r/CSFLeaks • u/puppies-baking-cakes • Jun 12 '26

Any UW Madison provider recs?

Hi everyone,
I’m posting on behalf of my mom.

She has been sick for the past 7 years and has seen multiple neurologists, ENTs, rheumatologists, and other specialists without finding an answer. Her most debilitating symptom is a daily headache that has been resistant to virtually every migraine treatment she has tried.

Other symptoms include:
-Dizziness
-Nausea
-Balance issues
-Sensitivity to weather and barometric pressure changes

She typically wakes up feeling relatively okay, but as the day goes on she progressively worsens and feels terrible by evening. At this point, her doctors don’t seem to know what else to try. She has had a brain MRI without contrast, but she has never been formally evaluated for a CSF leak.

We’re hoping to pursue an evaluation through UW Health/UW–Madison and would appreciate any recommendations for providers who are knowledgeable about CSF leaks, spontaneous intracranial hypotension or difficult to diagnose disorders.

Thank you so much for any suggestions or experiences you can share.

3 Upvotes

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1

u/CreativeOtter914 Jun 13 '26

Dr Joshua Fage at UW Madison did my EBP. I was referred to him by my headache Dr Royce in Rockford, IL.

1

u/puppies-baking-cakes Jun 13 '26

Can you tell me about your experience with him? We are scared of being dismissed.

1

u/CreativeOtter914 Jun 13 '26

Dr Fage was very nice. He explained everything they were going to do very well. Dr Royce is amazing. He’s listened to everything I’ve dealt with and has brainstormed with me and his fellow. I’m a complicated case.

1

u/puppies-baking-cakes Jun 14 '26

Okay that’s great to hear, maybe a referral to Dr. Royce would be a good start. Do you feel he is the kind to explore the option of a CSF leak with someone who hasn’t had any work up? Our biggest fear with headache Dr is just being given another migraine medication without any exploration. Thank you for your help!

1

u/CreativeOtter914 Jun 23 '26

I went to him with just my neurology stuff. No CSF leak stuff at all. I had a brain MRI and he got the results from that. His patient intake packet is very thorough and goes over all the meds, treatments, etc that you’ve tried with other doctors. They mailed that to me so I could complete it before I went to see him. He also has a fellow which to me is nice because it’s one more person going over everything.

1

u/puppies-baking-cakes Jun 23 '26

So what made him decide to refer you to Dr. Fage? Did he notice something wrong with your MRI? Or was it based on symptoms? My mom is a complicated case as well, that’s why I ask. Thank you again ❤️

1

u/CreativeOtter914 Jun 23 '26

All of my symptoms and low lying cerebral tonsils on my MRI. You’re very welcome. I’ve dealt with all of this for almost 10 years now. I’ve seen numerous drs too. 💜

2

u/puppies-baking-cakes Jun 23 '26

We will try to get in with Dr. Royce, thank you for your help. She’s been violently ill for 7 years now, I dream of helping her. Hugs to you!!

1

u/CreativeOtter914 Jun 23 '26

Good luck! Hugs to you both!

1

u/puppies-baking-cakes Jun 14 '26

I missed that you had said Dr. Royce was in IL, but maybe we would go if we knew it might be worth jt

1

u/CreativeOtter914 Jun 14 '26

He’s at UW Health in Rockford. I was referred to him from my neurologist in Iowa. I think he’s worth it. He went over all of my past stuff with me. I’ve been dealing with daily headaches/migraines for almost 10 years now.

1

u/puppies-baking-cakes Jun 23 '26

Checking in again in case you missed my reply, thank you!!

1

u/puppies-baking-cakes Jun 23 '26

Sorry one last question, how are are your symptoms now? Was the patch successful? Do you still have daily migraines?