Dx despite not being "textbook" case

Has anyone been diagnosed w/ Chiari despite not being a "textbook" case? My MRI report states that my cerebellar tonsils are at the level of the foramen magnum. I've read that some people don't have herniated tonsils yet still have sx of chiari that should be taken seriously. I have every sx imaginable of chiari & truly believe I have it. How do you get proper diagnosis? Is there a specific MRI that thoroughly evaluates the craniocervical junction?

Hi....

I am sorry that you are suffering so... I wanted to know if you have had a CINE MRI yet..that shows the flow of your spinal fluid....that would be a test that IMHO should be done , given your Sx's even though you do not have a herniation..also, just to through this out there...hopefully , others will chime in....

When we get an MRI we are laying flat....which , if you think about it.....gravity takes place..it is possible that your tonsils are below the forman magnum but since you were laying flat if does not appear in the MRI.

Has a Neurosurgeon looked at this MRI and seen you??? My experiences with NL's were not at all helpful...my NS explained the reason that most NL's are not up on Chiari is many issues...lack of education, they don't see many patients with Chiar..they are 'Old School" the 5 mm RULE...which is now proven to be not true...one can have a 4 mm Chiari and have head to toe Sx's where the next person can have a 10mm Chiari and have no Sx's......

I am rambling..sorry..hope you get answers and relief...just never giove up trying to get help...help is out there but unfortunately, we Chiarians have to navigate the medical system on our own many times to get the proper Dx and thus treatment.

Please let us know how you are doing...YOU ARE NOT ALONE!!!!

Lori

Thank you!!!

LORI...I have been saying that to all these "smart" doctors - when you keep doing the MRIs laying me down they do not see what happens when I'm upright. The only position I am OK in is laying in a recliner b/c it removes the pressure from my spinal cord/base of skull (and some days I have to spend hours that way b/c my sx are so severe). Since my tonsils are right at the foramen magnum in the MRI I bet you're right...once gravity kicks in they probably do hang down.

I have not had a cine MRI and can only hope a Dr will eventually believe me and order it. I am scheduled to see a NL next week - didn't think it would be helpful but not sure what else to do. Trying to get in with a NS who specializes in chiari in the Boston area but was told he needed to see my MRI first and then would decide if he will see me which upset me. Since I'm not "textbook" I'm afraid I'm going to be blown off before I even get to tell him about all the awful sx I have.

I am convinced that there is CSF obstruction as I keep having this awful fluid gurgling sound at the base of my skull along with intense pressure at the base of my skull as well as lumbar spine area along with many awful neuro sx as it occurs. I am an absolute mess and am just desperate to find someone that understands this and will figure it out.

Thanks for your input

Di,

I know you live in NH and RI might be a bit of a hike but I have an outstanding NS in RI that is going to do my revision. She is amazing. Knows everything about Chiari comes highly recomended for her surgical skills and is the most compassionate caring doctor I have ever talked to. She has spent hours with me and hasn't even operated yet. Her name is Dr Petra Klinge. She does ask to see all your films and everything before she'll see you. Maybe if it doesn't work out with the Boston doctor?

Wendy

Wendy....thank you for the name of your NS....who knows...I might just need it. I would drive anywhere to get help!!! I'm sorry you've had it so rough yourself. When is your revision surgery? I'm sorry that the sx are so debilitating. I can relate....I feel like many days I have to spend most of the day in the recliner or if I do push myself I end up in the recliner for the night. it's awful. I wouldn't wish this on my worst enemy! Best of luck to you as you have your surgery. I pray that it fixes you for good!!!

Di

wendyanne said:

Di,

I know you live in NH and RI might be a bit of a hike but I have an outstanding NS in RI that is going to do my revision. She is amazing. Knows everything about Chiari comes highly recomended for her surgical skills and is the most compassionate caring doctor I have ever talked to. She has spent hours with me and hasn't even operated yet. Her name is Dr Petra Klinge. She does ask to see all your films and everything before she'll see you. Maybe if it doesn't work out with the Boston doctor?

