2mm or 5mm...?

General
1

I've long suffered with headaches.. 20 plus years of them in fact. Over that time I've gone for all the standard treatments,..and the not so standard treatments. I've seen the neurologists, the specialists, the chiropractors, the snake oil herbalists, the self-help bodhisattvas, and have eaten enough Advil to put a whale in a coma.

Somewhere along the way I started having other symptoms. My vision changed overnight. I can't really explain the difference it caused. I just know it changed, and for the last 12 years it's never been the same. Of course I got my eyes checked and have perfect vision.

Fast forward to 5 years ago. I started having numbness and tingling in the outside of my left foot. Then 3 years ago I started to have the same condition in my left hand. It has since deteriorated to the point where I now feel like I'm dragging my leg around like a pirate, and I might as well keep my left hand in my pocket because I don't trust it to do anything important. Of course nobody "believes" me. I look perfectly healthy, so I must be making all of this up.

My symptoms have gotten so pronounced that I recently went back to the neurologist...again, and he ordered an MRI...again. This time however, I didn't receive the free and clear bill of health I'd gotten so many times before. According to the radiology report, the scans showed a 2 to 3mm hernia of the tonsils of the cerebellum.

When I heard this news I thought to myself, "Ok, first of all, how did my tonsils get into my brain?...and secondly, "Vindication...Is....Sweet," as I've told everyone a million times that I wasn't losing my mind. After doing some research, I found out that I was literally "losing my mind," through the hole in the bottom of my head.

Despite the gravity of this news, I felt a sense of relief knowing that this monster now had a face, and no matter if I took it out, or it took me out, we were about dance in the same ballroom.

You know you're in a tough spot when bad news seems good, and good news seems bad. I got another dose of the bad good news when my neurologist took a look at the scans for himself. I received a phone call from the doctor while on my daily commute home from the office. He began to confidently pronounce that the 2 to 3mm nuclear explosion going off in the back of my head could not possibly be causing any of my symptoms. Upon hearing this news I simply burst into confetti in the middle of the interstate. I had been robbed of that good bad news I needed so dearly.. yet again.

I don't want this condition. I don't want any condition. I've just suffered and fought long enough to know that any possibility of discovering what's wrong is worth pursuing to it's logical conclusion, and I don't believe that's been done.

So now I guess I'm on to second and third opinions, as my doctor's belief that this is no big deal, and a lot of the information I've found over the last few days don't seem to agree. Just wondering if anyone else has gotten a similar runaround, only to find out that they needed treatment for this condition.

Thanks

2

Abby.. thank you for the reply. I've read that many people suffer for very long periods of time before their Chiari is discovered. I guess that's partly what makes this so difficult. Not only do you have the symptoms.. you also have to endure the wait, and wonder if everyone "is" right after all and you were really just stressed.

3

Bucky, my herniation was small and I was also told by several NSs it was not causing my symptoms. If it makes you feel any better people with large herniations get told the same thing too. It can be a long and painful journey to get diagnosed. The good news…There are skilled Chiari NSs who appreciate small herniations and Chiari 0, they are just a bit fewer and farther in between. A cine flow MRI can get a clearer picture of how the CSF is being blocked- but just like herniation size this is not the clincher either. The decision to have surgery should be based on MRI findings, symtoms, neuro deficits, and quality if life.

Please also take a look at some of the other conditions that tag along with Chiari, this may save you some time and frustration in the future. Not all people with Chiari have these conditions, but many of us have one or all of them.

Ehlers Danlos Syndrome/hypermobility Syndrome- can cause instabilities of the cranio cervical joint and of any other joint in the body.

Dysautonomia

Tethered cord

Sleep apnea

Vitamin D deficiency

We are glad you are here,

Jenn

4

Thank you for the kind words. I am working on setting up these additional tests to see what other info I can get. If you don't mind me asking, did you end up finding that the Chiari was in fact causing your symptoms,...how were you treated?

