping I ever hear is normal cracking of my neck if I turn it too much in one direction or another (like what you would hear from a non-chiari person that purposefully cracks their neck to release tension... Something, by the way, that I would NOT recommend ANYONE with a chiari do on purpose).
Also, with regards to hydrocephalus. I jokingly posted elsewhere on these forms about a time I contracted viral meningitis while living overseas. Words cannot describe how horrible the pressure on my brain and associated headaches were.
Please keep in mind that I do NOT work in medicine, so you should follow up with your primary care physician on the prospect of hydrocephalus, but I would think that if you are truly experiencing hydrocephalus that you would be feeling intense, never ending, very difficult to treat headaches (versus the more typical pressure build up from cerebral spinal fluid in your brain due to an obstruction from your chiari, which also induces headaches, but unless completely obstructed sort of comes an goes somewhat, giving at least a degree of relief from time to time).
Another prospect is that the egress point in your brain for your cerebral spinal fluid could be mostly to completely obstructed, which would result in more and more fluid building up on the brain, and I suspect one or more syrinxes also building up along your spinal column.
I think Selma indicated previously, and I second her statement that ONLY a CINE MRI will verify the CSF dampening or complete obstruction with your chiari. Beyond that, an MRI of the neck, thorax, and lumbar sections of your spinal column will show any syrinxes (i.e. cysts). You need to have your primary care physician or a chiari specialist order these MRIs so you can get a conclusive answer to your concern.
Please keep in mind that I do NOT work in medicine, so you should follow up with your primary care physician on the prospect of hydrocephalus, but I would think that if you are truly experiencing hydrocephalus that you would be feeling intense, never ending, very difficult to treat headaches (versus the more typical pressure build up from cerebral spinal fluid in your brain due to an obstruction from your chiari, which also induces headaches, but unless completely obstructed sort of comes an goes somewhat, giving at least a degree of relief from time to time).
Another prospect is that the egress point in your brain for your cerebral spinal fluid could be mostly to completely obstructed, which would result in more and more fluid building up on the brain, and I suspect one or more syrinxes also building up along your spinal column.
I think Selma indicated previously, and I second her statement that ONLY a CINE MRI will verify the CSF dampening or complete obstruction with your chiari. Beyond that, an MRI of the neck, thorax, and lumbar sections of your spinal column will show any syrinxes (i.e. cysts). You need to have your primary care physician or a chiari specialist order these MRIs so you can get a conclusive answer to your concern.
Well I had MRIs of my entire spine in February and they were all normal besides a little degeneration in my cervical spine but no syrinxes then but maybe I have one now idk. I also had a cat scan done like a week and a half ago that would of showed hydrocephalus right?
Hi...if you had hydro as Matt mentioned you would have much more then the pressure headaches going on. MRI's will only be reported on what they were told to look for....so if yoour Drs were only looking for how big a herniation that may be all they were concerned with....Did you get a copy of the MRI you just had?
It’s not just pressure it does hurt too... So your saying they could have missed hydro l?
I have copies of my mris of my spine but the mri of my head that I had in October I don’t have. So you guys think it’s just the chiari?
You should be able to request a copy of the MRI of your head. I would get a copy of it on disk no matter what you intend to do with it in the near term.
Next, IF YOU WERE EXPERIENCING THIS PRESSURE AND PAIN WHEN YOU HAD THAT MRI OF YOUR HEAD DONE, I would get it re-evaluated by your physician or give it to another neurologist or neurosurgeon for a second opinion.
Not being in your shoes, I cannot assess your pain and discomfort level, so it is hard to say that it is just your Chiari. It might be, but I don't want to point you in the wrong direction here. I really think you need to get this assessed by a specialist.
Also, on your question about the CT scan, I don't know if it would pick up on hydrocephalus. But, I believe hydrocephalus is normally diagnosed using ultra sound. One of my sons had to be checked for hydrocephalus as an infant. They checked it by doing an ultra sound on his head. It was quick and painless. And thankfully, everything checked out for my son and he was fine.
I can tell you are very worried about your situation. I remember feeling similarly alarmed when I had viral meningitis. You know your body best, and I think the most important thing to do here (regardless of whatever push back you may get from medical care providers) is listen to your body, and seek out specialists who are most likely to get to the bottom of all of this.