Wendy

Di,

I am going through the last of the tests right now. I spent almost 2 hours in a MRI tube last week and next week I have a spinal tap (not looking forward) My surgeon is very busy so it has taken alot longer than I would have hoped for but she is worth the wait. Thank you so much for your kind words and encouragement it really means alot to me. Chiari isn't for wimps that's for sure! : ) It completely baffles me when doctors think we are making our symptoms up. Who would want live like this? I have learned to appreciate the good days and appreciate the little things in life. People have no idea how lucky they are if they can just get up in the morning and do anything that they want to do with their day.

Wendy

Di said:

Wendy....thank you for the name of your NS....who knows...I might just need it. I would drive anywhere to get help!!! I'm sorry you've had it so rough yourself. When is your revision surgery? I'm sorry that the sx are so debilitating. I can relate....I feel like many days I have to spend most of the day in the recliner or if I do push myself I end up in the recliner for the night. it's awful. I wouldn't wish this on my worst enemy! Best of luck to you as you have your surgery. I pray that it fixes you for good!!!

Di

wendyanne said:

Di,

I know you live in NH and RI might be a bit of a hike but I have an outstanding NS in RI that is going to do my revision. She is amazing. Knows everything about Chiari comes highly recomended for her surgical skills and is the most compassionate caring doctor I have ever talked to. She has spent hours with me and hasn't even operated yet. Her name is Dr Petra Klinge. She does ask to see all your films and everything before she'll see you. Maybe if it doesn't work out with the Boston doctor?

Wendy

Gosh...so much testing! Why? Doesn't the Dr already know what's wrong to suggest the revision? What kind of MRI did you have? It is amazing that Drs don't take any of the sx seriously. They have no idea. But the most frustrating part is that it's so hard to get people to believe all the awful things we are going through b/c we look "normal." That is my concern for filing for SSD.....I look just fine yet have to spend half my day in a recliner. Doctors that spend less than 10 min with me and don't even examine me certainly can't speak to my functionality. So frustrating!

I hope you get a date for surgery soon. I'm sure you want it over with. Did you recover from your 1st surgery easily? Did you ever have relief from the sx? praying this time is the answer!

Di

Di,

I had a brain MRI, a full spine MRI and a CINE MRI. She also wanted to get extra images of my scar tissue so she would know what she's in for. I'm blocked where my original surgery was at C2 and my patch is loose so I have a pocket of fluid that has filled my patch up like a cink. I begged my former doctor for 5 years for a Cine MRI and she wouldn't order one even though I have great insurence. She also told me my MRI was normal and I took her word for it. When my new doctor showed me my MRI's I gasp because you could see the pocket of fluid and the bulge at the base of my skull on the left hand side. That was a huge Ah Ha moment. From now on I will always look at my images and insist my doctors show them to me. I would advise everyone to look at theirs and read the reports.

I do not know why doctors dismiss us. A few things come to mind. Chiari has only been widely diagnosed in the last 20 years because of MRI's and not that many people have it so doctors don't see it very often. Also doctors go by studies and papers and research and they don't bother to read up on the research.

It is frustrating trying to explain how awful we feel because we look normal. Also the symptoms change and sometimes we have days when it's awful and sometimes not so bad. The exhaustion is very dificult to deal with without feeling guilty. There is a blog called Chiari Life and Bearly has "A Letter to Normals" that is great and she has a link to The Spoon Theory that helps put into perspective how we feel and how to explain it.

Finding a great doctor is key. I have been to so many over the years and been called every name in the book...hypercondriac, lazy, crazy, drug seeking, weak ect ect ect. I finally found my NS and I also found a great PCP. I am so grateful after all these years of disappointment. It took me a year-year 1/2 of visiting doctor after doctor after doctor to find them. I prayed alot and was in agony because I didn't have anyone to help me with medicine. It was awful but I am so grateful now. Just keep looking. You deserve to find a doctor that will treat you with dignity and respect. They are out there.

My first surgery was very difficult to recover from. It was in 2001 and my doctor wasn't very compassionate and I think he was very rough with me during surgery. My new NS said that it's easier to recover from now because the tecniques are better now so it's somewhat less tramatic. It took me so long to recover from I only felt better for a short time and then the scar tissue started to build up and block my CSF. My NS said it was probably blocked after year-year and a half.

