Aa
In purgatory
I will apologize in advance, but this post may qualify as a novel. It's LONG!
I am newly diagnosed with Chiari via MRI. I have been suffering with the headaches, shoulder pain and spasms for years but had always been told nothing was wrong with me so had just accepted it as part of life. In 2009, I started having issues with my lumbar spine which lead to microdiscectomy L5/S1 (10/11). Since surgery, I continued to have issues with severe chronic pain in my lumbar area despite endless PT, aqua therapy, dry needling, acupuncture, and multiple injections in various parts of my back. Then out of the blue I started getting severe pain in my thoracic spine. MRI showed two TINY discs, but neuro said "everyone has those" and they were not the cause of my pain. Translation= you are crazy lady, there is nothing wrong with that part of your back and you are probably just trying to get more pain meds. Defeated, I continued PT even though it wasn't doing anything as far as I could tell and continued to let the "pain" doctors randomly inject various parts of my spine hoping one day they would find the right spot. I felt like I had to keep jumping thought their hoops in order to get the pain meds etc, but even those were starting to not help much.
About two months ago, all hell breaks loose. My vision goes psychotic with blurred vision, ghost images, halos, EXTREME sensitivity to light, my fingers and feet start randomly going pins and needles, but not like it was with my back, I now have joint pain everywhere (some more severe than others), bouts of dizziness, especially if I close my eyes or at night (the room feels like its spinning), I start having memory issues and feeling like I can't concentrate. I feel like I'm going crazy.
I went to see my general doctor who said the tingling was likely a medication reaction to Topomax or maybe Carpal Tunnel. I told her it was neither. She recommended we just watch it and see what happens. Not good enough for me. I had been suffering too long. I scheduled an appointment with a neurologist.
I went to see eye doctor who found that all of a sudden I needed progressive lenses with multiple levels of correction. I have never worn glasses in my life! They order the glasses but when they come in, they don't work. They re did my exam and find my prescription had completely changed. This happened twice more before I told them this was stupid, there has to be something else going on ( you would think they would have figured that one out). Anyway, they did a visual field test and found that I had some deficit in my left temporal region and recommended a neurologist.
Luckily, I had not listened to my general doctor and already had an appt with a neurologist. By now I was convinced I had MS or something similar. The neurologist ordered nerve conduction study on arms, of course it was normal. She also ordered a brain MRI. I got the call calling me in to discuss the results. Being a nurse myself, I knew they weren't calling me in to tell me it was normal. Again, I was concvined I had MS or something. Low and behold, they tell me I don't have MS, but instead have Chiari Malformation Type I. Wow, OK, a diagnosis! This is a start! The Neurologist had her Nurse Practitioner delivering the news and she was completely clueless. She was looking things up on her laptop as I asked questions and clearly was looking in the wrong places.. I had minimal knowledge, but clearly was convinced I had other things so had not studied up but still felt I knew more than she did. I asked her if she thought this was causing my symptoms and she was not sure. I specifically asked about my vision, which is really starting to scare me, she calls the Neurologist on the phone ansd is told it is not likely the cause of my vision problems. Yet everything I read says it could be. Hmmm. Back to square one.
Bottom line is, I'm kind of in a holding pattern because I am waiting to get the rest of the pieces to my Chiari puzzle so I can consult with a NS. I have the cervical MRI scheduled next week and an trying to get them to order the CINE so I can get that done while I'm waiting for my NS appt which is not until April. In the mean time, I feel like my symptoms are getting worse every day. I don't really know if they are from the Chiari or something else. I play on scheduling an appt with a rheumatologist to see if perhaps there are other disorders that may be contributing to all of this (especially the joint pain). I don't know if I need to be concerned about the rate my symptoms seem to be progressing. I'm worried about my vision. I read things about how sometimes damage from chiari can't be reversed even with the surgery, that the surgery only puts a bandaid to prevent further damage. I clearly feel very anxious about sitting back for a month or two while all the tests get done and apps get scheduled while my pain (that no one thinks I have or cares to find a way to treatroperly) gets worse and my vision may be getting irreparably damaged.
I feel like I want answers yesterday and need to be doing something NOW to keep from feeling so awful and to keep from suffering damage, but alas, I sit in purgatory, waiting to learn of my fate.
