Chiari Malformation Type 1 and getting a second opinion

Welcome @sheliamadewell1. I moved your message to the Brain & Nervous System group (https://connect.mayoclinic.org/group/brain-and-nerve-diseases/) so that you can more easily connect with othe rmembers who have experience with Chiari Malformation Type 1 like @nancy82415 @trouse @resawaller @duke77 @razzle50 and others.

I can see you are very worried for your daughter and to help her find answers so she can resume life, college and be successful. She has so much going on both mentally and physically that I can imagine it breaks your heart and causes you to throw your hands up in despair at the same time.

I think seeking a second opinion at Mayo Clinic would be worth a try. You can submit a referral for her or ask her phsyician to submit a referral. Everything is explained how on this webpage http://mayocl.in/1mtmR63
@nancy82415 can tell you more about her experience at Mayo.

Sheila, does your daughter have the support of a psychotherapist or mental health counsellor to help her with all she deals with? Do you?

She has been seeing a psychiatrist for years. She had a good trusting relationship with one, who moved. Now she has been trying to find another one she fills comfortable with. Not an easy task, but we continue to look.

@sheliamadewell1 Hello Shelia, I am a Mayo spine surgery patient. I wanted to comment about your daughter's consult with the neurosurgeon from your quote:
"Over the last year and a half she has been getting more frequent migraines accompanied by neck, back and jaw pain and the medicine does not help, lead to two hospitals visits in two weeks. She has been given new medication “amitriptyline 25mg” but has only taking the edge off. She followed up with Neurosurgeon and he does not believe she is a good candidate for the decompression because he believes her symptoms may continue after recovery. "

I had a similar experience consulting a prominent non-Mayo neurosurgeon when I had symptoms that he could not explain, so he declined to do decompression surgery for my spinal cord because he didn't know if it would make me better or worse. Even though my imaging clearly showed spinal cord compression, he was suggesting an inflammatory problem like MS and was missing the diagnosis of the cause of the pain because my pain symptoms were unusual. If they don't understand why a patient has pain, they shouldn't operate because that would be guessing. I found medical literature with cases like mine and I sent that to a surgeon at Mayo with my request to be seen, and that is how I became a Mayo patient.

Surgeons worry about protecting their reputations, and they are graded by insurance companies, and have published statistics about their success rate on various procedures. They don't want to fail. No one wants that, but when a doctor fails, it goes on their record, so they are more likely to pass on something that isn't clear cut. It's much easier to select patients with simple problems. This surgeon who previously declined to help me stated to other surgeons in an online video from a conference that he advises them not to select patients with mental illness because they will never be happy with the results of anything you do for them.

Also, what I understand from your quote is that there may be some physical reasons for the migraines. If you have neck, jaw and back pain, that can happen from misalignment of the jaw and how the skull sits atop the spine. I experienced a lot of cervicogenic headaches and debilitating muscular headaches on the back of my head. My jaw was too tight on one side and it caused me to wear out dental fillings on that side of my jaw from grinding my teeth. This happened because of muscle spasms in my neck that caused vertebrae to twist and rotate independently or tilt. My C5/C6 disc was collapsed about 50% pushing into my spinal cord and that caused bone spurs to grow there too. I had a great physical therapist who could gently realign my spine and she was blocking pain signals with a Dolphin Neurostimulator that interrupts the transmission of the neurotransmitters that are sending those signals. That helped for about a week, and was repeated often while I waited for spine surgery.

I agree with Colleen that seeking another opinion at Mayo would be worth trying. I have to wonder how much the compression from the Chari malformation could be contributing to the anxiety. As a young person, I had lots of anxiety about medical issues and at that time, I wasn't able to figure out the connections to the anxiety like I can now. I know what I lived with when my spinal cord was compressed, and I did have lots of anxiety about it and panic attacks for 4 months. That was during the period of time after another surgeon told me I had substantial spinal cord compression requiring surgery. That confirmed what I feared, and I had to find a way to process that fear and go forward advocating for myself. This surgeon also declined to help me when I started having trouble walking, dizziness and vertigo, and then he told me to go fix that first and then I could come back for surgery. The vertigo happened when C1 & C2 were getting rotated and that caused altered blood flow to the brain because of the vertebral artery that runs through the upper vertebrae and it gets stretched when a vertebra is twisted. 5 surgeons turned me down before I came to Mayo.

