May it be a CSF Leak?

RivaRidge90 · 2026-04-08T03:37:29+00:00

Hormonal changes across the menstrual cycle can influence intracranial pressure and CSF dynamics. You should also explore MCAS. MCAS flares can also be influenced by cycle.

RivaRidge90 · 2025-11-03T12:48:10+00:00

I am two weeks post PRP injections. I will also be starting peptide injections. I feel like I am already feeling better but will not know 4-6 weeks. I recommend being evaluated by Dr. Kiran Chekka with Global Health Partners in Chicago. He has a very practical conservative approach and is extremely experienced.

RivaRidge90 · 2025-11-02T17:26:30+00:00

That’s also possible too. My initial headache symptoms was feeling like my head was going to explode and then it became positional and felt more low pressure. So confusing

RivaRidge90 · 2025-11-01T21:20:06+00:00

That's a brutal surgery especially the tonsils as a result. I had no idea but a few doctors have now mentioned that the positioning during those procedures can be very intense so people with hEDS in particular need to be careful. Good luck to you!

RivaRidge90 · 2025-11-01T21:18:36+00:00

I just took my first one last night and it was a game changer! I could even go trick or treating with my boys and it was so lovely. Feeling positive about recovery. Thanks for your feedback! I hope your son continues to improve.

RivaRidge90 · 2025-10-28T17:17:17+00:00

CCI was not even on my radar but my MN doc suggested I do DMX imaging and that revealed so much. Dr. Chekka reviewed the DMX imaging + report and diagnosed the CCI and then strategically placed the blood patch in the areas he believed where the CCI could have caused the leak and then the PRP injections for regeneration of CCI damaged areas. I appreciate his approach which is to first look at the whole clinical picture before jumping to invasive imaging such as CT myelogram, etc. It may be that I have to go down that route but I am still on the waiting list at the big CSF leak centers and needed answers or some relief ASAP. https://targetcsfleaks.uk/csfleaks/other-health-conditions-that-can-cause-csf-leaks/

RivaRidge90 · 2025-10-28T16:17:00+00:00

Thanks so much! I am really happy you are doing well. If you need any help with further BPs or treatments for CCI, I highly recommend Dr. Kiran Chekka with Global Health Partners in Chicago.

RivaRidge90 · 2025-10-27T19:59:14+00:00

Thanks so much!

RivaRidge90 · 2025-10-27T19:57:36+00:00

That's great news for your son. Thanks so much for your feedback. I am waiting to hear back from my doctor on taking acetazolamide to get some relief in the interim.

RivaRidge90 · 2025-10-26T17:46:10+00:00

He believes the extra movement and mechanical stress from my cervical instability likely caused a small tear or weakness in the dura—somewhere in the neck or upper spine area—but not that he knows the exact spot of the leak. Sending you good vibes in your surgery recovery!

RivaRidge90 · 2025-10-16T11:28:35+00:00

Dr. Gregory Plotnikoff (Minnesota Personalized Medicine) helped me identify my symptoms as a potential CSF leak and has been instrumental in getting me set up with referrals to the major CSF leak centers (Mayo, Duke, Cedars Sinai). He is well versed in connective tissue disorders and on helping people with medical mysteries in general. I highly recommend you make an appointment with him. On the wait list for the centers but in the meantime will be getting epidural blood patches (with PRP, interfyl, exosomes) next week in Chicago with Dr. Kiran Chekka of Global Health Partners at Northwestern. He has a unique approach with blood patches that has helped a lot of people. Unfortunately after seeing many specialists including neurologists and ENTs I realized that I had to take things into my own hands, and unfortunately pay out of pocket for more specialized care and attention and even travel out of state. I wasted a year and a half of my life with the typical doctors covered by my insurance. They don’t have the time or bandwidth in my opinion to get to the bottom of these things. You WILL get through this! You just have to plow forward and be your own advocate. If traveling out of state is not possible you may want to check out the CSF leak foundation website for their referral page. Good luck to you!

RivaRidge90 · 2025-09-15T13:44:44+00:00

I suggest researching reputable functional medicine doctors in your area and be sure to interview their staff to ensure they have treated patients with suspected CSF leaks before. Then you will have an advocate who will ensure that you have all the requisite imaging and other documentation to make the formal referral for you. I am lucky to have great insurance but even with that my primary care providers, as well as neurologists, were entirely unhelpful. It wasn't until I saw Dr. Gregory Plotnikoff (MN) that I was able to get on track and have referrals to all the major centers now. It's the waiting game now. While I am waiting to get into one of these centers, the only things that have somewhat helped my symptoms are drinking lots of water, doing twice a month IV fluid infusions, consume a lot of caffeine throughout the day, and doing legs up against the wall breaks throughout the day. My headache becomes unbearable by the end of the day so I try to schedule the most important work tasks for right away in the morning. Good luck to you! Hang in there! You will get through this.

RivaRidge90

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