Posted on 12/08/2003 4:53:03 AM PST by NerdDad
Mrs. NerdDad and I request your prayers for our son, Matt, (FReeper Clarinet_King) as we prepare for his brain surgery on Tuesday Morning.
Matt is a freshman Computer Science student and band member at the University of Southern Miss. He has experienced increasingly difficult headaches for about two years. He assumed he had picked up my migraines mixed with the stresses of his high school senior year and scholarship hunt. Instead, he was diagnosed in October with an arachnoid cyst in the left frontal lobe of his brain. The arachnoid is the spider-web-like first lining surrounding the brain. The cyst is a 6 by 10 centimeter (about the size of a man's fist) pocket filled with the same cerebral-spinal fluid that the brain produces and uses for padding inside the skull.
Doctors tell us that it has probably been present and growing all or most of his life. We've also been told that even if diagnosed early, these cysts are not treated until they start causing problems.
Matt will be admitted this morning to University Medical Center in Jackson Ms. He will have surgery Tuesday morning. The surgeon will make a 4-5 mm incision in the scalp and drill a small hole through the skull. A fiber optic scope will be inserted and guided with a computer into and through the cyst. A shunt will be inserted in the back of the cyst to allow the fluid to flow through the cyst.
Matt will spend 2 nites in the hospital and a week of recovery time at home. He will attend and participate in the Liberty Bowl with the band and return to USM in January for the next semester. His activities will be limited to avoid impacts to the head for 3 months and then he will be released to full activity. Because the internal pressure from the cyst significantly thinned the skull in the front, he will have to be careful about blows to the head for the rest of his life. But then, I guess we all need to be careful about that.
We feel confident that he is in good hands hands with this Dr and staff. He is in the prayers of many folks and I would appreciate the prayers of our friends here on FR. I've seen the power of prayer work many miracles and this lump-head needs all the help he can get. (Yeah, Dad is keeping his sense of humor.)
I am so anxious to hear how your son did after having his arachnoid cyst removed. Our son is in a similar position. He is at University here in the U.K studying geophysics. He is also a keen rugby player. A kick to the head resulted in him having headaches, and last Friday he was eventually given an MRI scan. He has an arachnoid cyst 7cmx5cm also in the left frontal lobe of his brain. I have been on the internet for hours trying to find information, and until I read your letter, it all seemed gloom and doom. We still have to discuss with the specialist tomorrow what he thinks should be done about the cyst, but if you have any advice I would so much appreciate it. Many, many thanks. Sally
It's been nearly 2 1/2 years since Matt had his surgery. His cyst was 9x5 in the left front quadrant. Looking back on his medical history, we have pretty much determined that it was most likely caused during childbirth.
The surgery was called endoscopic fenestration. It involved cutting a 1" diameter hole in the skull, then cut thru the top and bottom of the cyst. The bottom hole was left open to allow the fluid to drain back into the normal circulation system of the spinal fluid (sometimes they put a stint in to keep it open but not with Matt).
Matt attempted to continue his schooling but it did not work out for him. If I had any advice for you there, I would recommend skipping a semester before returning to school. Matt had his surgery done during the Christmas break and returned to college immediately. Looking back, I question if that was the best idea. He is doing well and working on the gulf coast of Mississippi.
There are other ways of doing the surgery including going thru the nasal passages into the brain. That was not an option available to us.
As with any surgery that opens the skull, Matt will have to be careful to avoid any hard blows to the head, especially in the area of the surgery. The plug that is removed, is not replaced and does not grow back. So, for your son, that means that his days of rugby are over for good. My son was also told by a recruiter that he was disqualified from being in the US military.
I'm sure that your son will have already been told this but just in case... We were told that once the pressure inside the cyst is relieved, the brain will NOT fill that space back in. He will always need to tell doctors and technicians doing CT or MRI scans that he had the cyst. Our son had a CT scan after the surgery where the tech did not know about the cyst. She completely lost her composure on seeing the results of the scan, blurting out a "did you know you have this" question that could have cost her her job had he not known about it.
Our doctor told us that a cyst like this is a very slow growing phenomenon. I would be very surprised if such a recent injury is the root cause of this cyst. Like I said, we have tracked Matt's back to difficulty in childbirth. If your son's developed and grew to this size so quickly, he must have taken a tremendous blow in that rugby game.
Regardless of the cause, watch for the normal signs of an injury to the frontal lobe of the brain. This area of the brain controls so many of the motor skills and (more importantly) reasoning and impulse. He would argue against me, but I have wondered if some of Matt's impulsive decisions that have gone against the lessons we tried to teach him might have been caused by this cyst.
Before you see your specialist, do as much research as possible and write down your questions (you won't remember them otherwise). I went in with a ton of questions and the doctor took time to answer all of them.
