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Toni’s Story (Chiari Malformation)

Toni's Story (Chiari Malformation) LRFor me, the headaches started in my pre-teen years. They were attributed to stress, hormones, sinuses, and any other everyday cause you can imagine. I frequently felt tired for no reason and pain seemed to affect me in different ways than others my age.

Over the years, I was put on many different medications to try and quell the pain. Though some would dull the pain a little, nothing ever helped with the stabbing pains I experienced in the back of my head when coughing or laughing.

In 2008, on my honeymoon, I began experiencing neck pain, which persisted much longer than previous bouts. I was given shots of toridol and muscle relaxants. A couple of months down the road, I developed bronchitis. A month later, the cough was still lingering and the pain in my head was excruciating. I ended up visiting the doctor to try and get the pain under control.

In the meantime, other symptoms began to emerge. I had electric-shock-type pains shooting down my arms, was frequently dizzy for no reason, and my balance became weak at best. I suddenly found myself holding on while lying in bed, feeling as though I would fall off. I couldn’t walk without holding a wall or some other structure for support. The tingling and numbness in my hands was constant, and I began to lose feeling in my feet.

My doctor ordered an MRI and I was eventually diagnosed with Chiari Malformation. I had decompression surgery 9 months after the neck pain began. Unfortunately, as many know, Chiari rarely shows up to the party alone. I have also been diagnosed with Fibromyalgia, Degenerative Disc Disease, Scoliosis, Cervical Kyphosis, Osteoarthritis, Hip Bursitis, Intractable Migraine, Irritable Bowel Syndrome, Interstitial Cystitis, and Plantar Fasciitis.

Two and a half years post-op, I am doing much better than I was prior to surgery, though each day is still a struggle. Chiari symptoms are like a box of chocolates, you never know what you’re going to get. Daily pain seems to be my shadow, but I do my best not to let it affect my regular activities.

This journey has inspired me to open a non-profit organization in my area, catering to those with chronic or terminal illness.

Toni
Missouri
Submitted 9-26-11

The informational content of this article is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.

This story is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.

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30 comments

  1. The brain disorder I had that began my journey was chiari malformation!!!

  2. Andrea Cottom Anderson

    I have the same thing and have all of the other disorders except for Scoliosis, Cervical Kyphosis Interstitial Cystitis. The statement “Chiari symptoms are like a box of chocolates, you never know what you’re going to get,” is so accurate

  3. Beverly Fritsche

    I was diagnosed with Chiari Malformation in 2003 after having what the ER drs thought was a TIA. I had issues my whole life with balance, migraines, bowel and many other odd things that drs just couldn’t figure out what was exactly the problem. Diagnosis after diagnosis, drs would be like, I think you have this or it could be this. It was frustrating!!! Was decompressed in 2006 after not being able to function properly anymore. Still have many health issues, fibromyalgia, migraines, balance, vision, depression to name a few. I was diagnosed with breast cancer 9 months after the decompression surgery and have been dealing with the aftermath of that too. But, still going strong. Have good days and bad, but most are manageable.

  4. I have a 21 yr old son who was diagnosed with Arnold Chiari at the age of 13. I was devastated. I took him to a neurologist and he said my son was non symatic. However he still gets very bad headaches. Now he is incarcerated and he doesnt want me to call them. He said they are aware but he should be on a bottom bunk bc we never know when the symptoms may get worse. I also had a son who had Arnold Chiari, I want to say 2, he was hydrocephaulic and he lived till he was 13. He had major medical problems though. But my son who is incarcerated Im very concerned about the treatment he will be given should the symptoms just come on. He also has chronic sinus problems. Its not easy knowing he is living with this knowing that the system dont even care. But he just goes with the flow and I have to accept it.

  5. I was diagnosed with this several yrs ago after being diagnosed with Lupus SLE. At the time it was suspected I was having TIAs. The neurologist, at the time made as if it was not issue and sent me on my way. I have suffered chronic migraines, neck pain, numbness, etc., etc. for years, This past year it has impacted my life like never before. I have begun to see another neurologist who also is not concerned ! He is looking for a million other things like PFO, tumor, etc. I also have scoliosis, “s” curve which due to my dancing all my life was not detected till my late teens. It is so interesting how you have many of the same conditions that I have which are, in my case ‘Lupus” related. I am so glad you were lucky enough to have a neurologist take this seriously. Infact, my friends teenage daughter was diagnosed a couple a yrs ago after complaining of severe migrains, again, told not to worry.

  6. Hi, I would like to urge all of you to be evaluated for Ehlers Danlos Syndrome. Many Chiari patients are affected with this disorder which is a problem with collagen. Please feel free to contact me if you have any questions, or look us up on FB. Best wishes for all of you, and my condolences to those of you going through these hard times… Keep believing God does have a plan.

    • I have EDS and Chiari while most Doctors I have spoken to refuse to believe the 2 go hand in hand I am convinced they do. Get checked its less evasive as any test for Chiari. Generally just an evaluation and you will have a diagnosis. You are your best advocate you know what is going on with your body so keep going until someone listens.

  7. I am 50 years old and my 29 year old son and I both have Hypermobile Ehlers Danlos Syndrome. I also have Fibromyalgia, MANY tummy issues, chronic bronchitis and asthma, severe migraines and constant headaches that feel like my head is going to explode from the inside, constant neck and back pain, neurological facial and head tics, arm tics, vertigo, vision issues, scholiosis, nerve damage, osteoarthritis, major balance problems, insomnia, and the list goes on. My memory keeps fading in and out and I get very confused at times. I see a chiro who has been amazing and I must see him at least 2 times a week to keep going. I noticed that I feel a lump on the left side of my neck that feels better afterwards. I have heard that a lie down MRI does not provide accuracy and – to be honest – I cannot do an MRI unless I am asleep before hand because of severe panic attacks. I may try and see what happens with a stand up MRI, but I have had mixed reviews on whether I have Chiari or not, but when I was young, a neurologist said that my head was too small for my brain, so,,,

  8. My son Joshua who just turned 3yr.s old on March 9th was diagnosed who Chiari on Oct 5 2011. I have always known that there something not normal about the things my son did from the time he was born. The Dr.s never listened to me. Till I showed them a video of my son walking and it looked like he had a Stoke. Drop Attacks where what they were. So Oct 5, 2011 we found out all along I was right. Now no Dr. wanted to help cuz it just wasn’t that bad. Needless to say from Dec. 2011 my sons started having more pain in his head and drop attacks. It took for my son to be lifeless on the ground for the Dr’s to take a real good look at him. I had been tell them for a while he coughs when he eats and drinks. They said o it’s problem nothing. Well when my son was lifeless on the ground they did more test. He was silently aspirate and now having serizes. Joshua went from they will never do surgery on him to only 4 months later having decomprssion surgery done on Feb 22nd, 2012. When people look at your child they see a NORMAL child, but it’s what you can’t see that is so hard for people to understand. Thanks for sharing your story.

  9. Hi, I also have Interstitial Cystitis & my Fiance has Chiari Malformation with a cerebellar tonsillar ectopia. He was told that he is incurable. Watching him suffer is so hard. He was seeing a Pain Management Doctor until 1 month ago, but because he is on disability we could no longer afford to pay his Cobra. He is being very brave. So far he stopped taking the pain meds which were making him vomit daily. He is trying to just get through the day and hopefully he will be eligable for Medicare in September. I am in utter disbelief at how his disease is being treated or I should say the lack of proper medical treatment! We have been told by a few Neurologist that his pain and symptoms are not from Chiari. At the last visit to his Neurosurgeon the Dr. entered the room and stated, he would no longer be treating chiaria due to the fact the Chiari Center was being sued because they were performing experimental surgery on Chiari children. We were both stunned. Chiari Malformation has been removed from the list of treatable diseases at Penn neurological Institute. I’ve called numerous Neurologist, Spinal surgeons and neurosurgeons offices only to be told they do not treat Chiari. What is a person to do? Just suffer in silence! I just wish more research was being done. Thanks for sharing your story.

  10. Hi Toni,
    I presented with symptoms very similar to yours. When I went for an MRI to confirm Chiari a tumor the
    size of a plum was founf on my right temporal lobe. The tumor was resected in 9/03 my 14mm Chiari was
    decompressed in 2/07. Love the life is like a box of chocolates line. Sooo true of Chiari….I say Chiari much like life is a winding rd. Keep fighting like a gurl!

  11. I was diagnosed with this a few years ago and some of my doctors say it’s nothing
    only type 1 , but have lots of pain in my neck and a pain center said I had Occipital Neuralgia.