1) Any idea why symptoms are spinning out of control? No trauma or even big sneeze that I know of.
2) do my symptoms sound chiari related or only if there is CSF issue or syrinx?
3) is it possible that something is going on anatomically that is causing symptoms to get worse daily? At this rate, I honestly don't know if I can remain sane until the tests are done and my appt in April. Some days I literally feel like my brain must be about to explode!
4) is there ever an "emergency" seek medical attention NOW moment related to chiari?
5) Would my back issue or surgery have been caused by or contributed to chiari? From what I have read, I DO NOT have EDS but guess it has not been completely ruled out.
6) what can u do for pain? I'm already on narcotics for back. They aren't working great. On muscle relaxers and have been on the gabapentin, lyrica, cymbals, you name it, no luck. I don't remember what life was like without pain. The pain doctors seem to think everyone is imagining their pain or just wants meds. Oh how I wish there was a pain-o-meter or better yet, the ability to let each doctor live even an hour in my shoes. Maybe then they all could understand my symptoms a bit better.
I will be honest, I am already exhausted from living with chronic pain and jumping through hoops with no positive outcome re: my back for years. The concept of having a possible diagnosis for these other things is great, but the thought of basically having to start a long journey all over, is almost too much to bear.
Sorry if i sound frustrated and crazy. at this point, i probably am lol
Thanks for listening to my rant and for any help you can offer.
I am newly diagnosed with Chiari via MRI. I have been suffering with the headaches, shoulder pain and spasms for years but had always been told nothing was wrong with me so had just accepted it as part of life. In 2009, I started having issues with my lumbar spine which lead to microdiscectomy L5/S1 (10/11). Since surgery, I continued to have issues with severe chronic pain in my lumbar area despite endless PT, aqua therapy, dry needling, acupuncture, and multiple injections in various parts of my back. Then out of the blue I started getting severe pain in my thoracic spine. MRI showed two TINY discs, but neuro said "everyone has those" and they were not the cause of my pain. Translation= you are crazy lady, there is nothing wrong with that part of your back and you are probably just trying to get more pain meds. Defeated, I continued PT even though it wasn't doing anything as far as I could tell and continued to let the "pain" doctors randomly inject various parts of my spine hoping one day they would find the right spot. I felt like I had to keep jumping thought their hoops in order to get the pain meds etc, but even those were starting to not help much.
About two months ago, all hell breaks loose. My vision goes psychotic with blurred vision, ghost images, halos, EXTREME sensitivity to light, my fingers and feet start randomly going pins and needles, but not like it was with my back, I now have joint pain everywhere (some more severe than others), bouts of dizziness, especially if I close my eyes or at night (the room feels like its spinning), I start having memory issues and feeling like I can't concentrate. I feel like I'm going crazy.
I went to see my general doctor who said the tingling was likely a medication reaction to Topomax or maybe Carpal Tunnel. I told her it was neither. She recommended we just watch it and see what happens. Not good enough for me. I had been suffering too long. I scheduled an appointment with a neurologist.
I went to see eye doctor who found that all of a sudden I needed progressive lenses with multiple levels of correction. I have never worn glasses in my life! They order the glasses but when they come in, they don't work. They re did my exam and find my prescription had completely changed. This happened twice more before I told them this was stupid, there has to be something else going on ( you would think they would have figured that one out). Anyway, they did a visual field test and found that I had some deficit in my left temporal region and recommended a neurologist.
Luckily, I had not listened to my general doctor and already had an appt with a neurologist. By now I was convinced I had MS or something similar. The neurologist ordered nerve conduction study on arms, of course it was normal. She also ordered a brain MRI. I got the call calling me in to discuss the results. Being a nurse myself, I knew they weren't calling me in to tell me it was normal. Again, I was concvined I had MS or something. Low and behold, they tell me I don't have MS, but instead have Chiari Malformation Type I. Wow, OK, a diagnosis! This is a start! The Neurologist had her Nurse Practitioner delivering the news and she was completely clueless. She was looking things up on her laptop as I asked questions and clearly was looking in the wrong places.. I had minimal knowledge, but clearly was convinced I had other things so had not studied up but still felt I knew more than she did. I asked her if she thought this was causing my symptoms and she was not sure. I specifically asked about my vision, which is really starting to scare me, she calls the Neurologist on the phone ansd is told it is not likely the cause of my vision problems. Yet everything I read says it could be. Hmmm. Back to square one.