I always hope my journey and the mistakes I made will help others that read it. If a doctor is disrespectfull or dismissive I would change doctors immediately. I wasted alot of years suffering in silence because I was scared to change doctors and I was so discouraged I couldn't take being disapointed and insulted anymore. I did not know to look for a ns. I thought if I needed another surgery my nl would tell me to see one. I also wish that I had sought out a place like this sooner.

Di, I will pray for you to find a great doctor and the answers you need. Don't let anyone put you down or try and tell you that your symptoms aren't real. We are all here for you also.

Wendy

Hi Wendy,

Sorry it's taken forever to reply. I'm so sorry that you've had such a hard time too. it infuriates me that Drs are so nochalant about everything and dare call us "crazy" etc.... if they spent 1 day dealing with what we deal with they'd think twice. I am convinced that Drs aren't half as smart as people think. I'm with you about asking for all reports - the same thing happened to me. I just requested all the MRIs I've had done.... turns out that nobody has ever imaged the area that I have complained of for almost 2 yrs...no wonder all looks fine. IDIOTS!!! Like we, as patients, should really have to tell them what test to order.....yet when we dare walk in as the authority of our own body and know more than they do they are insulted.

Did you get your test results yet? I pray that this Dr can help you and give you relief once and for all. I've had a bad few days, to the point that I was in tears saying if someone doesn't figure this out I don't know what I'll do. I'm so desperate. yes, the exhaustion is excruciating some days. And the guilt is even worse! I see a neurologist on Tues - hope I can convince him of what's going on. Thought I had found a great NS in Boston but have been getting the run around from him. Told he needs a current brain MRI - I don't have one! I'm so confused....don't we get referred to NS so they can figure out what's wrong and order tests if need be? Who should be doing that then? I only have MRI of my c-spine which obviously doesn't show the craniocervical area. What type of MRI is ordered to show the skull bones and cerebellum?

Can you actually tell when the CSF is blocked? I swear I have that....if my head is in certain positions I have such pressure at the base of my skull then get a gurgling liquid sound at the right base of skull with a weird pressure in my lower spine area....makes me think of a syrinx. Something is wrong! All the muscles in my body go spastic. There are days that I pray that I don't die....I feel that bad. It's scary!

Any idea of timeframe for you to have the surgery? What do you do in the meantime while you wait? I pray for you!!!

Di

Di,

Thank you for your great reply and kind words. It angers me too that doctors are so dismissive. Your right...Live 1 day in our shoes. I used to say to doctors and medical professionals. Why would I want to feel and live like this? Your right about many of them not being very smart. I also think that many go into it for the money and aren't at all compassionate. One of my physical therapists told me one time "When they can't make your pain or problem go away they just want you to go away" That sums it up pretty well. It's shocking that they haven't done images for the area you have complained about. I begged my nl for years to do a full spine and a Cine MRI she would never do them even though I had great insurence (thank god) She always treated me like I was a weak complainer. I finally got the courage to fire her but boy did I pay for it. I would definitely find another doctor if you don't get what you need from your doctor. There are good doctors out there and they are worth the energy to find them.

I haven't got my results yet. I have to have a spinal this week and then I'll know more. My surgeon doesn't work quick. She is a very busy surgeon. Part of me is okay waiting because I'm scared and the other just wants to get it over with. The first time I was blissfully unaware and was in such bad shape I felt like I almost couldn't hang on till my surgery. I'm pretty bad now but I think I've just gotten somewhat used to being exhausted and layed up. I dream of taking a long walk with my husband or going somewhere really fun with my kids. I can only do things out of the house for very short periods of time. Okay blah blah blah...Enough of that. I have an amazing husband and two great kids that I live for. I am truely blessed.

