Wrist and Port updates + upcoming appointments

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!

Appointments

Hey all! Well since my new insurance (which is AWESOME) kicks in April 1st I have started to make some appointments. I have an endocrinology appointment on April 2nd to finally get my thyroid issues addressed as well as some other things checked and an appointment with a rheumatologist who specializes in EDS on April 1st. I still want to see the geneticist who specializes in EDS that I am on the wait list for, but I was just informed that the wait to see him is now out until next march (approximately 15 months from when I got on the wait list) we wanted to see someone a little bit sooner since my EDS isn't really being addressed by anyone right now. Those will both be done at Rush University where my neurologist is.

I also have an appointment on March 20th with my orthopedic surgeon for my right wrist. It has been hurting me a lot lately and I can't do anything with it without it being in pain again. Things like brushing my hair, turning a door knob, pushing open a door, or using a can opener put me just about in tears. I picked up my 4 1/2 pound rabbit the other day with two hands (with my brace on) and it hurt my wrist so badly that I was in tears. I am back to being in my wrist brace 24/7 now. I am not sure why it is getting worse again, but hopefully my surgeon will have some ideas.

I still need to schedule an appointment with a GI doctor for either April 1st or 2nd. I also need to email my neurosurgeon in NY. I have a couple of questions for him and I am pretty sure I also need to schedule my follow up scans and Skype appointment with him. I will let you know what he says and when the rest of my appointments will be. So far there has been no change in my port so we should be able to wait until April to get it fixed. Oh yeah, I need to schedule that appointment as well!

Port issues

So I have had absolutely ZERO issues with my port since I got it until last week... I went to access it thinking no big deal I've done this a number of times super easily now! Well my nurse and I decided we should let my husband try to access it since he has never done it before and that way he knew how just in case I needed help ever. Well he struggled, which is normal trying to access it for the first time, but what is strange is that he could not get my port to pull back or to flush. This has never happened before so after a few tries I decided to try it. Well I had the same issue... After attempting multiple times the nurse finally tried it and she had the same issue as well! She finally figured out that my port is tilted! Well we obviously thought that that probably was not a good thing, so we contacted my surgeon who put it in. Meanwhile it continued to tilt further until the right side can actually touch back against my rib cage and the access point faces towards my shoulder. He got me in for an emergency appointment today at 2 o'clock. Well as I expected he wants to make a trip back to the OR to fix it.

Since it is still working right now, just difficult to access, we are going to hold out until I get new insurance on April 1st. The problem is that then this doctor is not covered by my new insurance :( He gave me the name of another local surgeon to work with, so hopefully he is able to get me in! I will update again very shortly with news on lots of appointments and goings ons. Please pray that my port continues to work so that we can wait until April to get it fixed!!!