Back to square one!

Well unfortunatly things are not going to well. My shunt has been overdraining which in turn caused my ventricles to collapse. I had surgery on January 15th, Dr. Rigamonti thought he was going to have to replase the whole shunt, but once he got into surgery he realized that he had enough room on the tubing to put an anti syphning devise on the shunt which should slow the flow of CSF fluid and prevent the overdraing. I was quite estatic when I woke up from surgery and realized that I only had one incision in my head, my head wasn't shaved and that I only had to stay in the hospital one night. I went back for my follow up two weeks later, they did a CT scan and my ventricles were still collapsed. The doctor said they should have started opening up by then. I have to go back on the 22nd for another CT, if the ventricles are still collapsed he will have to go in and ligate my shunt, let the preasure build up for about a week to inflate the ventricles and then go back in my head and replace the whole shunt system. I am really hoping it doesn't get to that.

LIFE IS GREAT!

Well, I am back to work part time now and I have to say that I feel better than I have in 5 years! Life is GREAT, I could never have imagined that I would feel this good. I didn't even remember what life was like without a headache. I have to say that the withdrawls from the pain meds were really tough, still fighting that a bit, but other than that I couldn't be better. I am so thankful to have found Dr. Rigamonti and for the care he gave me. Being in the hospital all that time and going through all 6 of those surgeries I almost gave up hope, but I am so glad that I didn't because the reward is definatly paying off. It was a tough year, I will say that but it taught me alot of things. It taught me who my true friends are, it taught me that my husband absolutly adores me and this has brought us even closer than we were already and it taught me that my Nanny is a truly remarkable person and that I wish I could be more like her. She stayed with me every single day I was in the hospital at Johns Hopkins. She NEVER left my side. Family isn't always there when you need them, but Nanny is!

Follow up with Dr. Rigamonti

I saw Dr. Rigamonti this morning for my follow up visit. I got all of my stiches and staples out from all 8 incision sights. He is really happy with how things are going. WHEW, I was nervous. He seems to thing the headaches are rebound headaches from stopping narcotics cold instead of weaning and also he had my shunt at the lowest setting as a precaution so that not much fluid would be draining down my lumbar region where I had the leak to make sure that I would not start leaking again, since he had such a hard time fixing the leak. So he adjusted my shunt up one setting and said he would adjust it up one more at the next visit. I am having some double vision and blurry vision and he seems to think that will subside as the shunt gets set at a higher setting.

Hospital Update

Day number 16 in the hospital this go round, that makes 26 days since June 3rd. Needless to say, I am ready to go home. I have had 5 surgeries so far and have one more on Monday, July 13th. This past surgery was by far the hardest one yet. The doctor told me it would probablly be a 45 minute surgery and it lasted over 4 hours. They were trying to fix the leak in my back. I had been leaking spinal fluid out of the incision in my back since June 25th. The leak was due to taking the LP shunt out of my back. With me leaking spinal fluid, I have a high chance of infection and getting menegitis. I ended up with an infection in my spinal fluid. Coming out of surgery I was in agonizing pain, started throwing up the next afternoon from high pressure, they took the lumbar drain out and I wasn't leaking anymore, so therefore my pressure built back up. I ask the doctor why I was in so much pain this time, he has opened up my back and operated on it 3 times prior and it was never this bad, I couldn't even move. He had to remove a piece of my bone (vertabrea) to get to the leak. I was finally able to get out of bed for the first time today so things are getting better.

UPDATE

Okay, yesterday before surgery Infectious Disease Dr.'s came in to see me, it seems that since I had the spinal fluid leak in my back for 5 days that they are worried that my spinal fluid has become infected, which causes menegitis. WOW, so Dr. Rigamonti went in and cleaned up my back, he tryed to stop the leak, my incision is twice as big now for some reason. He said that because of the risk of infection that he was going to wait to go in my head to fix the VP shunt. So this morning, they took me down and put a lumbar drain in, lets just say that was the most painful thing I have EVER been through because I was away completly and had no pain meds or anything until afterwards. So now I have a catheder sticking out of my back, they are draining fluid and testing it for infectI cryed like a baby, I have had my back cut open three times in three weeks, they have stiched on my back four times since I have been here Thursday. My back is raw and HURTS As soon as they are sure that the infection is gone or that there is no infection he will go in to repair the shunt in my head. That is all I know right now.

