Hi. My husband suddenly and acutely started having headaches on March 29. When he started vomiting I took him to the after hours clinic where he was prescribed codine. Later that night when they seemed to be getting worse (and rather scary for me to witness), I called the ambulance and he was taken to hospital. They kept him in over night and discharged him at 5am the next morning sighting migraine. I knew when I saw him again, it was something more and 6 hours later took him to our regular GP where she wrote a letter to the hospital for us to re-present. He was finally admitted that night (March 30) and after 2 days of observation it was decided he had a leak in his CFS system because the headaches would only reoccur when he stood or sat up. On the 3rd day (April 2), after they kept bumping him from the MRI list because it was determined his priority for it was low, they performed a lumber puncture to gage the pressure of his CSF and sent us home to get a private MRI.

The MRI immediately picked up a golf ball size colloid cyst in his 3rd ventricle. We were immediately sent back to the ER department of the hospital where we were finally taken seriously. By this time though the headaches for my husband had become crippling and server. He was admitted immediately the the Neuroscience HDU to await surgery on the collid cyst. That night however he coned (his brain started to shut down his respiratory system) in their care and he was taken back for emergency surgery at 3am to insert 2 shunts into his ventricles to relieved the pressure on his brain. He was then kept in a coma for half a day in the ICU before they woke him. Eventually when he woke he was able to talk and respond and had control of his body.

They waited 5 days from that surgery before performing a trans callosal interhemispheric resection (crainiotomy) of the cyst (on April 8). It took him 2 days to wake from that surgery and he woken to having no control over his entire body or speech.

We are currently 12 days out from the crainiotomy. He cant walk, he cant sit up, he will say maybe 3 words a day, if that, he has no control over his bowels or bladder, he cant even move his torso to roll over. I question him about our past and by pointing to yes no answers, he seems to have his complete long term memory but his short term memory is less then 30mins (he has no idea what happened to him). Essentially he is locked within a body that cant do what he wants it to do.

My husband is 33 years old, a chemical engineer in the oil and gas industry and father to two very small children.

I'm wondering if anyone else has lost so much from the resection of their colloid cyst through crainiotomy? and if so how long did it take to get back somewhat of a normal life? Will life for him/us ever return to normal?

Hi Snoopsndoops,
Your husband's story sounds so much like mine it is quite chilling to read. I presented to an MD back in 1997 with horrible headaches that left me pretty much immobile. The small town doctor that i went to was a new graduate, and had no experience with any kind of brain problems. He kept thinking it was sinus related and prescribed antibiotics. This would help relieve swelling, but eventually, I was right back in his office because of the pain.

Eventually, he sent me for a cat-scan which showed "something" as he called it. Eventually, I was sent for an MRI. The cyst was located, but he still did not proceed with much encouragement that there was potentially a killer lurking in my brain.

My husband, young son and I moved back to the city and I was working full-time as an RN. In the National Guard, and Mom to a young energetic son. My life was full and hectic, all at the same time.

I kept on working as best I could until I just had no energy. I wanted to cut my hours down to a lesser load, but was unable to. Eventually, about three years after the return to the city, I awoke one morning about 4 am with the absolute worst headache I had ever had. I went to the bathroom because I thought I was going to throw up. When I turned on the light, I could not see from my left eye. At that point, I remembered the previous brain scans I had had done in the small town. I waited for my husband to wake up, and told him about the loss of sight. By that time the vision had returned. He insisted on me going to the doctor, but I put it off until the next day. When I went to the neurosurgeon's office, he came in, put the scans on the light board, turned to me and my husband and said, "You have a colloid cyst of the third ventricle. When you leave here I suggest you go immediately to the ICU and await me rearranging my schedule to perform emergency surgery." I asked what would happen if I didn't have the surgery, and he looked at me and then my husband and said, "He will wake up tomorrow morning. You, will NOT!"

At that point we left the office, heading to the hospital. Sent straight to ICU until he got there the next morning for surgery. When I "woke" up, it was actually a week later when I was put in Brain Injury Rehab at a Rehab Hospital. I could not talk, I could not remember past 5 minutes, I had no bladder control, It was degrading. I was told I would treat the other brain injury patients like they were my patients when I was working as a nurse. I was frequently found at the med cart riffling through the Med admin book. One day while doing this, I saw a very familiar face. A picture of me on my med page! This was an awakening for me. I began to remember bits and pieces of the little doctor who told me to go to the ICU and await surgery.

It took a great deal of therapies to get me back to my somewhat "normal" self. Speech Therapy, to relearn how to talk, Occupational Therapy to help me begin to organize my thoughts so I could return to work some day, and at first I had Physical Therapy, because my balance was somewhat off and I kept walking into walls. (Dilantin serum sickness later diagnosed)

Sorry for the long, long story. I just kind of wanted to give you an idea from someone who went through what your husband is going through and let you know he can make it back to you. Is he on any meds right now? The first few anti seizure meds I was on proved very bad for me. Once I was put on the right one, the lights started to come on!

It has been almost 11 years since my surgery. I have since retired from the Military with 23 years service, and working as a full-time RN. My headaches are gone, I feel healthy. Most people have no idea I have had such an experience. Please stay strong for your husband. He needs you now. Write small notes and leave on the mirror, table, in a book etc. for him to read. One of the nicest things I remember about rehab was a daily note from my husband saying, "You are getting stronger day by day. We are here for you".


Sorry this is so long, but I feel you need to have someone say "hang in there". Post pictures of happy times so your husband can see them. This will help spark his long term memory.

Please let us know how he is doing. I wish your family the best, Dodi