SRS in a Patient Homozygous for Factor V Leiden

By Teri; edited by Anne Lawrence, M.D., Ph.D.

I have an inherited condition called "Factor V Leiden" that makes me unusually susceptible to developing blood clots. I am homozygous for this condition, meaning I have two copies of the gene that produces the abnormality. This makes my risk of developing blood clots especially severe, and greatly increases the chance that I might have a deep vein thrombosis or pulmonary embolus during or after surgery. I also have Crohn’s disease, for which I take prednisone.

After much discussion and consultation, Dr. Toby Meltzer agreed to perform vaginoplasty for me. My SRS occurred in November, 2002, after I had had a Gunther Tulip vena cava filter inserted two days earlier. I received Lovenox (low molecular weight heparin) for three days following surgery. There was quite a bit of postoperative bleeding due to the Lovenox, and some of the external graft failed, probably from blood running under the graft. Dr. Meltzer said the end result would probably be fine. Stitches also failed near the anus before the area was completely healed, but I understand that this happens frequently. I needed to be recatheterized three times during the recovery period because of major swelling around the urethra, and I stayed at the postoperative recovery facility for 14 days. So the surgery was no cakewalk for me, to say the least.

I’m now two months post-op, and doing better. I must be an extrememly slow healer due to the blood thinners and the prednisone for the Crohn's disease. I've recovered fairly well, and am moving up in stent size. The area of the perineum where the stitches fell out has healed now, and I can actually sit on a chair without shifting and having pain. I am very glad I was able to have the surgery, and I feel very lucky that Dr. Meltzer agreed to do it. Most surgeons would not have taken the time to deal with the added aggravations of my case. I am eternally grateful to him.

For anyone else with a similar situation – an inherited blood clotting disorder – Dr. Meltzer will probably require a temporary vena cava filter. This is expensive. The entire procedure, for placement and removal of the filter and day care from the hospital, cost $12,500 – $9200 for the hospital and $3200 for the physician performing the procedure. The cost could be prohibitive for many. On a positive note, the doctors and staff at the Tualatin Hospital were very friendly, and were curious about the SRS procedure in a positive way.

I am required to be on life-long coumadin therapy (with an INR of 2.0) due to the clotting abnormality. I was subsequently told by a hemotologist at Beth Israel, Dr. Chris Carpenter, that it would be OK to take estrogen along with the coumadin. I am using a low-dose patch, Vivelle 0.0375 mg, with the hope that I will at least maintain bone mass.

© 2011 by Anne A. Lawrence, M.D., Ph.D. All rights reserved.