Do me a favor and make a promise to yourself to call tomorrow to get a copy of your head MRI for this situation or future reference, and to reach out to your existing doctor ASAP (or a new one if you don't have faith that your existing doc is ready to help you figure this problem out).
I really hope you feel better soon.
Next, IF YOU WERE EXPERIENCING THIS PRESSURE AND PAIN WHEN YOU HAD THAT MRI OF YOUR HEAD DONE, I would get it re-evaluated by your physician or give it to another neurologist or neurosurgeon for a second opinion.
Not being in your shoes, I cannot assess your pain and discomfort level, so it is hard to say that it is just your Chiari. It might be, but I don't want to point you in the wrong direction here. I really think you need to get this assessed by a specialist.
Also, on your question about the CT scan, I don't know if it would pick up on hydrocephalus. But, I believe hydrocephalus is normally diagnosed using ultra sound. One of my sons had to be checked for hydrocephalus as an infant. They checked it by doing an ultra sound on his head. It was quick and painless. And thankfully, everything checked out for my son and he was fine.
I can tell you are very worried about your situation. I remember feeling similarly alarmed when I had viral meningitis. You know your body best, and I think the most important thing to do here (regardless of whatever push back you may get from medical care providers) is listen to your body, and seek out specialists who are most likely to get to the bottom of all of this.
Do me a favor and make a promise to yourself to call tomorrow to get a copy of your head MRI for this situation or future reference, and to reach out to your existing doctor ASAP (or a new one if you don't have faith that your existing doc is ready to help you figure this problem out).
I really hope you feel better soon.
I will get the mri copy tomorrow. I’m in the process of trying to get an appointment with a chiari specialist in Nashville so I guess I’m doing all I can....
I know it is difficult. True chiari specialists are far and few between. I also missed where you indicated that you don't have health insurance at the moment. I'm sorry, that's rough.
After my last response I looked online and saw that CT scan can be used to diagnose hydrosphelus. So, I would think that would have been apparent when you got your recent CT scan of your head.
Maybe try reaching out to the hospital where that was done and ask them to confirm that they did not see evidence of hydrosphelus.
I pray you find relief soon.
After my last response I looked online and saw that CT scan can be used to diagnose hydrosphelus. So, I would think that would have been apparent when you got your recent CT scan of your head.
Maybe try reaching out to the hospital where that was done and ask them to confirm that they did not see evidence of hydrosphelus.
I pray you find relief soon.
Also do all neurosurgeons require a referral for consult?
1 Comments
In my case yes. My health insurance requires a referral from my primary care physician. But, I have regular contact with him, and he is well informed on the situation with my Chiari, so he has not hesitated to give me referrals to see specialists as needed.
Thanks Selma I’ll check it out. Does this sound like increased cranial pressure?
2 Comments
As I may have said before it could be IIH OR it could be weather realted OR even how stressed you are at this time.....so many things it could be......unless you know you have a CSF obstruction I wouldn' t think the worst possible senerio.....I had similar pain and I did not have IIH.....try to relax.....until you know there is no reason to stress over it as it will only make you feel worse.I always said it felt ike someone was jabbing an ice pick into me.....so I know how you feel and I occasionally get one still......but many times it is when I am over doing things and over tired......
Not all NS require a referral...it really depends on your medical INS if they require it or not.....I did not have one as it wasn't required by my INS, I could choose any Dr I wanted.
The popping or sounds of fluid moving/rushing sometimes are the nerves reacting/engaging not really fluids.....
Not all NS require a referral...it really depends on your medical INS if they require it or not.....I did not have one as it wasn't required by my INS, I could choose any Dr I wanted.
The popping or sounds of fluid moving/rushing sometimes are the nerves reacting/engaging not really fluids.....
Thank you so much as always selma. So this intense crushing type pressure that’s wrapping around my head is it more then likely just the chiari?
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No idea, it could just be the Chiari.....have you had a CINE MRI? Chiari headaches can cycle...meaning they can get worse or better...all depends on you OR the weather....the weather is a hugr factor in how we feel....if you are having bad weather now or in the next few days your head can act like a barometer.....so do not stress over what it might be and try to find a Dr that is a true Chiari specialist and will test you for ALL related conditions and will look to see if you have a CSF obstruction.
Try to relax.....lay in a darkened room with your favorite music playing...or take a warm soak in the tub....I hope your feeling better soon.
Try to relax.....lay in a darkened room with your favorite music playing...or take a warm soak in the tub....I hope your feeling better soon.
