Chiari Malformation type 1

Posted by anorwalk @anorwalk, Jun 19, 2013

Hi,

I’ve been reading all the post on chiari and wondered if anyone has a good out come of the surgery. I have been to 4 neurologist and 1 surgeon and keep getting different answers. 3 drs say I don’t need surgery and the last one said that i really need it or could be paralyzed by any straining. I have a headache all the time and can barely function. Balance problems, numbness and burning in my hands and legs My hurn. Is only 5mm. Any advise? Thank you.

i was just diagnosed with Chiari 1 malformations is the only way to fix this surgery & how bad is the surgery

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Welcome to Connect, @denise32,

I moved your message to this active discussion about Chiari Malformation so that you can meet others who’ve shared their experiences with this condition, and you can also read through some of the posts by members discussing similar questions and concerns about surgery.
Here’s some information from Mayo Clinic as well:
https://www.mayoclinic.org/diseases-conditions/chiari-malformation/symptoms-causes/syc-20354010

Please meet @lizwhite80 @mkell13 @vbrunette @johnnie @scotthinojosa @maidmarion @david33 @nanniesue4 @ziva @luckygirl @debim who have recently talked about living with Chiari malformation and surgery options.

I thought you might also like to read these stories about patients finding relief from pain caused by this condition
– Relief for pain caused by Chiari type I malformation https://sharing.mayoclinic.org/2012/12/24/relief-for-pain-caused-by-chiari-type-i-malformation/
– Diagnosis and Treatment of Chiari Malformation Spurs Nikki Prins to Reach Out to Others https://sharing.mayoclinic.org/2016/10/17/diagnosis-and-treatment-of-chiari-malformation-spurs-nikki-prins-to-reach-out-to-others/

While we wait for others to join the conversation, can you tell us a bit more about yourself, @denise32? What symptoms do you experience and how do you manage them? Does the neurologist that you consulted specialize in chiari malformation?

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@denise32

i was just diagnosed with Chiari 1 malformations is the only way to fix this surgery & how bad is the surgery

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My husband has that, and surgery isn’t bad, and should help you. My husband had the shunt replaced after the first one got infected. He doing wonderful not only moderate headaches now.

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They won’t do surgery if it’s 5mm it has to be 7mm. I went through this, and I’m sorry you have to wait, to see if it drops further. Doctors are wierd this way.

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Hi evryone,
My name is Laura and I was wondering if anyone knew what a chronic pressure headache is and won’t go away. (Feels like a rock constantly sitting on right side behind right ear). I had this feeling going on 5 years and I’m tired of taking meds that don’t help.

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I have a 5mm herniation and I had a decompression 4 months after being diagnosed. I was showing signs of permanent nerve damage. If not for that, the headaches, vertigo, balance issues and occasional passing out wasnt enough to have surgery.

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I’m sorry I missed understood, is this do to your cerabellum? I want to make sure I can give you some opinions without giving you the wrong ones.

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Has anyone been seen for Chiari and if so, any suggestions on a good Neurologist with knowledge on this condition?
Thank you!

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@jillweinandt

Has anyone been seen for Chiari and if so, any suggestions on a good Neurologist with knowledge on this condition?
Thank you!

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Hi Jill, Welcome to Connect. I moved your message to this existing discussion group in the Brain & Nervous System. Here you will meet others like @david33 @lizwhite80 @mkell13 @vbrunette @johnnie @scotthinojosa @maidmarion @david33 @nanniesue4 @ziva @luckygirl @debim who have recently talked about living with Chiari malformation. Hopefully they can share their neurologist recommendations.

Jill, I encourage you to read through the discussion thread to learn more about the experiences of others and to ask questions. While we wait for others to chime in, can you tell us a bit more about yourself? Are you currently seeing a neurologist?

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@jillweinandt

Has anyone been seen for Chiari and if so, any suggestions on a good Neurologist with knowledge on this condition?
Thank you!

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Thank you so much! No, my family practitioner has been prescribing my meds. I live in a rural area in Northern Wisconsin and the two Neurologists I have seen have been of no help.

Liked by luckygirl

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@jillweinandt

Has anyone been seen for Chiari and if so, any suggestions on a good Neurologist with knowledge on this condition?
Thank you!