  12. I’m so glad that my story could elicit so many responses from others who have been through similar trials. I run a Facebook group for Chiari Malformation (called The Chiari Nook) that it seems many of you would benefit from. Please feel free to join, where you can get some of the support and answers you need to help you fight this awful affliction. http://www.facebook.com/groups/TheChiariNook/

  13. I say my chiari goes in and out of remission and right now I’m in remission. Had a shut put in first, and lucky me had a stroke on the table, fully recovered! (i say with a smile) next came decompression, which I have to say helped so very much. I take a slew of drugs to maintain, work full time with three year olds no less and love life. I do have the days when the chiari decides to rear it’s ugly head (no pun intended). So let me say this, remission please stay!!!! I love life the way it is right now..

  14. Hi I was diagnosed with Chiari in October 2011 right after having my Thyroid removed then in April 2012 I had my decompression surgery for the Chiari . I know it has only been 7 months but my symptoms are returning this time worse then before plus new symptoms . I have Chronic head pain , neck pain , electric shock feeling in my head , tingling in my hands and feet , shoulder pain and burning , back pain , balance , when I talk words gets jumbled , short term memory loss , I had told my Dr at the Cleveland Clinic when I was there for my fallow up visit and he did an MRI and he said it looks good and there is nothing more he can do . He did send me to a Head Ache Dr . and all she did was prescribe all this medicine and sent me on my way . I tried the meds and all it done was make me sleep for 24/7 and it made my head hurt worse I tried calling her and explaining to her about what it is doing and still waiting for a response back . So I don’t know what to do or who to talk to . I live in a small town and there is nobody around that knows anything about Chiari i am guessing I am the only one in my town that has Chiari so no body knows what I am going threw and I feel so alone I can’t really talk to my family or friends b/c they have know clue what this it’s doing to me . So what I am asking is there any one who is going threw maybe some of the things I am dealing with or am I just going crazy . Thanks For Listening !!

    • Have you researched ehlers danlos syndrome?

    • I was originally diagnosed with MS. I lived with all my symtoms for 8 years thinking there was no cure. Deteriorating gradually I thought I was doomed. Avoiding all the details, I was finally properly diagnosed with chiari. After having decompression surgery I have recovered maybe 85%. What a blessing. I would like to know how to organize help group but don’t know how. Somehow I would. (Without raising too much hope) like to let MS people know that there are other ailments mimicking MS.
      Thank You for listening,
      Larry Jones

  15. Stephanie meredith

    I have an 11 year old daughter that had the same surgey a year ago and she is not the same kid she is always in pain, and the docs aren’t doing anything to help her now an I feel helpless with nowhere to turn,so thank you for your story.

  16. Hello I am 54 and have had 4 TMJ , 3 disk cervical fusion, 3 disk lumbar fusion numerous other surgeries for removal of bone spurs. I had the lumbar fusion less than a year ago it did not work in doing MRI I was diagnosed with cerebral tonsillar ectopia. My question is there a relationship between the chari’s and all the bone issues. Have to have revision of lumbar fusion and will have to have repair surgery on cervical fusion.

    • There is a link between Chiari malformation and Ehlers-Danlos Syndrome (EDS), a connective tissue disorder causing numerous joint issues and pain. Those of you with joint pain, fibro, arthritis, numerous ortho surgeries, etc. may want to look into this because it typically requires the patient bringing it up for the doctor to have his “aha!” moment and connect the dots.

  17. I’m sorry to hear about so many people’s difficult journey dealing with Chiari. I am 32 years old and had my surgery just about 1 year ago and all went well. I had type 1 with a significant syrynx from C4 to at least T4.
    My doctors were amazing and I had surgery with Dr. Souweidane at New York Presbyterian Hospital-Cornell Medical Center. They are in the top 3 in neurosurgery in the county. It sounds like many people just have not seen qualified people. I strongly recommend NYPH. It was only 2 months from the time I was finally diagnosed to the time I had surgery.

    • I was diagnosed with an Arnold Chiari Malformation- 10 days after i delivered my beautiful daughter Sarah – on Dec 28.1995- Prior to the delivery- i had no problems- my daughter weighted 10 lbs- and it was a very difficult delivery— my daughters right arm was paralyzed during the delivery—- while trying to push– i felt a “pop” in my head– became very dizzy and sick– and could no longer push- doctor pulled her out… approx 5 hours afer delivery- i began to get excruciating pain in my right arm- my daughters right arm was paralyzed during the delivery… so i was blown off as to the pain was “sympathy pain”– a month passed- and the pain stopped- two days- no pain and the pain then started in my left arm- same- crushing pain- but my skin got very sensive- and i couldnt even stand the air touching it-and had to wrap with ace wrap— its is such a long story— but the chiai was subsequently diagnosed- I was breastfeeding- so i went to a wonderful pain mangement md– and he helped me—- did nerve blocks- and i would pump my milk—ended up pregnant still breatfeeding— stymptoms got better– after my beaufitul son was born- c section- symtpms got much worrse- had decompression- ended up with NPH- had a shunt placed- and pain has just gotten worse and worse. There is alot more to it— but i could go on for hours– but it is the jist of it…. I hate going to physicians because they do not understand. I am so frustrated– My sweet daughter is going to be 18— and i am in so much damn pain- i went to a neurosurgeon today….. he said that the chiari does not cause any pain any all???? well- then i do not know what the hell is wrong with me.

