My Zebra Medical Journey: March 2011

Sunday, March 20, 2011

True Warriors

This post is dedicated to some true warriors who exude strength and love...

As many of you know the creator of HipChicksUnite, Krystal Clausen, her boyfriend Joe and son, Dylan, have been going through some incredibly difficult times. Dylan was born on March 11th, 2011 and had his first heart surgery on March 15th, 2011. He was born with Hypoplastic Left Heart Syndrome and has been such a warrior, just like his parents.

I originally got to know Krystal through dealing with hip dysplasia and all that it involves. As a way to share information, promote support for others and raise awareness Krystal created HipChicksUnite. She led the way for awareness and creating a network for hippies with little information and support. It has now grown to over 600+ members from around the world!

I met Krystal, in person, August 2010 during Hippie Union. Dylan was just a tiny little peanut at the time! There was about 10 girls who came to share their experiences and stories, as well as information about our unique circumstances. Krystal was planning on her surgery until she found out she was preggos with lil Dylan. She was post-poning her PAO surgeries until after the birth of her little peanut. She still kept up with the site and supporting all of us. At 22 weeks, Krystal and Joe found out that Dylan had a congenital heart defect called Hypoplastic Left Heart Syndrome in which the heart anatomy is not correctly formed (simple version). Even though Krystal and her family were digesting the news and how it would affect Dylan's health, she still opened her heart to us by telling her story and documenting the highs and lows of her heart journey. Joe was there for her every step of the way, supporting and loving her and their lil peanut.

Krystal and Joe have been going through something that most people will never experience. I can not imagine what they are going through, but I know that they will be doing everything they can for Dylan. Krystal has been so strong and you can see that she has passed it along to Dylan because he is such a little fighter. I am so proud to say that I know such an amazing woman and hope and pray that Dylan gets stronger every day!

There are so many people that are thinking of this warrior family and praying, hoping and supporting them through this journey. Family and friends are those that are able to support you and be your strength when you don't feel strong and I know there is so much love surrounding Krystal, Joe and Dylan! They are TRUE WARRIORS!!!

Dylan - A Heart Warrior

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My Medical Team

Dr. Wyatt Horsley - Internist (IU Health)

Dr. Joshua Wellington - Physical Medicine/Rehab. & Pain Management Specialist (IU Health)

Dr. Alexia Torke - Palliative Care (IU Health)

Dr. Ravi Misra - Infectious Disease (IU Health)

Dr. Robert Nelson - Immunologst (IU Health)

Dr. Makram Hajj - Cardiologist (IU Health)

Dr. Michael Millis - Hip Preservation Surgeon (Children's Hospital of Boston)

Dr. Presley Swann - Hip Preservation Surgeon (Methodist Sports Medicine)

Dr. Joel Wells - Hip Preservation Surgeon (UTSW)

Dr. Brian Dierckman - Hip Preservation & Shoulder Surgeon (Elite Sports Medicine)

Dr. Todd Bertrand - Hip Surgeon (Franciscan)

Dr. Michael DiDonna - Hand Surgeon (IU Health)

Dr. Matt Horn - Chiropractor (Premier Family Chiropractic)

Noah Campbell - PT (Team Rehabilitation)

Surgeries

1. Lt. knee Lateral Release (May 2003)

2. Bilateral periosteal stripping, deep & superficial compartment releases (Porter - 26 Dec. 2006)

3. Bilateral anterior & lateral compartment releases, superficial peroneal nerve release (Porter- 18 Dec. 2007)

4. Rt. hip PAO, arthroscopy, labral debridement & ligament repair (Scheid & Maiers - 8 June 2009)

5. Lt. hip arthroscopy, iliopsoas release & labral debridement

(Maiers - 11 Feb. 2010)

6. Rt. hip arthroscopy, femoral osteochondroplasty, ilipsoas release & labral repair (Maiers- 10 Aug. 2010)

7. Rt. hip hardware removal, scar revision (Millis- 11 Jan. 2011)

8. Rt. varus femoral rotational osteotomy (Millis - 20 June 2011)

9. Rt. trochanteric transfer osteotomy and femoral blade-plate removal (Millis - 6 April 2012)

10. Lt. shoulder arthroscopy, capsulorraphy (5+ sutures), closed rotator interval, repairs (Dierckman - 17 Jan 2013)

11. Rt. trochanter/femoral hardware removal & debridement (Dierckman - 2 July 2013)

12. Rt. hip/femur infection IND (Dierckman - 14 July 2013)

13. Lt. hip arthroscopy w/anterior & posterior labral repairs, CAM & Pincer Resection, endocscopic IT band release, open capsulorraphy (Dierckman - 26 Nov 2013)

14. Lt. hip superficial infection IND (Dierckman - 21 Dec 2013)

15. Rt. shoulder arthroscopy, labral repair & capsulorraphy (~4-5 sutures), repairs (Dierckman - 31 Dec 2013)

16. Rt. hip arthroscopy, labral repair, Pincer resection, femoroplasty, capsulorraphy, gluteus medius repair, open femoral trochanteric revision (Domb - 8 Aug 2014)

