So I know it has been practically forever since I last posted so I will do my best to preform as accurate an update as possible:
July: third hip surgery, this time a revision of my right hip "scar", this is usually an outpatient surgery but because of my EDS, AI, and autonomic issues they decided to keep me overnight and because of nausea after surgery it turned into a two night stay and probably should have been longer but they got tired of dealing with my meds and sent me home despite the fact that I couldn't keep anything down. On the plus side we added Reglan to my regimen of nausea meds and it has helped quite a lot and my incision is about 80% healed which is way more than it has ever been before.
August: Started school again (last semester)
September: Started to question whether or not I would be well enough to attend college
October: saw the famous Dr. Francomano, confirmed the EDS diagnosis (somewhere between types II and III she said to call it type 2.5) abnormal neuro exam coupled with symptoms suggested Chiari, Tethered Cord, or Cranio Cervical Instability (CCI): to begin wearing cervical collar for 15 min 4x a day and see a neurosurgeon. The cervical collar and cervical traction relieved some symptoms, but can't wear collar all the time
November: MRI comes up negative for everything, I was crushed because it means that my issues are dysautonomia which has no cure or really even treatment beyond what I am already doing (or so we thought). I was started on methotrexate (a mild chemotheraputic) at the end of the month for my Undifferentiated Connective Tissue Disease (autoimmune disorder) had to learn how to give myself injections for this one
December: Graduated from high school! Phone follow up with Dr. Francomano reveals that because of the fragility of EDS tissues, abnormalities do not always show up on MRI, she believes I have occult tethered cord and, because of the helpfulness of the cervial collar, CCI; it is even possible to have an occult Chiari. She also recommends getting one liter of IV saline once a week to help with autonomic symptoms. Rheumatologist wants me to go to the NIH (National institute of health) and Dr. Francomano wants me to see a neurosurgeon in Baltimore.
Fast forward to now:
On Thursday I got my first saline infusion, it took all four nurses on the floor and five sticks to finally get the IV in. They are not used to missing and were about to call in the flight for life team to try and get the IV in before one of the nurses finally got it in my wrist (ouch). The weird thing though was that I could hardly feel them digging around in the veins in my hands. It used to hurt terribly when they did that and I could barely tolerate it, but now it hardly bothered me. Mom was really concerned by this and we are left wondering if it is another neurological change or if my threshold for pain has just increased that much. My geneticist at Children's mis-wrote the order for the amount of time the saline was supposed to go in, but luckily we caught it in time and they believed us rather than the order, plus they had to use such a tiny gauge needle that they couldn't run the infusion very quickly (you aren't supposed to run an infusion in and EDS'er at more than 500mL an hour unless it is an emergency because it can cause the vein to blow or stretch it out significantly). The idea behind the infusion is that is increases blood volume, because EDS veins are so stretchy our bodies tend to believe that they don't have enough blood pressure or volume contributing to autonomic symptoms.
I don't know how long I will be able to do the infusions either because of my veins. I currently have one vein that can support a peripheral IV and if it is anything like the others, I have used up my one shot with it. The nurses asked about a PICC line, but those only last 6 weeks max and I will probably need the infusions for the rest of my life. Because of the way I heal and my allergy to silicon AND the methotrexate a central line is out of the question and a port could cause me to end up with yet another non healing wound. I know the EDNF recommends ports and central lines to people getting more than one IV and/or blood draw a month, but I heal so poorly that no surgeon is going to touch me.
We were the last ones out of the infusion center and the nurses were all wonderful, they wanted this to work for me as much as I do. I am feeling better and haven't nearly passed out since I got the infusion. My nausea is also much improved (not sure if that is from the methotrexate or the infusion) to the point where I am down to every 8 hours from every 6 on my zofran. I am scheduled to go back next Thursday, but after that I am up at Greeley and we have no idea what we will do then as I cannot drive and we have yet to find someone who can drive me to appointments and just generally check on me and be an emergency contact for when I fall and can't get up or dislocate something and need help pulling it back in place.
I was supposed to have an appointment with a new neurologist on Monday, but they called and said that they didn't want to see me and that I should go to University Hospital instead. They also faxed us back a copy of my summary sheet highlighting psycosomatic and opana (a narcotic) on it. They apparently didn't read on to see that my knee pain was not psycosomatic but a plica pulling my fat pad into the joint, squishing it to the point where most of my fat pad had to be removed. The nurse claimed that I was too complicated, but the fax we received contradicts that a bit. I hate that they sent that fax because now I am really anxious that I am about to go down that "it's all in your head" path again and that I will loose the allies I have gained and will be stopped from getting my infusions and the methotrexate.
This is horrible timing too because I am supposed to start college in two weeks and as things stand right now I am not sure I am going to make it. The university won't let any employees of the school help me get my joints back, the RA can't even come help me get off of the floor if I fall, all they can do is call 911 which is totally unnecessary for a simple dislocation or subluxation. I can't advertise that I am looking for someone to help me with laundry and call when I am in trouble either. I am going up with no support system in place or even a way to find one. I have no idea what to do! And if I start and have to drop out, that looks bad for when I want to start again because there is no medical withdraw.