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Need Advice
Hi. I'm new here and have been reading some of the posts. I have a similar situation as some of the other posters. I have been having symptoms for years and my doctor could not find anything wrong. I had an incident that occurred 7/2019. I was driving and everything started spinning, I got dizzy and nauseated. My doctor told me to go to the ER. When I got there they did blood work , EKG, CT scan. After hrs later they sent me home with medication and told me it was vertigo.
One yr later I had an CT Scan of the abdomen for other health issues maybe related I'm not sure. When I went into the website to see my results I seen the CT scan that had been done on my head the yr before and went in to read it out of curiosity. As I got down to the bottom it said incidental finding cerebellar tonsillar ectopia 3.5mm. I contacted my primary and she said oh that's Chiari Malformation and you need to see a Neurosurgeon. I was shocked when I looked it up to see what that is and was shocked that no one ever told me about this. Especially after years of symptoms and being told it's anxiety or it's nothing. My doctor put in referrals to both a Neurologist and Neurosurgeon but the Neurologist denied me. My appointment is for Dec. 13. I have a appointment to get a Brain MRI on Dec. 11th. When I asked my doctor why did the Neurologist deny me she just told me that my condition isn't anything to worry about its not serious because its not big and that's what the Neurosurgeon is going to tell me but I won't believe it until I hear it from them. So now I don't know what to expect at that appointment. Can anyone give me advice on how to prepare for that appointment so I don't feel crazy or get blind sided?
My symptoms for yrs:
Headaches and sharp eye pains.
Flashes of light that drips down on the side of my left eye vision.
Jaw pain and ear pain.
Swollen Lymph nodes.
Mild hearing loss.
Diagnosed with CFS.
Insomnia.
Joint pain.
Restless leg syndrome.
Neuropathy
Chronic Vitamin D deficiency.
Weakness in hands and legs.
Slurred speech.
Choke on my saliva.
Can't eat without drinking or I start to choke.
I can go on and I know it doesn't sound real but it's interfering with my quality of life.
Thank you!
One yr later I had an CT Scan of the abdomen for other health issues maybe related I'm not sure. When I went into the website to see my results I seen the CT scan that had been done on my head the yr before and went in to read it out of curiosity. As I got down to the bottom it said incidental finding cerebellar tonsillar ectopia 3.5mm. I contacted my primary and she said oh that's Chiari Malformation and you need to see a Neurosurgeon. I was shocked when I looked it up to see what that is and was shocked that no one ever told me about this. Especially after years of symptoms and being told it's anxiety or it's nothing. My doctor put in referrals to both a Neurologist and Neurosurgeon but the Neurologist denied me. My appointment is for Dec. 13. I have a appointment to get a Brain MRI on Dec. 11th. When I asked my doctor why did the Neurologist deny me she just told me that my condition isn't anything to worry about its not serious because its not big and that's what the Neurosurgeon is going to tell me but I won't believe it until I hear it from them. So now I don't know what to expect at that appointment. Can anyone give me advice on how to prepare for that appointment so I don't feel crazy or get blind sided?
My symptoms for yrs:
Headaches and sharp eye pains.
Flashes of light that drips down on the side of my left eye vision.
Jaw pain and ear pain.
Swollen Lymph nodes.
Mild hearing loss.
Diagnosed with CFS.
Insomnia.
Joint pain.
Restless leg syndrome.
Neuropathy
Chronic Vitamin D deficiency.
Weakness in hands and legs.
Slurred speech.
Choke on my saliva.
Can't eat without drinking or I start to choke.
I can go on and I know it doesn't sound real but it's interfering with my quality of life.
Thank you!
COMMUNITY LEADER
Hi and welcome to the Chiari forum.
First, a NS(Neurosurgeon ) will offer to do surgery, as that is what they do, but unless they are a true Chiari specialist...do not allow them to touch you. Having a DX of Chiari is not a reason to think you need surgery....there are several tests you need to have done, but you also need to research Drs to find one that is well informed and experienced before getting upset and stressing yourself out. Stress can actually cause symptoms to flare...so do what you can to relax.
Know that your NS should set several tests up and consider those results before having any conversation on if your Chiari is mild (small herniation) or severe (large herniation)- Chiari is not the herniation, but the Malformation of the skull..so other areas need to be considered as they play a role in what is the best way to proceed.