9 Comments
Just scared if I don’t go to the er something will happen..
I haven’t had a cine mri yet and that’s why I’m worried it’s hydrochepalus from the chiari... I’ve got the bad pressure in my head along head pains that come and go like stabbing pains.
Right now I have this intense pressure right at the base of my head we’re it meets my neck it’s like fluid is getting caught there.
I am so sorry you are havng such intense pain and that it is scaring you.......if you would feel better going to the ER by all means go, but just know you may get a Dr that has no idea what Chiari is....and may downplay the symptoms you describe....OR they won't know what to do for you but give you opiods....which won't help the pain....
They also won't do any testing, CINE MRI etc....they will refer you to your NS or NL.
They also won't do any testing, CINE MRI etc....they will refer you to your NS or NL.
Stroud5393... a number of the symptoms you mention mirror ones I've experienced as well.
Let me start by reinforcing several points selmaS has made in this thread, as selmaS is spot in here.
1) On the whole, size or depth of your herniation does not precisely correlate with CSF flow, syrinx formation, and symptoms.
2) You definitely will want to get a CINE MRI. As far as I know, it is the only way to accurately measure CSF flow.
3) You definitely want to find a neurosurgeon who specializes in Chiari Malformations.
While my Chiari 1 malformation has been symptomatic since my later teen years, it is only in the last year that my symptoms have risen to an alarming level. Before this I only dealt with a fine essential tremor in my hands, classic chiari headaches, regular neck and upper back pain, occasional heart palpitations, on and off tinnitus, and migraine headaches.
However, in the last year, I have had long stretches of CONSTANT light headedness, along with occasional dizziness. More alarming have been the 3 serious episodes of straight up room spinning vertigo. And most alarming has been the numbness and tingling in my fingers and toes. Beyond that, I've developed some small associated symptoms and otherwise all of the aforementioned symptoms have each escalated to varying degrees, but generally remain manageable.
I mentioned in another thread on this site that when my chiari was first found back in 2008, a young neurologist completely dismissed my list of symptoms and concerns. Knowing close to nothing about the condition, I took that feedback and moved on with life. However, I'm now connected w/ a neurosurgeon that specializes in Chiari Malformations. My experience in working with an expert in this field has been night and day compared to what I ran into back in 2008. So please, get a second opinion from someone experienced w/ chiari malformations.
I too feel generally dull (but occasionally fairly significant) pressure radiating from the base of my skull and back of the head. It has changed my behavior in a number of ways. For instance, (this is small but) I used to always wear baseball caps when out and about. Anymore it is uncomfortable to wear them, and makes me feel like my light headed or dizzy feelings are worse when wearing hats. So, I go without.
My best suggestion for when you feel that pressure and never ending light headed feeling is to find a position (laying down, walking, whatever works for you) to maximize your ability to allow the spinal fluid to flow better. Anymore for me, I only get relief from that feeling after a good nights rest with an ergonomic memory foam pillow I have, or a substantial amount of walking.
Finally, somewhat on the topic of feeling pressure in the head, I have to quickly relay an experience that I now chuckle about from when I was 20.
This was before I got my original chiari diagnosis in 2008. I was living abroad in a country that was at the time in an economic crisis, and contracted viral meningitis during an outbreak of West Niles virus in the region. As you can imagine with my then unknown (but definitely symptomatic) chiari, the pain was EXCRUCIATING!!! I was absolutely convinced I'd developed a massive tumor in my head overnight. :)
I could not think straight, I could not stand looking at anything even marginally bright, I could hardly move, I couldn't hold down food, medicine, etc.
And, of course, unlike bacterial meningitis, there is no antibiotic to give for a virus. All I could really do in that setting was fend off fevers, and 'try' to reduce the pain. The doctor could offer no real relief. He knew it was viral meningitis because they were seeing it all over the place at the time there. I just rode it out in my apartment, roiling from the pressure, pounding, and pain. Then after about a week, I woke up one day perfectly fine like nothing ever happened. So, I compare the pressure and discomfort I currently feel to that and it gives me perspective, and YES it makes me chuckle to myself when thinking about unwittingly going through that as a clueless 20 year old with a symptomatic (though undiagnosed) chiari. :)
Hang in there, and keep looking for answers and help. And if nothing else, know that there are a lot of us fellow chiarians that can relate to and sympathize with your journey.
Let me start by reinforcing several points selmaS has made in this thread, as selmaS is spot in here.
