New Hardware
This recovery has been nothing like I imagined. I am a week past 3 months post-op and still using 1 crutch at all times and sometimes both because most recently my lower back/SI region has been having unbearable pain. I will need to talk with my OS and PT because the surgery caused my already shorter leg to be even shorter throwing off my spinal alignment and causing instability. I have had SI dysfunction throughout the years, but as my activity level has decreased and I have needed more surgeries, compensation/weakness has caused issues in other areas, like my back. I am going to have to go back to wearing custom orthotics to help my SI instability and gait.
The pain has been worse than anything I could have imagined. The nerve pain alone makes it hard to even stand up. I have had numerous other nerve entrapments in my legs and hips, but it looks as if my femoral nerve is entrapped and why I am have recurring pain after blocks/injections/medications. I have had 2 spinal blocks in the last month and numerous femoral blocks since surgery. I spend a lot of time at the pain clinic trying to figure out and manage what is going on. It takes a lot out of me just to go to a doctor's appointment or physical therapy session. I have to choose what is most important to do because there are many days when I don't have energy or strength to leave the house. I have been experiencing more nausea lately and I am unsure why.
I have also experienced an embarrassing complication since surgery. I have been having urinary retention/incontinence issues. I know that seems like a contradiction, but what has been happening is that the retention during the day causes incontinence at night. My bladder muscles have weakened and are not able to help enough in the voiding process which leaves a bladder that is not fully emptied. Then, at night, the bladder has become too full and not able to hold in the urine because of the weakness which causes night time bed wetting. When I went to see Dr. Millis for my 3 month post-op visit I also saw Dr. Yu in Urology and had some testing done to determine what was going on. It is partially from EDS and also from surgery/medications. EDS causes laxity everywhere, especially in organs like the bladder, vessels and muscles, which contain a lot of collagen. I had an ultrasound and urodynamic testing. The ultrasound revealed some cysts on my kidneys which are not uncommon, but not normal. They should resolve on their own. The urodynamic testing was able to let us know how my bladder is functioning. I was put on yet another medication, desmopressin, to help produce less urine at night and take stress off the bladder. After my hip is figured out and I am recovered Dr Yu wants to investigate further why this is happening. But until some of these mitigating factors are resolved it won't be helpful. Yeah, yet another problem caused by EDS!
At this point in recovery I felt worse off then when I started. I am having increasing nerve pain and issues, losing control of normal bodily functions and having increased pain and instability in multiple other joints. Its like a downhill chain reaction. I also found out during my post-op visit that I can not combine my right and left hip surgeries. I was hoping to have my hardware removal and left osteotmy at the same time. But, because my right hip has been so complex that the surgeries will have to be separate to make sure my right is stable enough and strong enough to handle the stress. This means I will have a minimum of 2 more hip surgeries, possibly more. We are hoping that my right hardware removal and tweaking can be done in December when I am on break, but it'll depend on how I continue to heal. I need a few other things done, including a labral repair. The labral tear could be part of the reason I am having continued groin pain. I may be able to have that done locally, but again it'll depend on how the healing goes and what is decided between the docs. I also will need a nerve release done by a neurosurgeon. The nerve issues I have been experiencing have not lessened with the injections and continue to return which is a sign of entrapment. I am hoping that this can be combined with my hardware removal if decided to be done locally. It will cut down on the number of surgeries that are needed.
These last few weeks have been more than challenging in every way. I am dealing with pain and mobility issues 24/7. I am also trying to go to school full-time at night and work during the day. It has been harder then anything I have done. I am fatigued all the time and there are many days when I am not well enough to even leave my house. I am also going through the job hunt process again, because the job I was hired for turned out to be completely different. I need something that is stable and at least pays my basic bills. I have to be able to survive and that doesn't even factor in the amount of money needed for medical bills and discretionary funds. All I can do is keep trying, working, and praying that this will all work out, but it is not easy.
Taking Time to Celebrate My 24th Birthday With Family and Friends
