Saturday, March 12, 2011

Surgery #11 on RRD Feb.28 2011

We ~ Jeff, Tiffany and myself ~ arrive at Rush University Medical Center in Chicago, Il at 5am Monday Feb.28th for my 11th surgery.  Today is Rare Disease Day and I have an article in both of my local newspapers TODAY! And I'm having surgery again!

Today's surgery is to correct the tubing from my shunt into my peritoneum.  Apparently the surgeon didn't put in enough of a lead and it pulled out of the peritoneum, and is draining into my fatty tissue where it is just collecting. 
When I had my first post-op appt after the surgery I had mentioned that my abdomen felt "weird" especially after I ate. They sent me for an ultrasound that I had done a few days later on Feb 12th. Buy that time I had started to get a small lump around the incision. The ultrasound tech confirmed the fluid in there, but the radiologist could not confirm what it was, or why... So my Neurosurgeon sent me for an abdominal CT-Scan. I had that done on Feb 17th. By this time, I now have a huge sac of fluid 6x4x4 mass of CSF that is not being absorbed in the fatty tissue, it's just collecting there.

I get the results of the scan, the Neurosurgeon wants to SEE the scan because the radiologist again cannot confirm what it is, and WHERE the catheter tip is on the written report... Is it in the peritoneum and there is a leak? Or is it not even in the peritoneum? They ask me to overnight the scan with the results, so I do.
On Feb 23rd, they tell me I need surgery to correct the catheter, It is NOT in the peritoneum...

My surgery was scheduled for 7:15am. On Feb 28th. The surgery itself went well.  The catheter tip was indeed outside of the peritoneum, and he put in extra tubing so that wouldn't happen again! All went well, I was out of recovery and into my room around 1pm. Jeff and Tiffany stayed with me for a few hours, then headed home before the rush hour traffic started.

I was discharged from the hospital on March 1st. I felt pretty good, I was really sore, but overall felt good!


On Thursday morning I sat at the computer for about an hour, going thru about 4 days worth of e-mails, and catching up on Facebook, while having my breakfast & coffee. My head hurt, but not the usual hurt... I finished up on the computer and went downstairs to watch some TV and take it easy.

I didn't feel very well, and just figured my shunt was actually functioning now, so maybe I just needed time to adjust... Didn't really think it was anything other than that.

That evening, I didn't eat dinner until almost 7:30 or 8 o'clock.  I was so nauseous, i couldn't eat and my head was screaming so bad that I went to bed early. Thought I may have takin my pain meds without having enough food in my system, and it was making me sick. I went to bed with an ice pack, a cold washcloth, and a garbage can next to my bed!

The next day, Friday, I felt fine! I got up before Tiffany left for school, we talked a little before she left, I had my breakfast & coffee while checking my e-mails and Facebook... Then all of a sudden I started to get this weird pain up my spine, gripping pain in the back of my head, and I started throwing up.  What the heck just happened? I thought to myself... I didn't even shut the computer off... I grabbed another icepack, and went to lay down in bed.

After sleeping for about an hour, I felt better.  I went downstairs to watch some TV, and my head started to hurt again... So I just laid down on the couch, and I felt better.  Then I got up to heat up some soup from the night before (the dinner I couldn't eat) ate the soup, and had that same overwhelming feeling up my spine again, gripping pain in the back of my head, and I run to the bathroom to throw up! Then I go straight to my bed to lay down, and I am completely dumbfounded as to what the hell is going on. I laid there for a few minutes and it dawned on me that I was having LOW PRESSURE HEADACHES!!!

The Nurse Practitioner that works with Dr Munoz is off on Fridays, but I call up there anyway to make an appointment for Monday, March 7th. to get the shunt valve adjusted...

When my shunt was put in, the tubing pulled out of the peritoneum, and I had that shunt valve adjusted 2x's while it was not working properly... Now the shunt is draining where it is supposed to be, and it's draining too much fluid!!! FYI ~ A low pressure headache is 100x's worse than a high pressure headache!!! I realized that if I wasn't laying down, I was throwing up! So from Thursday night to Monday afternoon, I was on my back, or side, laying down on the couch or my bed.  It is very hard to remain laying down like that! ALL of my joints were killing me. Everything was sore and stiff... But there wasn't anything I could do about it!

Finally Monday comes, and we drive to Chicago. Now remind you I cannot sit up! Jeff drove, and I sat in the front seat, but with the seat laying all the way back.  Now let me also remind you how horrible of a passenger I am... I have horrible anxiety driving to Chicago... I had an icepack on my head, a pillow under my head, and on top of my abdomen because I still have staples from my surgery on Feb 28th, so I use a pillow for seat belt protection, and I have a cold washcloth over my eyes so I cannot see anything! I trust Jeff he's a really great driver, I just have anxiety! I was proud, I didn't freak out at all! And I made it the whole way without feeling like I had to sit up and "see" That's HUGE for me!!!

It's a very long walk from the parking garage to the Dr's office. A very long walk, one I was sure I could not make with this low pressure headache! After all my surgeries... this is the first time I had to use a wheelchair!

Robyn, Dr Munoz's nurse practitioner came in the room, and I explained what I thought was going on. She agreed and seeing me in so much pain hurried and got the magnetic device to change the setting on the valve. She has a hard time at first getting it to register. Then it does, but it's NOT set at the number it was last programmed to...??? We were kinda freaked out about that! When did it change, and how did it change? It took 3 people and 1.5 hours to program my shunt valve!!! CRAZY!!! I was completely miserable, not to mention confused by what the hell was going on with this shunt! The number it was set at, at my last appointment was 1.0. Today's appointment it was at 1.5. Even at 1.5 I should NOT have low pressure headaches! It took Robyn, another nurse & the help of my husband to program the shunt to 2.5... Which is a crazy high number for me, I'm comfortable around 1.0 to .5... Robyn tells me it's set at 2.5, and that's all she can do right now to get some fluid to build back up in my system, and that she will talk to Dr Munoz on Tuesday morning, and call me...


I've suspected it since my very first post-op appointment! Tuesday Robyn calls, I tell her that NOTHING has changed, it's been almost 24 hours, and I feel exactly the way i did over the weekend!

Tuesday afternoon, Robyn calls me back...
Dr Munoz wants me to have surgery the next day to have it replaced!

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