Bottom line is, I'm kind of in a holding pattern because I am waiting to get the rest of the pieces to my Chiari puzzle so I can consult with a NS. I have the cervical MRI scheduled next week and an trying to get them to order the CINE so I can get that done while I'm waiting for my NS appt which is not until April. In the mean time, I feel like my symptoms are getting worse every day. I don't really know if they are from the Chiari or something else. I play on scheduling an appt with a rheumatologist to see if perhaps there are other disorders that may be contributing to all of this (especially the joint pain). I don't know if I need to be concerned about the rate my symptoms seem to be progressing. I'm worried about my vision. I read things about how sometimes damage from chiari can't be reversed even with the surgery, that the surgery only puts a bandaid to prevent further damage. I clearly feel very anxious about sitting back for a month or two while all the tests get done and apps get scheduled while my pain (that no one thinks I have or cares to find a way to treatroperly) gets worse and my vision may be getting irreparably damaged.
I feel like I want answers yesterday and need to be doing something NOW to keep from feeling so awful and to keep from suffering damage, but alas, I sit in purgatory, waiting to learn of my fate.
1) Any idea why symptoms are spinning out of control? No trauma or even big sneeze that I know of.
2) do my symptoms sound chiari related or only if there is CSF issue or syrinx?
3) is it possible that something is going on anatomically that is causing symptoms to get worse daily? At this rate, I honestly don't know if I can remain sane until the tests are done and my appt in April. Some days I literally feel like my brain must be about to explode!
4) is there ever an "emergency" seek medical attention NOW moment related to chiari?
5) Would my back issue or surgery have been caused by or contributed to chiari? From what I have read, I DO NOT have EDS but guess it has not been completely ruled out.
6) what can u do for pain? I'm already on narcotics for back. They aren't working great. On muscle relaxers and have been on the gabapentin, lyrica, cymbals, you name it, no luck. I don't remember what life was like without pain. The pain doctors seem to think everyone is imagining their pain or just wants meds. Oh how I wish there was a pain-o-meter or better yet, the ability to let each doctor live even an hour in my shoes. Maybe then they all could understand my symptoms a bit better.
I will be honest, I am already exhausted from living with chronic pain and jumping through hoops with no positive outcome re: my back for years. The concept of having a possible diagnosis for these other things is great, but the thought of basically having to start a long journey all over, is almost too much to bear.
Sorry if i sound frustrated and crazy. at this point, i probably am lol
Thanks for listening to my rant and for any help you can offer.
COMMUNITY LEADER
U have to try to not dwell on it...not easy I know....but get involved in a project to get ur mind onto something else....
Stress and worry will make u feel worse...but always report new symptoms and issues to ur Dr.
The thing is u do know u have Chiari...so the only unknown is if u need surgery....that I know is a diff one to wait to find out...u want it, and u don't at the same time...but keep in mind only consider it if u need it...not how u feel....try as many possible ways to help the way u feel first...ur Dr may do testing then offer PT or meds...try them...they are his way to see how u r being affected.
In the mean time....watch ur daily activities...they may be causing ur symptoms to flare.
I guess it's better to look at it that way. I will know more once the cervical MRI and CINE study get done. The waiting is just unbearable when my symptoms seem to be progressing so rapidly. I can't help but think that something is going awry in there that is causing the rapid progression and not knowing what is torture.
COMMUNITY LEADER
The question is do u need surgery to restore CSF flow...not will it help ur symptoms, if u look at it that way it is easier to decide...as u will continue to worsen if u need it and do not get it...just as u may develop a post op issue/condition that leaves u feeling poorly, that may happen in a matter of time too....so u can not view the surgery as a means to just get rid of the symptoms that u have now, but help prevent further issues down the line....
