Chiari Malformation type 1

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

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?

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.

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?

About 5/6 yrs ago (I think), I went to my eye Dr to have my eyes checked. He did the whole work up and said I had optic edema, he referred me to a neurologist. The neurologist scheduled a CT scan and a MRI. After getting the results he ordered a spinal tap. Your pressure in your head is suppose to be 8-20 with 20 being very high. My spinal taps have been anywhere from 34-48. I was diagnosed with Chiari Malformation Type 1 with my cerebellar tonsil at 10mm below the foramen magnum, a few small foci of increased T2 and FLAIR signal involving the anterior parietal subcortical white matter, and hydrocephalus. The neurologist put me on the highest amt of Potassium, furosemide and Topiramate that he could. I took that medication for 2yrs and nothing was changing.The neurologist sent me to another neurologist that was suppose to have dealt with Chiari and again the same thing. I quit taking all medications and seeing the Dr;s for a few yrs.They finally sent me to have an IR ANGIOGRAM-CEREBRAL-BILAT. The results of that was :
A large filling defect is identified at the
transverse-sigmoid sinus junction on the left. The pressure gradient
across this filling defect is 18 mm Hg. The left dural sinuses are
dominant. The right transverse and sigmoid sinuses are diffusely
small. There is however also a hemodynamically significant gradient
across the right transverse-sigmoid junction; this was also 18 mm Hg.
The cerebral arterial circulation appears unremarkable; no evidence of
aneurysm, stenosis or vascular malformation.
That Dr. called and consulted with a few other dr's and scheduled me to have a stint put in. My neurologist stopped that and sent me to a Neurosurgeon for a consult, in which he just said I didn't need surgery, I just needed to lose weight. (I was not happy)
After all that, I was upset and quit going to any of them until about 2 weeks ago. I came home from work and was headed to my basement and fell. I got up and went to bed, woke up with blurry vision. My daughters uncle in law (a DR) suggested with all my symptoms that I need to go to hospital and be checked out. So we went and they ordered a CT scan. It showed the Chiari (of course, but no hydrocephalus). They referred me to another Neurologist. So I went and was examined. He ordered another MRI and wants me to see another Ophthalmologist and another Neurosurgeon consult. Well I made the appt with the Ophthalmologist and called for a consult with the Neurosurgeon and was told that he would review the Dr. notes and MRI and call back to possibly schedule an appt. Well the receptionist called back and said that he recommended that I see the Ophthalmologist and take whatever medication the Neurologist prescribed and give them a call back. (Well the Neurologist hasn't prescribed any), because he is waiting for all test results to come back. I called the Neurologist and told him what was said to see the Ophthalmologist and try and get a consult with Neurosurgeon again, again I explained what they said, and he said the same thing over again. I sent a message to him again and asked if I should see the Dr. that originally scheduled to have a stint put in. He called and said no, don't schedule surgery until after we get all results back and then we can talk surgery. I have had nothing , but problems with the Dr;s around here. I am very seriously thinking of making the long trip to Mayo to deal with Dr;s that know about my condition. I will list my ongoing and worsening symptoms as well as the current MRI findings below:
FINDINGS: Multiplanar multisequential magnetic resonance imaging of
the brain was performed before and after intravenous gadolinium
contrast administration. 10 mL of intravenous Gadavist gadolinium
contrast was administered.
The cerebellar tonsils descend 14 mm below the foramen magnum,
consistent with a Chiari I malformation. There is no parenchymal
diffusion restriction to suggest an acute cerebral infarction. There
are several small foci of signal normality involving predominantly the
subcortical white matter of the frontal lobes, most consistent with
small vessel chronic ischemic changes.
No intracranial space occupying mass lesions are identified. There is
no evidence of acute intracranial bleed. No abnormal extra-axial fluid
collections are present.
Midline structures of the brain have a normal appearance. There is no
midline shift. There is no evidence of hydrocephalus. The sulcal
pattern is normal. There is no dural thickening. The visualized
paranasal sinuses and mastoid air cells demonstrate no significant
abnormalities.
Symptoms:
constant headache (sometimes worse than others), major vision changes (sometimes blurry or double vision), ringing in my left ear for the past 5/6yrs, memory loss that is getting worse, hearing loss, unsteady gait at times, falls, numbing and tingling in my hands and feet at times (more often recently), stuttering, sometimes swallowing issues, head feels heavy, neck hurts, pains in back and fatigue.

