Thoughts and Advice are more than welcome!

General
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Hi All,

My name is Thad and I am a new member from Kansas City, MO. I have not been diagnosed with anything yet, other than possible strokes, but who even knows about that anymore. My story starts a little over a year ago. I had been having problems with extreme fatigue for quite a while and I was seeking care at our local VA Hospital. I was sent for two overnight sleep studies that were both seen as normal. Next was a multiple sleep latency test, which just showed I was extremely fatigued and could fall asleep fairly quick, but it rulled out things like narcolepsy. The doctor I was seeing for fatigue recommended that I have an MRI done to check for a Chiari malformation. A day or so before the MRI I had a horrible debilitating headache, but a trip to the ER just resulted in some medication and a "migraine" diagnoses. I went on with the MRI as scheduled and I was cleared of a Chiari but there was an "incidental finding" of a lacunar infarct in my right cerebellar hemisphere. A couple days after that I was back in the ER for seeing spots and a numb face. 6 days of admission to the hospital resulted in no answers. First it was all thought to be from MS, then Lime disease, then complex migraines and a handfull of other possible diagnoses. I was told at one point that they were fairly certain that I had a genetic disorder called CADASIL and that I really should go home and look it up. What a suprise when I looked that up. Genetic testing rulled out CADASIL, so the search goes on. I have had countless MRI's and CT scans, and not a single one mentioned anything about Chiari. It wasn't till a trip to the Mayo clinic that Chiari was mentioned again. The Mayo didn't do there own MRI, but they conducted thier own interpretation of my last MRI completed by the VA. It read " Mild generalized cerebral and cerebellar atrophy. Few small chronic appearing lacunar infarcts within the inferior right cerebellar hemisphere. No acute ischemia noted on diffusion weighted imaging. Minimal leukoaraiosis. Low lying cerebellar tonsils which do not meet the criteria for a Chiari malformation."

With all of that being said, I have been poked and proded so many times I don't know where to turn. Since Chiari was what they were first looking for over a year ago and it was then mentioned again I thought I would look into it a little more. I can't believe what I have read so far. So many of the symptoms that are related to Chiari are an almost everyday occurence for me. I didn't think there was anything that would relate all of the symptoms to one disorder. My only confusion relates to a simple question, if it really could be Chiari, why hasn't anyone looked into it further for me? I haven't had any special imaging other than normal brain MRIs and one cervical spine MRI. I haven't done anything to look at flow of CSF of anything like that. Who knows. Could it really be a Chiari that is causing me all the trouble? Any advise is greatly appreciated. My symptoms are:

Hypertension, Tachacardia, Chronic headaches that start in the back of my head just above my neck and radiates to the front when it gets bad, facial numbness (not really once side or another, just about at my top lip through to my bottom lip, kinda like where a goa-tee would be), weakness on my left side, but weak legs on both side, it also seems like my legs will just go out from under me. I can usually catch myself but not all the time, balance problems and falls, heavy legs at times, tinitus, blurry vision, floaters in my eyes, mild cognitive deficit in congnitive processing speed, learning and memory.

Sorry for the few things in the list that I am sure are spelled incorrectly.

I am sure I forgot a thing or two, but that is enough to get the point across. Did I mention the headaches? THOSE STINK! I had one severe enough to send me to the ER recently and two shots or morphine didn't help.

Anyways, any advice or guidance that anyone can send my way is greatly appreciated. Maybe someone in the area can recommend a good doc to try?

Thanks for reading!

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HI AND WELCOME!!!!!!

Emmaline wrote basically what I would have...great minds think alike...ha, ha,

So I won't repeat what she wrote....

I am happy you found this group..the gang here is TOPS!!!!! Please know that you are not alone in this....this group has always been here for me and we will be here for you. Any questions you have..just ask away!!!

Keep us in the loop and let us know how you are doing.

Peace,

Lori

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Thanks both for the replies. I appreciate the words of wisdom. In all my cases my MRIs have been read by radiologist. The only time that I am aware that they have been read by anything other than normal radiologist was when my case worker asked a "neuro-radiologist" to review them. I haven't seen an official reading from that, as I think it was all just opinions relayed via email. Who knows. The more and more I think about it though, the more it all makes sense. Especially how the tachacardia and hypertension could be related. Prior to my first hospital stay I was on four seperate medications for hypertension, including Metoprolol to help control my pulse as well as BP. When I was admitted the first time, I was in for six days and during that time on several occasions my pulse and BP were getting too low. It got to the point that they took me off all my BP meds and told me not to take them after I was discharged. Two days after discharge and resuming lifes normal activities I was feeling horrible and took my BP and it was up to 210/118 and 132 bpm pulse. Of course the relavent trip to the ER resulted in getting back on BP meds, and those slowly being increased to back where I am today, several BP meds including a higher than ever does of Metoprolol to help regulate me pulse. I know being laid up in bed can obviously affect someone's BP and such, but is it possible that being in the bed, with my neck supported and sitting at an incline could have resulted in my BP and pulse decreasing due to Chiari, and once I was out and about it just went right back to normal? Just curiosity, any and all advise is greatly appreciated.

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Thanks again. I looked into it and it is very interesting. So, now I have a huge delima. I regularly seek care at my local VA hospital. I talked with my neuro nurse there and she is supposed to talk with the neurologist today to see if he will refer me to the VAs neurosurgeon. Even if he does give me the referral I am sure the chances of the VAs neurosurgeon being familiar with chiari are slim to none. Besides, if this does end up being my issue, would I really want the VA doing brain surgery on me? I have hit my out of pocket maximum for my insurance for this calendar year, so the obvious best case scenario would be to see a qualified neurosurgeon and, if needed, have the surgery all by Dec 31st. Now I just have to decide if it is worth it all. Considering I have an MRI that says “low lying cerebellar tonsils” is it likely enough that chiari could be a diagnoses that I should take extreme measures to pursue it? I can’t find much on a chiari expert in the Kansas City area, so more than likely if I do pursue it I will be traveling to see a specialist, and I would want to do it as soon as possible to get as much done as I can while I have no out of pocket expenses with my insurance. Thoughts? Any advice is greatly appreciated.

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I suggest that you get the CD's of your MRI's and take them to the neurosurgeon appointment. Then, have him measure the descent of the "low lying cerebellar tonsils". Once, you have a number, you can research surgeons who might consider 2-3 mm of tonsilar descent, known as borderline Chiari, as the cause of your symptoms. However, you are correct about the chances of the NS at the VA knowing much about this. You present a pretty complicated scenario. I suggest that you look upon this as a marathon rather than a sprint. You have already run a few miles of the race but it is going to take you a while to get the right diagnosis. I would say that having the surgery by the 31st is a long-shot and might even be imprudent given the complexity of your presentation. However, I would try to get a few more opinions from neurologists and NS's by the end of the year since you have met your co-pay max. At the same time, it sounds like Chiari is definately in the mix. Be patient, educate yourself, and be your own advocate until you find the answers that bring healing. I know that sounds like crummy advice when you are suffering so much but it is coming from someone who was really sick for four and a half years before I got the surgery and I had everthing else ruled out in that period of time. Wishing you deep peace and healing, Fr. D

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Thanks for the reply Fr. D. I appreciate it. I know what you mean when it comes to a marathon. For this, if this truly could be the answer, it feels more like I am in the home stretch or at least the last leg of the marathon. I started with chronic stomach issues in 2003 and chronic headaches, although less severe than they are now, in 2005 after a head injury while in the service. It has been a whirlwind since then. Hopefully I will get somewhere and get some answers when it comes to Chirari. I already have CD copies of all of my head scans, CTs and MRIs both. If I do decide to pursue it all outside of the VA then I don't even need a referral for my insurance. I just have to find someone that is in network and has the experience that I am looking for. The more and more I look, the more I am going back to the Chiari institue in NY, or the well known experts in Wisconsin or Colorado. I would love to find one around here that I could get into see so I could avoid the room and board expenses of a trip, but Kansas City doesn't seem to have much too offer.

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It is for the most part. The problem is I am on so much of it, at times I get a little high still, but at times I get pretty low. It is a matter of finding the right balance for me. Right now I am on 100mg two times a day and that seems to be doing the job for the most part, with little variances here and there. I make it work.

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Thad, You indeed are far along the in the marathon. Sorry to hear about the traumatic brain injury that you suffered in Iraq. That makes your case all the more complex. One thing that you might keep in mind is that it has been proven that trauma triggers a Chiari Malformation that has already been present congenitally. Also, one of the great things about the Chiari Institute in Long Island is that you have to "apply" for an appointment. Hence, they ask you to fill out a symptom list, give your medical history, and send a copy of your scans prior to making the appointment. Thus, you kind of get a "second opinion" just by trying to get an appointment. I recommend Dr. Harold Rekate there. He spent 25 years as the Chief of Pediatric Neurosurgery at one of the top 10 hospitals in the country for neurosurgery and is a consultant for NASA on cerebral spinal fluid flow. I think that he has the range of experience and knowledge to provide you with a very good opinion on what might be going on - given the complexity of your medical history and current symptoms. Also, I would do anytthing for one of our wounded warriors, so do not be afraind to lean on me. I friended you on this site and provided you with my email address. Praying for your healing, Fr. D