Thanks for sharing. Being so early in my diagnostic process and reading about how some people get no relief from surgery and others who are worse after surgery, it's nice to hear those success stories. Right now, not knowing the full picture yet, I feel like why put myself through such awful surgery and recovery if there is a chance it won't even help. I guess it's walking the fine line between which options is worse, taking the chance that surgery will work or living life in misery knowing nothing else will.
Thank you for sharing your story. I find it so helpful to be reminded that we are capable of fighting "this" and regaining some sense of who we are. It's also important to understand that not all specialists are specialists!
Annie
Annie
I'm really sorry you are having to go thru this. It is the hardest thing I have ever had to go thru mentally or physically... BUT, there is light at the end! You can beat this!
I am also a nurse. I began having headaches at age 10. In 2011 I (age 38) started experiencing parethesia and neck pain. Quickly, within 2 months, I had several neurological symptoms. Two NS later, I had a diagnosis of cervical herniation. I began therapy and quickly knew that they were missing something. By May 2011, I could no longer work full time. The doctor I work for was very understanding. I went to #3 NS that July and he dx'ed me with CM and 3 ruptures. He did not treat CM so sent me to an internationally known NS. I felt very good about my decision to go see him... Little did I know... By August, I couldn't say complete sentences and was in the bed at least 20 hours a day due to vertigo, nausea, and bradycardia. My vision and hearing were very poor. despite my severe symptoms, i had trouble finding a NS to help me because of my small herniation. this NS chose to do surgery due to flow study report. It showed absent of csf in three areas including, 4th ventricle and aqueduct with a very mild herniation of 6mm. Surgery was a success (november 28)!! Discharged in 2 days and felt great!!! The first two symptoms I noticed that had improved were tinnitus and vision (I could finally see!!!). I went back to work at 5 weeks and within 3 months I started declining and ended up sicker after decompression than before. 5 months post op, I was sleeping 1 out of 5 night... Slurred speech... Not able to perform certain ADLs... I was so broken. And then I found Dr. Capocelli in Little Rock, AR. Wanted to get one last opinion before quitting my job and I am glad I did! He did new MRI ( he does head to toe imaging to check for everything) 8 months post op and diagnosed me with severe Cerebellar Sag and CM. my tonsils were still herniated, but actually not As much as my entire cerebellum. He performed my #2 decompression 8 months after my first. My surgery was 7 hours long and he stated he had to "redo" what was done and "do" what should have been done the first time. He said it was "unfortunate" that my brain was left in the shape it was in. He also did a cranioplasty and covered bone with synthetic bone graft that will eventually grow my own bone within 1-2 years. I am 7 months post op and besides dealing with cervical herniations and TMJ, I M healthy again... I have a few mild symptoms that improve daily. As of right now, i feel that all nerve damage is temporary. I am a wife, mother, and nurse again...And life is good!!!!
God saved me and gave Dr. Cap the ability to put me together again! He is my hero! I had my 6 month MRI last week and he said, it is "amazing"!!
1$2). . Your symptoms are a lot like mine were. For a year, everything went slow and then it seemed like everyday I had something new pop up. I had more than 45 symptoms by the time I had surgery. Because of our anatomy, chiari can effect so many parts of the body. All of your symptoms can be CHIARI related. And I am proof that herniation size doesn't matter!
3). I do know that my posture, looking down for long periods, jarring my body, and sleep position affecting me. It took a while, but through trial and error I found ways to prevent certain things from happening. Also, cold weather and low pressure systems reeked havoc to my body!!
4). There were a few moments I felt like I needed to go to ER, but I knew that it would not help. So I would lay down with legs elevated and that seemed to help those "scary" times.
5). I don't think your back caused the problem but it Probaly doesn't help matters. If you have a syrinx your pain will be more severe. When I would get bad muscle spasms from cervical herniations, I would always have major neuro symptoms because of the muscles compressing my already damaged nerves! So I focused a lot of my time trying to keep muscles in check (stretch, brace, cold packs, posture....)
6). Toradol injections were my drug of choice. I would get one weekly and also take ibuprofen on days without Toradol. I felt like narcotics masked the pain and didn't really help ease it. Toradol is an antiinflammatory and it would help for several days!