Thank you.

jcdemar said:

Bucky, my herniation was small and I was also told by several NSs it was not causing my symptoms. If it makes you feel any better people with large herniations get told the same thing too. It can be a long and painful journey to get diagnosed. The good news...There are skilled Chiari NSs who appreciate small herniations and Chiari 0, they are just a bit fewer and farther in between. A cine flow MRI can get a clearer picture of how the CSF is being blocked- but just like herniation size this is not the clincher either. The decision to have surgery should be based on MRI findings, symtoms, neuro deficits, and quality if life.

Please also take a look at some of the other conditions that tag along with Chiari, this may save you some time and frustration in the future. Not all people with Chiari have these conditions, but many of us have one or all of them.

Ehlers Danlos Syndrome/hypermobility Syndrome- can cause instabilities of the cranio cervical joint and of any other joint in the body.

Dysautonomia

Tethered cord

Sleep apnea

Vitamin D deficiency


We are glad you are here,

Jenn
5

I had my decompression done with Dr Heffez (he is one of the Chiari NSs that doesn’t get hung up on herniation size) I felt a lot better for the first 4 months, but then the headache came back but even worse. My vision and dizziness remain better since surgery. I am waiting to see another surgeon to see if I have a cranial cervical instability (CCI can make symptoms worse after decompression). I think that is why my headache came back. I do believe that Chiari and instability are/were the source of my symptoms. After years of searching and barking up the wrong trees, Chiari is the only thing that has ever made any sense. Please ask if there are any questions on your mind- most of what I know I’ve learned from others on this site.

6

It is good to hear that you have begun to find the answers.I know how it is to wait forever before finding help (27+ yrs.)Herniation is not as important as so many NSs claim.The symptoms are what matters and chiari0 is being looked at now by the specialists who are knowledgable in the chiari field.The lack of knowledge is why so many are suffering for so long.It is good to see that some are stepping outside the box for a change hopefully it will catch on for some of the reg. Medical field.Keep looking for the right NS maybe things will get better for you soon.

7

Again.. I appreciate all the kind words from everyone. I've got the ball rolling with a different NS group, so hopefully I will soon be able to get the additional tests I need that all of the specialists seem to require.

..on a side note.. does anyone else experience the muscle tension on one side.. In other words my entire left side seems to constantly be in a state of muscle contraction and will just not let go. Aside from the headaches this has got to be the hardest symptom I deal with.

8

My herniation was approx 10mm and I had two neurologists tell me it was not the cause of my symptoms. I finally found a specialist who ordered a CINE MRI to check CSF flow and found it to be impeded. I had surgery in October of 2012 and luckily my symptoms have vastly reduced. It's so frustrating to get the run-around from doctors.

My right side has always been much worse than my left to answer your second question.

9

Bucky,

I am new to this forum and just read your post. Besides making me laugh, which was very much needed, I am also in a similar boat. I have a 6mm herniation which the Neurosurgeons like to call “mild”. I’ll just say this…if something is strong enough to cause the symptoms it has, there is nothing “mild” about it. There are people with 2mm herniation that have more symptoms than someone with a 20mm herniation. It has noting to do with the length, it is the width that matters. If it’s too wide, it causes CSF obstruction which in turn equals surgery to restore the flow. People with Chiari need a CINE MRI done which strictly checks the CSF flow. If you haven’t had one done…that’s the first thing you will want to do.

I am very symptomatic but doctors don’t seem to think 6mm is enough. Ugghh!!

Hang in there.

10



hevnw8s said:

Bucky,

I am new to this forum and just read your post. Besides making me laugh, which was very much needed, I am also in a similar boat. I have a 6mm herniation which the Neurosurgeons like to call "mild". I'll just say this....if something is strong enough to cause the symptoms it has, there is nothing "mild" about it. There are people with 2mm herniation that have more symptoms than someone with a 20mm herniation. It has noting to do with the length, it is the width that matters. If it's too wide, it causes CSF obstruction which in turn equals surgery to restore the flow. People with Chiari need a CINE MRI done which strictly checks the CSF flow. If you haven't had one done...that's the first thing you will want to do.

I am very symptomatic but doctors don't seem to think 6mm is enough. Ugghh!!