Many Drs look to the size of herniation to determine if the patient is in need of surgery....to help you understand what I am trying to say....imagine a funnel and it's your posterior fossa, now drop a piece of shoestring licorice down it.....even with the licorice, fluid can still pass with no problems. But now place a gumdrop in there with the smaller part in first....it will cork up the opening....SO you can see how the size really doesn't make this worse....Drs that only look for the herniation to be 5mm's or more are not well experienced with Chiari. I have heard so many say "My Dr said my Chiari needs surgery right away due to the 12mm herniation...!! They never did a CINE MRI or other testing to rule out other related conditions ...IF there is no obstruction to CSF flow, surgery may not cause any benefits....it may actually cause more symptoms or issues due to having surgery.
Surgery is done to restore CSF flow and slow progression of the condition....when there is an obstruction to flow, a syrinx can form, and a syrinx depending where it forms can cause pressure to be on the spinal cord or even the brain stem....so if there is no obstruction, surgery should not be an option....UNLESS the Dr sees other issues because they looked further into your issues with testing....a retroflexed odontoid, Cervicocranial instability, are a few things in addition to a syrinx that could warrant surgery.
Be aware of all the related conditions so you know what questions to ask, or take note of what the Dr does not talk about....you will then know if this is the right Dr for you.
First, a NS(Neurosurgeon ) will offer to do surgery, as that is what they do, but unless they are a true Chiari specialist...do not allow them to touch you. Having a DX of Chiari is not a reason to think you need surgery....there are several tests you need to have done, but you also need to research Drs to find one that is well informed and experienced before getting upset and stressing yourself out. Stress can actually cause symptoms to flare...so do what you can to relax.
Know that your NS should set several tests up and consider those results before having any conversation on if your Chiari is mild (small herniation) or severe (large herniation)- Chiari is not the herniation, but the Malformation of the skull..so other areas need to be considered as they play a role in what is the best way to proceed.
Many Drs look to the size of herniation to determine if the patient is in need of surgery....to help you understand what I am trying to say....imagine a funnel and it's your posterior fossa, now drop a piece of shoestring licorice down it.....even with the licorice, fluid can still pass with no problems. But now place a gumdrop in there with the smaller part in first....it will cork up the opening....SO you can see how the size really doesn't make this worse....Drs that only look for the herniation to be 5mm's or more are not well experienced with Chiari. I have heard so many say "My Dr said my Chiari needs surgery right away due to the 12mm herniation...!! They never did a CINE MRI or other testing to rule out other related conditions ...IF there is no obstruction to CSF flow, surgery may not cause any benefits....it may actually cause more symptoms or issues due to having surgery.
Surgery is done to restore CSF flow and slow progression of the condition....when there is an obstruction to flow, a syrinx can form, and a syrinx depending where it forms can cause pressure to be on the spinal cord or even the brain stem....so if there is no obstruction, surgery should not be an option....UNLESS the Dr sees other issues because they looked further into your issues with testing....a retroflexed odontoid, Cervicocranial instability, are a few things in addition to a syrinx that could warrant surgery.
Be aware of all the related conditions so you know what questions to ask, or take note of what the Dr does not talk about....you will then know if this is the right Dr for you.
6 Comments
Thank you Selma for your response. It is concerning to have a condition that I and doctors know so little about. I will be doing my research. What other tests besides the brain MRI should they do to determine a course of treatment? Do they offer medications for this? What other treatments besides surgery are there? Thank you again!
Hi...other testing would be to rule out ALL related conditions.....Related conditions would be Syringomyeia,So, MRI'S of the cervical , thoracic and lumbar spine. A syrinx can develop anywhere in the spine...a MRI of the brain as well. This will or should show if there is a retroflexed odontoid, or any other issues with CSF...some have had the pituitary gland flattened from pressure from the high CSF pressure. They should rule out Ehlers Danlos Syndrome, Intracranial hypertension......cervicocranial instability...checking also for any issues with non related conditions to make sure your symptoms are not for any other reasons....I was tested for Lupus, MS....they did find I had Hashimoto's thyroiditis, I was low in magnesium and potassium....and low B12 and Vit D...all which can play into our symptom lists....