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Fr. D, thanks again for the insight. I truly appreciate it. I looked more into the three previously mentioned centers. The doctor you mention seems to be the only one listed as an "In Network" provider for my insurance. I am not really sure how that would work while seeing the other members of the staff and such, and whether that would be considered in or out of network. I am still looking to see if I can find anyone around the area or even just a little closer to home that is familiar with Chiari. No luck so far. I will get it all figured out one day. One question that I do have though, how do I tell where the for foramen magnum is on my MRIs? I looked at them again yesterday and I can't really tell where it is at. I googled it looking for images that had it clearly marked which I could compare to my own MRIs but I had no luck. Maybe if I could see for myself how far down my cerebellar tonsils are I could be a little more confident in the decision to go out of my way and pursue the possibility of this disorder. I am sure I could attach a picture with my MRI, but in research I was doing yesterday, I seen how one doctor was explaining that the dead center "slice" of an MRI is the best way to see the foramen magnum and the adjacent slices give the best idea how far the tonsils herniate. I am not even sure I would know which image from the series to post. Who knows, any advice is greatly apprecaite.

Beeba, thanks again for the advice. I am not too sure what you refer to when speaking "the hour of death" upon waking? I am grogy and slightly disoriented and clumsy when I wake up, but isn't everyone? Metoprolol is what they started me on at a low dose when my BP started to rise again after discharge. That was increased time after time again when it wasn't helping maintain the target BP and pulse they wanted to see me at, and then eventually hydrachlorathiazide (sp?) was added when they didn't want to go much higher with the Metoprolol. Verapamil, which I am told is also a BP med, was added more so to see if it would help with the headaches, but with my elvated BP it wasn't seen as an issue to add another even if it was for secondary reasons. Who knows. It is all slightly confusing to me.

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Thad, Below is a picture of a mid-saggital image with Mcrae's line drawn. This is a normal brain. In chiari, the tonsils would be below the line and take up the space that you now see below the cerebellar tonsils. To find the mid-saggital image, page through your scan until you see the full spinal column (backbone). Also, depending on the program that your MRI is on, there is probably a letter like "P" about half of the way down on the right side of the screen of your computer. That will mark the mid-saggital image. Most of the programs operate like abobe acrobat a little bit. So once you find the mid-saggiral slice, there will be a line measuring icon on the task bar at the top of the page that is looks like a ruler. Click on it. Then, with your mouse, point and click where Mcrae's line begins on the picture below and drag to where it ends. Then do the same thing from the tip of your cerebellar tonsil to the first line that you drew. The measurements of both lines should appear on the lower left-hand corner of the computer - the second number will represent the second line and give you a gross approximation of your tonsilar descent. Good luck.


r

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Thad,

Please know we have incredible Neurosurgeons that are Chiari Specialists that aren't in Chiari Centers. I work with people everyday finding Neurosurgeons and to be totally honest one Chiari Center I wouldn't recommend to anyone. All Chiari Specialists make you fill out a packet of information before they will make an appointment. My NS's partner left private practice and went to the Middle East to help our Soldiers that wouldn't have survived without his years of experience in Neurosurgery. He is now in Detroit. I know so many amazing Neurosurgeons. I also worked for the biggest Insurer in the US in appeals before I became to ill to work. I realize all the issues we as Chiarians face. Please know you have so many Chiarians here that understand & will help you in any way possible.

Tracy Z.

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Thanks for the advice Tracy Z. I am trying to find a good NS that is familiar with Chiari in the Kansas City area or even the Oklahoma City area since I would have a no cost place to stay if I traveled there. I would prefer not to have to travel anywhere were lodging would be out of pocket, but if I did have to travel I would prefer a place with a streamlined approach to do the necessary diagnostics in a timely manner so I am not off of work too long. I have two small children, work full time and I am a full time college student, so if nothing else but for my son's sake, time is precious. If you happen to know of anyone that is vetted and familar with Chiari in either Kansas City or Oklahoma City I would love to have thier information. A friend of mine had a decompression from a surgeon in Oklahoma City (Dr. Kevin Kelly) and she would absolutely refer me to him, but he is not in my insurances network unfortunetly.