Please don't hesitate to contact me with any questions that I might be able to help you with.
We will keep your son and your family in our prayers as you go into this surgery.
Thank you so very much for such a quick reply, it has been very reassuring. We are still waiting the phone call from the specialist who is deciding on the best course of action to take for Robert. I'm sure that you're right about him having this cyst since birth - it's interesting that you think Matts might have been caused during childbirth as I had a really difficult time with Robert, who ended up after 24hours having a forceps delivery. I'm sure that if he hadn't received a blow to the head during his rugby match which triggered off the headaches and ultimately led to him having a scan, we would still not know that this cyst existed. Robert has his 2nd year exams in 5 weeks time, so we are wondering whether or not he will be able to carry on with them, he really hopes so -but as you say a break in studies afterwards might well be worth considering. The fact that his rugby days are over will probably be more devastating for him, but I'm sure in time he will come to terms with that. Has Matt had any problems since he had the cyst fenestrated - with headaches etc and can the cysts return. Once again, I'm so grateful for your reply, Sally.
Prayers sent.
I started to ask if there had been a problem with childbirth. What you describe in Robert's delivery is almost exactly what we went thru with Matt. Matt's wasn't as long but that is because of the problems leading up to the delivery. Mom spent the last week of the pregnancy in the hospital with complications. There was a previous attempt to induce labor a few days before Matt was born. The second time they attempted to induce labor the doc broke her water and said that one way or another there would be a baby. She went from 2 to 10 cm dialation in a couple hours. Then, she pushed for 4 hours before the doc discovered that Matt was turned wrong. Off to the delivery room for the forceps (salad spoons as Bill Cosby calls them), with the operating room on stand-by. Matt had a cone on the back right part of his head for months.
Interestingly, that cone would have compressed the brain into the skull (left front) directly where the cyst would be found some 21 years later.
Matt began having headaches toward the end of his 11th grade year of school. We thought he was just getting his dad's migraines. We chased it thru the normal medical channels until near the end of his first semester of his sophomore year in college. Finally he saw a doc who had seen the problem before and ordered a CT scan.
Based on the size of your son's cyst, it was getting to be nearly the same size as Matt's. Assuming that his cyst was caused by the problems in childbirth, he was probably due to start having the same headache problems as Matt did. You do understand that the brain has no pain receptors. The headache pain that Matt had (and probably Robert) was from the deformation of the skull bones and pressure on the sinuses and ear nerves.
These cysts are mainly caused when the channels that allow the circulation of the fluid in the cranium are stopped for whatever reasons. The fenestration reopens or creates an opening that allows the fluid to circulate again. It is possible for the new opening to close up. Some surgeons will put in a stint to keep the passage open. It depends on the preferences of the doctor and the patient.
When to have the surgery is based generally left up to the patient. If he can handle the pain and make it thru his finals, he may have enough time to recover during the summer and not miss a semester. Our mistake with Matt was in trying to have the surgery over the Christmas break and return to school in January. That was entirely too soon.
Matt does continue to have some problems with headaches. In his case he seems to be much more susceptible to headaches related to stress, poor diet, and/or poor rest habits. If I can make any after-care recommendations it would be related to that. Proper nutrition and keeping a strict sleep schedule seems to become even more important after the surgery. Stress related headaches seem to be much harsher as well.
Matt has never been a sportsman. His forte has always been music. He was a terrific talent on the clarinet. It got him over $4000 a year in scholarships. The pressure created by blowing, coupled with the concussion of the drums behind him was intollerable in the semester after his surgery. As a result, his scholarships weren't continued. Before he moved away, he had started getting back into playing but nothing like when he was in high school. I think that hurt his parents more than him but it still was hard on Matt as well.
Matt learned (and continues to learn) his own way about the limitations that having brain surgery puts on him. Matt learned quickly that any impact to the head is a real problem. He was knocked unconscious by a thrown pillow in the dormitory. Robert will likely have to learn many of those lessons his own way as well. The best any Dr or parent can do is to provide as much information as possible and hope that the lessons we taught them over the years will have stuck. Just make him understand that the hole in his skull changes how he has to protect himself.
A funny story here: A few days before his surgery, Matt called and said, "Hey dad, you remember all those things you told me I needed like I needed another hole in my head? Well, now that I'm getting that hole, can I have some of those things?"
It was a nice try, but we still told him no.
Prayers for your son Matt and your family
Thank you for your prayers but I think you are misunderstanding.
My son Matt had his surgery at the end of 2003.
I'm answering questions from SallyN. Her son is experiencing the same problem that my son had and facing surgery soon.
Please add Sally and her son Robert to your prayers.
Sorry for the misunderstanding. Prayers for Robert and Sally.
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