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 :(...
Has anyone here experienced lightheadedness to the extent of where it’s was almost constant? I’m also noticing my swallowing getting worse to the point of almost choking on liquids.. What worries me is my symptoms have gotten so bad in just a couple of months it makes me scared that it is serious...
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Hi...in this heat , weather can be playing a part in how you feel, Are you well hydrated?
Do you have a syrinx?(sorry I can't remember)
Do you have a syrinx?(sorry I can't remember)
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Well I work in the air condition so I don’t think it’s that. Yes I drink plenty of water that’s all I ever drink. As far as a syrinix it’s possible. I had a mri of my brain and c spine about 4 months ago which were normal but my symptoms have gotten much worse since then.
I’ve bern getting a lot of pain between my shoulder blades lately too.
You sound just lke me, Choking on my own spit, gabbing the counters or a handle because my head is spinning so bad I am scared I will fall. I went to my first neurosurgeon apt he said 4-5 mm is not chiari, smh, I truly wanted to punch him in his face, as long as I have waited to get it. I’m not reading their patients referrals any longer I need appts with someone I’m getting scared. Best of luck!!
I forgot to address that as well mine are like they are on fire!!
Ttraye sorry your going through this too... It’s truly scary to feel like this all the time.. I’ll probably never get the surgery I need because I don’t have insurance and my symptoms are progressing everyday and I don’t know what to do... Selma does it sound like I have a syrinix?
Just from the way your symptoms are changing it is possible you have a syrinx....we have had other members here have a change that went very fast and it was due to a syrinx......I would definitely want to rule it out.
Being in AC does not change the need for hydration....the amount we need has changed from 8 - 8 oz glasses a day to 15 and we should have more during hot temps. Dehydration can cause many of the same symptoms you mentioned except for the swallowing. I had swallow testing done and they said no issues...so it was a neuro issue that has changed post op for the better.
Do you have a copy of your MRI? If not, call the facility that did the studies and request one, they should give you one at no cost. Also ask for a copy of the report and do so going forward with ALL testing even your blood labs.
Being in AC does not change the need for hydration....the amount we need has changed from 8 - 8 oz glasses a day to 15 and we should have more during hot temps. Dehydration can cause many of the same symptoms you mentioned except for the swallowing. I had swallow testing done and they said no issues...so it was a neuro issue that has changed post op for the better.
Do you have a copy of your MRI? If not, call the facility that did the studies and request one, they should give you one at no cost. Also ask for a copy of the report and do so going forward with ALL testing even your blood labs.
Yes I have the copies of the mri's and reports. I just posted a picture here of my c-spine if you want to look at it.
Also I drink a lot a water all day too.
The mri's I had 4 months ago were read as normal it wasn't until I went to the er like 3 weeks ago that they saw chiari 5mm on saggital ct scan.
Well my next appt is with my previous neurosurgeon that did my neck and back surgeries. He’s not a chiari specialist so I’m hoping he can get me into someone he knows that is and or getting me in someplace quicker than I can myself. I have been looking at the chiari institute in New York City, even though the thought of having to go that far from here scares me, if I have to travel, which is very obvious, I may as well go to the best. My issue is there are so many different sites and drs, some that have been cited for illegal practices I can’t tell who works where and if they are still there. I’m so overwhelmed trying to keep up with being a professional patient I am so confused, I’m just about ready to say forget about it. I can’t keep track of anything, trying to keep a home running, smh it’s just horribly discouraging all the way around, wishing you the very best!!
Ttraye- I went to TCI and my Dr is still there and I was very pleased......I know there are other Drs there.....and some of what you are reading online about some Chiari Drs have been exaggerated if I must say so....if you have questions on a particular Dr, send me a PM maybe I can shed some light....
Thank you Selma, my life long friend I told you about way back at the beginning, her daughter had chiari was operated on there, she found me her contact that she had for her daughter. I see my pain dr tomorrow, I finally got my eyes working with my prisms in my rx went to eye dr today. So I will see my pain dr make sure we are on the same page with my treatments and I will give you a shout. Just trying to do one thing at a time, I have had 2 very bad dizzy episodes, 1 could have been bad,I almost feel as if someone stopped the fall, but I know that I did some how some way.... this chiari is a mess. Thank you, as always your input is greatly appreciated!!