Di, You need a brain MRI. I can't believe they haven't done one recently. I would also ask for a Cine MRI to show the flow. It will show if it's blocked or slowed down. And a full spine will rule out or rule in a syrinx. A good doctor like my new one will run the whole gammit of MRI's. I know exactly how you feel. It's really scarey and frustrating and when doctors aren't listening to you it's madening. I am praying for you my friend. You deserve the answers that you seek. Don't let any doctor put you down and dismiss you. I dismiss them now. I walked out on the last nl at the hospital I'm going to have my surgery at. I told him that I wasn't going to sit there and listen to him put me down. The look on his face was priceless. But he got me back he told my surgeon that I wasn't a candidate for surgery. Thank God she's an amazing woman and cares about me more than his opinion. She just made me get a few more tests. There will be people to help you you just need to seek them out. I am praying for you too.

{{{{{hugs}}}}} Wendy

Di,

It sounds according to my reading that you might have a Chiari Malformation 0 which means you have crowding, but you do not have a herniation. If I were you I would call around and see if you can find a NS that deals with Chiairi 0, I have heard of some pediatric ones that actually are talking surgery to one patient that has Chiari 0.

Hi Wendy,

It is all so frustrating! What day is your spinal? Why are they doing that if they already know what is going on? And why is the surgeon so slow in dealing with this? It seems like it should be emergent with all that you have going on! Do you have to lay down most of the day? How old are your kids? It's so hard isn't it? I'm glad you have such a supportive husband. I do too, thankfully....but it still doesn't stop the guilt. I try to force myself to still do stuff but then I pay for it. My husband wanted to go to the beach yesterday. After volunteering for 3 days at my kids vacation bible school I was a complete neurological mess so still felt awful but didn't want to say no so I went.....just standing up for a few hours had me a complete wreck all the way home. I swear my skull shifts and bones poke into my brainstem. I feel like I get worse daily.

I see a neurologist tomorrow. I saw him 7 yrs ago after having my daughter when I was having some funky neuro sx....which convinces me that this has been underlying for many years. It was the chiropractor that threw it into this hellish nightmare I am now in. I can only pray he has a clue about chiari and will hear my presentation of what I believe it going on and then order the right MRIs. When I saw that none of the other Drs have even requested imaging of my craniocervical junction I was furious....these people do brain surgery....how can they be so stupid???? And you mentioned a Physical Therapist..... I have such respect for them as medical professionals...it's too bad Drs don't. My PT is the one that took the time to sit and listen to my story, totally understand how a chiropractor cranking my neck for 9 mos would've caused damage and then actually put his hands on me and evaluated me (the Drs never have!!!) and low and behold he found a huge upper cervical instability. Think any of these Drs will take his eval as valid though? It blows my mind. I think my case is very involved....I think the chiari is underlying - if not true chiari, at least crowding if my tonsils are at the level of the foramen magnum, but I was also told that my c-2 tilts backwards and I've read that typically that goes along with basilar invagination...so I think the damage to the ligaments from the chiropractor has just compounded it all. I think just blowing me off for 1.5 yrs has brought me to the state I'm now in and I do think I have a syrinx that has formed. Can you actually feel sx of it? I have learned to always trust your intuition b/c we know ourselves better than anyone.

I just don't understand why Drs, especially NLs and NSs don't know about this - shouldn't they? It seems that most NLs just deal with MS, migraines, seizures..... so I can only hope this Dr I"m seeing knows about it. The NS in Boston won't see me unless I've had the correct testing. Not sure why he can't see me and order it himself. I'm so frustrated.

Anyway...sorry to ramble and complain. I know you're going through so much too. Praying that the spinal goes ok and you get answers soon. When do you see the NS again? Hang in there.

Di

Yes...that is what I think also. it seems that many Drs don't even buy that it could cause all the awful sx that it does, but from what I've read it makes perfect sense. It is really more about the obstruction of CSF so I could see where a chiari 0 could cause even worse sx b/c the tonsils must act like a cork, whereas, a larger herniation may be skinny enough to still allow the CSF through.

Finding a Dr that has a clue about all of this is the challenge. I see a neurologist tomorrow. Hope he listens. Been trying to get in with NS in Boston who specializes in Chiari but he won't even see me unless I've had the right testing and he views first. Never heard of such a thing. Why wouldn't he meet with me, hear my case and go from there. If he's a specialist of chirari you'd think he'd consider all of these "outside the box" situations that can still be chiari. I'm beyond frustrated and the sx get worse daily. Just don't know what to do!

