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!!!

Update time :)

Hi guys! Wow have I fallen way far behind on updating! There have been a few things going on with me medically, but not too much.

The biggest thing that has happened was a trip to the emergency room a couple weeks ago. Well I had had a pretty bad headache for over two weeks now. We are thinking that the nerves are starting to come back online from the surgery. It got to the point where I was not tolerating it very well any more and we could not manage it very well at home. I then spiked a low grade fever with absolutely no signs of the flu or any other viruses. Well with my port we are always on the look out for infection and I have to go to the ER at the first sign of a fever or infection. An infection in my port can spread to my blood stream and then my heart relatively quickly and is potentially fatal if left untreated.We went to the ER to rule out any infection and thankfully there wasn't one, so we still do not know exactly what caused the increase in symptoms. Thankfully I am feeling better now!

I had an appointment with my neurologist/POTS specialist on 2/13. We discussed everything that has happened since I last saw him in August and decided not to change anything for now. I am very stable and doing great on the meds I am on now, so why mess with them? We did talk about getting off of one of my medications come this summer because it may be contributing to my increased pressure headaches, but I am not willing to risk going downhill with school going on right now. I only have 2.5 months until I graduate, so we will adjust things after that! The only other thing we talked about at this appoint was how my body would handle pregnancy. That is something that we want to start thinking about now that I am married and close to graduating. He said it is an option for us, but it won't be easy. I need to get off all of my medications and will have a difficult pregnancy (bed rest probable), delivery, and recovery period. For now it is good to know that from an autonomic nervous system stand point I could handle a pregnancy, but there are many other doctors to talk to and get opinions from. The one I am most interested to hear opinions from is the geneticist that I am on the wait list for.

I have started to access my own port! It took me a few tries to get the hang of doing it, but now I can do it with no problems! My nurse is coming one last time on Wednesday to discharge me and then I will be on my own. I am confident I can manage it though!

My right wrist (the one I had surgery on in August) has been increasingly sore for the past few weeks. I was hoping it is just with the weather change that it was sore, but I can't bear any weight on it (pushing myself up, crawling, pushing on a door, carrying anything heavy, etc.). It had felt fantastic since the surgery, so I am not sure why it is so painful right now. Hopefully it goes away soon otherwise I will have to make an appointment with my orthopedic surgeon to get it checked.

We got the medication delivery system set up with my new insurance. They deliver a 3 month supply of all of my meds and they are now only $20 a month for ALL 4 of them. This is about 1/5 of the cost or less than it was for my old insurance and I don't have to deal with picking them up multiple times a month since they were all on different schedules. This has been really nice and convenient. 

My insurance situation is changing once again... I still have not been able to get into an endocrinologist with all the insurance issues and at this point am hoping to wait until after April 1st because blood tests and scans will be much cheaper with my new insurance.

Right now the only appointment I have scheduled is on June 12th with my POTS specialist. I will update as soon as we find out more with the new insurance and are able to schedule the other appointments that I need. Sorry for the long gap in updates, but I have been busy with school and work. I am feeling really well and am happy with where I am at medically right now!

Brain fog

So it occurred to me today that I talk a lot about brain fog and the medication I take for it, but I never really explained what it is. Brain fog is different for everyone, but in general it is just what it sounds like: foggy brain! For me this means that I have to work much harder to process information.

I do not take my medication that I take for brain fog on the weekends because it causes some gastrointestinal side effects, so my stomach needs a break and I don't need my brain on the weekends anyways! I went out with some friends the other night to a pizza place. I didn't even think of taking my medication because it is not like I had school or work that I needed my brain to be clear for. Well I realized I should have taken it! The main issue of brain fog that I noticed was that I had a very difficult time following the conversation because of how many people were talking. If only one person was talking I was just fine, but when multiple people were talking all at once I just could not process what was going on. Another issue I have with brain fog is word recall. I know what I want to say, but cannot come up with the word. For instance, I wanted to say the word "magnet" but could not come up with the right word. I instead made a rectangle with my hands and said "you know the sticky thingy for the fridge with pictures on it". Thankfully my husband is incredibly understanding, but it is really frustrating! Another example was I was trying to come up with the word "rabbit". I have 4 rabbits so this is a familiar word to me, but instead I said "you know... the little furry, jumpy creatures". I know what I want to say, but it just won't work for me!

Another symptom of brain fog is that I will walk to another room to do something, the kitchen for example, and stand in the middle of the kitchen completely unable to remember why I am there. Sometimes if I stand there long enough I will remember, and other times I don't remember at all. Another way that brain fog affects me is when I am reading. I will read the same line or paragraph over and over and over again without realizing it or retaining any of the information. Sometimes it does not matter how hard I try I simply cannot gain information out of what I am reading. For those of you who know me you know I LOVE to read, so this is extremely frustrating!