Well I may be back to square one again.. I went to a different er awhile ago and they did a ct scan and the the doctor told the radiologist to look for chiari and it was normal. So idk what do now :(
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Do you have a copy of that MRI?
The one I had 4 months ago?
Yes and I have and the report but it was normal. I have the ct scan report from a month ago that said there is extension of the cerebellar tonsils through the foramen magnum by approximately 5mm consistent with chiari I malformation.
I am asking if you have a copy of the MRI, not the report...it is good to have both, but the MRI on disk is important to have since not all Drs read the findings the same way, so the report is an opinion of the radiologist that did the testing....while he/she feels one way which is in the report . A Chiari specialist may see something different....so having a copy of the MRI on disk is important to have.
Chiari is not the herniation, but so many Drs want to see a herniation of 5mm's to classify it as Chiari, but Chiari is a malformation of the skull so, this is why I say you need more then the report.
Chiari is not the herniation, but so many Drs want to see a herniation of 5mm's to classify it as Chiari, but Chiari is a malformation of the skull so, this is why I say you need more then the report.
Yes I have the mri of my brain and spine on a disk.
I see my PCP tomorrow and theirs so much I wanna mention to him but I don't wanna overwhelm him. Like the er seeing the chiari on a ct scan and everything. Should I tell him I need mri's of my head and full spine? I see a neurologist next week but I just wish my PCP could get these tests out of the way.
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Tell your Dr about the Chiari and what other testing is needed.....and let him/her decide what involvement he/she wants to be part of.....your INS will determine a lot of that too...but your PCP should know what is going on.
So I went to the doctor today and he pretty much said he’s gonna let the neurologist do everything like he doesn’t want any part in it.. I’m so short of breath today and it’s just getting worse every single day :(. So this is either a syrinix or brain stem compression causing the shortness of breath don’t you think?
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From what I’ve read online this could cause respiratory failure I’m so worried....
Hi....there are many things that could be going on, my question is why didn't your Dr get you into see a NL ...I figured he could not treta you since it is a neurological issue.BUT he could refer you or consult with the NL to get you in sooner with the breathing issues.
Try to relax as stress will not help and could make symptoms increase.
Try to relax as stress will not help and could make symptoms increase.
I already have an appointment with a neurologist next week I guess that’s why he didn’t wanna do anything...
Well they do not go outside their area of expertise....so, the best he can do is chart your issues but since they are breathing issues he could have consulted with the NL that you are to see to maybe get you in sooner.
He probably won’t think my breathing issues could be caused by the chiari
Regardless, if you are having breathing issues they should be addressed by a medical professional if not a neurological issue, then a physiological approach and exam should be done.
It’s more than likely neurological because I’ve had a extensive cardio and pulmonary work up so I know it’s not my lungs or heart.
Selma have you ever heard of someone d with chiari with the same symptoms have you ever hear of some going into respiratory failure ?
The only person I heard of having respiratory issues has Ehlers Danlos Syndrome and it was not respiratory failure..but she is having major issues.
What causes the shortness of breath in EDS?
I’m at the hospital again I’m having heart palpitations elevated heart rate and shortness of breath I’m so worried... I’ve been working in the heat all day today and maybe that’s a contributing factor.. All day today every time I bend over I feel faint and short of breath :(.
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The heat is definitely a factor.....
Just left the hospital a bit ago they did an ekg and blood work and sent me on my way my heart still hasn’t come below the 100 mark...
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So it is not your heart, otherwise the testing would have shown something,and they would not have sent you home.
Were you tested for POTS?
Were you tested for POTS?
No I haven’t don’t they do a tilt table test? They’ve checked my blood pressure lying to sitting to standing and it never drops or anything.
Yes, the tilt table is one of the tests they do for POTS...and something I feel your Drs should rule out if they haven't already.
Hi, i'm 21 and I got decompression surgey 13 months ago and still experience shortness of breath, dizziness, and feeling disassociated all the time. i totally understand how unnerving it is but it's comforting to hear other people feel this as well. i don't have another MRI or appointment scheduled until october, so please let me know if you find out any more info on this from your doctor. good luck, praying for all of you.