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Thanks Beeba. I believe I know what you're reffering to, though I don't think mine is that bad. I too am exhausted all the time. Constantly. Even if I get 8 or 9 hours of sleep I will wake up and start falling asleep while driving to work in the morning. I can't say that I really sleep well though. I will have headaches that wake me up at night and I will also wake up from time to time to urinate. I tend to roll around alot when I sleep so if I end up on my stomach I will wake up with bad pain in my lower back and neck, especially if my head is propped on a pillow when I am on my stomach causing my neck to be flexted or strain. When I do wake up in the mornings by the dreaded alarm clock, I will usually sit up in bed for a while with my head in my hands just hoping for the throbbing to subside enough for me to either get ready for work or get my youngest out of bed and my oldest off to school. As far as the shakiness and legs that weigh 100 lbs, that usually don't hit until I get to work or have been up for a little while. Or at least I don't notice it till then since I am pretty much on auto-pilot up until that point. My legs will be so weak and wobbly and heavy at times that I will drag one of them and trip over the imaginary stuff on the floor. im sure you know what I am reffering to. Dang uneven floors. I am only 31 but it has been bad enough at times that the docs actually gave me a walker. Luckily I don't have to use it that often though, or choose not too due to selfish pride. If I am lucky enough to get a nap during the day or inadvertainly fall asleep at work, I will sleep for a very short period and wake up really sweaty. Annoying to say the least. Who knows. Hopefully I will get this all figured out eventually. Thanks again for the words of advice. Much appreciated.

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Here are a couple pictures of my MRIs. One is the saggital with a measurement (that I did myself - says 4.79 mm but who knows how accurate that is), the others are the saggital without the measurement and the image before and after the mid-saggital. Thoughts are greatly appreciated.

479-Sagitalw_measure.png (181 KB) 480-Sagitalw_omeasure.png (103 KB) 481-Sagital1.png (101 KB)
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Last one

478-Sagital1.png (152 KB)
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Thad, Pretty good job there for an amateur neuro- radiologist. Your saggital +1 pretty much tells the story - you definately have some herniation going on up there. Plus, your head lies pretty neutral in the scans, if you tilted your head back, I would guess that you would gain another mm or two if herniation. Do you get headaches when you tilt your head back? I would guess that a NS would measure that at about 2-3 mm or "borderline chiari" but, again, your para-saggital images (+1) should be looked at as well because the one tonsil is actually a little pointed and the CSF space beneath it is obliterated which means that the brain is lying on the bone and there is no CSF to cushion your brain. With a history of TBI, that could make you pretty vulnerable to headaches and other neurological sympoms. It would be interesting to see the herniation a T2 saggital of your neck or on a coronal view with both tonsils together. My very unprofessional opinion is that it is very much worth pursuing further opinions if the NS that you see at the VA is not knowledgeable or helpful. Tracy posted a good piece about minimal herniation and Chiari last week. You might want to take a look at it. Good luck and great job working with the scans to get your own sense of what is going on up there. Wishing you peace and healing, Fr. D

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Thanks again for the advice Fr. D. So I went by the VA today since I had to get my PT-INR checked since I am on Warafrin. While there, I took the opportunity to visit my Neuro Nurse at her desk. I asked her whether my Neurologist had come to a conclusion whether or not they would refer me to a Neurosurgeon. She simply stated, well let's call him in here and have a chat. That being said, I actually had the opportunity to sit down at her desk with her and the neurologist and discuss everything. They both agreed that in the mid-saggital image there is a herniation but it looks minimal. They also remarked about how on the para-saggital images the herniation looks more involved and there is not much space at all for CSF flow. The neurologist stated that he really wasn't that familiar with it so they would indicate the concerns to the radiologist and have them read the scans again. I guess with all the politics in play when it comes to funding and such, they need to have a clearer picture and better reading before I am reffered to a neurosurgeon.

It was comical though, in a sick sense of the word. As we were all sitting down and looking at my MRI together, they both noticed and abnormality and said "What in the world is that" at the same time. Not something you really want to hear your neurologist say. He then answered his own question by saying he didn't know. What they were reffering to you can somewhat see in the images I attached previously. At the very top of my head, a little forward of the midline you can see an area where it appears the lining of the brain is absent. It was worse on other images on the same scan and it actually appeared as if there was a mole hill or something (abnormal curvature) in that section of the brain. This again is something that they are going to inquire with the radiologist about. Yay! They are great at this VA but it slightly worries me when the neurologist has to reffer questions to the radiologist. Would that be normal? Once again and as always, any advice is greatly appreciated.

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Thad, Just sent you an email but forgot that I had to post it. I am on the road tonight but I will cut and paste it when I land tommorrow and can boot up my computer. I just really want you to know that this all sounds like great news! I am so happy that you got to sit down with the NL. Way to ‘fight’ for yourself. You made my day! Wishing you deep peace and healing, Fr. D

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Thad,

I am also glad you got to talk to your NL. I know he and his nurse was comical in a strange unprofessional way, but that happens more than you know. I will have a list for you tomorrow of Kansas City & Oklahoma City Chiari Experienced NS.

Tracy

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Thanks TracyZ. THAT'S AWESOME. Certainly appreciated ma'am.