Hang in there.
Thanks for the comment.. I love to laugh too. I try not to take anything too seriously, even something this heavy. When it's all said and done, that's probably all we have anyway. Just our moment in time,.. imprinted with whatever love and laughter we decided to leave behind. I don't like to use the word belief.. but I deeply suspect that everything for each of us will be alright. Always has been.. Always will be. OleBucky
11

Dear Bucky,

Believe me when I say very few doctors agree about anything with Chiari. I am here to tell you do not let that stupid doctor take your relief away. I, like you, have gone all my life with problems. I had severe headaches as far back as I can remember. I would cry out in my sleep and my mother would come and get me up and hold my head in her lap and rub it first one way and then another until she found something that eased the pain. I had pneumonia from my early 20's until I was 38 and a doctor in the emergency room told me I was healthy as a horse again. I told him if I was so damn healthy to please give me a gun so I could go home and blow my brains out. I had no intentions of doing that mind you, I was just so tired of hearing there was nothing wrong. He changed his mind and long and short of it, they found I was born with a hole in my heart at birth. After having that repaired, I felt better but still had headaches and had a car accident shortly after. I then started having neck, shoulder, arm and back pain. Fast forward to 5 yrs ago, all kinds of doctors and test and nobody could find anything wrong. I started forgetting things and getting lost and confused. I went to a nuerologist and he found the Chiari but never told me. 3 years later and I went to another one and they both put it in my records but never told me 1 word about it. I went to my regular doctor and told her I was losing it because nobody could find out what was wrong and she said, you have a chiari, you know that right. I felt just like you, so relieved and excited to know what was wrong. I went back to the first jerk to ask him to write me a letter for disability and he told me pretty much that he was the doctor the courts sent people to and he did not think the chiari was my problem. I just had another MRI done yesterday and I am eventually going to Maryland because they are specialist in the field. Find a real doctor around your area. If he had of told me this 5 years ago, I had a job, insurance and a healthy retirement fund. Now I have no job, no insurance, and all of our retirement fund is gone. Do not let one doctor get you down, it will not be an easy road, but if you keep looking, you will find a doctor who really cares about you. God Bless and keep you. Prayers and love being sent your way. Debra

12



littledeb said:

Dear Bucky,

Believe me when I say very few doctors agree about anything with Chiari. I am here to tell you do not let that stupid doctor take your relief away. I, like you, have gone all my life with problems. I had severe headaches as far back as I can remember. I would cry out in my sleep and my mother would come and get me up and hold my head in her lap and rub it first one way and then another until she found something that eased the pain. I had pneumonia from my early 20's until I was 38 and a doctor in the emergency room told me I was healthy as a horse again. I told him if I was so damn healthy to please give me a gun so I could go home and blow my brains out. I had no intentions of doing that mind you, I was just so tired of hearing there was nothing wrong. He changed his mind and long and short of it, they found I was born with a hole in my heart at birth. After having that repaired, I felt better but still had headaches and had a car accident shortly after. I then started having neck, shoulder, arm and back pain. Fast forward to 5 yrs ago, all kinds of doctors and test and nobody could find anything wrong. I started forgetting things and getting lost and confused. I went to a nuerologist and he found the Chiari but never told me. 3 years later and I went to another one and they both put it in my records but never told me 1 word about it. I went to my regular doctor and told her I was losing it because nobody could find out what was wrong and she said, you have a chiari, you know that right. I felt just like you, so relieved and excited to know what was wrong. I went back to the first jerk to ask him to write me a letter for disability and he told me pretty much that he was the doctor the courts sent people to and he did not think the chiari was my problem. I just had another MRI done yesterday and I am eventually going to Maryland because they are specialist in the field. Find a real doctor around your area. If he had of told me this 5 years ago, I had a job, insurance and a healthy retirement fund. Now I have no job, no insurance, and all of our retirement fund is gone. Do not let one doctor get you down, it will not be an easy road, but if you keep looking, you will find a doctor who really cares about you. God Bless and keep you. Prayers and love being sent your way. Debra

Deb,

Thank you so much for the kind words. I'm working very hard on finding the right doctor to move forward with. Hopefully, I'll have that squared away soon and I can start getting to the bottom of this. It's interesting you mentioned several doctors finding your chiari, but not telling you. On this last MRI I had to go to a hospital separate from the one where my neurologist "practices." He got the report after the test, but he did not receive the scans directly. I had to take the scans by his office myself the next day. I would bet that if he had received them and reviewed them before our first call he may not have said anything about it. Of course that it total speculation, but judging by the way he interpreted the news I can't help but wonder... and that is gut wrenching to think about.