You have a lot to deal with here with your daughter. I hope you can find compassionate doctors who can help. A good manual physical therapist may be able to help a bit too with muscular issues. My PT is an expert in myofascial release therapy that releases fascial tension that we hold in our bodies. With anxiety, that tension probably increases a lot, and that is where MFR may be helpful as a non surgical therapy. It can't change Chari compression, but it can release the muscular tension in the neck, jaw and back, and it has helped me a lot.
Here is our MFR discussion. There is a provider search at http://mfrtherapists.com/

Myofascial Release Therapy (MFR) for treating compression and pain: https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

Have you considered physical therapy to address the physical muscle symptoms?

@sheliamadewell1 sorry to hear what your daughter is going thru. Personally I think it would be a good idea to get a second opinion at Mayo. There maybe more things going on than just Chiari Malformation. Mayo would be able to see if there are underlying issues.

Was a full spine MRI performed on your daughter to rule out in spinal issues such as Syringomyelia? Could the neurosurgeon determine what caused the malformation?

When I came to Mayo I was looking for a reason why I was losing the use of my thumb. I had no headaches or any neurological symptoms except when I sneezed it felt like my head would explode. So image my surprise when I was told I had Chiari Malformation and Syringomyelia. Since I come from a large family and no one else has it, it was thought that the surgery I had for saggital craniosynotosis could be the cause.

I am a patient at the Rochester MN campus. The neurologists and neurosurgeons are absolutely the best! My experience there has been nothing short of phenomenal!

Have you been diagnosed with Arnold Chiari Malformation 1? What are your symptoms? For how long have you had these symptoms? How old were you when you were diagnosed? Have you had decompression surgery? If so how has your symptoms changed? How long ago did you have the surgery?

Hello @mcgh1 and welcome to Mayo Clinic Connect. I see you are looking to connect with others who have experience with Chiari Malformation 1, so you will notice I have moved your post into an existing discussion on the same topic which you can find here:
- Chiari Malformation Type 1 and getting a second opinion: https://connect.mayoclinic.org/discussion/chiari-malformation-type-1-2/

Have you been diagnosed? Are you comfortable sharing a bit about your experience so that members like @nancy82415 and @jenniferhunter may meet you where you are at in your journey?

@mcgh1 I was diagnosed with a Chiari Malformation which is the same as Arnold Chiari Malformation 1. I was diagnosed back in 2015 at the age of 50. My herniation was 17mm with the syrinx at 11mm from my foramen magnum to my T6 vertebrae. Was diagnosed officially on August 24, 2015 and had decompression surgery September 22, 2015.

My symptoms did not appear until 2010. They were numbness and tingling in my right hand. At that time I was diagnosed with severe ulnar neuropathy, carpal tunnel syndrome and trigger finger in two fingers. Surgery was done, then 1 yr later surgery was done again to remove scar tissue. Then 1 yr later I was rear ended at a stop light. Numbness and tingling came back quickly. Elbow surgery was done to decompress the nerve causing the numbness and tingling. So I had three surgeries within 21 months.

Three years after the last surgery I was released from seeing the orthopedic hand surgeon. But one year later I started losing the use of my thumb. So it was back to the orthopedic hand surgeon. He suspected something systemic was going on.

I also noticed that I would lose my balance when squatting, felt unsafe climbing a ladder, after doing outside when bending over felt weakness in my body, when sneezing it felt like my head would explode and extreme fatigue. I just figured this was all from getting older and trying to do everything. Now I know what they were caused by. Makes total sense now.

Started the journey to find the cause. Unfortunately the journey was not easy and was heartbreaking at times. But my journey took me to Mayo Clinic!! I was diagnosed, had surgery and continue to be seen annually for monitoring there. I thank GOD each and everyday for my team of doctors.

After having surgery all my symptoms went away. I felt light headed after surgery in the best possible way. I never realized I was living with so much pressure inside my head. I still fatigue after doing physical labor and I do have permanent nerve damage in my right hand. But I have adapted and pace myself when doing physical work.

I have attached my MRI that shows the herniation and syrinx before surgery. I still can’t believe I was so close to losing use of all my extremities and being confined to a wheelchair.

Thanks for your reply.

My son is 27 and we found it at 6. All his life his symptoms were only random vomiting and headaches or Migraines. Well this year he hit 27 and it’s knocked him down. He’s having so many issues and comorbidities. He’s so sick right not one specialist can decipher his abnormal blood work/ I thinks it’s an autoimmune we need to identify and he’ll feel a bit better. When he was small they also has him on elavil . Well he’s graduated to imitrex now! But we’ve been lucky and although he has a 7mm deviation we’ve kept him from surgery. No csf leaks so far or pressure. But he’s 27 and his muscles are wasting Bc he’s exercise intolerant according to his physical therapist. He lost 20lbs November and I spent December feeding him all day. Glad your daughter did good with the surgery