I believe in miracles. I went to my endocrinologist, and he had a new Physicians Assistant. She had worked for a brilliant neurosurgeon who happens to practice in Las Vegas and treats a condition called Chiari Malformations. She looked at my history, and thought it would be worth a call to her old boss to see if my set of odd symptoms fit into this chiari pattern, which they do. Two days later, I was in front of the neurosurgeon. Two days after that I had the advanced and very technical MRI that showed significant pressure increases in my brain and a congenital brain defect called hypoplastic posterior fossa that put pressure on many parts of my brain and may have had a key role in my pituitary gland failing. At this point, the surgeon, Dr. Seiff, decided that I was a candidate for this surgery.
His first question was if he could get rid of the headaches and neck pain would I have brain surgery? After an unequivocal and quite tearful yes, I was shocked at how fast things progressed. My insurance approved the surgery almost immediately, and by chance Dr. Seiff explained the surgery to me and my son in a very kind and not scary way. I scheduled a pre-op appointment, which my mom and husband came to, and which was much more detailed and scary. Then to make a short story shorter I had brain and neck surgery within a month. I have spent the last 3 weeks recovering, and feel better than I have in years.
So, a little more information. Chiari malformation, or hypoplastic posterior fossa is a congenital condition where the area around the brain stem at the base of the skull forms too small or at too steep of an angle putting increased pressure on the brain stem and increasing the pressure of the cerebral spinal fluid within the brain. It can cause a series of weird symptoms. In me, it made my arms, hands, and feet numb and cold, caused severe headaches and neck/shoulder pain, and made me stand with my head forward. I had visual issues, memory issues, and symptoms of MS to name just a few. The surgeon also told me that the area of my skull that he removed showed significant wear, indicating that this is a condition I have had since birth, and that the pressure in my brain was intense. Most of that is gone. I have not played the piano in two years because I had lost so much control of my hands due to neurological problems that my doctor’s have spent the last 9 years trying to define. I have spent my whole life in pain in my shoulders, arms and neck. That pain is mostly gone. I still am struggling to recover physically from surgery, because my pituitary failure complicates everything, but the pain that used to be there is just healing pain now, and it is easier to manage than the pain I was dealing with before.
What is most unusual is I don’t feel like I had brain surgery. My mind is muddled from the medications, and they make me sleepy. I wear out fast, and am sore where the surgeon basically took apart my skull and put it back together the way it’s supposed to go, and I have to take a lot of medication to prevent infection and control pain so that I can heal okay, but I am ready to do all kinds of crazy things. I want to teach again. I am ready to adopt. I am hoping to turn my blog and efforts there into a marketing and media business. I am literally counting the days until I can play with my family physically. I want to join the YMCA, swim, walk, run and play with my son. I want to sew, cook, clean, and do all the things that I was too tired and sick to do 3 weeks ago. The hardest part of this surgery is waiting to heal all the way so I can do what I want to do. I know it didn’t cure everything, and that my health will always be a concern that I deal with, but the difference is huge.
After years of just plodding along, desperately seeking medical answers, I found a world-class neurosurgeon in my backyard who had answers to many of my problems. He’s a great surgeon, and has a fabulous bedside manner. His employees are loyal, and he is a doctor who is pioneering the diagnostic criteria and method for this surgery. I don’t know why he’s in Las Vegas, but finding him was the best thing that has happened to me since I had my little boy 8 years ago. I look forward to all the benefits to come, and to becoming more of the wife and mother that I have always dreamed of. I knew he was the doctor for me when he told me his goal was to get me playing the piano again. Two years ago, my medical condition deteriorated to the point where I could no longer play, and that was devastating. I can play now. I’ll have to work to regain my former skill, but at least my hands are sensitive and responsive. I have warm hands and feet for the first time in my life, and I have hope. I didn’t realize how much hope I had lost, and how important that hope was until it was given back to me in a striking day in February. Not everything is perfect, but hope is a powerful force, and this surgery has already changed so many things. I would do it again in a heartbeat, even with the risks and the fears. It was not an easy surgery, and the recovery will still be long. I may not see the gains that I want for years, but there is hope now, and my body is already better. Now to patiently see what is to come. 🙂
6 thoughts on “So I had Brain Surgery”
I am so happy that you are getting better! I wish you to do all those things you haven’t done in a long time. I wish you nothing but the best and do try to be patient so everything heals properly. I am sending you lots of love because you are a brave woman 🙂
Thank you so much for your kind wishes. I am doing better and healing properly. I am struggling with the patient part. The surgery was hard, but I was fortunate to have a great surgeon, and a supportive family. I was also lucky that they were able to schedule it quickly so I didn’t have a lot of time to over think things and worry. Thanks for your comment!
This is wonderful! I am so happy that you found a terrific doctor and a diagnosis. I have never heard of this before, but it is great that you are recovering. Best wishes to you!
Thank you Maryann! I would recommend my doctor to anyone who needs neurosurgery, or spinal surgery. He is amazing, and people travel from all over the country to have him do the surgery. I had no idea that Las Vegas had a good neurosurgeon, and had been told to go out of state for treatment. I was lucky/blessed that I was able to find him and have him do this surgery. I am going to have to get online and promote him to all the people who are like me out there. Not many doctors will do this surgery, but he will, and he is great at it. His staff is also amazing, and I have never had better follow-up care. Chiari is becoming more and more diagnosable as technology catches up to us. Before it was a really hard diagnosis, but new imaging technology allows doctors to see the defect and there is new radiological rules for measuring pressure and what not that allows doctors to determine who would respond best to surgery. I love the new technology, and feel so much better. I can’t wait to see what happens when I am “fully” recovered.
I am so glad you are doing better. I know several people with Chiari, one is a good friend, so I understand what it is. It can often happen with Ehlers Danlos Syndrome, which is what I have, so I have to keep an eye on that. I wrote to you about EDS before so you may remember me. If you have further problems, I would look into EDS, but I’m glad you’re doing so well with the surgery. Chiari can be very debilitating. I’m glad you found the source for your headaches and that it was taken care of so fast.
Susan, you are a loyal reader, and I love having you as one. Thank you! I was lucky that it was fast, and I am fortunate that I was able to find my surgeon. I haven’t had a chance to look of EDS, but I think that is mostly because I am afraid to find something else that might be wrong with me. I hate medical problems, although I have my share of them. I am sorry that you have to deal with this too. It isn’t fun to be sick in bed all the time. People always tell me that they wish they could sleep for a week, or rest like I have to, but it is only fun when it is a vacation, and you do it because you want to. When you feel sick and have to sleep just to function a couple hours out of the day, it isn’t fun. It isn’t relaxing, and you don’t feel better and get to do all those wonderful things that other people do when they are done resting. I have discovered that healthy people cannot possibly understand chronic illness and sometimes I can be patient with that, and sometimes it really bugs me. I wish we could just touch people and for a moment they could understand and feel how we feel. Feelings, and even pain are so hard to convey to other people, especially doctors and is so easily misunderstood. That has also been a huge problem for me in this journey. I hope you have had better experiences, and if you know of any great new friends that can support me on this journey, I would love to “meet” them. My personal e-mail is email@example.com I would love to find you there, or on facebook. It would be nice to have another friend who gets all of this. They are so few and far between.