Hello Chiari family. I know it has been a while since I have been online and I am finally at a place were I feel well enough to explain what has been going on. On June 4th I had surgery to put a lumbar shunt in my spine because even though I have a VP shunt in my brain, my pressure was still 230 and scan we’re showing minimal fluid in the catheter of the shunt. So on June 4th Dr Chang went in and placed a lumbar shunt in my spine. I was put on a pain pump for two days and then switched to PO meds. At that point I attempted walking with physical therapy and on that first day I made it half way down the hall before I lost all color in my face and the physical therapist was yelling for a chair. I explained to the physical therapist and my nurse that every time I sat up I got a pounding headache and something similar to vertigo. I spent one week in the hospital and was sent home still unable to sit up without vomiting and getting sever headaches. One week after being home I had an appointment to get my staples out and at this point I was having the same issues but Dr Chang seemed to ignore them. His PA took my staples out of my back and then went to take them out of my stomach and mentioned to the Dr that it felt like there was a fluid patch. Dr change felt it and said not to worry that should go away and sent me home. The next day my new home health nurse came to see me for the first time and I asked her if the swelling in my abdomen was normal and she said no and that she would contact my dr to tell them what she saw. So a week later she came back and the swelling in my stomach had doubled in size and there was also swelling in my back at this point she called the doctor and they rearranged schedules to see me the next day. When I went to see the doctor he told me that it seemed like I was leaking spinal fluid and the only way to fix it was to do surgery, however he didn’t want to do surgery unless he had a scan to prove that there was a leak but since I didn’t have insurance no one would do my scan. He said he would talk to the hospital and see if they would do it and bill me later but until then go home and stay in bed. By the time I got the scan of my abdomen I had been leaking spinal fluid for three weeks and couldn’t sit up without vomiting and having one hell of a pressure headache. The next day I met with Dr Chang and he informed me that since I didn’t have insurance I would have to come into the hospital through the ER but he didn’t have an opening for surgery until the next Thursday so on Wednesday of the next week go to the ER complaining of pain and vomiting and he would handle it from there. So on June 25 I went to the ER like I was suppose to and on June 26 I had my fourth surgery in a four month span to fix the leak. When I came out if surgery I was put on bed rest until that coming Sunday. I was starting to feel better day by day and then on Saturday I found out that I had E. coli in my urine and was put on isolation and began treatment for that. The first antibiotics they gave me were resistant to the bacteria so they had to change the meds and start over on a 7 day treatment plan. So due to the infection I was in the hospital from June 25 to July 5. Overall the last two hospital stays were the worst but I am home now and feeling a little better. I still have a constant headache and doing simple things like taking a shower and getting dressed wipe me out. I am learning to take it one day at a time and I am hoping that this was my last surgery for a long time.
Oh my, I am sorry you are going through all of this. Hopefully this is the last of the surgeries and you are now on your way to recovery.
I hate that you have had such a rough go of things! I am praying you will have a swift recovery from this point onward!
You have endured enough my friend. Only good things to come now. Keep your chin up.
Amy my God! It sounds like you are finally on the other side of it. Thank goodness for that nurse. I’m so glad you are feeling at least a little better and hope everyday you inch forward. I’m so sorry you had such a tough way to go.
Hugs, jenn
I’m so sorry that you are going thru all of this. Trust me I know the feeling! I had 3 surgeries in a 30 day span! Still trying to plant my feet on solid ground. Thank GOD for that nurse. Praying that this is the last of your complications. Believe me I know they are no fun. And that constant vomiting…been there done that. You are strong! I know that us Chiarians may feel weak alot of time, but we have come FAR! We didn’t get here by giving up! Clearly I’m in one of my better days…lol but continue to heal and my best advice is to move around a bit…even if u get a bit wiped out. I learned the hard way not to stay idle. Caused me to have a PE (Pulmonary Embolism)…hurt like hell and hated having to be hospitalized. So to avoid that crappy situation just take a stroll to the bathroom or kitchen every so often. Sending gentle hugs your way! :-)
I’m making sure that I am staying mobile. Yesterday I got the great idea to go to the mall with my friend to get my little girl some clothes. I went to one store and that wore me out. I started sweating and getting cold chills and felt like I was about to pass out. My friend couldn’t get me home fast enough and it took the rest of the day to bounce back from that. So today I have taken easy and ended up having to take a nap at 3:30 in the afternoon because I couldn’t handle the headache anymore. I get my stitches out tomorrow!!
Amy, your last post reminds me of me. I haven't been as mobile as I should be, but I have been somewhat. Yesterday I also had the great idea to get out of the house for a bit and run some errands with my sister. It absolutely wore me out. I've taken two naps today...one was a mini-nap about 40 minutes or so, the other one was like 4 hours...yikes. On top of that, I also have my post-op appointment tomorrow :)