One other reason besides the symptoms, is how a Dr would proceed should you qualify for a surgical treatment. EDS- Ehlers Danlos syndrome is a connective tissue disorder that many with Chiari seem to also have, EDS can cause us to have issues with medications, they tend to act on us or react on us differently than what is expected from the medication....it is possible to even have allergic reactions to meds you once were able to take. Novocaine at a dentist can take several attempts before you actually go numb, and then it can take days for it to wear off. But with surgery a possibility, it is also important to note that those with EDS can have reactions to foreign materials....such as items used for a duraplasty...even stitches/sutures. And then the troubles can get worse...since you may have had a foreign substance introduced during surgery, your body may overproduce CSF to wash it away....but too many Drs see just the excess CSF and treat it as Intracranial Hypertension and do yet another surgery this time to implant a shunt to drain the fluids.....and now you may have more CSF due to the shunt! It can become a vicious cycle.Far too few Drs may realize it is the foreign material causing the issue and not a by product of having the surgery. We are all different and some may develop issues post op, while other's may not....but knowing or ruling out other conditions will help your Drs know where to look should you have issues...and know to utilize your own tissues for a dura patch instead of using other available patches that may cause a reaction.
As for what other treatments that are out there for this condition...sadly, none....as I may have said earlier, surgery is not a cure, it is done to restore CSF flow and slow progression of the condition.
And unfortunately, no meds that worked for me with my symptoms.
I must tell you I did have surgery and I have seen benefits....but some people do not, or have had numerous surgeries .....as I stated above, we are all different...and how we respond to the symptoms, and the surgery will be different. That said, we all also heal at different rates. Immediately post op...so many have said how wonderful they felt...and then it seems the symptoms started to return....and they may, especially during healing...we go through different phases . It can take weeks, months or even years to see all the possible benefits from this surgery.
The best medicine is to listen to your body....restrict physical activities when you are in a flare, know when to stop and rest...don't push as it can cause you to feel worse.Keep a journal to see if what you eat also affects your symptoms....knowing , will only help you avoid what will make you feel worse and hopefully shorten the flare. Chiari symptoms cycle...so it is possible to have a flare that lasts week, months or years OR to have all the symptoms leave you for weeks, months or years...
The next thing is to continue to ask questions, educate yourself on Chiari and ALL related conditions and listen to your body, if you notice any changes let your Dr know....
Please do not look for a Dr that will do surgery, look for one that will look for other possibilities and explain why they can't do surgery, at this time..and know they are they for if things change.
I hope I haven't confused you more....if I have I am sorry and just ask questions and I will try to explain.
Know you are not alone.
One other reason besides the symptoms, is how a Dr would proceed should you qualify for a surgical treatment. EDS- Ehlers Danlos syndrome is a connective tissue disorder that many with Chiari seem to also have, EDS can cause us to have issues with medications, they tend to act on us or react on us differently than what is expected from the medication....it is possible to even have allergic reactions to meds you once were able to take. Novocaine at a dentist can take several attempts before you actually go numb, and then it can take days for it to wear off. But with surgery a possibility, it is also important to note that those with EDS can have reactions to foreign materials....such as items used for a duraplasty...even stitches/sutures. And then the troubles can get worse...since you may have had a foreign substance introduced during surgery, your body may overproduce CSF to wash it away....but too many Drs see just the excess CSF and treat it as Intracranial Hypertension and do yet another surgery this time to implant a shunt to drain the fluids.....and now you may have more CSF due to the shunt! It can become a vicious cycle.Far too few Drs may realize it is the foreign material causing the issue and not a by product of having the surgery. We are all different and some may develop issues post op, while other's may not....but knowing or ruling out other conditions will help your Drs know where to look should you have issues...and know to utilize your own tissues for a dura patch instead of using other available patches that may cause a reaction.
As for what other treatments that are out there for this condition...sadly, none....as I may have said earlier, surgery is not a cure, it is done to restore CSF flow and slow progression of the condition.
And unfortunately, no meds that worked for me with my symptoms.
I must tell you I did have surgery and I have seen benefits....but some people do not, or have had numerous surgeries .....as I stated above, we are all different...and how we respond to the symptoms, and the surgery will be different. That said, we all also heal at different rates. Immediately post op...so many have said how wonderful they felt...and then it seems the symptoms started to return....and they may, especially during healing...we go through different phases . It can take weeks, months or even years to see all the possible benefits from this surgery.