      • Hi kim,i have this problem aslo no one understands me,I have pain everywhere it’s very hard for me. I have two kids,and everyday it’s a fight for me. No one unstand s the pain I have,I wish I can tell u it will go away but it won’t ,I have to live with this .there times I just cry cause the pain is too much. I got surgry but I will not be 100,but I feel you,so just hang in there,I no it’s hard. But try,I have no aslo to talk about this. Cause no one unstands me,hang in there good luck,

  18. I am a 16 years old. I was just recently diagnosed with Chiari malformation in a accidental finding. I was in a car accident but i was in really bad pain, in both my head and neck i couldn’t even walk at times because i was weak. They found it about a month ago. I am hoping that the surgery will fix it. As I was reading your guys story’s but your situations are a bit different. I hope everyone gets better soon though.

    • I had decompression surgery and I am doing well. Though surgery recovery was intense. I just recommend taking everything slow. If it hurts to exercise, take it slow. I have to remember the Chiari recovery is forever. If my attitude is positive, and I am proactive with my pain management, the Chiari does not overwhelm me. The one thing that I struggle with is my memory. I do not remember appointments like I wish, but it is a personal triumph if I am painfree. Decompression surgery saved my life, but I am the only one to not make my Chiari the thing that holds me back.

  19. I had surgery for Chiari in 2010, and everything was great for the first year. The nurse practitioner (not the normal one I see) told me I could go ahead and start running again, everything looked good……big mistake. After that I started to get pains in the back of my head where the surgery was, dizziness, nausea and really bad vertigo. I went back to my neurosurgeon, they did a MRI said everything looked fine, the same nurse practitioner told me I slept on my neck funny and sent me packing with muscle relaxers! I was passed around from dr to Dr to figure out what was going on with me until finally I went to a neurologist. He told me after that kind of surgery I should only be walking, swimming and riding an elipticle for a work out. I also shouldn’t lift more than 25lbs or it could cause a serious neck injury….thank you nurse practitioner!! I do not take pain meds, but found medication, not pain meds, that works for my vertigo, nausea and dizziness. He also is giving me trigger point injections for my pains for now. They only work for a certain amount of time and I can only do them for so long. The pains do come back, and I don’t know what my other options for the pain are. I was reading that a risk after getting Chiari surgery is Occipital Neuralgia. Does anyone have any other suggestions?

    • I just got nerve block injections for Occipital Neuralgia yesterday after suffering for 3 months with pain I attributed to Normal healing after Chiari decompression surgery. Turns out the severe scalp pain and tenderness, HORRIBLE neck pain and stiffness and severe headaches were hallmark signs of ON. Throw in daily nausea and constant dizziness and, well, that has been my post -op life for the last three months. The injections took about ten minutes and were not pleasant but certainly better than much that I have wen through in the last two years. I feel relatively good today and I understand the full effects aren’t felt for several days to weeks. I certainly would look into it! Best wishes!

  20. Pamela Rhinehart

    Our daughter Tayler was born in 2001 with Spina bifida at the time the neuro told us we were lucky she did not have the chiari well 8 years later after her suffering with symptoms we want to another neuro he looked at her scans and diagnosed chiari she had surgery June 17 2014 and has been in pain, dizzy and nauseated since went back to dr yesterday they want to give it three more weeks before we rescan but she can not return to school right now she is such a depressed 12 year old as she has always done so well in school please keep Tayler in your prayers as we will you all and I can say I love your site fight like a girl is wonderful philosophy

  21. Hi I have chiari and syringomylia, I was decompressed 4 months ago which went well and was told my syrinx and shrunk. I now get a ache at back of head and top of back, is this normal? Or is it due to been busy last coupleof days as I also feel shattered?

  22. Hello my name is Johnnyne and i am 31. i am 2 almost 3mths. post op.. How can I start a non profit organization in my city??? Do you have any pointers? IReally would love to help people like us. Thanks in advance? ????

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