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Could my symptoms be Chiari related?
Hi everyone. I'm so glad I found this site. Everyone I talk to about Chiari seems to get this "deer caught in a headlights look." Maybe I can talk to hunters this time instead of the deer, lol.
I apologize greatly about the length of my post before hand, but I tend to type how I talk. Ok...I was diagnosed with migraines at the age of 16. I had them severely until I had my first baby at 23. I am bipolar and have an esophageal ulcer. I am on more meds than the pharmacy has in stock (or so it seems). When I was in labor with my daughter (baby#4) I had an epidural. They poked into the dura, and caused a spinal leak. For the next few days I wanted to die. The spinal headache was worse than all 4 of my labors combined. I had a blood patch and after a week or tow the headache for the most part was gone.
Fast forward to June of this year. I had gotten out of my car to go into the bank, when I felt this pressure building from my neck into my head. Kinda like if you imagine a thermometer, and as is rises it explodes through the top? That was me. I got a headache as this happened... and I lost vision in half of my left eye for a about a minute. It was like a black curtain, and was peeled back. After that I just left it be. I had problems seeing while driving at night, my judgement just seemed off. I was having extreme dizziness and fatigue on and off. In August I started feeling numbness in my left hand and leg. It got so bad that I called an ambulance. Well, the ER did crap. They looked at me like I was nuts (since they knew I was bipolr) they brushed it off as anxiety. I am a veteran of the depression wars. This was NOT anxiety.
Let the testing begin! I had a sonogram of my carotid arteries, and an echcardiogram ruling out any blockage. They were fine. I had a ton of bloodwork.. my lithium level (I am on a high dose of it) was fine, my thyroid, B-12, Lyme, cholesterol, sugar, etc all fine. The suspected issue was MS. I had a scary episode when my whole left side went totally numb, I had trouble walking and I couldn't swallow. My throat seemed like it didn't "get" was I was trying to tell it to do. It eased up by the next day. I went for an MRI of the brain. My doc told me there were early signs of possible demyliniation and sent me to a neuro, suspecting MS. BUT he also told me my brain my sitting low in my skull. I was like, uhhh ok... The actual report said:
"The cerebellar tonsils are low-lying, extending 2 mm below the level of the foramen magnum without dysplasia. Low lying cerebellar tonsils that do not reach the criteria for Chiari 1 malformation."
As I did research of Chiari I noticed an almost exact set of symptoms as is the case with MS. The numbness has ceased other than a little in my lip area every now and again. Now my issue is headache. Last month the dizziness and fatigue would come out of nowhere, and I literally felt like I was falling asleep standing up. The headache lasted for a week. Then after it would be lessened but still there. Now.... I have had this pain in my neck which radiates to my shoulders (never goes past there) The pain is unbelievable. It feels sometimes like a pulled muscle, or like it's balled up. I can't turn my head most of the time. The neuro thought it was a muscle spasm, and gave me a shot of steroids and a script for muscle relaxers. They do nothing but help me sleep. Tylenol, aspirin, alleive, nothing works. The steroids however did. For almost a month. Now the pain is back and my doc is on vacation for another 2 weeks. He sent me for an MRI of my spine which he pointed out the disks were fine but odd and so signs of a syrinx and no spinal lesions. He told me we still can't rule out MS. Now I have to go for ANOTHER MRI of the brain this time with contrast. I was going to go and have them done (I have to see him the 22nd) If it's MS he is probably going to want me to start the injections. At this point, I want a second opinion.
Any suggestions on where I should go from here? I am in NY and I know the Chiari Institute is in Long Island but I can't go where my insurance isn't accepted. How can I go about finding a private doc that has experience with Chiari? I just can't take this anymore. I am divorced with 4 children and they need me to be functioning, not directing them to do this and that from the couch. Sorry again for the novel (I think I hear a few people snoring) :)
Jessica
I apologize greatly about the length of my post before hand, but I tend to type how I talk. Ok...I was diagnosed with migraines at the age of 16. I had them severely until I had my first baby at 23. I am bipolar and have an esophageal ulcer. I am on more meds than the pharmacy has in stock (or so it seems). When I was in labor with my daughter (baby#4) I had an epidural. They poked into the dura, and caused a spinal leak. For the next few days I wanted to die. The spinal headache was worse than all 4 of my labors combined. I had a blood patch and after a week or tow the headache for the most part was gone.