Sorry for the long post, but getting a little worked up and stressed (I know, not good) about all the new results, especially with the frontal lobe, chiari going from 10mm-14mm now and the small vessel chronic ischemic changes.

Any suggestions on what I should do? Should I stay here and keep messing with these Dr;s or just make the trip to Mayo? Will I most likely have to have the posterior fossa decompression surgery?

Please Help
Tracy

Hi Tracy @tracyeylens Welcome to Mayo Connect.
You'll notice that I moved your post to an existing discussion groups about Chiari Malformation Type 1. I did this so you can connect with others talking about this condition like @awesomesauce17 @david33 @jillweinandt @oh_suzie_q @luckygirl and others. Some have had surgery, while others have opted not to. See all their posts by clicking VIEW & REPLY in the email notification.

It sure sounds like you need a second opinion, Tracy. At Mayo Clinic, experts work together in multidisciplinary teams to help you navigate your healthcare journey, answer your questions and guide you through a coordinated treatment plan. Here's the contact information of our 3 campuses http://mayocl.in/1mtmR63
Naturally, you'd expect me to recommend Mayo Clinic. However, I invite others to make additional suggestions too.

You may also wish to watch this archived Video Q&A that includes some discussion about Chiari.
- #MayoClinicNeuroChat about Congenital Anomalies of Brain and Skull https://connect.mayoclinic.org/webinar/mayoclinicneurochat-about-congenital-anomalies-of-spine-brain-skull/

Is travel for medical care possible for you, Tracy?

Thank you for replying to my post.
I am on my 3rd Neurologist and 2nd Neurosurgeon here at home. I do not believe that they are very knowledgeable with Chiari. So I posted here to try and help my decision of to go elsewhere. Quite a few yrs back before my 2nd husband committed suicide, we had taken his mother to Mayo and loved the care she rec'd. After researching more, I am definitely leaning towards Mayo.
Travel is not going to be an issue. I have already looked into drive time, or flying and hotels. Just trying to get info to make a better decision.
I will definitely take a look at all the links you posted.
Thank you,
Tracy

At the risk of overwhelming you with links, Tracy, I have a few more tips. If you are considering Mayo Clinic, you may be interested in the group on Connect called "Visiting Mayo Clinic" https://connect.mayoclinic.org/group/traveling-to-mayo-clinic-minnesota/

Feel free to scroll through the discussions and join in with your questions. Here's one that you might find helpful
– Getting your first appointment https://connect.mayoclinic.org/discussion/getting-your-first-appointment/

I would also like to share the following resource:
Mayo Clinic in Rochester has Concierge Services to help make your trip go smoothly. They provide information about travel, lodging, Mayo Clinic and community resources to plan your visit. And it’s free.
Contact form: http://bit.ly/2nM3mr0
Hours: Monday-Friday, 8 a.m.-6 p.m. CST by phone, 8 a.m.-5 p.m. in person
Location: Mayo Building, Lobby level, International Center
Email: concierge@mayo.edu
Phone: 507-538-8438

Anyone else had this?. I’d love to know what medication others are on after decompression surgery and if anything’s worked and if your pain has lessened.

Hi @luckygirl. You may have noticed that I moved your post to this thread on Chiari malformation type 1. Click VIEW and REPLY in the email and you can look through past posts in this discussion.

I wanted to also tag users @oh_suzie_q @jillweinandt @david33 @giglgirlnm @ziva and @debim in hopes that they can provide some answers for your questions.

@luckygirl you said that you would like to know what medication others are on after decompression surgery. Did you recently have this surgery? If so, what medication are you on?