CRPS and Arnold Chiari Malformation I

I still want to attempt to connect to others, even though no one responded to my first post so here we go!

I wanted to share an update because my symptoms have continued to progress, but I still don't have a clear diagnosis.

My symptoms started around October 2025 with numbness and pain in both hands and wrists. Since then, they've progressed into my arms and shoulders. I now deal with burning/shooting pain, numbness and tingling, heaviness, weakness, shaky/twitchy hands, limited movement, and changes in temperature and skin color. Cold, touch, activity, and certain positions can make everything significantly worse.

I was initially diagnosed with CRPS, but that diagnosis has since been questioned, since there was no onset of injury. Since then, thoracic outlet syndrome has been ruled out.

My EMG showed bilateral carpal tunnel, but no radiculopathy or generalized neuropathy. I've done extensive OT with little improvement, and trigger-point and cortisone injections didn't help. Vascular testing also didn't find an arterial cause.

My newest MRI showed positional compression of the brachial plexus and narrowing of the subclavian vessels, worse on the right when my arms are positioned overhead. My vascular surgeon is still not convinced this is TOS.

I'm also being evaluated for a 6 mm Chiari I malformation and have developed more frequent headaches and symptoms, including headaches triggered by coughing, laughing, and breathing. I'm scheduled for further CSF-flow imaging.

And most recently, I had an episode where my blood pressure dropped to 71/58, causing significant dizziness and near-fainting, although I didn't lose consciousness. It improved after lying down, but I still felt off afterward.

I've seen neurology, rheumatology, pain management, vascular surgery, hand specialists, and so many others. I'm now pursuing further evaluation at Cleveland Clinic.

At this point, I'm really just hoping to find some answers and a treatment that will help me get back to functioning normally.

I am really looking for a local support group, although I am not confident I will find one in my area of Illinois. I am looking for humans to connect with.

I still want to attempt to connect to others, even though no one responded to my first post so here we go!

I wanted to share an update because my symptoms have continued to progress, but I still don't have a clear diagnosis.

My symptoms started around October 2025 with numbness and pain in both hands and wrists. Since then, they've progressed into my arms and shoulders. I now deal with burning/shooting pain, numbness and tingling, heaviness, weakness, shaky/twitchy hands, limited movement, and changes in temperature and skin color. Cold, touch, activity, and certain positions can make everything significantly worse.

I was initially diagnosed with CRPS, but that diagnosis has since been questioned, since there was no onset of injury. Since then, thoracic outlet syndrome has been ruled out.

My EMG showed bilateral carpal tunnel, but no radiculopathy or generalized neuropathy. I've done extensive OT with little improvement, and trigger-point and cortisone injections didn't help. Vascular testing also didn't find an arterial cause.

My newest MRI showed positional compression of the brachial plexus and narrowing of the subclavian vessels, worse on the right when my arms are positioned overhead. My vascular surgeon is still not convinced this is TOS.

I'm also being evaluated for a 6 mm Chiari I malformation and have developed more frequent headaches and symptoms, including headaches triggered by coughing, laughing, and breathing. I'm scheduled for further CSF-flow imaging.

And most recently, I had an episode where my blood pressure dropped to 71/58, causing significant dizziness and near-fainting, although I didn't lose consciousness. It improved after lying down, but I still felt off afterward.

I've seen neurology, rheumatology, pain management, vascular surgery, hand specialists, and so many others. I'm now pursuing further evaluation at Cleveland Clinic.

At this point, I'm really just hoping to find some answers and a treatment that will help me get back to functioning normally.

I am really looking for a local support group, although I am not confident I will find one in my area of Illinois. I am looking for humans to connect with.

Hello @ilamanda, Welcome to Connect. I'm sorry your discussion went without a response for so long. I did see a post by an active member, @nancy82415, in another discussion that mentions Arnold Chiari Malformation 1 and she may have some information or experience to share with you. Here is her post in the other discussion - https://connect.mayoclinic.org/comment/788399/.

I thought I would share a few organizations that might be helpful for learning more about the condition in case you haven't seen them.
-- American Syringomyelia and Chiari Alliance Project: https://asap.org/
-- Chiari Malformation Resources: https://neurosurgery.weillcornell.org/condition/chiari-malformation/chiari-malformation-resources
-- Conquer Chiari: https://conquerchiari.org/index.asp
-- Chiari malformation care at Mayo Clinic: https://www.mayoclinic.org/diseases-conditions/chiari-malformation/care-at-mayo-clinic/mac-20354017

There are quite a few discussions and member posts on CRPS that might be helpful. Here's a search with links to the discussions and posts - https://connect.mayoclinic.org/search/.

Hi,

The hardest case to treat is one with too long a list of possibilities and already diagnosed ones. Either that, or a simple one liner in a medical memo which suggests specialists have no inkling what’s going on.

Anything neurological is going to be tricky, more so when other parts of your body also have conditions which make a case trickier and finding what’s going on can take decades.

While many forum members love to help, we have to leave the medical advising to the professionals and sharing of personal experience which was what you did. Thus, thank you and unfortunately my experience is different from yours.

Take care,
Louis

@ilamanda @ilamanda it’s all going to work out, just trust the process ✨🙏✨

@ilamanda I noticed you mentioned a cervical MRI, but was wondering if a full spine MRI was done. Anytime Chiari Malformation is diagnosed is a full spine should be done as a malformation can cause a syrinx (Syringomyelia) to form inside the spinal cord which can cause another set of symptoms.

It is good you are following up with a neurosurgeon. They will be most helpful. I was very blessed that I was diagnosed at Mayo Clinic, so my neurologist, neurosurgeon and orthopedic doctors were all under the same roof.

Right now I would recommend starting a journal noting daily your activities, food eaten and how you are feeling each day. Note any questions you may have. I started doing this since I was diagnosed with Chiari Malformation, Syringomyelia, moderate spinal stenosis in the lumbar, 2 bulging disc in lumbar, 1 bulging disc in the neck and arthritis in the spine. It helps me to see if I overdid physical activity or if it was maybe something I ate. I then adjust whatever I need to help if feeling better. This journal also helps when I have my annual checkups with my neurologist and orthopedic drs.

Try to be patient with yourself, remain positive and keep looking for answers. It will not be easy. Unfortunately it will be a journey. I know you can’t be positive all the time, but when you have those times of self pity, which we all go thru, take the time, but don’t stay there. I believe it helps as it made me more determined to find answers.

Anger will happen at times due to frustration. Try to not take it out on others, but if you do and recognize that you did, apologize to the person. They probably were just at the wrong place at the wrong time.

Wishing you all the best in finding answers. Feel free to reach out to me if you have any questions. Hopefully I can help, but if I can’t maybe I help with suggestions of where to ask or look for answers. Even if you just need a cheerleader. I am here.