13

In all honesty, size doesn't matter. Some people, like myself, have 11-12 mm and have few symptoms. Other have Chiari 0, and have a monstrous amount of problems. You aren't crazy and you aren't alone. When it comes to docs, keep in mind that most of them are jerks (not just neros either). Do you makes you feel more comfortable. You want a second MRI and a second opinion? Do it! You are the only one in your shoes. So do what makes you happy.

14



Surya said:

In all honesty, size doesn't matter. Some people, like myself, have 11-12 mm and have few symptoms. Other have Chiari 0, and have a monstrous amount of problems. You aren't crazy and you aren't alone. When it comes to docs, keep in mind that most of them are jerks (not just neros either). Do you makes you feel more comfortable. You want a second MRI and a second opinion? Do it! You are the only one in your shoes. So do what makes you happy.

Thank you for the kind words Surya.. I'm working hard to find the right doctor.. I agree that only you know what's best for yourself. With something so poorly understood like Chiari, we are all up against a lot of adversity along the way.

15

Size doesn’t matter. I’m not sure how long ago you started your journey and trying to find the right doctor but it always seems to take a long time. I am on my third Neurosurgeon, hopefully this will be the one, and it took three Neurologists to find the one I have been with for two years. I have a 6 mm herniation and excruciating symptoms. The lack of understanding with some of these doctors cause more undue suffering for us trying to make them understand. I have faith you will find the one who will have the answers for you. Make sure you don’t settle for incomplete answers…you deserve to be taken care of by the best.
Kim

16

I completely understand where you are now,for 28yrs.my suffering was a living hell.In my case there were many Dr.s of all kinds with very little help.I hope you can succeed in getting second opinions,as for me that was impossiable,no one could find anything when looking at MRIs except for one specialist who knows lots about this illness and is a pioneer in this field.He listened to me,did a more detailed exam,tilt table test and was able to dx a crowding of the brain stem.My research and getting the right NS was my only chance to try to change my life,my case was a hard one to dx.The cereberal tonsil was the problem with me it was pressing into the brain stem but it was a chiari0,most NSs don’t even believe the there can be symptoms in that case.It is finally being recognized by a few specialists.The key is to find a NS who is a specialist in the chiari field,without finding someone who knows what to look for it might come down to doing the research for yourself then stepping out when you carefully concider the symptoms.You are the only one who feels the pain and knows when you’re ready to have a decompression,it has been a God send for me.Keep us posted.

17



Lynn Messer said:

I completely understand where you are now,for 28yrs.my suffering was a living hell.In my case there were many Dr.s of all kinds with very little help.I hope you can succeed in getting second opinions,as for me that was impossiable,no one could find anything when looking at MRIs except for one specialist who knows lots about this illness and is a pioneer in this field.He listened to me,did a more detailed exam,tilt table test and was able to dx a crowding of the brain stem.My research and getting the right NS was my only chance to try to change my life,my case was a hard one to dx.The cereberal tonsil was the problem with me it was pressing into the brain stem but it was a chiari0,most NSs don't even believe the there can be symptoms in that case.It is finally being recognized by a few specialists.The key is to find a NS who is a specialist in the chiari field,without finding someone who knows what to look for it might come down to doing the research for yourself then stepping out when you carefully concider the symptoms.You are the only one who feels the pain and knows when you're ready to have a decompression,it has been a God send for me.Keep us posted.
Thank you Lynn for the kind words.. I will keep everyone posted as I move forward. As hard as this is, I'm glad that I at least have a general direction to move forward. Not knowing what could even be wrong has got to be one of the hardest things to go through..... well maybe surgery and recovery.. I can't speak to that right now.
18