And most important advice I can give is SEEK NS that is EXTREMELY knowledgable about chiari malformation. there are some that hold it very close to their heart and stay up to date on the latest research. My NS actually did research and training and before moving to Arkansas had at least 800 decompression surgeries behind him. Don't make the mistakes that I did. It took me 5 tries to find my hero! :)
From experience, I know, how frustrating it is! Our diagnosis can leave us with more questions than answers... BUT we have to chose to stay strong and fight "it" (mentally and physically) harder than we have ever fought for anything in our lives. Stay strong and fight hard to win this battle! It can be done!! Keep the Faith!
My sleep study was in 2007 with the same jerk neuro who didn't tell me if there was evidence of anything on my brain CT. I dont think I have sleep apnea. I have never even snored according to those privileged enough to listen to me sleep. My general doc wanted to blow off my symptoms, so I decided to go to neuro on my own. Now that I have a diagnosis (and she has her foot in her mouth) I think she may be willing to order some blood tests or some of the more simple tests if I asked her to. I just don't know what can be diagnosed with simple things and what needs more complex neuro studies.
My doctors haven't wanted to do any testing beyond the MRI series. It's only since I've had continued issues that my PCP has finally started taking me seriously and getting involved in managing my care - which is incredibly nice. Insurance is a nightmare and I fear it will only get worse.
I'm not really at acceptance, either. I'm not even certain that's possible! I think it's just one day (or hour, or minute....) at a time. I also have back issues, too. I have herniated and bulging discs throughout my spine, a syrinx the length of my thoracic region, and scoliosis. I had a spinal fusion for the scoliosis in 1997 and had to have the hardware removed in 2000. I found out last week that my Ortho thought I had EDS when I was 15 but never said anything. S, yes, do your best to get whatever records you can and any testing you can done now.
And hang in there :)
Annie
I'm not really at acceptance, either. I'm not even certain that's possible! I think it's just one day (or hour, or minute....) at a time. I also have back issues, too. I have herniated and bulging discs throughout my spine, a syrinx the length of my thoracic region, and scoliosis. I had a spinal fusion for the scoliosis in 1997 and had to have the hardware removed in 2000. I found out last week that my Ortho thought I had EDS when I was 15 but never said anything. S, yes, do your best to get whatever records you can and any testing you can done now.
And hang in there :)
Annie
COMMUNITY LEADER
How long ago was ur sleep study...u know u can have it done at home....I had mine like that....google NoveSom and see if ur Dr will set it up for u.
Medical ins is not the same as it was yrs ago....u can not afford to go to Drs even when u have it....ugh...
Oh, and how do you convince insurance companies to cooperate and what the heck are you supposed to do when you meet your max benefit for the year? Ugh.. I hate my life. I haven't found that peaceful acceptance yet. Was at my whits end with my back problems, now add this and I'm definitely on the edge.... Oh yeah, stress free living, I forgot!
I was tested for sleep apnea awhile back and it was negative. Am I supposed to be tested again now that I have symptoms? I HATE sleep studies since I have such trouble sleeping anyway! Does the NS test for all that other stuff? Is any of it something my general doctor can do?
COMMUNITY LEADER
My Chiari specialist RX'd all my MRI's to be redone since it was more than 6 months since I had my MRI's and I saw him....they said changes can happen in that time frame and wanted them to be 6 months or less....to review.
But all in due time....
While u wait get tested for EDS, sleep apnea.....ICP, POTS...rule them out medically as these conditions can affect how u feel and heal should u have surgery.
Thanks for the comments. I have left messages for the NS to see if he will order the CINE study so I can do that while I am waiting to see him. Fr some reason, the regular neurologist would only order the cervical MRI even though both were recommended by the NS who read the brain MRI. My plan is to get the tests done ans see the local NS to order any additional tests that are needed. Once all the tests are done locally, I will take them to a chiari specialist (maybe two) for his opinion. Just wanted to get as much of the initial leg work done locally. As for the other MRIs, I doubt insurance will pay for any more since I have had them in the last year. They didn't even want to approve the cervical one which I have never had before. I need to call and get a list of all the ones I have had and look to see which I have copies of still and get opines of all the rest to start to get all this organized.
Selma is a hero! I really don't have much to add to what she said, but while you are waiting for your appointment, try to get whatever testing out of the way that you can. To to the NS with as much info as you can. And don't be surprised if the NS acts like it's no big deal or the Chiari doesn't cause symptoms. Most of us have had to go through several doctors to find one who kind of understands.