17. Spinal Cord Neurostimulator Implant (Wellington - 21 Oct 2014)

18. Rt. shoulder arthoscopy, capsulorraphy (6+ anchors), labral repair (Dierckman - 20 Nov 2014)

19. Spinal Cord Neurostimulator pocket revision (Wellington - 20 Jan 2015)

20. Emergency Surgery for Spinal Cord Explant for Infection IND (Wellington - 21 Jan 2015)

21. Spinal Cord Neurostimulator Re-Implant (Wellington - 4 March 2015)

22. Lt. shoulder arthroscopy, capsulorraphy, labral repair (Badman - 29 Sept. 2015)

23. Lt. hip open surgical dislocation, labral reconstruction w/allograft, femoral osteochondroplasty, acetabuloplasty & LPAO (Swann - 8 Dec. 2015)

24. Lt. hip wound closure IND (Swann - 4 Jan. 2016)

25. Venous Access port (TIVAD) placement (Halum - 26 April 2016)

26. Rt. Total Hip Total Arthroplasty (Swann - 22 Nov. 2016)

27. Rt. Hip post-THA infection IND (Swann - 13 Jan. 2017)

28. Venous Access port explant (Halum - 18 April 2017)

29. Rt. THA Explant Spacer placement for infection (Swann - 21 April 2017)

30. Rt. THA Spacer explant, femoral osteotomy (Ongwijitwat- 29 June 2017)

31. Rt. Hip, Femur surgical bone biopsy & hip aspiration (Ongwijitwat - 25 April 2018)

32. Lt. Hip Hardware removal (Ongwijitwat - 29 May 2018)

33. Rt. Carpal tunnel release & De Quervain’s release (DiDonna - (5 Feb 2019)

34. Lt. Carpal tunnel release & De Quervain’s release (DiDonna - 28 March 2019)

35. Rt. Hip hardware removal & abx spacer implant (Swann - 26 Aug 2019)

36. Rt. Hip spacer explant, IND, bone resection (Swann - 14 Oct 2019)

37. Rt. Hip IND, bone resection - emergency (Bertrand - 25 March 2020)

38. Venous Access port (TIVAD) placement (Halum - 20 May 2020)

39. Venous Access port explant (Pyko - 28 May 2020)

40. Rt Hip IND, bone resection, complex closure (Wells - 12 June 2020)

41. Lt Hip endoscopic IT Band release, bursectomy (Dierckman - 3 March 2021)

42. Lt. Hip PAO hardware removal (Bertrand - 4 Nov. 2021)

EDS, Hip Dysplasia and Other Basics...

EDS: Ehlers Danlos Syndrome (EDS) is a group of inherited connective tissue disorders. There are 6 subtypes. I have Classical - Type 1. Classical EDS affects 2 to 5 in 100,000. Connective tissues are made up of proteins that support skin, bones, blood vessels, and other organs. They make up about 80% of the human body. Classical EDS patients have significant skin involvement, abnormal and poor wound healing, abnormal scarring, wounds and skin that tear open and the skin is soft and velvety to the touch. Patients can also present with an unusually large range of joint movement. The loose joints are unstable and prone to dislocation, chronic pain, and early-onset arthritis. There is no cure and treatment plans are individualized.

There are secondary conditions that are caused by EDS like dysautonomia which effects the autonomic nervous system. In my case I have severe burning nerve pain and a harder ability to control my BP, etc. Raynaud's syndrome is another disorder that branches off EDS that makes you very sensitive to hot and cold temperatures and effects circulation.

Hip Dysplasia: is a congenital condition in which the ball and socket joint don't fit together the way they should. In my case, the socket is too shallow, which causes uneven pressure on the joint, a premature breakdown of cartilage and early osteoarthritis.

PAO Surgery: A periacetabular osteotomy is a surgery in which the hip socket or acetabulum is cut at 3 different spots, so that the acetabulum can be repositioned for better alighnment. By re-positioning the acetabulum you are able to reach the coverage that is needed. Once the acetabulum has been shifted to its new position titanium pins and screws will be used to fixate the fractures until they heal.

FO: A Femoral Derotational Osteotomy is a surgery in which the femur is cut through the bone or a wedge is cut out so that the femur can be rotated into the correctly aligned position. Then they will use either a blade-plate or a titanium rod and screws to fixate the femur in its new position until the fracture heals.

CRPS: Complex Regional Pain Syndrome CRPS is a chronic and progressive (nerve) pain disorder. CRPS is marked by intense burning or aching pain. Patients may also experience swelling, skin discoloration, altered temperature, abnormal sweating, and hypersensitivity in the affected area. The cause is unknown although most cases occur after trauma to the body (surgery, fractures, etc) and there is no cure. It can spread to other parts of the body. Treatment focuses on relieving the pain. There are 2 classifications for CRPS which are: CRPS Type-1 which was known as RSD or Reflex Sympathetic Dystrophy and CRPS Type-2 which was known as Causalgia or sympathetically mediated pain. Both Types have the same symptoms, but in Type-2 there is a known damaged nerve.

It is believed to be connected to EDS