Chiari Online Support Group

Not again

So I had surgery in 2005 and had a patch put in and my C1 & C2 shaved down. I am 15 yrs as of the 27th since surgery. I am now having headaches again dizziness black spot and left eye going blurry. I have had 2 LP past yr to drain additional fluid around my brain. My neuro told me to drink more water and do yoga would not order a MRI. So it is crazy to me. I cant get into a NS very easily due to the fact I’ve already had surgery. Thanks in advance

Ugh. I hear ya sister…we have the surgery, so now we are “cured”…never to suffer from Chiari issues again. SO frustrating. I can’t get ANY help. Now I am diagnosed with anxiety and depression because of my symptoms of brain fog, insomnia, numbness, headaches, chest pressure, falling, dizziness, etc. (Sounds pretty much like pre-surgery me to me!!) Noone will bother to see if I have reherniated, etc. SO defeating. (Or take me seriously about possible EDS)

i’m with you also. have you tried asking you primary care to send you for MRI? If you can get one and it shows issues, you may have a better chance to get into another specialist. suggest trying to get into a neurologist not a neuro-surgeon first off. the neurologist should be able to refer to surgeon if that is needed. There are surgeon that specialize is secondary surgery, you have to hunt for them and may need to go out of state for the help. I had luck sending my scans to Mayo, Jacksonville Florida and they were willing to see me. just know they were 3-4 months out for appointments. you may want your primary to send off medical records and request Mayo to review them. There is a specialty place in long neck, new York also that will see chiari patience’s who need second surgery also. hang in there and know your not alone.

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I had a neurologist and she kept putting me on pills and she refused to do a MRI on me. I now have clear liquid coming out of my nose she told me it was normal. I informed my PCP she has not gotten back to me yet. If it gets worse today im going to the ER because I am so tired of feeling this way.

@Katie3 I am really very sorry to read this and sorry for your suffering. I am curious about your experience, as with all the others here, in order to best help my 11 yo daughter. She was diagnosed with Chiari in August 2019 and is very symptomatic. She is also being referred for genetic testing for EDS. My question is this: if you are having the same symptoms you were before surgery, would you consider it again (if you had it to do over). I’m am frightened of putting her through such a large surgery only to have her back in the same condition— if not worse. Thank you for sharing your experience with us. Any input you can add would be greatly appreciated. May God bless you and continue your healing!
Warmest Regards, Angel

Angel,
Children with Chiari are VERY different than adults. If she needs the surgery, she should have it. Would I do it again? YES. I am having some of the same symptoms, but not the one that was the scariest, the pressure in my brain that made me want to take an ice pick to it!! That is gone and had not been there since surgery. My other symptoms also stem from my job, my obesity, my stress levels, my farm, my lack of sleep, my age, etc. She has her whole life ahead of her. Is she symptomatic?? If so, how bad? It is a major, painful, scary surgery and I would find the BEST, most respected surgeon you can, that has MANY of these surgeries on children under his belt.
I can’t imagine if my 11 year old needed this surgery, but I can’t imagine letting her suffer with Chiari her whole life. I FEEL for you mama. I waited 5 years, and exhausted ALL my options, first. When I felt life couldn’t get any worse, I had surgery. It truly depends on what she has going on and the severity of her symptoms. Good luck. Prayers, and keep us posted!

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Thanks, I finally got results I have intracranial hypertension I’m on Diamox for it. But i Had surgery when I 15 so I understand. If you have any questions ill be happy to answer them.

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Thank you Katie, I am covered in chills just reading your response. She is very symptomatic. It started with a nonstop headache ( minimum 6/10 usually 8/10 if she is trying to do anything ) unfortunately, now the headache is the least of her problems. She has constant neck, back and shoulder pain and consistently has pain in all her joints including her rib cage and collarbone. Her stomach hurts all the time. She has severe insomnia. Starting in January she began having constant visual hallucinations and still has some auditory hallucinations as well. Most recently, she has lost all of her peripheral vision and almost all the rest of her vision is blurred. She also has numbness in her entire face and sometimes in the hands and fingers. These symptoms used to come and go, now they are constant. She has begun to lose words and even small things like knowing where the cups are in our kitchen. It is terribly frightening and the lack of education in the doctors where we live is frustrating. We are currently waiting on a second opinion from Boston’s Children’s Hospital. I pray everyday for the right doctors to find the answers to help her. I also pray everyday for every one represented here. May God continue to bless you and please know that your

Angel,
Oh, she needs an eval stat! She may have Syringomyelia, as well. Poor baby. I still have issues with numbness in my hands, I have problems finding words, banding pressure in my chest and gut issues. I, of course, try to explain it all away with other possible ailments.

Hers sounds very severe. What does her MRI say? How herniated is she? Does she have pressure in her spine, as well?

Prayers…

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So far the MRIs have shown no syrinx and only a 6 mm herniation. Most of the doctors we have seen here ( we live in SC) have tried to attribute everything to migraines. They have also tried to say that she is basically causing her own symptoms bc of anxiety. While I agree she shows some signs of anxiety and depression, who wouldn’t after 7-8 months of chronic pain with absolutely no help. Also having drs tell her it’s “all in her head” has not been helpful at all. I’m praying that Boston’s Children’s Hospital will have a better course of treatment for her. All the meds that the neurologists have prescribed ( everything from amitriptyline, Cymbalta, Imitrex, Maxalt, etc— the list goes on forever) have either not worked at all or had very negative side effects. She currently is only on vitamins, minerals, ibuprofen, Tylenol, benedryl, melatonin and one real prescription for clonedine ( just recently given by her pediatrician—after I literally broke down crying for something to help her sleep). She still only sleeps for a couple of hours right after she takes her meds. Thank you for your input and support. I feel like I am loosing my child little by little, day by day. This place gives me comfort that there are others like her and there is Hope for her to one day feel like herself again. I just pray that it is sooner rather than later. She is missing out on the innocence of childhood and it breaks my heart :purple_heart:
Angel

Have been rechecked a number if times…all say ok…don’t think so! Arrrgh! Clear fluid running down my neck…duh

This is nuts. How is yoga going to help you?? What about another dr.? Hope you get the help you deserve… prayers are with you.