It is not easy, not pre-op, not post-op. I had decompression almost 1 year ago and I don't feel much better. But my syrinx has stopped growing and my skull is more anatomically correct, so it was worth it. As for pain, nothing really helps, unfortunately. For me, it's just about making sure I rest when I need to and use lots of ice packs. I have 3 kids, all of whom are home schooled, so I know that low stress and taking it easy are pretty near impossible. But you do your best.
Good luck!
Annie
It is not easy, not pre-op, not post-op. I had decompression almost 1 year ago and I don't feel much better. But my syrinx has stopped growing and my skull is more anatomically correct, so it was worth it. As for pain, nothing really helps, unfortunately. For me, it's just about making sure I rest when I need to and use lots of ice packs. I have 3 kids, all of whom are home schooled, so I know that low stress and taking it easy are pretty near impossible. But you do your best.
Good luck!
Annie
COMMUNITY LEADER
Well not everyone with Chiari needs surgery....as it is not a fix or a cure, only a means to restore CSF flow and slow progression.....
So u need to know if u have a syrinx, or an obstruction to CSF flow and over crowding....these are some of the more important issues along with the related conditions, EDS is one of the top ones to review and rule out, sleep apnea, ICP, POTS....
Keep in mind, a cervical MRI will only show if u have a syrinx in that area, and they can form in the thoracic and lumbar spine....and tethered cord can only be suspected from a cervical spine MRI, u need the lumbar MRI....
One last thing to consider....surgery restores CSF flow, but, many symptoms continue post op...that is a possibility.
Make sure u find a true Chiari specialist b4 u consider surgery.
Are there any contraindications to surgery? Based on my symptoms and how they are progressing, I would be surprised if they did not find syrinx or tethered cord or something when they do my cervical MRI next week. Regardless, I would likely be a candidate for surgery, but are thing ever so screwed up in there that they CAN'T do surgery? Facing life with all these symptoms with not even a surgical option is scaring me. I have zero quality of life right now. I dread the surgery, but dread doing nothing even more.
COMMUNITY LEADER
I know what u mean, but u can only go forward and to look back may trip u up at this point....focus on what u know now....
But I totally agree, it would be nice if Drs told us and not treated us like their kids and decide what we should be told or should be concerned with....it is frustrating....
But had I known about it when I got the CT in 2007, I would not have allowed then to work with me neck which may have made the symptoms appear or worsen. Grrrrr. No way to tell. I'm glad I know about it now, but just irritated I didn't know about it sooner when there should have been some evidence on CT.
COMMUNITY LEADER
I totally agree u should have been told regardless of how they view the results, but that is not how they feel....this is y we suggest requesting copies of ALL testing and the reports...we find out more this way and have all the info on hand so getting a 2nd or 3rd opinion is faster.
I know I had a RX for PT post op, but did not go and my NS said it was good I hadn't as my disk's slipped further and PT would have meade me feel worse....
Not knowing what u do in PT it is hard to say.....but, I know the more active we r, the worse we can feel...
I think it could have been a matter of time, as I was not doing nething PT wise when all my symptoms flared....u just never know. It may have been a Godsend that u had PT and found it sooner...???
Yes, clearly, you are my personal answer source as no one else was brave enough to read my novel. I'm sorry, but your input is truly appreciated.
The thoracic one was in the last six months. The lumbar ones were at various times since 2009. Most recent being probably within the last year.
As for the CT, even if that neuro did not feel it relevant, he should have told me and I could have at least been aware of what not to do. As a medical professional, I feel it is a patients right to be informed of EVERYTHING, not just what the doctor feels is relevant. Let the patient decide what is relevant and what is not. I'm wondering if maybe we didn't mess something up with all the PT we were doing for my back that aggravated the Chiari and set myself into this whirlwind of symptoms. Had I known there was even a chance I had Chiari, I would have told PT and we wouldn't have been doing some of the stuff we were doing that involved my neck. While I am not a money hungry individual, I will be VERY mad if I get my hands on that CT and see that there was evidence of the Chiari and I was never told. My feeling right now is, maybe I had. Chance of being one of those non symptomatic people if only I had known. I know we had done some work on my neck in PT shortly before all this started because I was obviously having headaches and pain in my shoulders and neck.. Maybe it's just coincidence and I am grasping for answers, but again, had I only known, maybe all of this could have been avoided.
