Chiari Online Support Group

Pediatric Chiari plus multiple diagnoses

Hi All, I am getting desperate. After a week long hospitalization, my daughter is no better, dare I say worse than before. Our pediatrician has written out a number of diagnoses for her including Chiari, bilateral headaches, visual disturbances with tingling and numbness of skin, epidemic vertigo, myoclonic disorder, dysphasia, and transient alteration of awareness!! Even with all that, plus severe insomnia and probable EDS, no one wants to help treat anything but migraines! These are not migraines! She has responded negatively to every single migraine treatment offered. My question now is: does anyone have experience with The Mayo Clinic in Minnesota, John Hopkins, or Shands Children’s? Specifically I need to qualify for financial aid to cover medical costs. I have not been able to work since she got significantly worse in August. My husband works and is even trying desperately to find a second job but honestly, every dime (and then some) of “extra” money is spent taking her back and forth to hospitals that are between 3-4 hrs away and paying for meds that are either over the counter or not covered by her Medicaid. She is suffering mostly from the pain in her neck, her vision issues (there’s nothing wrong with her actually eyes— we’ve been told it is coming directly from her brain stem— and the numbness in her face and hands. There has absolutely got to be someone out there who can help. Her daily pain scale went from any average of 4/10 before our hospital stay this month (12-17th) to an average of 7/10 ALL DAY AND NIGHT!! This is unacceptable to me. We avoid ibuprofen bc of the fear of rebound headaches. I try everything natural I can think of—she is actually on only vitamins, minerals and Zofran. Someone please tell me you have a tip to help my baby…I feel like I am loosing my mind and my child in this process. I am currently filling out financial aid paperwork for the above listed hospitals, I would just love to have some validation that I’m even reaching in the right direction! Any help or info would be greatly appreciated. Thank you in advance and please know that although we may not know each other, I pray for each member and family represented on this site daily. God bless each of you—
Signed one exhausted and frustrated mom

My heart goes out to you in your situation with your daughter. I would like to point out something that took me a while to figure out. I had lots of the “multiple diagnoses” that your daughter has. It took a differently thinking doctor to point out to me that I had one diagnosis, which was Chiari, and a whole lot of symptoms with fancy medical names. He pointed out the difference between a diagnosis and a symptom.

I spent years running around to “fix” the different symptoms, saw many specialists, and got different medications or different shrugs of “sorry, can’t help you there”. I learned about “fix what you can see”. What you can see with your daughter is that she has Chiari as evident on an MRI. Chiari brings a slew of different symptoms for different people. Doctors are people too and often want to provide relief for those symptoms. Unfortunately, medications often do not work and are not worth the side-effects. Pediatricians and neurologists do not have much else to offer.

Focus on securing neurosurgeon appointments who will review the saggittal and horizontal views of the forumen magnum with you. Last I remember is that you were waiting for a second neurosurgeon. What did the first one say? Is that door shut? Patience…

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I should also say that ruling out things is very much a part of shaping a CHiari diagnosis - to make sure that other conditions are not the source of so many symptoms. Takes time to work through it!

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@gabby_jazzypants Thank you for your response and I agree completely. I throughly believe that she has Chiari and the rest are symptoms. You nailed it exactly that the drs are trying to treat the symptoms of headaches…that’s it. I’m actually waiting on a call from Boston’s Children’s Hospital. They are doing an online second opinion and assigning her a neurosurgeon to review all her medical records. I believe this will be a much more effective course of action, as opposed to going to see them in person as a walk in patient. They assure me that they can usually have everything reviewed and a second opinion given within approximately 2 weeks. If they decide that she needs another treatment plan, they will assist with the financial aid paperwork and also allow her to keep the neurosurgeon that is reviewing her case as her doctor at their facility. I desperately pray that this is a light at the end of the tunnel. As for the 2nd neurosurgeon, he said that at the time he saw her that he thought decompression could do more harm than good, as she is in the middle of a growth spurt, he was concerned that even if the surgery was done, it would need to be repeated. I have no disagreement with that however her symptoms have drastically worsened since he saw her and I feel certain that there must be something that can be done to help her until such a time that surgery becomes either more appropriate or necessary. I am very interested to find out how the second opinion goes with Boston. Again, thank you for your time and support, I truly appreciate it!

Please look into Gadolinium toxicity. If her symptoms are worse and she has recently or has had multiple MRIs with gadolinium contrast she might also be experiencing effects from gadolinium poisoning. A urine test can check to see if her body is still excreting gadolinium which is suppose to leave the body within 24-48 hours after receiving the contrast. To find out more info look at gadoliniumtoxicity,com.

My body retained gadolinium and I was surprised to see that people that don’t even have chiari and syringomyelia like myself were experiencing a lot of the same symptoms as me after undergoing MRI with contrast. Please understand that I am not saying your baby is not suffering from chiari but this could be something that is compounding her symptoms. Gadolinium is a heavy metal that can cause a whole host of problems including neurological, digestive, muscular/joint pain, etc.
Urine tests can be ordered through Dr Data or Genova testing in case you are interested in testing her or if your doctors don’t know where to get such a test.

I pray you are able to find some help for her soon and that she will experience arelief of her symptoms.