Well I saw the neuro yesterday and I believe I’m getting a CINE mri because she said she needed to speak with a radiologist about what type of mri I need and I just expect that to be it. Honestly from looking at my last mri it doesn’t appear to be any obstruction with my tonsils blocking spinal fluid I think most of my symptoms are from brain stem compression abs the fact it’s kinked.
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I’m afraid she will come back and say the flow is good and assume my symptoms are cause by chiari but that’s not true is it, it can also be caused by brain stem compression correct?
Chiari symptoms are deff due to brain stem compression and diminished csf flow. My brain stem was kinked and I had diminished flow also. I think with brain stem compression, it has to block at least some flow just anatomically speaking.
I pray someone can find the answer for you and you can find some relief
I pray someone can find the answer for you and you can find some relief
Thank you so much for your prayers I pray they get this took care of..
For the past few days I’ve noticed a burning sensation acros my whole back it feels like it’s on fire or something. Is this a chiari thing or could that be a syrinix?
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I don't have a syrinx, so I can't tell you it is not one....but I get that sensation and mine is from my EDS DX.
I don't know what it is but its really concerning me.. It feels like a constant hot sensation in my neck..
Ok today I’m really concerned I’m feeling real out of it and confused it’s hard to describe but I find it really difficult to think clearly. The past couple of days I’ve been feeling off like something different is up idk. Could I have hydrochepalus causing these symptoms? Or could this just be chiari causing the confusion and stuff?
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Please someone respond I don’t know what to do I don’t know if I should go to the er or what because I’ve been 4 times in the past month or so :(
I know that a lot of my symptoms can be caused by brain stem compression I don’t understand how my brain stem being compressed doesn’t warrant emergency surgery I’ve read people can die suddenly do to it... I’m sorry I’m just a wreck and don’t know what to do.
Hi...I am sorry I was not able to get on my computer and missed a few posts.....and I am so sorry as I know just how frustrated and anxious you are about these symptoms.
Sorry I can't remember if you have had a CINE MRI? If you did it could indicate an issue with ICP or Hydro.
Are you keeping a journal to see if outside events/forces are triggering your symptoms...I know the recent weather here has been awful and will be a major trigger for us Chiarians.
Sorry I can't remember if you have had a CINE MRI? If you did it could indicate an issue with ICP or Hydro.
Are you keeping a journal to see if outside events/forces are triggering your symptoms...I know the recent weather here has been awful and will be a major trigger for us Chiarians.
I believe it’s a cine mri I have scheduled this Tuesday I hope it reveals answers..
Good Luck Tuesday and I pray you are feeling a little better. Do let us know how the testing goes and remember to get copies of the MRI on disk before you leave....tell them when you sign in and also ask for a report to be sent to your home ( you should have to sign a release for them to send the report.)
Unfortunately I was wrong about it being a cine mri.... It’s just a regular head mri o really need the cine mri now I may never get answers... I’m fixing to get the mri now I’ll ask for the copies and everything.
Isn’t there a chance that they won’t see the chiari this time and they think I don’t have it all of a sudden?
Chiari is the malformation of your skull...it can not go away....on the other hand, low lying tonsils is many times referred to as Chiari since the symptoms and treatment are the same...low lying tonsils can sometimes retract on their own, making it appear that it went away....this is not a common occurrence.
Regardless of what they see, you either have it or you don't, ,the MRI may help determine what you do have if Chiari is not the DX.
Regardless of what they see, you either have it or you don't, ,the MRI may help determine what you do have if Chiari is not the DX.
Well I have to wait till October to see the neurologist about the mri results my symptoms are getting worse by the day.... It’s really terrifying to know that this will never get any better even after surgery :(.
I’m going on a family vacation to Florida and I’m so terrified everything will get really bad because I’ll be in the heat.
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You should get copies
Of the report and read it for yourself. Even if they say it’s “normal” something important could be written on it. I went 15 years being told I was normal and after being diagnosed and getting copies of all prior MRI’s saw chiari written in black and white...
