My Zebra Medical Journey: And The Date is Set!!!

Sunday, April 17, 2011

And The Date is Set!!!

The date of my 5th hip surgery has been officially set for Monday, 20 June 2011. I will be having a right intertrochanteric rotational osteotomy and Dr. Millis will be the performing the surgery at Children's Hospital of Boston. I will be having my pre-op appointments on Thurday, 16 June, with members of his team, Erin (PA) and Dr. Novais (Fellow). Then I will have a pre-admitting appointment to check blood-work, check vitals, speak with the anaesthesiologist, meet with my pain team. Since I have dysautonomia related to my nerves and their hypersensitivity, I will need extra care in managing pain and treatment. I will have 3 days in between my appointments and my surgery which I plan on spending touring Boston and SHOPPING!!!

My surgery is not a common one because femoral retroversion is not a common problem. Hip Dysplasia is about 1/1000, while retroversion or anteversion is 1/5000. I am also being tested for Ehlers-Danlos Syndrome which is a connective tissue disorder that can effect almost everything in your body. It seems highly likely that I have the classical type because of skin involvement and all the symptoms I have. I see the geneticist in 2 weeks so I will be able to get confirmation in regards to that issue. There is no cure for EDS, but having an official diagnosis will help with coordinating treatment plans to help manage the problems and give me the best possible outcome from surgery.

This has been a long road for me which started June 2009 with a botched RPAO by Dr. Scheid. At this point the PAO can not be re-done because it would perpetuate the arthritis and cause even more problems. At that time FAI cam-impingement and femoral retroversion were not caught, so although I had a PAO, residual problems were not addressed that resulted in a PAO fail. Two years later and I am still trying to fix the problems.

At times it makes me very sad and disappointed about the position I am in. Most recently it has been the roughest. I have dealt with more that I could have ever imagined. I was diagnosed with autonomic dysfunction or Dysautonomia. It is found a lot in EDS patients, but I will be seeing the geneticist about EDS in 2 weeks for confirmation. I have had my first lumbar sympathetic nerve block which helped in confirming that there is an issue with the nerves in my right hip and leg. I am having my second nerve block in about 3 weeks and should not need anymore after that. I had my second nerve injection in the front of my hip which should also help with the burning pain. I was also put on a beta-blockers to help with the anxiety. It is a whole-body approach to treating patients at the pain clinic and they try to do their best in giving overall care. I have to work on coping mechanisms and dealing with the anxiety for surgery. Not knowing can be very terrifying. Surgery is two months away and their is a lot left to work on with finals, summer classes, and my National Guard obligations, so hopefully I can stay busy and keep my mind off surgery.

There are others that have upcoming surgeries which include Jillian Murphy-shoulder surgery at Children's Hospital of Boston May 6th, Megan Hershey-rePAO w/ Dr. Clohisy May 16th, Marcie Pratt-RPAO w/Dr. Zaltz May 31st, Sami Straub-LPAO w/ Dr. Scheid June 7th and mine June 20th. There are a lot of hippie surgeries coming up. Good Luck Girlies!!!

3 comments:

RobynLeeJuly 13, 2011 at 6:02 AM
Hi Ashley, wishing you all the best! Found your blog researching femoral retroversion. I too am a rare soul and have this condition...along with eds and dysautonomia. I just tried a scope 6 months ago...and fear I'm not recovering because of the twisted femurs. Can you tell me how retroverted your femur was? I think I read your were rotated 25degees...I am about 25 degrees from normal version on my worst hip (7 degrees retroverted, where normal version is 15-20 degrees anteverted). I am praying this last surgery will make all the difference fir you! Best always, RobynLee
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AngieAugust 31, 2011 at 6:36 PM
Can you tell me more about your surgery for femoral retroversion? I also have this condition.
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UnknownFebruary 21, 2014 at 8:21 PM
Hi Ashley! My name is Anne and I just ran across your blog researching femoral anteversion and EDS. I am scheduled to meet with Dr. Millis and his team in about 3 weeks for bilateral FO surgeries. I have severe anteversion (close to 50 degrees) so it's the opposite of retroversion...but you probably already know that! As a nurse, my research has led me to question whether or not I have a mild form of EDS. I am also going though a lot of the same emotions you describe of fear, depression, frustration and financial stress. It's very reassuring to find someone else my age who has gone through the process and also speaks so highly of Dr. Millis and his team. If you have a chance it would be really great to exchange some emails with you if you have any helpful suggestions, advice, etc. for a fellow twisted hip sister. I hope you are doing well overall! skatingrn@gmail.com
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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