1) On the whole, size or depth of your herniation does not precisely correlate with CSF flow, syrinx formation, and symptoms.
2) You definitely will want to get a CINE MRI. As far as I know, it is the only way to accurately measure CSF flow.
3) You definitely want to find a neurosurgeon who specializes in Chiari Malformations.
While my Chiari 1 malformation has been symptomatic since my later teen years, it is only in the last year that my symptoms have risen to an alarming level. Before this I only dealt with a fine essential tremor in my hands, classic chiari headaches, regular neck and upper back pain, occasional heart palpitations, on and off tinnitus, and migraine headaches.
However, in the last year, I have had long stretches of CONSTANT light headedness, along with occasional dizziness. More alarming have been the 3 serious episodes of straight up room spinning vertigo. And most alarming has been the numbness and tingling in my fingers and toes. Beyond that, I've developed some small associated symptoms and otherwise all of the aforementioned symptoms have each escalated to varying degrees, but generally remain manageable.
I mentioned in another thread on this site that when my chiari was first found back in 2008, a young neurologist completely dismissed my list of symptoms and concerns. Knowing close to nothing about the condition, I took that feedback and moved on with life. However, I'm now connected w/ a neurosurgeon that specializes in Chiari Malformations. My experience in working with an expert in this field has been night and day compared to what I ran into back in 2008. So please, get a second opinion from someone experienced w/ chiari malformations.
I too feel generally dull (but occasionally fairly significant) pressure radiating from the base of my skull and back of the head. It has changed my behavior in a number of ways. For instance, (this is small but) I used to always wear baseball caps when out and about. Anymore it is uncomfortable to wear them, and makes me feel like my light headed or dizzy feelings are worse when wearing hats. So, I go without.
My best suggestion for when you feel that pressure and never ending light headed feeling is to find a position (laying down, walking, whatever works for you) to maximize your ability to allow the spinal fluid to flow better. Anymore for me, I only get relief from that feeling after a good nights rest with an ergonomic memory foam pillow I have, or a substantial amount of walking.
Finally, somewhat on the topic of feeling pressure in the head, I have to quickly relay an experience that I now chuckle about from when I was 20.
This was before I got my original chiari diagnosis in 2008. I was living abroad in a country that was at the time in an economic crisis, and contracted viral meningitis during an outbreak of West Niles virus in the region. As you can imagine with my then unknown (but definitely symptomatic) chiari, the pain was EXCRUCIATING!!! I was absolutely convinced I'd developed a massive tumor in my head overnight. :)
I could not think straight, I could not stand looking at anything even marginally bright, I could hardly move, I couldn't hold down food, medicine, etc.
And, of course, unlike bacterial meningitis, there is no antibiotic to give for a virus. All I could really do in that setting was fend off fevers, and 'try' to reduce the pain. The doctor could offer no real relief. He knew it was viral meningitis because they were seeing it all over the place at the time there. I just rode it out in my apartment, roiling from the pressure, pounding, and pain. Then after about a week, I woke up one day perfectly fine like nothing ever happened. So, I compare the pressure and discomfort I currently feel to that and it gives me perspective, and YES it makes me chuckle to myself when thinking about unwittingly going through that as a clueless 20 year old with a symptomatic (though undiagnosed) chiari. :)
Hang in there, and keep looking for answers and help. And if nothing else, know that there are a lot of us fellow chiarians that can relate to and sympathize with your journey.
Thank you for the long response. Unfortunately I can’t see a chiari specialist without insurance I work with my family and we don’t have insurance... I’m at the er again because this pressure in my head is excruciating like a vice clamping down... Should I maybe tell them I need a spinal tap? I’ve read this can be increased intracranial pressure in my head. I’m losing my mind I wish I could just get the surgery :(. Please I don’t know what to do...
I can’t see my neurologist till August not sure she will do any good anyways :(
Hi..since you do not have INS maybe you would be interested to see if you qualify foor a clinical trial.....they do them from time to time...and they are Chiari specialists that do the trial.....can't hurt to look.
Here is a link to trials they are recruiting for -
https://clinicaltrials.gov/ct2/results?term=Chiari+Malformation&Search=Apply&recrs=a&age_v=&gndr=&type=&rslt=
https://clinicaltrials.gov/ct2/results?term=Chiari+Malformation&Search=Apply&recrs=a&age_v=&gndr=&type=&rslt=
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