Fast forward to June of this year. I had gotten out of my car to go into the bank, when I felt this pressure building from my neck into my head. Kinda like if you imagine a thermometer, and as is rises it explodes through the top? That was me. I got a headache as this happened... and I lost vision in half of my left eye for a about a minute. It was like a black curtain, and was peeled back. After that I just left it be. I had problems seeing while driving at night, my judgement just seemed off. I was having extreme dizziness and fatigue on and off. In August I started feeling numbness in my left hand and leg. It got so bad that I called an ambulance. Well, the ER did crap. They looked at me like I was nuts (since they knew I was bipolr) they brushed it off as anxiety. I am a veteran of the depression wars. This was NOT anxiety.
Let the testing begin! I had a sonogram of my carotid arteries, and an echcardiogram ruling out any blockage. They were fine. I had a ton of bloodwork.. my lithium level (I am on a high dose of it) was fine, my thyroid, B-12, Lyme, cholesterol, sugar, etc all fine. The suspected issue was MS. I had a scary episode when my whole left side went totally numb, I had trouble walking and I couldn't swallow. My throat seemed like it didn't "get" was I was trying to tell it to do. It eased up by the next day. I went for an MRI of the brain. My doc told me there were early signs of possible demyliniation and sent me to a neuro, suspecting MS. BUT he also told me my brain my sitting low in my skull. I was like, uhhh ok... The actual report said:
"The cerebellar tonsils are low-lying, extending 2 mm below the level of the foramen magnum without dysplasia. Low lying cerebellar tonsils that do not reach the criteria for Chiari 1 malformation."
As I did research of Chiari I noticed an almost exact set of symptoms as is the case with MS. The numbness has ceased other than a little in my lip area every now and again. Now my issue is headache. Last month the dizziness and fatigue would come out of nowhere, and I literally felt like I was falling asleep standing up. The headache lasted for a week. Then after it would be lessened but still there. Now.... I have had this pain in my neck which radiates to my shoulders (never goes past there) The pain is unbelievable. It feels sometimes like a pulled muscle, or like it's balled up. I can't turn my head most of the time. The neuro thought it was a muscle spasm, and gave me a shot of steroids and a script for muscle relaxers. They do nothing but help me sleep. Tylenol, aspirin, alleive, nothing works. The steroids however did. For almost a month. Now the pain is back and my doc is on vacation for another 2 weeks. He sent me for an MRI of my spine which he pointed out the disks were fine but odd and so signs of a syrinx and no spinal lesions. He told me we still can't rule out MS. Now I have to go for ANOTHER MRI of the brain this time with contrast. I was going to go and have them done (I have to see him the 22nd) If it's MS he is probably going to want me to start the injections. At this point, I want a second opinion.
Any suggestions on where I should go from here? I am in NY and I know the Chiari Institute is in Long Island but I can't go where my insurance isn't accepted. How can I go about finding a private doc that has experience with Chiari? I just can't take this anymore. I am divorced with 4 children and they need me to be functioning, not directing them to do this and that from the couch. Sorry again for the novel (I think I hear a few people snoring) :)
Jessica
COMMUNITY LEADER
Hi...there is a Dr in NY that used to work with TCI and u may want to check him out, look at the Drs list for NY ....u will have to call to see if he works with ur ins tho.
There r too many NS's that know about chiari but have old outdated info, and they look to the size of the herniation instead of the obstruction it is causing.
This is y u want a true chiari specialist they do their own research on chiari.
And many that do their own research know 2mm herniation can cause more of an issue than a 13mm one if it is causing an obstruction......
And u want to know if u have ne of the related conditions b4 u have surgery as they can affect ur recovery.
"selma"
Hi Selma...
