NeuroTalk Support Groups - Complications since VP Shunt

Hello everyone! I am a 32 year old female. I had a VP Shunt placed in May of this year. I was diagnosed with Syringomyelia with a Syrinx located in my spinal cord at C5 & C6 in December of 2010. My neurosurgeon here in Houston sent my case to the tumor board at the medical center due to the fact that I also have a small cyst on my brain. No one can figure out why I have the syrinx because I have none of the known causes and my condition is extremely rare. I started having times of paralysis in my arms & hands along with SEVERE headaches for almost 5 years. I had many MRI's of my head, but no one thought to test the rest of my spinal cord. Once a dr finally ordered the cervical MRI, they found the syrinx and the syrinfomyelia diagnosis came about.

Because of the rarity of my condition, no one really knew exactly what to do. The first surgery I had in March of this year was experimental. I had duraplasty and laminoplasty done at the same time. I have 6 bolts in my neck that were placed to widen the opening to my spinal cord to promote the free flow of spinal fluid. After an extremely painful operation and recovery process, the surgery did not work. I then had many more tests done and my neurosurgeon felt that placing a VP Shunt was the next and only option. We did a temporary one first and we were going to wait 3 days to see if my symptoms improved, but after a couple of hours of the temp being placed, the excess fluid draining was so great that my surgeon felt it was necessary to place the permanent in that next morning. To this day, no one has been able to tell me why I have fluid built up on my brain and why my flow from my brain to my spinal cord is being blocked. Whatever is causing it, is also causing the syrinx in my spinal cord that is attacking my nerves and as it grows will completely deteriorate my cord.

Now that I have given you the long background, I was hoping that someone out there can help me understand the complications I have had since the shunt was placed. Almost nonstop since my operation, I have had abdominal pains. They started only on the right side where my tube is, but now they even come up on the left side. When they occur, they stop me in my tracks. It literally knocks the breath out of me. As time has gone by, I have gotten a little nervous that it could be "female" related because it sometimes seems the pain is around the ovary, cervical area. I find that hard to believe though, because it started right when I came home from the shunt surgery. I still get horrible headaches almost daily. My arms and hands hurt constantly and I have trouble using my right hand most days. Just yesterday, I started having pain where the actual tube is behind my right ear and down my neck. The pain comes and goes, but it is a shooting pain that also takes my breath away.

Does anyone out there have anything similar to this or can relate to my situation? With it being so rare, I cannot seem to find anyone that has experienced this or any doctors that can really give me insight on what to expect. My neurosurgeon is great, but he just doesn't know exactly what to say. This is taking over my life! I have a 5 and a 7 year old that really need me back. I feel like I cannot be the active and involved mommy I used to be and I just don't know how to explain that to them. I don't want to tell them I am sick and scare them. Also, I have a fiance that has had to deal with so much with me because of this. In no way has he complained, but I feel guilty still. We got together under much different circumstances and had great plans together and I haven't been able to follow through with any of them. Also, we wanted to have another baby because he does not have any of his own flesh and blood, although he loves mine like his own. Will I ever be healthy enough to have another baby? Will this shunt in my abdomen effect a pregnancy? I am on so much medication for the pain and symptoms that I would have to get off of for a pregnancy. How will I be able to manage that?

I don't expect anyone out there to have all the answers, but maybe there is someone in a similar situation? Any advice or help is greatly appreciated! Thank you and I am so sorry for the lengthy message!!!

VPShunt2011