January 31
Dr. Munoz's office calls and cancels my post-op appointment for tomorrow, Tuesday Feb.1st. The whole Chicagoland area is under a blizzard watch. They rescheduled me for Thursday, Feb. 3rd. Now, I was already nervous about leaving my stitches and staples in this long. My surgery was 12 days ago, and stitches and staples come out between 7-10 days. I was devastated that they cancelled clinic, the storm wasn't due to hit the city until the afternoon, but they closed anyway. I panicked, I AM ABLE to take out my staples, I do it all the time. Dr Munoz gave me a staple remover years ago, so I wouldn't have to drive all the way up there just to get them out. I've seen it done a million times at my work, staples are a piece of cake, I've been taking my own out for years. So between Tiffany and myself, we get all the staples out. Tiffany was a true pro at it! (for never doing it before) Now, I've NEVER had stitches before, and Tiffany is looking at them saying, I think the skin is starting to grow over them... That would explain all the itching. I send my boss an e-mail explaining what was going on, and that they rescheduled my appointment for Thursday. But Northwest Indiana was to continue getting lake effect snow after the blizzard, and there is a possibility that I may not make that appointment, and I needed these stitches out. He agrees, and a note was faxed over from the Neurosurgeons office giving him permission to do so. Thankfully, my boss takes those stitches out! And honestly, as mad as I was, I was thankful that they cancelled my appointment. It got REALLY bad in Chicago. People were trapped in their vehicles on Lake Shore Drive, and accidents all over Chicago, and NW Indiana. THE BLIZZARD CAME!!!
Feb 2, 2011
Two feet of snow fell, I'm sure even more in Chicago. Jeff home from work, Tiffany home from school. We were under a State-of-Emergency! No one is going anywhere! It was a storm, so naturally that meant that I felt horrible, and I did. Around noon the day before, I started to get a really bad, not typical, headache. Almost migraine-like. I haven't had a migraine in years, I just thought it was a really bad headache that came along with a really bad snow storm... I was in bed most of the day. Buy evening, I was on the couch with an icepack on my head because it hurt so bad. I went to bed at normal time, we had to get up early to go to the Dr. in Chicago. I woke up in the middle of the night nauseous, head just pounding. I found some medication that I had from my surgery in November, it was a headache medicine with caffeine in it. So I took 2, and a 750mg Vicodin, and went back to bed. I was sick like that the whole next day. (That migraine-like headache lasted thru Sunday night. I watched the super bowl game laying down with ice on my head. My daughter made us an amazing dinner that night.)
Feb. 3, 2011
We had not even been plowed yet, 2 feet of snow on the ground. I call the Dr's office and tell them that we will not be coming today due to the lake effect snow that continues to fall here. They rescheduled it for the following Tuesday. We're still under a State of Emergency until 12pm today!
Feb. 8, 2011
Today is my daughters birthday "Sweet 16!"
We head to Chicago, despite the lake effect snow that was dropping about 4 inches of snow on us. It was only here in Indiana, not in Illinois, so we make the trip anyway. We get past Cline Ave. and the coast is clear, just like they said on our local radio station. White knuckled (well... I was anyway) it took us an hour to get to the state line. Normally that's a 15 to 20 minute trip. Thankfully, we get to my appointment on time. The NP comes in, asks how things are, I tell her of the migraine-like headache that I've had for days now, that are making me sick to my stomach. And again with the swooshing. Also, that I have been having this very uncomfortable feeling in my abdomen. When I eat, or drink I have this overwhelming fullness, and pain. She thinks I need to get an Ultrasound to see if I developed a Pseudomeningocele. That's a sac of fluid that is collecting, and not being absorbed properly. She leaves the room, to get the instrument to adjust my shunt down one more notch, and to talk to the Dr.
I've had a 5+ year relationship with this Neurosurgeon, he knows me and my husband, my chart is like 3 inches thick, we have history... He and Robyn come into the room. He doesn't even sit down, but shakes our hands. Standing there, he says, "There's NOTHING else I can do for you surgically, I cannot continue to open you up, you are going to get an infection!" he was very standoff-ish... "I'm going to refer you to a Dr in Munster, a Vascular Neurologist, she can treat your symptoms, but there is nothing else I can do for you as your ventricles in your brain are collapsed." So not typical of him to act like this towards me, or anyone for that matter, just very uncharacteristic of him. Jeff and I were both stunned by him not even sitting down to talk to us. Then he tells Robyn to write me a Rx for an Ultrasound, and that he is leaving me in Robyn's care for now, and that he will send an introductory letter to Dr. Deleo, the Dr in Munster, introducing me and explaining to her my history. He was frustrated with my disease, for the first time since I've been seeing him, he showed it!
The good news was that my shunt WAS still programmed at 1.5! I was very happy to find out that it wasn't malfunctioning! Robyn adjusted it down to 1.0 for me. I got the Rx for the Ultrasound, and off we went.
Feb. 12, 2011
I go to Porter, a local hospital, to get the Ultrasound. When I saw the Dr just a few days earlier, it mostly was discomfort I was experiencing, now it's a small lump around the incision. The tech, while performing it, is telling me I really needed a CT scan, but she will do her best to get pictures of what they are looking for. Turns out, it wasn't what Robyn thought it was.
On Tuesday the 15th, she tells me it could be a Seroma, and that too is a sac of fluid that is not being absorbed. And that I now need to have a CT scan.
Feb. 17, 2011
I go to Porter again, to have the CT scan this time. During those 5 days between the Ultrasound, and the CT scan, the discomfort and small lump has turned into a grapefruit size lump extending across my abdomen. I hurt all the time, and whenever I eat of drink I get that overwhelming feeling of fullness. I go the next day to pick up the results and a copy of the scan. It is a 6.3 x 4.3 x 4.4 mass of CSF (spinal fluid) in my fatty tissue. The fluid is supposed to be draining into the peritoneum. Knowing that Robyn is off on Fridays, I know that I have to wait until Monday to hear from her, but I call her anyway to leave a message that I had the scan done, and where.
She calls me on Monday to tell me that she didn't get a fax of the results, I tell her that I have a copy, and she asks me to read it to her. I did, and the scan report does not say if the catheter tip is in my peritoneal cavity, or outside of it in the fatty tissue... So now she wants me to overnight her the CD so my neurosurgeon can see it for himself, and to call Porter and ask them to re-fax the report to her attention. I called Porter, asked to speak to a Radiologist, and asked her to please identify exactly where the catheter tip is, and update the report, and fax it to Robyn.
Feb. 22, 2011
NOW, I WAIT!!!
Waiting to hear from Robyn, I overnighted my scan to them, and it is guaranteed to be there by 3pm today. I hope she got the fax that I asked Porter to send to her. Dr sees patients today in his clinic from 1-5pm. I will hear from them this afternoon, or tomorrow morning. Hopefully with an answer as what we are going to do about this!
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