The best medicine is to listen to your body....restrict physical activities when you are in a flare, know when to stop and rest...don't push as it can cause you to feel worse.Keep a journal to see if what you eat also affects your symptoms....knowing , will only help you avoid what will make you feel worse and hopefully shorten the flare. Chiari symptoms cycle...so it is possible to have a flare that lasts week, months or years OR to have all the symptoms leave you for weeks, months or years...
The next thing is to continue to ask questions, educate yourself on Chiari and ALL related conditions and listen to your body, if you notice any changes let your Dr know....
Please do not look for a Dr that will do surgery, look for one that will look for other possibilities and explain why they can't do surgery, at this time..and know they are they for if things change.
I hope I haven't confused you more....if I have I am sorry and just ask questions and I will try to explain.
Know you are not alone.
You are educating me. I had my brain MRI on Dec 11th and saw the Neurosurgeon on the 13th. Well I didn’t get a chance to see the surgeon. I saw the Nurse Practitioner who was the go between. I went prepared list of symptoms, diagnosis to other conditions I have and list of meds. They were not interested at all. She asked me very few questions and checked my reflexes and asked me to push against and squeeze her hands. All they did was confirm my Chiari but told me my herniation isn’t big enough for symptoms. So they ordered a neck MRI to see if it’s something else. They told me symptoms are definitely not Chiari related. I left frustrated. What upset me most is that they failed to tell me I have a partially empty Sella and pseudo tumor cerebra/chronic Cranial Hypertension. I read the MRI report when I got home. I feel gaslighted and dismissed. And I’m scared.
Thank you for your help. I appreciate all that I can get.
Thank you for your help. I appreciate all that I can get.
The biggest problem is , if the Dr and their staff are not TRUE CHIARI SPECIALISTS you will get uneducated service/replies to your issues.
I had one Dr tell me I didn't have Chiari....since my heriation was 3mm and 6mm....but Chiari is not the herniation but the malformation of the skull....so, I knew that Dr and his staff were not Chiari specialists as they claimed... once you know what to look for in the Dr and staff you will know when you found one...and it may take time and seeing a few that leave you wondering why you went to them....
You didn't have a CINE MRI yet have you?
I had one Dr tell me I didn't have Chiari....since my heriation was 3mm and 6mm....but Chiari is not the herniation but the malformation of the skull....so, I knew that Dr and his staff were not Chiari specialists as they claimed... once you know what to look for in the Dr and staff you will know when you found one...and it may take time and seeing a few that leave you wondering why you went to them....
You didn't have a CINE MRI yet have you?
I don't even know what a CINE MRI is to be honest. They scheduled me for a neck/spine MRI on February 1st. The Brain MRI says I don't have Chiari because herniation is small but have Cerebellar tonsillar ectopia. I'm not even sure what's the difference between that and Chiari to be honest. I'm not even sure how to find a Doctor that is Chiari Specialist because when I asked if this past NS was the NP said we see a lot of Chiari here.
Chiari is the malformation of the skull.....Cerebellar tonsil ectopia is when the tonsils extend below the forman magmum.....this can occur after a blow to head or neck area....like from a fal or car accident.
It sounds to me like the Dr you saw doesn't know what Chiari is either....since they are basing it on the size of the herniation. In addition to the herniation there are other things to consider...things like a retro flexed odontoid, or a syrinx...which comes from an obstruction to CSF flow, which is why a CINE MRI is done....a CINE MRI is a video of CSF flow in real time to see if there is an obstruction to flow and how it is affected by your heart beat.What area do you live in? I had to travel out of state to get to a true Chiari specialist. Many I have talked to have also had to travel to find a Dr well informed and experienced with Chiari AND all related conditions.
It sounds to me like the Dr you saw doesn't know what Chiari is either....since they are basing it on the size of the herniation. In addition to the herniation there are other things to consider...things like a retro flexed odontoid, or a syrinx...which comes from an obstruction to CSF flow, which is why a CINE MRI is done....a CINE MRI is a video of CSF flow in real time to see if there is an obstruction to flow and how it is affected by your heart beat.What area do you live in? I had to travel out of state to get to a true Chiari specialist. Many I have talked to have also had to travel to find a Dr well informed and experienced with Chiari AND all related conditions.
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