Also I hope you can go to Florida and enjoy yourself instead of feeling miserable. Try to relax and take it one day at a time
Of the report and read it for yourself. Even if they say it’s “normal” something important could be written on it. I went 15 years being told I was normal and after being diagnosed and getting copies of all prior MRI’s saw chiari written in black and white...
Also I hope you can go to Florida and enjoy yourself instead of feeling miserable. Try to relax and take it one day at a time
There is a really good Chiari Dr near Disney...not sure where in FL you are....there is another Dr down in Miami......if you should need help. Try to relax and enjoy your vacation....and try to keep cool.....in a pool or inside during the higher heat of the day.
Just a little update, I saw the neuro in October about the results of the mri. She pretty much told me she didn't think it was bad enough for surgery, but she said she didn't know much about chiari. She said she was giving my scan and everything to a neurosurgeon and he would review it and decide if I need surgery.
Last I heard I someone one from neurosurgery would call after he read everything. I still have yet to get a call and my symptoms are getting worse fast...
The head pressure in the back of my head is almost constant now and feels like my head is in a vice and I can hear spinal fluid popping in the back of my head. I'm so scared that's it serious or something now.. I called the neurologist about the worsening symptoms and they scheduled me an appointment February 7th. I went to the ER last week because of the worsening head pressure and everything. They did a ct scan which was normal. Should I go back to the er since things are getting worse or is that pointless??
Last I heard I someone one from neurosurgery would call after he read everything. I still have yet to get a call and my symptoms are getting worse fast...
The head pressure in the back of my head is almost constant now and feels like my head is in a vice and I can hear spinal fluid popping in the back of my head. I'm so scared that's it serious or something now.. I called the neurologist about the worsening symptoms and they scheduled me an appointment February 7th. I went to the ER last week because of the worsening head pressure and everything. They did a ct scan which was normal. Should I go back to the er since things are getting worse or is that pointless??
Does anyone visit this board anymore? I really need advice..
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Hi , I am so sorry you are feeling alone and in pain.....The ER can't really do much for you even for pain.....I know that doesn't help you, but what you should know is Chiari symptoms do typically flare.so the more stressed you get the worse you can feel.....plus the weather is a factor is triggering pain and symptoms.
The best advice I can give is to try to relax, call the Dr that gave the Feb appointment and ask to be on the cancellation list to get you in sooner.....that way you can have testing to figure out why the increase in symptoms.
The best advice I can give is to try to relax, call the Dr that gave the Feb appointment and ask to be on the cancellation list to get you in sooner.....that way you can have testing to figure out why the increase in symptoms.
Thank you Selma I will call now to see if I can get on the cancellation list. Every time this pressure in my head is really bad my ears get really red and hot have you heard of this?
Another thing that really worries me is that the headaches just started to get really bad everyday just a few weeks ago. Could it be something else causing the headaches like Intracranial hypertension? Or is it more than likely just the chiari?
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And I keep getting this fluid sound in my head could this be my spinal fluid being obstructed??
First Breathe.....try to relax, I know it is hard especially when symptoms worsen but you could be making yourself feel worse.....
As I said it could be weather related this time of year....my head feels like it will pop open any time now.and I had surgery 10 years ago this May.....I know mine is the weather, as I can see the pattern......I also know I have been overdoing it and I am taking time to rest up and recoup.....it's important that we listen to our bodies and react positively to it and make the right corrections to allow us to feel better sooner.
There are many possibilities but until you are seen and tested it is just speculation and something that will only stress you more.....again, try to breathe.
Keep us posted on if you get in sooner to see the Dr and then what the results of testing are.
As I said it could be weather related this time of year....my head feels like it will pop open any time now.and I had surgery 10 years ago this May.....I know mine is the weather, as I can see the pattern......I also know I have been overdoing it and I am taking time to rest up and recoup.....it's important that we listen to our bodies and react positively to it and make the right corrections to allow us to feel better sooner.
There are many possibilities but until you are seen and tested it is just speculation and something that will only stress you more.....again, try to breathe.
Keep us posted on if you get in sooner to see the Dr and then what the results of testing are.
It’s honestly so hard to say calm bring in this much pain. The headaches have been all day constant for almost 2 weeks isn’t that worriesome?
I meant to say stay calm being in this much pain.