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Even though I am an adult, I was assigned to a pediatric neurosurgeon at Hopkins, Dr Eric Jackson. He determined that I had a spinal fluid leak that caused my brain to slump imitating Chiari symptoms. I was getting worse quickly. I had intense positional headaches, memory lapses, every day was a struggle.
I highly recommend laying down with ice on the neck as the best non-drug relief. Sometimes I would pack ice all around my head.
I am now 4 months past receiving 6 patches to my spine and I am headache free and no more neck pain. I have an MRI scheduled at the end of this month to see if the brain lifted back up, floating in fluid as it should.
Dr Jackson was my second opinion doctor. The first one, from another hospital, wanted to do Chiari surgery.

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My son was diagnosed with chiari in September we had are first appointment with mayo in Rochester Minnesota in October by November we were in for surgery the neurosurgeon we saw said his case was one of the worst he had seen in a 4 year old boy all I can say is keep fighting mama you know your baby best if you have any questions please ask I’d be happy to answer anything

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I would echo what Gabby(and the other posters) said. Many of the issues you describe can be Chiari.

It sounds like you are going down to right path in getting opinions.

There is a board of pediatric neurosurgery and I would suggest making sure that whomever see your child, is a board certified pediatric neurosurgery. That can be checked at www.abpns.org

In general , many of the symptoms you describe may be myelopathy(dysfunction of the spinal cord). Per The Chiari Severity Index, once myelopathy is occurring, the surgical failure rate more than doubles(in that article, surgical success rate went from 81% to 58%).

You don’t say where you live but, since Shands is one of the places you mention, I will assume Florida. If that is the case, the busiest pediatric neurosurgery team in FL is at All Children’s(and they now have an affiliation with Johns Hopkins). The longest practicing pediatric neurosurgeon in FL(and the only one with a pediatric neurosurgery fellowship) is Dr. John Ragheb in Miami.

Those may be other choices for consideration.

Clearly, this is something to pay attention to(as you are doing).

Hope these thoughts were of some assistance!

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@sarcar thank you for that information. I will definitely check this out. I appreciate your input greatly!

@Linda2 Wow! That is definitely a new point of view that I have never heard. Thank you for sharing your experience. At this point I’m interested in any info I can get.

@Nicki08 thank you for your support and sharing your son’s journey! I pray he continues to heal quickly :purple_heart:

@Dr_Trumble thank you for your input as well! We actually live in SC but at this point I am willing to travel anywhere necessary to get the help and proper care she needs. I will definitely check those resources as well.

Hi, I was wondering, how old is your daughter? I don’t think you mentioned. I was thinking of how much hormones affect my symptoms. Maybe if she is reaching puberty, hormones could be affecting the way she is feeling/her symptoms.

Keep researching and asking questions. Keep seeing doctors and getting tests done. You’ve got this mama!

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@SusanH, she is 11 and I definitely believe that her symptoms worsened as soon as she started puberty. It took until then for her diagnosis, but she has shown some signs since early childhood…I just never knew what exactly was going on until she had an MRI and I started educating myself…the doctors definitely did not ! Thank you for sharing this with us. I honestly wasn’t sure that reaching puberty was kind of what “lit the fire”.

Chiari Severity Index

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Hormones have been a huge factor for me. During the second half of my cycle I suffer more (I know we all do, but for me a lot of the Chiari symptoms are worse). I’ve found sticking to the migraine diet (limit gluten and sugar) and eating more meat and veggies has helped a lot. Also, eating a more anti-inflammatory diet helps, cruciferous veggies etc. You can search it if you’re curious. Also, ibuprofen to help with inflammation and the tingling (especially closer to menses) can help, drinking more water. Maybe try to have her go for a walk every day (help keep her mind busy and help with circulation). For me, I was so bad that surgery helped. I was having real difficulty going on. Is this something you are considering? Has it been discussed? I also wonder if because this is a fluctuating time for her, if her symptoms will resolve or decrease when her hormones stabilize? Unless they are pretty stable? Mine never were, still aren’t.

I hope you find the help you are looking for. If you have any questions for me, I’m an open book.

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Thank you Susan. We are currently having a second opinion done online with Boston’s Children’s Hospital. Unfortunately, her symptoms are not getting better in fact, quite the opposite. She is suffering terribly from lots of neurological symptoms including ( the most pressing at the moment) visual issues. We had a very encouraging appointment today with her optic oncologist and he has referred us to a neuro-opthomoligist. Unfortunately she is loosing most of her vision and has periods of complete blackouts. The eye doctor today assured us that there is absolutely nothing wrong with her eyes, nerves or visual acuity and that he is sure that all her problems stem from a processing issue with the brain itself— likely caused by the compression that has been noted in her latest MRI. I am hopeful that BCH will offer a different course of treatment as MUSC (Medical University of SC) has only been willing to attribute her symptoms with migraine headaches. They have completely disregarded her other neurological symptoms and stated that her Chiari is “ merely a notation in her chart “!!! She has not yet started her cycle so I can only imagine how much more that will impact her condition. I am praying that we will have our second opinion by the end of next week and will be able to set a new course for treatment. Although I am frightened of the surgery, I am even more frightened of her quality of life moving forward without trying it. Thank you for sharing. You can never know how reassuring it is to know that we are not alone in this hellish battle.

And that is the unique beauty of Ben’s Friends.

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