Thanks for your input

Di

mommyofchiari said:

Di,

It sounds according to my reading that you might have a Chiari Malformation 0 which means you have crowding, but you do not have a herniation. If I were you I would call around and see if you can find a NS that deals with Chiairi 0, I have heard of some pediatric ones that actually are talking surgery to one patient that has Chiari 0.

Di,

I had to put my spinal off for a week so its this Wednesday. I am not looking forward to it but it has to be done. The nl that I saw that I walked out on because he was rude works with her and he told her I should have one to rule out an infection that is causing my issues. It's a long shot and i do not think it's the case. It did pass my mind that the nl wanted to torcher me because I walked out but I don't think my ns would go along. : ) My kids are 13 and 16 and it is very difficult thinking that their whole lives they have only known me disabled. When they were younger I was a little better but they don't remember that. They are really the reason I am going to try surgery again because nothing else has helped. They used to be happy to hang out with me now they want to go go go and I can't do that. The guit is terrible.

It's so hard trying to push ourselves sometimes. You must have felt like collapsing after 3 days! I don't know how you did that. I hope you have a good appointment. I went to chiroprators for years and they absoluetly made me worse.It makes me so angry now.Good Physical Therapist are so wonderful. I'm so glad you have a good one.Good doctors understand that everyones anatomy is different. Yours could be squished (technical word) or jammed side to side and blocking CSF rather than being pushed down into the spine. There was a girl on Mystery Diagnosis. (I think that's the name) who's Chiari didn't look that bad on the MRI but when they did her decompression it was blocked more side to sid. I ish you luck. Let me know how you make out today. I'm praying for you Di. Wendy

Hi Wendy,

Well I had my apt with the NL this morning. He was as I remembered him and spent almost an hour with me. He listened, but I still don't feel like he can conceptualize what I was trying to tell him. It seems so crystal clear to me as to what is going on so it blows my mind that doctors don't get it. When I explained how everything occurred and how it makes such sense to me that the chiropractor tearing the 2 most important ligaments that hold my dens from c-2 in place and how if I have crowding of the cerebellar tonsils, it would contribute to my awful and debilitating sx. I also pointed out that all my research shows that if you have an incomplete ring at c1 it typically goes hand in hand with chiari and basilar invagination when the dens from c-2 pokes into the brainstem. He argued with me that it's not possible for the dens to poke into the brainstem. So I proceeded to tell him it's called basilar invagination and it's very possible. He sorta looked at me like "who's the Dr" so I got a bit feisty and told him I was sorry that I had to play Dr but I have to if I want to avoid being paralyzed or dead due to Drs just dismissing me. He chuckled and said it was his goal for me not to end up paralyzed or dead too. He said he could see how chiari could be possible but felt it should've shown on my cervical MRIs...however my PCP told me that radiologists only zero in on the area of question so sometimes they miss things. I think if we wanna know about chiari it needs to be a brain mri with a lot of focus on the skulls bones etc..... it doesn't seem like he has a great grasp on chiari though b/c he gave me the line about people having huge herniations and no sx so if mine is just at the foramen magnum level it's unlikely..... hmmm....funny, what i've read says that would almost be worse b/c there is so much crowding that the CSF obstruction is probably more likely! In the end, he ordered a brain MRI and CT angiogram of my neck. I don't think that's the issue so I pray the brain MRI shows it. Wish I could've gotten the cineMri though. Is that done the same as a regular MRI? He did a complete neuro exam on me - of course when you're sitting perfectly still things are ok. I'm sure I passed as always despite what occurs when I move. Some things did seem hyperreflexive to me and when he had me stand with my eyes closed I lost my balance....shouldn't that count for something? He seems very focused on it being a neck issue, but I think that's been the problem all along. Every neck specialist and neurosurg I've been to keep imaging my neck and saying I'm fine. Chiari has huge sx into the neck....they need to look higher!