Back in the Hospital :(

Well I am back in the hospital once again. I came up on Wednesday to have an MRI and to see Dr. Rigamonti and to get my stiches out. I found out that I would be going back into surgery on Monday because the shunt was not working, he needs to reposition the cathedor of the shunt about 5mm (yeah I get my head sliced open again for 5mm) He decided to leave the stiches in back from where he had taken my LP shunt until Monday. We got home from Johns Hopkins around 10pm, I got out of the car and leaned over to get my purse and stuff out and I felt something wet on my back I felt my back and it was wet. I went inside and got Warren to look at it and I was leaking spinal fluid out of my incision. NOT GOOD!! If any bacteria gets in, I could end up with menigitis. Warren immediatly put sterile dressings on it and covered it really good and I called the on call doctor, he told me to go to my local ER. I decided not to do that, every time I go to the local ER they page my old Neurosurgeon that I cannot stand because we don't get along, and it probably wouldn't end up so good since Dr. Rigamonti just took out the shunt that he put in, so I tryed to lay as still as possible, hoping that the less movement would help. I went through 3 dressings that night and soaked them. I called the next morning and he said to come now and he was admiting me until my surgery so he could stop the leaking and get me on alot of antibiotics to make sure there is no infection. So that is the scoop. I have a KILLER headache for the first time since the VP shunt was put in. I am looking forward to Monday, so that the headache will go away!

Surgery Update!

Okay, day number 7 in the hospital, this definatly ended up being a longer stay than antisipated. Here is the deal, when I came in last Wednesday to have the shunt tied off and the ICP monitor put in, things ended up changing. He ended up tying off my shunt and monitoring my pressure from the shunt site. My pressure was high, in the 40's to 60's at some points (a normal persons pressure is about 12), so needless to say, my body could not handle it and I was in agony, I was throwing up ALOT, they gave me every anti nausea medicine known to man through my IV, but nothing stopped it, this continued for 5 days. Monday I was set to go back into surgery, the plan was to do a procedure called ETV (basically drilling a hole through your skull, brain and putting a small whole in the third ventricle of the brain) This would allow for the CSF fluid to have somewhere to go. After this procedure, I would be in the ICU for a day or two and be sent home in three days or so. They plan was to come back in two weeks for me to get the VP shunt (the shunt put in my brain) The risk of infection was to high to do both procedures on the same day, along with having just done the LP shunt surgery. I was sent to get a CT scan right before going to the operating room with little life saver sticky things all over my head, I guess kinda a road map for the doctor when he gets to drilling. He decided at the last minute after seeing my CT scan that doing the ETV procedure was to risky because my ventricles were calapsed from the high pressure, so he went ahead and put in the VP shunt. I have to say, I have been through 12 surgeries now and natural childbirth twice with no drugs or epidural and the pain I encountered last night was worse than all the others combined. I have no hair :( , I have 2 incision sites in my head, my neck hurts REALLY bad from where he fed the tubing down to my abdomin. He also decided to go in yesterday and completly remove my old shunt, so I also have my back sliced open and my abdomin. The Dr. came to see me this morning and told me that it was a really rough surgery, the surgery was supposed to take about an hour and it took almost 4 hours, he seems very confident that this will help me, he is doing everything he can to try to keep me from having to have the decompression surgery, he feels that the decompression surgery is a really risky sugery and doesn't always turn out the way it should. To say the least it has been a very painfull day. We are hoping that I will be able to come home Thursday or Friday, I don't know though, my blood pressure is really low and I am now running a fever, I just pray that it is not a shunt infection, that will be really really bad!! I have to say, that Dr. Rigamonti and his team are excellent. Everyone up here at Johns Hopkins has been so nice. I will keep you updated on when I come home. Thank everyone for the prayers!!