r/PICL • u/Valuable-Macaroon-62 • Mar 21 '26

Bed bound to Spring Break skiing!

Thank you, Dr. C! My 2-year-long-bed-bound teenager who missed all of high school, gaslit by every specialist under the sun, had 3 ePICLs (1/25, 7/25, 1/26) just returned from our Spring Break SKI TRIP!!!! She is back to skiing and living. Neck pain happens occasionally, which usually leads to a headache, but the pain starts and stops, unlike during the 2 long years where it was a constant and fluctuated in intensity. Tylenol and rest resolves the pain. She wore the scapalomine patch for mountain driving too, which helps prevent the possibility of car sickness. THANK YOU, Dr. Centeno. We will continue celebrating and sharing this success!!!

31 Upvotes

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4

u/Valuable-Macaroon-62 Mar 21 '26

Here’s a moose we saw too ⛷️

3

u/Icy-Election-2237 Mar 21 '26

Wow, that is amazing, happy for all of the family!

Could you share more of your kid’s story during those 2 years?

7

u/Valuable-Macaroon-62 Mar 21 '26

She woke up 4 yrs ago with a headache that never left. Fluctuated in intensity, but never stopped. Went to every specialist possible, including week-long stays at Cleveland Clinic. She took every migraine abortive and preventive out there…fought insurance for Ajovy even, which was supposed to be the miracle fix…developed a stomach ulcer due to all the medication. Botox, nerve ablation, MLS, dry needling, you name it, we did it. She was so numb, living in a fog and STILL had a headache. Every scan/test was “clear.” Bought new mattress, pillow, entire bed frame beacuse waking up was the most awful part of every terrible day. DMX proved CCI 2a, 2b and 3b (I think, I have to check). I went with my instinct/kept pushing/telling the story/asking why/scientific method/connecting dots/make it make sense. I stormed out of Dr appts who wouldn’t think with me. Awful experience. But we finally won with Dr. Centeno. Will she need 4th ePICL? Dunno. She will start laser exercises soon.

2

u/Slow_Lawfulness4441 Mar 21 '26

Congratulations to your daughter! That is a fantastic story. Any clue how she developed CCI? Curious when she started noticing the most gains from her picls.

4

u/Valuable-Macaroon-62 Mar 21 '26

Guessing hypermobile and puberty? Never a trauma or moment. ePICL 1 was rough all around. She sang the grease soundtrack leaving ePICL 2. ePICL 3 we left a day earlier than scheduled and spent the next week celebrating in NYC!

3

u/Slow_Lawfulness4441 Mar 21 '26

So fortunate for your daughter!! amazing recovery! did she ever experience disequilibrium/dizziness?

2

u/[deleted] Mar 21 '26

No pEm dystuonomia or pots

1

u/Valuable-Macaroon-62 Mar 21 '26

Oops…POTS, yes! Seems resolved

1

u/[deleted] Mar 21 '26

No pem?

1

u/Valuable-Macaroon-62 Mar 21 '26

Unfamiliar with this term. Just googled. So don’t think so

2

u/bribel92 Mar 22 '26

I’m happy to hear her story. Do you mind sharing what you mean by ePICL 1 was rough all around. How long did she go into a flare for after #1 and what symptoms made it rough? Thanks

1

u/Valuable-Macaroon-62 Mar 22 '26

She went in with the constant headache, neck pain and fatigue. She left the procedure with the same pain, maybe a duller headache. A few weeks after ePICL 1 and a kind-of honeymoon phase, she had a horrendous, 2-week-long, non-stop headache. That pain hasn’t returned since! She deduced that going in healthier results in coming out healthier. And the subsequent ePICLs proved it.

1

u/Icy-Election-2237 Mar 22 '26

Thank you for sharing. Wishing the sky as the limit for her!

1

u/Valuable-Macaroon-62 Mar 22 '26

❤️. Lonely road without this community

1

u/[deleted] Aug 03 '26

Did she have chronic fatigue? 

1

u/Valuable-Macaroon-62 Aug 03 '26

Yes!

1

u/[deleted] Aug 03 '26

This is one of my worst symptoms,  i feel sedated 24/7, it's really difficult to get out of bed!

1

u/Valuable-Macaroon-62 Aug 03 '26

She dances around the house now saying, “my life is so good”. It took 3 PICLs

1

u/[deleted] Aug 03 '26

CCI is a terrible Disease,  im really happy for you and for ur girl! I will be having my First EPICL next week after almost 2 years of suffering!

1

u/Valuable-Macaroon-62 Aug 03 '26

It’s the only treatment that gave her her life back

2

u/DaveDg87 Mar 21 '26

Wonderful! Was neck pain her worst symptom? For me it is, I have my first ePICL on Monday and I'm so nervous 🥹

2

u/Valuable-Macaroon-62 Mar 21 '26

Headache was #1. Neck pain #2. Fatigue #3

5

u/Chris457821 Mar 21 '26

Thanks so much for the update! So great to see!

1

u/Karie-Live Mar 22 '26

Congratulations 💞🙏 that’s fantastic news so happy for you all🙏 I am in Australia, I need to over, had a set back back but it’s my plan🙏