I did feel like he doesn't think I'm as bad as I am. When I commented on having to spend half my day in a recliner he asked me with a very surprised tone "why?" made me wanna burst into tears. If only he knew what it was like for 1 day! As you said before...like I'd ever wanna spend my life like this! I push and push then end up a mess. Some days I don't have the stamina either. My poor kids. They are 5 & 7 and just don't understand.

I'm also in the process of trying to apply for disability and you know that process. I can't convince the Drs there is something wrong so how do I convince SSA? So much to deal with - it becomes unbearable sometimes!

I hope your spinal goes ok tomorrow. I will be praying for you. Have you had one before? Years ago I ended up in the ER with a pounding headache (see....prob yet another event that was really chiari even back then) and at one point the Dr attempted to do a spinal.....not sure if he couldn't do it right or what...... it never got completed and I was blown off. I hope you have someone good. Please keep me posted.

Di

I forgot to mention...I already got a call to schedule the CT and MRI so it'll be this Thurs. YAY! The NL said if the tests don't show anything I should go to Boston. I told him I was trying to see a NS in Boston but he wouldn't see me unless I have the right testing...so I guess here it will be. I guess even if the radiologists say it's fine I will still send to NS in Boston as everyone seems to have a different opinion. So much for the science of medicine!

Hope your day is good

Di

wendyanne said:

Di,

I had to put my spinal off for a week so its this Wednesday. I am not looking forward to it but it has to be done. The nl that I saw that I walked out on because he was rude works with her and he told her I should have one to rule out an infection that is causing my issues. It's a long shot and i do not think it's the case. It did pass my mind that the nl wanted to torcher me because I walked out but I don't think my ns would go along. : ) My kids are 13 and 16 and it is very difficult thinking that their whole lives they have only known me disabled. When they were younger I was a little better but they don't remember that. They are really the reason I am going to try surgery again because nothing else has helped. They used to be happy to hang out with me now they want to go go go and I can't do that. The guit is terrible.

It's so hard trying to push ourselves sometimes. You must have felt like collapsing after 3 days! I don't know how you did that. I hope you have a good appointment. I went to chiroprators for years and they absoluetly made me worse.It makes me so angry now.Good Physical Therapist are so wonderful. I'm so glad you have a good one.Good doctors understand that everyones anatomy is different. Yours could be squished (technical word) or jammed side to side and blocking CSF rather than being pushed down into the spine. There was a girl on Mystery Diagnosis. (I think that's the name) who's Chiari didn't look that bad on the MRI but when they did her decompression it was blocked more side to sid. I ish you luck. Let me know how you make out today. I'm praying for you Di. Wendy

We have several members that are not "text book cases". Did they do a CINE MRI? What kinds of MRI's did you have & were they with & without contrast? It is also important that either a Neuro Radiologist or your Neurosurgeon reads them. Just a normal Radiologist is sometimes not skilled with Chiari Malformations. I actually had one ask me what my head was supposed to look like in the films. All I could do is tell him what I have had done.

I am glad you are here...welcome, please feel at home.

Tracy Z.

No...no CINE MRI? All they've been doing is cervical spine MRIs. I saw a NL today and he finally ordered a brain MRI and CT angiogram of my neck. He didn't seem to 100% conceptualize my theory of everything. 1 previous MRI stated that my cerebellar tonsils sit at the level of my foramen magnum...he seems to believe in only the "textbook" definition but I bet something like mine would be worse b/c of the CSF obstruction. Wish I could get the CINE MRI. I also ? if I have basilar invagination occurring which often goes along with chiari. He argued it's not possbile. Just frustrated by it all. Feel like nobody believes that I'm as bad as I am. Having the tests done on Thurs so that is good. It better show something.