I posted here in the beginning of November about my "dilemma". Well, right now I'm at a standstill. The last I posted that I was going for a second MRI of the brain (this one with contrast). So... I had an MRI of the brain (which my primary said my brain was lying low in my skull and my tonsills are herniated by 2mm), my neuro completely brushed that idea off. He sent me for another MRI of the cervical spine (with no MS lesions) and another MRI of my brain with contrast which my Neuro said "was fine. So
he Iooks at me and says, " You don't have MS". I said great! Then what do I have? Weeelll..... have you ever had physical therapy?" I was like no, why? He said, "Well that is an option, and here is a script for Lyrica." I asked what that was and he said for (I'm not sure if it was for nerves or THE nerves). But that it may counter act with my current anti-depressant (I'm bipolar) I felt like he thought I was just nuts, and pawning off more meds on me. And what the heck is he going to send me for therapy for... he doesn't have a part that can be focused on! This, after telling him that now (for the first time), my numbness is now on my right side, my face has been going numb, and I couldn't swallow over the weekend.
I went to my primary today and asked if I could get a second opinion with another neurologist. He agreed. He said that this guy actually just diagnosed another patient of his with Chiari and she had surgery. BUT, I don't think he takes my insurance. I have to call Monday and check.
The Chiari place in NYC isn't an option for me since they don't take my ins, and I cannot pay upfront. Is there any way I can find out if some docs at least have SOME expeience in treating chiari? I am desperate here. Thanks a bunch
Jessica
I posted here in the beginning of November about my "dilemma". Well, right now I'm at a standstill. The last I posted that I was going for a second MRI of the brain (this one with contrast). So... I had an MRI of the brain (which my primary said my brain was lying low in my skull and my tonsills are herniated by 2mm), my neuro completely brushed that idea off. He sent me for another MRI of the cervical spine (with no MS lesions) and another MRI of my brain with contrast which my Neuro said "was fine. So
he Iooks at me and says, " You don't have MS". I said great! Then what do I have? Weeelll..... have you ever had physical therapy?" I was like no, why? He said, "Well that is an option, and here is a script for Lyrica." I asked what that was and he said for (I'm not sure if it was for nerves or THE nerves). But that it may counter act with my current anti-depressant (I'm bipolar) I felt like he thought I was just nuts, and pawning off more meds on me. And what the heck is he going to send me for therapy for... he doesn't have a part that can be focused on! This, after telling him that now (for the first time), my numbness is now on my right side, my face has been going numb, and I couldn't swallow over the weekend.
I went to my primary today and asked if I could get a second opinion with another neurologist. He agreed. He said that this guy actually just diagnosed another patient of his with Chiari and she had surgery. BUT, I don't think he takes my insurance. I have to call Monday and check.
The Chiari place in NYC isn't an option for me since they don't take my ins, and I cannot pay upfront. Is there any way I can find out if some docs at least have SOME expeience in treating chiari? I am desperate here. Thanks a bunch
Jessica
COMMUNITY LEADER
Hi...no size does not matter...this is the best way I can explain this-
Imagine the tonsils as long shoe string licorice....string it down thru a funnel, if u were to pour water down the funnel it will not be obstructed with this long licorice hanging down there...BUT, if the tonsils were short and wide like a gumdrop and upside down in the funnel it would cork it up!
So size matters, but not the one they give us...the measurement they give is the length.....
U need to know do u have an obstruction, and over crowding?.....
Yeah give them a call and let them know what ins u have and that u want to meet with the NL...if u want to see the NS u have to pay cash or check and I am not sure what the current fee is.They may work with u and if u appeal ur ins comp. and let them know u need someone to review this situation they may cover it.
I had my DD in '84 and was not dx'd with chiari until Feb. '08......
Hoping this helps : )
"selma"
I think when I looked at TCI I was looking at their website, and seeing if any of the docs listed were in my insurance plan. I am going to check it out again. At the risk of sounding dumb, if I am looking for a second opinion for what I am going through now, would I just call them?
As for the CSF leak.... I had my daughter in February of '06. It seems like in this past year all these symptoms hit me like a ton of bricks. I may have had issues here and there over the years but nothing overly dramatic as what I've been dealing with.
And basically, as far as herniation goes, you're telling me that size DOES matter? ;-) tee-hee . I've told people this for years because I am only 4'9" lol... Every millimeter counts! :)
As for the CSF leak.... I had my daughter in February of '06. It seems like in this past year all these symptoms hit me like a ton of bricks. I may have had issues here and there over the years but nothing overly dramatic as what I've been dealing with.
And basically, as far as herniation goes, you're telling me that size DOES matter? ;-) tee-hee . I've told people this for years because I am only 4'9" lol... Every millimeter counts! :)
I haven't had surgery. I am learning to live with my symptoms and while it's no fun at all, the surgery isn't a cure so I'm not willing to take the risk just yet. But the visit to Dr. Heffez gave me an option for if and when I do decide to have it done.
Hi there, neighbor! (Well, sorta, lol) Yes, I am pretty close to the city. I'm in Orange County which is about an hour and a half from. I know the city well (I am from Brooklyn). You didn't mention, but did you have the surgery? Thanks for the pep talk :)
Welcome to the Chairain run around. I feel your flustration. As for me. I went for 2 to 3 year's and many dx's later to find out I had Chairi. Just spelling the word let alone understanding it is awful. Throughout my journey of finding answer's to Chairi I was dx's with depression, anxiety, carpetunnel, TMJ etc. it was a crazy journey. I went from being as healthy as a horse to so many different illnesses. I had a friend once tell me after I was telling her I was feeling like I was going crazy. She said. "You know your body, and you know there is something wrong. Be persistant and you will find the doctor with the anwer's". I wanted to pass this advise down to to because it is very true. I am happy to say I did find the answer's and the right doctor. Just keep being persistant and you will find the answer's you are looking for. I actually went to a very highly recommended hospital and they stated to me I had Chairi but they didn't think it was necessary for surgery. I couldn't even live life any more because the pressure in my head was so strong. Today I can say the pressure is gone, but the Chairi will never go away. This is something I had a hard time to come to terms with. I thought having surgery would be the answer to every thing, but it isn't alway's so. I am now going to a pain clinic because I still am dealing with pain, but no pressure thank goodness. Every body has different issues, but it all end's up the same we deal with Chairi. We are alway's here for you to listen and support. We are not alone in this, and this website has been a blessing to me. There is a doctor out there for you. Just keep your bright light's on and they will come to you. LOL. A little deer joke. Keep us posted.
COMMUNITY LEADER
HI and welcome to the Chiari forum.
May I ask, is it ur insurance that TCI in Long Island does not accept or is it the NS?....U might be able to go, and see the NL....they work with ins, the NS do not.
If it is ur ins all together, there are a few Drs in NYC that have worked with TCI and may be able to help u.
We have a list of drs compiled by the members, this is not a referral, just a means to start ur research.-http://www.medhelp.org/health_pages/Neurological%20Disorders/DOCTORS-LIST-FOR-CHIARI-SYRINGOMYELIA/show/1062?cid=186
The size of the herniation is not the issue, it is the width, and they do not measure that....it is the wide tonsil that obstructs CSF flow, not long thin ones....so the means to determine criteria is outdated to say the least.
U did not mention how long ago u had child #4...so I do wonder how long u r dealing with this...I too had a CSF leak from a epidural for childbirth...I did however have symptoms prior to all of that.....so it only added to it all.
As Jen mentioned ur leak could have intensified ur issues u already had....what many Drs do not realize out side that chiari does cause symptoms, no matter the size herniation, but symptoms cycle as well.
I am sure u will find a Dr that can help....it can be a bumpy ride....
Hang in there : )
"selma"
No snoring here :) You've done your research well. 2mm is "small" by pretty much any standard, but even small herniation can cause horrific symptoms. But try convincing a doctor of that! Mine is 4mm.
Your best bet is to get to a Chiari specialist. I'm responding specifically because I am also in NY...upstate though in CNY. Are you nearish the city? If so you might have more luck finding a specialist on the list in this forum's health pages. I personally could not find anyone in upstate NY, Chiari Institute was also not an option for me, and so I flew to Milwaukee, WI to see Dr. Heffez.
Your symptoms do sound like Chiari, and a spinal fluid leak from an epidural is absolutely a possible cause. Keep up your research, and don't give up!
Your best bet is to get to a Chiari specialist. I'm responding specifically because I am also in NY...upstate though in CNY. Are you nearish the city? If so you might have more luck finding a specialist on the list in this forum's health pages. I personally could not find anyone in upstate NY, Chiari Institute was also not an option for me, and so I flew to Milwaukee, WI to see Dr. Heffez.
Your symptoms do sound like Chiari, and a spinal fluid leak from an epidural is absolutely a possible cause. Keep up your research, and don't give up!
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