No worries I can read Chiarian...I am one....lol....
I understand it is worrisome, and I also know how long these episodes can last.....Resting and keeping calm can help....even though it is not easy to do.....it can help, and until you have further testing there isn't much more you can do, sorry to say, and the ER will not do much and possible peg you as a med seeker....they do not DX, they only treat what they can see and send you on your way......this is not something they will be able to see, so they can't treat it.....
Hang in there.
I understand it is worrisome, and I also know how long these episodes can last.....Resting and keeping calm can help....even though it is not easy to do.....it can help, and until you have further testing there isn't much more you can do, sorry to say, and the ER will not do much and possible peg you as a med seeker....they do not DX, they only treat what they can see and send you on your way......this is not something they will be able to see, so they can't treat it.....
Hang in there.
But can’t chiari cause things like hydrocephalus from obstruction? Could that be why I’m hearing the spinal fluid popping in my head? Thank you so much for always taking the time to reply to me...
Chiari can cause a syrinx to form, which can block spinal fluid, and many times what we hear and believe to be fluids can really be the nerves responding to stimuli.
Hydrocephalus can be a DX, but I have only seen it post op, and I really feel it was more a reaction to the replacement dura and not an obstruction.....JMHO.....I am not a medical professional and I can't advise , but I do feel Drs that use anything other than the patient's own tissue for a dura patch will find excess CSF as a result. I have witnessed it too many times not to be the case.The reason I feel it happens is due to so many of us also have EDS and it is undx'd when surgery os done and precautions are not taken to help avoid the post op issues.
Hydrocephalus can be a DX, but I have only seen it post op, and I really feel it was more a reaction to the replacement dura and not an obstruction.....JMHO.....I am not a medical professional and I can't advise , but I do feel Drs that use anything other than the patient's own tissue for a dura patch will find excess CSF as a result. I have witnessed it too many times not to be the case.The reason I feel it happens is due to so many of us also have EDS and it is undx'd when surgery os done and precautions are not taken to help avoid the post op issues.
Ok Selma i needs some of your great advice. This is gonna be kinda blunt but here it goes. Last week i noticed during sex right as i was ejaculating I got a severe pounding headache in the back of my head that I've never had before. Now every time I attempt to even have sex the pounding headache starts. I went to the er thinking maybe it was a aneurysm or something related. They did a ct scan which was normal. Can this be chiari related or probably something unrelated? Now i can even cough and i will get the pounding headache and its got me real concerned. Also yesterday I broke out into a sweat for no reason at all..
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Hi, yes it is a Chiari symptom.....any type of activity can cause this...even a BM.....a cough, sneeze or laughing....
Chiari can affect all functions in the body and during a flare it is possible to experience new symptoms you have never had before....and I know it can be very scary.
I wish I could say it will all be better tomorrow.....and I pray for you that it does get better....but the more you worry, the worse you will feel.....I know, trust me I know how hard it is to relax when so many scary symptoms crop up.....but you need to relax to begin to feel better. Avoid activities that can cause the symptoms to flare .
Chiari can affect all functions in the body and during a flare it is possible to experience new symptoms you have never had before....and I know it can be very scary.
I wish I could say it will all be better tomorrow.....and I pray for you that it does get better....but the more you worry, the worse you will feel.....I know, trust me I know how hard it is to relax when so many scary symptoms crop up.....but you need to relax to begin to feel better. Avoid activities that can cause the symptoms to flare .
Thank you so much selma for all your helpful advice. This has me so depressed.... Is hot flusing and high heart rate chiari related?
Yes, it can be...there are also related conditions which could also cause those symptoms.....a good Chiari specialist can help determine which symptoms are from which condition....but it can take time and continue to be very frustrating.......
Now I’m really getting concerned. The pressure in my head is constant now along with the dizziness and general unwell feeling... I just don’t know what to do... I’ve been to the er countless times and my gp nothing helps me!! I don’t k ow how much more I can take really :(
A little update. I saw my neurogist yesterday about the resumts of the mris of the full spine all normal besides some degenerative changes in my cervical spine. No syrinixs or anything like that so thats good news. I am finally seeing the neurosurgeon feb 26 i hope to get some answers. My lightheadedness has been so bad this past week but my neurologist said chiari doeamt cause lightheadedness is that true?
