Wednesday, August 12, 2009

Baltimore ^$^#*&* ummmm Well Ya Know

Well maybe that's not a very nice way to open things up?

But that about sums up how I feel at the moment.

Mom and I left for Baltimore yesterday and I think we both had our doubts that we would even make it to I-95. I woke up with an excruciating headache that morning. It was to the point of being in a sweat and sick to my stomach. I took my Oxycontin and Percocet..nothing. I had spent the previous night at Mom and Dad's but we had to go to my house for me to pack. By the time we got to my house I really thought my head was going to explode. I knew it was time to bring out the big guns. Yep, Torodal injections. I never thought I would welcome drawing up a medicine into a needle and injecting it into my upper thigh but I gladly welcomed it this day. About ten minutes after the injection and a Phenegran pill I felt so much better. I slept all the way to Baltimore.

We met with Dr. Dorai this morning and I knew in my heart of all hearts it was not going to be a great appointment but still I guess it just stings to finally hear it directly from her. I knew things were wrong because my head is still hurting as bad as ever.

She looked over my CT scans and the blood in the ventricle has not gotten any worse and is starting to dissipate. Now for where the appointment goes downhill fast.

She does not want a shunt patency test done now (this is the test where die is inserted into the shunt to see if it flows through that will show if the shunt is blocked) because it will only tell her what she already knows. The shunt is not working. Yes, you read that right. Not working. The blood in the ventricle has blocked up the shunt. How did that happen? Well...When they took the first shunt out it was attached to tissue in the brain and the removal caused bleeding. This was not seen until after surgery was over on a CT scan.

We asked does this happen a lot? She said No. I am only the second person she has ever had this happen to. Oh course I am. That's the kind of luck I have.

So what do we do from here?

Basically we wait. Crazy I know. The blood should dissipate. Should being the key word. Once it dissipates we will do a shunt patency test to she if the shunt is working. If it is not we will do surgery again to replace the surgery. There is a change that the blood in the shunt has clotted up in there and even after the blood in the ventricle dissipates the shunt will not work.

However, if my vision starts to be effected before the blood clears she will have to go ahead and place a shunt in my left ventricle. (this is not the desired location for a shunt) She will not compromise my vision.

So what do I do about the pain I am in for now. This is a very legitimate question we asked her. She very plainly stated that I do whatever I have to do to stay comfortable. Meaning, pain medication wise.

I am to have another CT scan in one month and mail her the scan. Then I will see Dr. Doari and Dr. Williams and we will make a game plan from there.

Whewwww.. That's a lot to take in. I am not sure I have taken it all in yet.

I still cannot believe that the surgery did not work. I really thought I would walk our of that hospital pain free and feeling like my old self again. It was not to be.

We did ask her about an LP shunt. This is a shunt that is put into your back, if you remember this is the shunt that I came very, very close to getting. She said that she has never put one of this in anyone because there is no way to control the valve and overdraing is a big problem with these and low pressure headaches. Boy am I glad I did not get one of these because I have had low pressure headaches before and the only thing that makes them better is to lay flat. That is definitely not a way to live.

Overall I am just numb. That is the only way I know how to describe it. This disease has been right in my face for over seven months and I am still do not feel like I have a handle on it yet. I do feel like I have finally found the best set of doctors for this. Dr. Zeena Dorai and Dr. Michael Williams, they are wonderful!!!

I cry, I yell, I am angry, I am sad, I am frustrated, I am disappointed.

But I have hope. I will never loose hope. You can never loose hope.

1 comment:

  1. Oh sweetie I am sooo sorry to hear you are still having complications, even after the new surgery. You have been in my thoughts and prayers, and will continue to be there--here's hoping that this mess will all resolve itself and you won't need another surgery to correct it. ((((((hugs)))))