Thanks for your input

Di

Di,

I am sooo proud of you for speaking up and pushing for what you need and want. I literaly cheered out loud after I read what happened. I know he was hesitant and a little dismissive but you knew your stuff didn't back down and advocated for what you need. I can't tell you how many times I have sat with a doctor and have been stunned into silence at the way I was treated and then the appointment is over and I can't believe what happened. BRAVO You didn't let him run over you. I've got to say for a nl that's a pretty big feat to get him to listen and order the tests you want. I know you didn't get everything like a CINE but you can make the case for that next time. And it's happening so fast! I've never had an MRI schedualed that quick. A CINE is done in a regular MRI tube they just put a pulse ox on your finger, so you can always get one. I can't tell you how many dozens if not hundreds of neuro exams I have always passed. When I went to a Chiari specialist the neuro exam was very different and much more complete. That one I didn't pass. You are right about closing your eyes and being dizzy. I can't do it. The NL I walked out on wanted me to try and run in his office and stand on my tip toes. There is no way I could do either and he got very mad at me. I said you could put a loaded gun to my head and I still couldn't do either. This after I walked in with a cane!! I've also been looked at strange when I explain my limitations. They absolutely think we are exagerating. Why? Why would I want to admit something so embarassing? Why would you want to live like that when you have two beautiful children and you are so young? lying on the couch sucks!

I am already sweating about my spinal. I have never had one before. I insisted that I have my kids natural childbirth because I was so worried about the epidural. I think it was my intuition because I wasn't diagnosed until my son was 2 1/2 even though the symptoms started with a car accident 4 1/2 years earlier when I was 5 days away from my due date with my daughter and I got rearended by a truck. It's probably a good thing you didn't get a spinal. They can make things worse for people with Chiari. They are going to do mine with an exray or ultrasound I cant't remember to guide it so they don't mess it up. I still want to call and chicken out but I can't I already did it once. I have to be there at 6:30 in the morning and I have a horrible time in the mornings. I also cant eat or drink after 12:00 or 8:00 I can't remember. I'm going to have a crap night. I don't sleep that much as it is. I'll let you know. I am really glad for you though.

Wendy
Di said:

Hi Wendy,

Well I had my apt with the NL this morning. He was as I remembered him and spent almost an hour with me. He listened, but I still don't feel like he can conceptualize what I was trying to tell him. It seems so crystal clear to me as to what is going on so it blows my mind that doctors don't get it. When I explained how everything occurred and how it makes such sense to me that the chiropractor tearing the 2 most important ligaments that hold my dens from c-2 in place and how if I have crowding of the cerebellar tonsils, it would contribute to my awful and debilitating sx. I also pointed out that all my research shows that if you have an incomplete ring at c1 it typically goes hand in hand with chiari and basilar invagination when the dens from c-2 pokes into the brainstem. He argued with me that it's not possible for the dens to poke into the brainstem. So I proceeded to tell him it's called basilar invagination and it's very possible. He sorta looked at me like "who's the Dr" so I got a bit feisty and told him I was sorry that I had to play Dr but I have to if I want to avoid being paralyzed or dead due to Drs just dismissing me. He chuckled and said it was his goal for me not to end up paralyzed or dead too. He said he could see how chiari could be possible but felt it should've shown on my cervical MRIs...however my PCP told me that radiologists only zero in on the area of question so sometimes they miss things. I think if we wanna know about chiari it needs to be a brain mri with a lot of focus on the skulls bones etc..... it doesn't seem like he has a great grasp on chiari though b/c he gave me the line about people having huge herniations and no sx so if mine is just at the foramen magnum level it's unlikely..... hmmm....funny, what i've read says that would almost be worse b/c there is so much crowding that the CSF obstruction is probably more likely! In the end, he ordered a brain MRI and CT angiogram of my neck. I don't think that's the issue so I pray the brain MRI shows it. Wish I could've gotten the cineMri though. Is that done the same as a regular MRI? He did a complete neuro exam on me - of course when you're sitting perfectly still things are ok. I'm sure I passed as always despite what occurs when I move. Some things did seem hyperreflexive to me and when he had me stand with my eyes closed I lost my balance....shouldn't that count for something? He seems very focused on it being a neck issue, but I think that's been the problem all along. Every neck specialist and neurosurg I've been to keep imaging my neck and saying I'm fine. Chiari has huge sx into the neck....they need to look higher!