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She doesn't believe my lightheadeness is neurological at all but I've litwrally had everything elae tested with normal results..
I’ve had my fair share of neurologists dismiss me and tell me chiari wasn’t my problem. Even after my first decompression when my symptoms came back they were less than helpful. One did diagnose me with high ICP and put me on diamox for over a year.
Have you ever had a tilt table test done? I had one years ago and was diagnosed with orthostatic hypotension which causes dizziness and low blood pressure issues. Something to think about. Just keep pushing for answers
Have you ever had a tilt table test done? I had one years ago and was diagnosed with orthostatic hypotension which causes dizziness and low blood pressure issues. Something to think about. Just keep pushing for answers
The weather can affect how you feel....so the light headedness could be due to the barometric pressure more so then the Chiari itself. A tilt table test is a good suggestion as it is best to rule out ALL related conditions and POTS is one many with Chiari do have in addition to Chiari.
Just a little update I saw the neurosurgeon back in march. He reviewed my scans with me and showed my my chiari saying it was roughly 7mm. He said at this time he does not recommend surgery... He said if I were one of his family members he would tell them the same that its better to wait... I guess I was hoping he would say that I needed the surgery and I could end this suffering.. The past two days have been really bad ive been having horrible pressure in the back of my head. I'm worried its hydrocephalus or something similar. Does the severe pressure warrant a trip to the er??
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Does not recommend decompression surgery? Or does not know of other courses to take? Chiari decompression surgery's goal is to create more room in back of the skull, in the hope of creating more room for CSF flow, and thus/also decompress the cranial nerves. However, this does not relieve/remove the cause. Some 20% of Chiarians, we have been told in the US medical community can find a tight or tethered spinal cord (born with this at birth) to be the cause of the Chiari herniation due to the pulling down of the hindbrain by the said tightness. However, Dr. Miguel Royo-Salvador and many in the European medical community state this tightness to be much higher than 20% and that most Chiarians due indeed find their herniation due to this tightness and downward pulling of the hindbrain. Proof: whiplash victims and women who have given birth find to suddenly have symptoms that an MRI shows to be a Chiari malformation herniation, whereas before the whiplash and childbirth no symptoms were present or no herniation! A puncture of the dural (birthing epidural) has been shown to cause a slumping of the hindbrain, which is thus a direct cause of Chiari! Some antibiotics have been shown to cause an increase in intracranial pressure and cause a Chiari herniation! So, whereas the posterior fossa decompression surgery creates more room, the filum terminale dissectum/release removes the CAUSE. And, because our brains are collagen (think cottage cheese) said release of the tightness and thus release of the downward pulling on the hindbrain can lead to an upward migration of the herniated Chiari tonsils. University of Alabama found and upward migration of 1 millimeter, Dr. Paolo Bolognese of New York found an average upward migration of 3.5 mm's on hundreds of patients over a several year period, and my neurosurgeon, Dr. Royo-Salvador has indeed, per follow-up MRI found upward migration of said tonsils over a several year period. Also according to Dr. Royo-Salvador, the LONGER YOU WAIT to release the downward pull, the more herniation that is going to occur! Do your research, pray about it, become your own expert, seek multiple opinions, and quickly research FILUM TERMINAL DISSECTUM/RELEASE. Godspeed!
Edit, University of Alabama at Birmingham on cadavers.
Is this still active?
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Hi Yes , sorry I didn't see your update....it soounds like this Dr is not a true Chiari specialist....may I ask what testing have you had? A CINE MRI? The size herniation should never be a reason to have surgery or not, it should be if there is a CSF obstruction or not that should help decide about surgery....if you haven't had a CINE MRI then the Dr should not make the decision to just wait it out.....do find a Dr that is a true Chiari specialist.
Does this sound like it could be hydrocephalus? Or possibly unrelated to the Chiari like a tumor because my headaches are worse today it’s like a throbbing squeezing pain it has me so worried :(
Selma gives good recommendations. Make sure the CINE MRI is vertically performed and not horizontally performed.
COMMUNITY LEADER
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.
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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=
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?
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.
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.
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