Why we don't stop, even when our body keeps on giving!

I found this priceless forum 5 years ago and it has done nothing but give hope and encouragement even since! In this light, I have decided to share the many layers of my journey, not to provoke angst, but to the contrary, to instill fortitude if this surgery is not a home run one and done. It all started as a ME/CFS diagnosis I refused to settle with, the rest may be best conveyed as a list:

Cranial CSF leak repairs x8 (2 bifrontal craniotomies and 6 endoscopic threaded inbetween the following…)
Bilateral styloidectomy
Right IJV balloon venoplasty
LP shunt, failure with resulting L23 laminectomy and open dural repair (traveled)
Co-C2 instability and fusion (traveled)

I continue to battle ongoing cranial CSF leaks (and a list of symptoms too long to post), my pursuit continues … and has uncovered more buried treasures (that’s how I prefer to look at them but my husband uses other terms):

Aberrant right subclavian artery (ARSA) passing behind my esophagus playing into my dysphasia (1% of the population)
T5 ventral (anterior) cyst or neuroma, not sure yet (found on old imaging from 2 years ago but not mentioned, and is now larger) sandwiched between my aorta and the vertebral body.

My point is don’t stop looking and advocating for yourself. There are reasons we are not well and there are answers, it just takes a hell of a lot of breathing, one at a time when necessary. My surgeons refuse to give up on me however, they do give me a now well know sideways look which speaks “really??” I just smile and say, “hey, God made me this way and gave me to you that you may learn how to better care for others.”

Not looking for a pity party here. I have been given loads of gems because of this and have made new life long friends. I am grateful, a bit tired, but grateful nonetheless. I can say with confidence I’m 50% physically better than when I started all of this 8+ years ago. I’LL GLADLY TAKE IT!

I offer you solidarity, hope and endless encouragement. We carry on one breath at a time :blue_heart:


"… that you may learn how to better care for others.” This keeps me going, especially for my daughter, in case there is familial risk.

Thank you for persevering and glad you are better.


@JustBreathe being 50% better is certainly worth celebrating and I so appreciate your positive viewpoint; however, I also wish/hope you find more solutions to the ongoing problems. Seems you’ve walked through many more hurdles than one should have to.

Thank you for the coaching. I would be nowhere without this fantastic group of people including you. Such a breath (literally) of fresh air. I too have found gifts along this journey (which, I must say are easier to see with Gabapentin) ))… But of the many things I am grateful for, one is that we live in a time when we can get help. Reading history during my down time is a good balance for me.

Thank you!!


I love your attitude, especially that you can say God made you this way so that you can teach the docs! You’re amazing & you’ve been such a wonderful support & font of knowledge on here, I think you’ve given back more than you’ve received. Hugs to you, praying for you & keep fighting for better health :pray: :hugs:


@JustBreathe - You never cease to be an inspiration to me.The knowledge you’ve shared & your constant positive attitude in spite of HUGE health challenges has been a refreshing gift for so many on our forum.

I’m so sorry your struggles aren’t over yet, but you make a good point, how else will doctors learn to manage & cure difficult cases if none are presented to them!

I pray for you often & hope with all my heart that wellness is in your future. Keep taking those breaths, one after the other. :hugs: :heart: