Hi all!
I have had quite a bit going on since I last updated! The biggest thing happening is that I have been continuing to have problems with my port. It has been increasingly difficult to access and continues to be tilted. My husband tried to access it 2 weeks ago and could not get it. It was a lot more painful than what it normally is and I ended in tears. The poor guy is now terrified to try to access my port. Well, we called the on call nurse to come on Sunday and she tried multiple times to access it and she could not get it either. She then called my nurse that normally comes to see me and asked what she wanted done and they agreed that I needed to go to the ER to make sure that it was not damaging anything and that it was not clotted or infected. All of the nurses and doctors agreed that it looked and felt like it was pointing up and to the right towards my right shoulder (remember the port is in my upper right chest directly above my breast and should point straight forward). Well we decided to take some chest x-rays to get a better idea of exactly how the port was positioned. The x-rays he took were then compared to the x-rays that they took when my port was put in. Surprisingly, the x-rays looked perfectly fine. They sent me home with a still unaccessed port and said they had no idea what was wrong.
Well we waited a few more days and it shifted back towards a more normal position. I was laying in bed and was seeing if I could feel the three little dots that are on the front of my port. To my surprise I could! I went right then out into the living room where all of my supplies are and thankfully was able to access it on the first try! Then this week we decided it would be best to try to access the port immediately after we deaccessed it so that there was no time for the port to shift or move at all. It took a couple of tries, but I was able to get it on Tuesday of this week. I then had an appointment with my new general surgeon on Wednesday. We love the old general surgeon, but when my insurance changes he is no longer covered :( He recommended another surgeon in our area and he was able to get me in really quickly. The appointment went really well. He manually manipulated my port and shifted it around, of course to do this he had to deaccess it :( He said that the port is indeed pointing upwards and to the right. He does not, however, recommend going back into the OR right now. He thinks that even if he went in and resutured the port that it would just move again. My connective tissue is not as strong as it should be with the EDS and as he puts it my body just doesn't do what it is supposed to do. We are going to wait as long as we possibly can to go back to the OR. We are going to try to wait until we cannot access my port at all anymore. Thankfully after a few tries, some blood, and frustration I was able to reaccess my port after work that day.
The other appointment I have had since I last updated was yesterday with my orthopedic surgeon. My wrist has been causing me a lot of pain on the pinky (ulnar) side, where it was torn before my surgery, but it has also been having shooting pains on the underside of my wrist on the thumb (radial) side of my wrist. I have been wearing my wrist brace full time for about 3 weeks now, which has really helped. Well my wonderful orthopedic surgeon was very helpful as always (I LOVE him!!!!!). He said that he thinks it is a good old case of tendonitis that is causing the radial pain. This was most likely caused by a minor strain/sprain and because of my connective tissue disorder and scar build up from my surgery has gotten progressively worse. The treatment for this begins conservatively. He did a cortisone (steriod) shot on the radial side of my wrist, which will help to reduce inflammation and swelling. This will take another 2-3 days to kick in and then we are hoping that this shot will provide significant relief. He also ordered me an anti-inflammatory medication called Celebrex. It is similar to ibuprofen or Aleve, but is stronger and is much gentler on your stomach because it is intended for longer term use. I am to take this 2x a day (morning and dinner time) for 3 weeks, but he gave me a refill just in case I need it. The final thing that my orthopedic surgeon ordered is occupational therapy. This is to try to get the strength built back up, the inflammation down, and the range of motion back. The order is for 2x a week for 6 weeks. I go for my occupational therapy evaluation next Monday and then will begin actual therapy the following Monday. I then will go back to see the orthopedic surgeon in about 7 weeks, on May 8th.
I have had to change a couple of my appointments that are coming up. My appointment with the rheumatologist at Rush who specializes in my connective tissue disorder (EDS) is still set for April 1st. I am not sure exactly what to expect of this, but I am excited to learn more about this syndrome and what it means for me in the future. I am hoping it is a good visit and I have heard good things about this doctor from other patients who have EDS. April 2nd I was supposed to have an appointment with an endocrinologist, but I had to switch that and I now have an appointment with a urologist. I need to meet with him and get some testing done on my bladder. This will help to determine if there is neurological damage to my bladder. This information will then be sent to my neurosurgeon in New York in order to help diagnose another neurosurgical condition that he is nearly positive that I have. I will update more on this after I hear back from a couple of people and get a better understanding of how my neurosurgeon wants to proceed from here. I have my endocrinology appointment on April 9th now with a local endocrinologist.
That is all the information I have for now. I will try to update within the next week or so, but may not update until after my appointments on the 1st and 2nd of April. Thanks for continuing to pray and care about me and my journey!
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