The thoracic one was in the last six months. The lumbar ones were at various times since 2009. Most recent being probably within the last year.
As for the CT, even if that neuro did not feel it relevant, he should have told me and I could have at least been aware of what not to do. As a medical professional, I feel it is a patients right to be informed of EVERYTHING, not just what the doctor feels is relevant. Let the patient decide what is relevant and what is not. I'm wondering if maybe we didn't mess something up with all the PT we were doing for my back that aggravated the Chiari and set myself into this whirlwind of symptoms. Had I known there was even a chance I had Chiari, I would have told PT and we wouldn't have been doing some of the stuff we were doing that involved my neck. While I am not a money hungry individual, I will be VERY mad if I get my hands on that CT and see that there was evidence of the Chiari and I was never told. My feeling right now is, maybe I had. Chance of being one of those non symptomatic people if only I had known. I know we had done some work on my neck in PT shortly before all this started because I was obviously having headaches and pain in my shoulders and neck.. Maybe it's just coincidence and I am grasping for answers, but again, had I only known, maybe all of this could have been avoided.
COMMUNITY LEADER
No worries,....there are a few here that can answer u , not just me, but I will attempt to answer all ...lol...
U will want the auto immune thyroid testing done...even an ultra sound of the thyroid can be helpful.
Well, they may have seen the malformation but not too many feel or know how it can affect the person with it, they feel it is an incidental finding....unless they see a herniation of what ever they feel fits the criteria ( and we all know that is not correct) only then do they feel compelled to let us know.
Even tho u had a lot of MRI's of the thoracic or lumbar spine it may not show as it can change like nething with time, how long ago were these MRI's?
I had a lumbar spine MRI yrs b4 my brain MRI and I was told nothing was wrong....fast forward to my Chiari DX and my Drs wanted copies of ALL MRI's I had...and reports and guess what, I had tethered cord and was never told....just bcuz these r considered congenital they feel we have had it all this time it is of no significance....ugh....
Some radiologists only report on what they r told to look for, others may include what they find regardless....this has been my experience so far.
Not sure ill ever get to where I have no questions, so be careful what you wish for lol They just did the normal thyroid thing at the general doctor before I knew I had Chiari.
One more thing comes to mind (this very second lol), ok, maybe 2. I had a brain CT in 2007 during one of the many work ups for my headaches. In the very least, should they not have been able to see the bony abnormality and either diagnosed me then or at least recommended further testing? Secondly, I have had a ton of MRIs of my lumbar spine and one of my thoracic since my back surgery. If I has syrinx in those regions, would they have been obvious to whomever was reading it, or would someone with special training, like a NS, who reads the brain MRIs have had to read it and or the normal radiologist had to have been specifically looking for that? They were looking for discs etc, just wondering of they would have seen other things that were there as well.
One more thing comes to mind (this very second lol), ok, maybe 2. I had a brain CT in 2007 during one of the many work ups for my headaches. In the very least, should they not have been able to see the bony abnormality and either diagnosed me then or at least recommended further testing? Secondly, I have had a ton of MRIs of my lumbar spine and one of my thoracic since my back surgery. If I has syrinx in those regions, would they have been obvious to whomever was reading it, or would someone with special training, like a NS, who reads the brain MRIs have had to read it and or the normal radiologist had to have been specifically looking for that? They were looking for discs etc, just wondering of they would have seen other things that were there as well.
Have an Answer?
You are reading content posted in the Chiari Malformation Community
Find out how beta-blocker eye drops show promising results for acute migraine relief.
In this special Missouri Medicine report, doctors examine advances in diagnosis and treatment of this devastating and costly neurodegenerative disease.
Here are 12 simple – and fun! – ways to boost your brainpower.
Discover some of the causes of dizziness and how to treat it.
Discover the common causes of headaches and how to treat headache pain.
Two of the largest studies on Alzheimer’s have yielded new clues about the disease