I have been dealing with neck pain and headaches for 14 years…along with lots of other unexplained symptoms. I have had every treatment from muscle relaxers , pain killers, physical therapy, botox injections to nerve blockers/trigger point injections. The pain clinic even had me on methadone. None of this worked so I gave up for 8 years. I finally went back to my neurologist because I am having headaches almost daily. I gave him a list of all my symptoms once again and this time her finally said it sounded like Chiari. I had asked him about possibly having Chiari in 2005 but he didn’t feel that was the problem. To make a long story short, he sent me for a brain MRI. It showed several different things. Increased fluid/pressure on the optic nerve sheath. My pituitary fossa is slightly flattened. Which could be pseudotumor cerebri. It also showed my cerebellar tonsils 1 mm below the foramen magnum. My neurologist said its not Chiari. I sent my scans to a neurologist that specializes in Chiari and he said he thought I had a small 1 mm Chiari. He wanted to do his own tests including a brain and cervical MRI with contrast dye but my insurance denied it. It is so frustrating.

19

CShinaberry, I totally understand you, it is very frustrating to go through this run-around. I am still searching for the right doctor as we speak. I'm still hopeful however.

CShinaberry said:

I have been dealing with neck pain and headaches for 14 years...along with lots of other unexplained symptoms. I have had every treatment from muscle relaxers , pain killers, physical therapy, botox injections to nerve blockers/trigger point injections. The pain clinic even had me on methadone. None of this worked so I gave up for 8 years. I finally went back to my neurologist because I am having headaches almost daily. I gave him a list of all my symptoms once again and this time her finally said it sounded like Chiari. I had asked him about possibly having Chiari in 2005 but he didn't feel that was the problem. To make a long story short, he sent me for a brain MRI. It showed several different things. Increased fluid/pressure on the optic nerve sheath. My pituitary fossa is slightly flattened. Which could be pseudotumor cerebri. It also showed my cerebellar tonsils 1 mm below the foramen magnum. My neurologist said its not Chiari. I sent my scans to a neurologist that specializes in Chiari and he said he thought I had a small 1 mm Chiari. He wanted to do his own tests including a brain and cervical MRI with contrast dye but my insurance denied it. It is so frustrating.
20

I have found a doctor for a second opinion but I live in Virginia and he is in Wisconsin. I don't mind traveling for a good doctor. My problem now is dealing with my insurance. They don't want to approve another MRI since I just had one in February. Unfortunately it wasn't done with contrast dye due to the possibility of being pregnant. So now I have to deal with trying to appeal their decision. My local doctor is sending me for an EEG test next week. I also have to see the endocrinologist.

Its hard to deal with because no one really understands how you feel unless they have the same problem. Family, friends, doctors.....none of them understand. :(



BuckyG said:

CShinaberry, I totally understand you, it is very frustrating to go through this run-around. I am still searching for the right doctor as we speak. I'm still hopeful however.

CShinaberry said:

I have been dealing with neck pain and headaches for 14 years...along with lots of other unexplained symptoms. I have had every treatment from muscle relaxers , pain killers, physical therapy, botox injections to nerve blockers/trigger point injections. The pain clinic even had me on methadone. None of this worked so I gave up for 8 years. I finally went back to my neurologist because I am having headaches almost daily. I gave him a list of all my symptoms once again and this time her finally said it sounded like Chiari. I had asked him about possibly having Chiari in 2005 but he didn't feel that was the problem. To make a long story short, he sent me for a brain MRI. It showed several different things. Increased fluid/pressure on the optic nerve sheath. My pituitary fossa is slightly flattened. Which could be pseudotumor cerebri. It also showed my cerebellar tonsils 1 mm below the foramen magnum. My neurologist said its not Chiari. I sent my scans to a neurologist that specializes in Chiari and he said he thought I had a small 1 mm Chiari. He wanted to do his own tests including a brain and cervical MRI with contrast dye but my insurance denied it. It is so frustrating.