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Jill, have you considered seeking a second opinion at Mayo Clinic? Here’s more information about the Chiari malformation care at Mayo https://www.mayoclinic.org/diseases-conditions/chiari-malformation/care-at-mayo-clinic/mac-20354017

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Hello, I am new to this group! Not sure if I am posting in the correct place! Does anyone in the group have Chiari?

Liked by luckygirl

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@oh_suzie_q

Hello, I am new to this group! Not sure if I am posting in the correct place! Does anyone in the group have Chiari?

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Welcome @oh_suzie_q. You posted to the right group in Brain & Nervous System. I merged your message into this existing discussion about Chiari malformation so you could meet others talking about living with this condition. If you click VIEW & REPLY in the email, you can scroll through the past messages and meet others like @jillweinandt @david33 @giglgirlnm @ziva @luckygirl @debim and others.

You might also be interested in these discussions on Connect:
— Chronic pain due to chiari 1 malformation with syringomyelia https://connect.mayoclinic.org/discussion/cronic-pain-2746d4/
— Chiari Malformation type 1, Addison's Disease, Steroid induced diabetes https://connect.mayoclinic.org/discussion/chiari-malformation-type-1-addisons-disease-steroid-induced-diabets/

SuzieQ, we look forward to getting to know you. What are you biggest concerns at the moment?

Liked by luckygirl

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@staceybeyer

I have been diagnosed with chiari malformation and I have been having bad headaches for over a year now 24/7. I also have blurred vision that the doctors are not sure why.i am on my 3rd set of botox treatment and it hasnt done nothing. I am nit sure if it is the malformation causing my problems and the doctor is no help with that. Anyone having or has had the same problems? Needing a little advise about this. I cant keep having migraines every day.

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My son has chiari. He's 20 now but was diagnosed at 18 with it. He has been on NUMEROUS migraine meds and currently doing botox. the first round helped maybe for two weeks. After that, he still has headaches daily The intensity of them come and go where before his headache was pretty bad daily but right now the botox is not helping much. Not sure we will continue with botox. We have been to neurologist for his Chiari, including at the Mayo Clinic. Everybody says his Chriari is not symptomatic. I think different. He has been having daily chest pain and shortness of breath which is put off as depression and anxiety. We finally had a cardiologist take him serious and found out he has inappropriate sinus tachycardia after wearing a heart monitor for 4 weeks. The propanolol he was placed on helped the first couple months however now the chest pain and shortness of breath is back, sometimes even worse. He has constant neck pain and stiffness. He has periphera cyanosis to both hands and feet that's associated with numbness. During this past summer, when we had heat index in the triple digits, my son would be standing outside sweating however his hands and feet are ice cold. He now has excessive sweating. This past December, we had two weeks of freezing weather. All the while his underarms are sweating so bad he has to change shirts. He sweats so bad now, he has to change shirts throughout the day almost daily. His balance is affected. His vision is affected. He has all these symptoms but yet we are told it's not his chiari even though most of his symptoms are that of chiari. Did I mention frequent urination?? Yep has that as well. Been to all kinds of specialist for these specific symptoms and those body systems check out fine. It's getting frustrating. It's hard seeing him in pain and feeling so bad and dr after dr saying it's just depression and anxiety that there's nothing else wrong because his chiari is asymptomatic. Good luck in your journey with Chiari I hope you don't get the run around like we have had. We are still continuing to find that one dr that will take him and his symptoms seriously. I just joined this group hoping to get support and any new ideas. I'm so glad I see several that have had great results and some relief with their symptoms. I wish you the best!!!! You know your body so don't let anybody tell you there's nothing wrong with you.

Liked by luckygirl

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@staceybeyer

I have been diagnosed with chiari malformation and I have been having bad headaches for over a year now 24/7. I also have blurred vision that the doctors are not sure why.i am on my 3rd set of botox treatment and it hasnt done nothing. I am nit sure if it is the malformation causing my problems and the doctor is no help with that. Anyone having or has had the same problems? Needing a little advise about this. I cant keep having migraines every day.

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Hi @mfann, welcome to Connect. My apologies for the delayed response. Somehow your message slipped by.

I can't imagine the stress and frustration while trying to find answers to your son's medical issues. I personally don't have experience with Chiari, but hope that you will find support and helpful suggestions from this group. The symptoms you mentioned don't appear to be typical symptoms of Chiari malformation according to NORD https://rarediseases.org/rare-diseases/chiari-malformations/ Might the symptoms be related to his heart condition or other medical issue?

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