I did feel like he doesn't think I'm as bad as I am. When I commented on having to spend half my day in a recliner he asked me with a very surprised tone "why?" made me wanna burst into tears. If only he knew what it was like for 1 day! As you said before...like I'd ever wanna spend my life like this! I push and push then end up a mess. Some days I don't have the stamina either. My poor kids. They are 5 & 7 and just don't understand.

I'm also in the process of trying to apply for disability and you know that process. I can't convince the Drs there is something wrong so how do I convince SSA? So much to deal with - it becomes unbearable sometimes!

I hope your spinal goes ok tomorrow. I will be praying for you. Have you had one before? Years ago I ended up in the ER with a pounding headache (see....prob yet another event that was really chiari even back then) and at one point the Dr attempted to do a spinal.....not sure if he couldn't do it right or what...... it never got completed and I was blown off. I hope you have someone good. Please keep me posted.

Di

I totally feel you and Wendy both. I have been out of work for five weeks now because of tachycardia, fainting, constant headaches, and blurred/double vision. There are other symptoms that I've had for years but this is the first time I've been flat on my back all day long because of it. The urgent care doc and radiologist both were really concerned about it being Chiari... But the first neurosurgeon they tried to send me to spent three weeks holding my file and then refused to see me until I got further testing by a neurologist. (Don't you have to be a neurologist to be a neurosurgeon? Couldn't they do the testing?!) So I got sent back to my primary doctor. Now I'm going through every neurologist in the book trying to find one who will see me and believe the urgent care doctor and radiologist's concerns. In the meantime I'm still sick, still out of work, still MISERABLE and frustrated.

I wouldn't wish this on anyone. Sorry to hear you're in the same boat. :(

Katrina W.

Di said:

Hi Wendy,

It is all so frustrating! What day is your spinal? Why are they doing that if they already know what is going on? And why is the surgeon so slow in dealing with this? It seems like it should be emergent with all that you have going on! Do you have to lay down most of the day? How old are your kids? It's so hard isn't it? I'm glad you have such a supportive husband. I do too, thankfully....but it still doesn't stop the guilt. I try to force myself to still do stuff but then I pay for it. My husband wanted to go to the beach yesterday. After volunteering for 3 days at my kids vacation bible school I was a complete neurological mess so still felt awful but didn't want to say no so I went.....just standing up for a few hours had me a complete wreck all the way home. I swear my skull shifts and bones poke into my brainstem. I feel like I get worse daily.

I see a neurologist tomorrow. I saw him 7 yrs ago after having my daughter when I was having some funky neuro sx....which convinces me that this has been underlying for many years. It was the chiropractor that threw it into this hellish nightmare I am now in. I can only pray he has a clue about chiari and will hear my presentation of what I believe it going on and then order the right MRIs. When I saw that none of the other Drs have even requested imaging of my craniocervical junction I was furious....these people do brain surgery....how can they be so stupid???? And you mentioned a Physical Therapist..... I have such respect for them as medical professionals...it's too bad Drs don't. My PT is the one that took the time to sit and listen to my story, totally understand how a chiropractor cranking my neck for 9 mos would've caused damage and then actually put his hands on me and evaluated me (the Drs never have!!!) and low and behold he found a huge upper cervical instability. Think any of these Drs will take his eval as valid though? It blows my mind. I think my case is very involved....I think the chiari is underlying - if not true chiari, at least crowding if my tonsils are at the level of the foramen magnum, but I was also told that my c-2 tilts backwards and I've read that typically that goes along with basilar invagination...so I think the damage to the ligaments from the chiropractor has just compounded it all. I think just blowing me off for 1.5 yrs has brought me to the state I'm now in and I do think I have a syrinx that has formed. Can you actually feel sx of it? I have learned to always trust your intuition b/c we know ourselves better than anyone.

I just don't understand why Drs, especially NLs and NSs don't know about this - shouldn't they? It seems that most NLs just deal with MS, migraines, seizures..... so I can only hope this Dr I"m seeing knows about it. The NS in Boston won't see me unless I've had the correct testing. Not sure why he can't see me and order it himself. I'm so frustrated.

Anyway...sorry to ramble and complain. I know you're going through so much too. Praying that the spinal goes ok and you get answers soon. When do you see the NS again? Hang in there.

Di