No one is 100% sure why this occurs for me and other people with POTS, but the most likely explanation is that blood pools in my legs when I am sitting or standing. Since this blood is stuck down where it is not supposed to be it is not getting to my brain. My brain is then allocating all of the blood and oxygen that it does have to essential functions like breathing and other involuntary functions. It is not enough of a deficit to be dangerous to me, but this lack of blood going to my brain is likely why the brain fog occurs. My brain simply cannot maintain all of the necessary bodily functions AND do things like come up with words or remember things at the same time.

I hope this helps at least a little bit to understand what brain fog is and how it effects me :)

Long overdue update!!!

Hi all! It has been a long time since I have posted an update. Thankfully this is a good thing! I have gone back to work and then last week started school. I work 5 days a week for the first time ever! Only about 15 hours or so a week, but I am very happy I can physically do this. I am also taking a full load of classes, so that is very exciting as well!

Physically I have been doing very well. My neck doesn't hurt hardly at all anymore, my range of motion has come back significantly, my neck stiffness is nearly gone, and my headaches have improved drastically! Car rides do not cause me the same amount of pain that they used to. Every bump is not excruciating any longer and I don't need to wear my hard collar at all anymore! My swallowing/aspirations issues have COMPLETELY dissipated as well :) My incision looks good and isn't that itchy any more. Here is a photo of my incision at just about 1 month post op. My surgeon said it looks good. There are a couple of white spots on it which are actually stitches that are supposed to dissolve. With EDS (connective tissue disorder) my body rejects the stitches before they have a chance to dissolve like they are supposed to. It doesn't hurt and I expected it to happen because it happened last time as well. We just have to watch and make sure that I do not develop an infection from any of the rejected stitches.

 

I am still very low on energy. They say it takes about an average of 2-2.5 weeks for every hour you were under anesthesia for the toxins to get out of your body. Since I was under for over six hours it could still be quite a while before I start feeling better again. My thyroid levels being low are also probably causing some fatigue.

I have started to learn to access my port! It is very difficult to get the needle in the right spot. I can prep everything and am confident I know the correct procedure, but I am struggling to get the needle in the correct spot. It will take practice, but I am getting there at least! Hopefully I'll get the hang of it shortly, but it is not easy to do because it is on my upper right chest and I am right handed. Also trying to do it in a mirror makes it difficult as well. I had gotten some little alcohol filled caps that I put on the end of my port while I was in the hospital before and you might remember that I was trying to get some for at home because they reduce the risk of infection. Well we called the company that makes them (Curos they are called) and they sent us a "sample". Well this sample is a hospital sized sample and contains 250 caps in it! This is well over a year supply for me so that was exciting! :)

My neurologist also called me in a prescription for a nausea medication. I have been having really bad nausea and haven't found anything to control it besides this medication so I was extremely grateful for that!

I now have my new insurance, but we are still trying to sort stuff out so I have not been able to schedule any appointments that I need to yet :( Hopefully it will all get worked out very soon!

Right now the only appointment I have scheduled is with my autonomic neurologist on February 13. This is just a follow up/check up appointment, so I don't anticipate anything exciting happening. I will update once we get my insurance settled and I am able to schedule the appointments that I need to! I'll try not to let so long go between updates as well :) Sorry for the delay!

No news is good news!

Hey all, I really do not have much to update on right now. I am still having very little pain and am recovering very well. I am getting around easier and am starting to get more energy. Car rides are still painful for me, but I made it over an hour to my parents house without my neck brace on! I was supposed to go back to work tomorrow, but I work at a school and they are closed due to the frigid temperatures (-50 Fahrenheit with the wind chills!!) so I have one more day to rest up. I am ready to go back to work! I love working with the kids and seeing my friends at work.

I have not yet made my appointment with an endocrinologist like I need to because I am currently undergoing a change of insurance. Hopefully within the next couple of weeks this will take effect. It looks like my neurologist is covered, who I will need to see again in February, but we are not sure yet about my other specialists. I need to find out if my neurosurgeon, ear-nose-throat, orthopedic surgeon and the geneticist I am on the wait list for are covered by this new insurance. It will be difficult to switch over insurances, but in the long run will save my family a significant amount of money without sacrificing my care.

I got new serum for my allergy shots a couple of months back, but just started using the new vial right before we left for New York. For the first few weeks I need to do a shot every week instead of every other week like I normally do. I have one more shot to do on Thursday and then I get to go back to every other week! I struggle to remember to do my shot, so it will be nice to get back to my usual schedule!

Right now we are battling my current insurance over a couple of things. For some reason they do not want to cover the compression stockings I got a couple of months ago. They are claiming that they do not cover them even though we called the insurance company multiple times to make sure that they were covered. We need to write a letter to the insurance company in order to appeal this decision. Secondly, one of my medications requires pre-authorization from my insurance now. We are not sure exactly why, but I now need to get my neurologist to fax over some paperwork to my insurance in order to get the prescription covered by insurance. Finally, during my craniocervical fusion an outside company was apparently used to monitor my sensory and motor functions. This is fine except for my insurance is now saying that this is an out of network expense. This service was nearly $10,000 though.... The insurance company is currently reviewing this, so we will not have any information for the next 30 days or so on this. Please pray that this goes over smoothly and everything works out well!