Tomorrow is exactly 4 weeks post decompressive craniectomy for me (well, it’s 2AM here in Oklahoma so technically it’s today I guess…) and I’m overjoyed to report that so far, I haven’t had a single “normal” migraine for me yet! What I mean is, even though I have pain in my head, it’s much different than pre-surgery headaches. I talked with my surgeon about the pain I’ve been having while changing positions or moving too quickly and he suspects I have a minor leak inside the incision area but that it’s nothing to worry about. He says it is common and usually corrects itself, and that my body is also trying to balance out the amount of csf I have since I lost a lot during surgery. What he says feels right. However, when I showed him the strange lump that appeared next to my incision, he more or less dismissed it. The lump started forming a few days after leaving the hospital, and has slowly grown in size from pea size to marble size. My NS told me it’s possibly a lymph node but he isn’t sure and told me not to worry about it…
What I AM worried about though is that I’ve gained almost 10 pounds since surgery. That’s a HUGE deal to me. I was already insecure, but I had finally come to peace with my body and now I feel the confidence I worked so hard to gain slipping away. I can’t seem to stop eating! I don’t know why! I used to be much more energetic and moderately active, but now I feel so restricted because I still wear out so easily and most exercises give me pain. I had FINALLY come to accept and love my 5’6", 140lb (~1.7m, 63.5kg for anyone who doesn’t use the American system and I hope I did that right!) frame and now… I no longer feel like I have acceptable curves. My once-flat stomach has a little puffiness and my thighs have grown A LOT. As if they weren’t big enough before.
I’m not fishing for compliments, I just needed to vent, and I know that worrying about my weight seems so shallow but I have a tendency to pick one small thing and worry about it to avoid worrying about major things. For example, before surgery I spent HOURS worrying about my best friend starting to smoke instead of worrying about surgery, graduation, and every other major event. So now I’m worrying about the weight I’m gaining… How can I exercise without pain or wearing myself out within minutes? Will losing this small amount of weight be easy? A registered nurse told me that once I’m more healed, the weight will drop right off, but I’m doubtful. This was supposed to be the most fun summer of my life, right before college, and for the most part it’s been spent on my couch in a terrible amount of pain or sleeping. I sleep SO MUCH now that I’ve taken everyone’s advice and stopped overdoing it. Wish this would go faster! Thank you for your patience and (hopefully) understanding and I apologize if I sound like a whiny teenage girl. I think I can get away with it occasionally… I DID just have brain surgery, you know 
Your not being "whiny" kiddo, Most of us women spend our whole life worrying about our weight! I would think that since your body is still healing from a major surgery and you are sleeping alot, that it would cause your metabolism to be very slow.Once you start feeling better and become more active your metabolism should speed up. You also might want to check with your doctor or pharmacist and see if any of the medicines you are taking cause weight gain. You are a very beautiful girl!
Hi…
I can so understand you!!! I am struggling with insecurity, but mine is focused on my darn face…wrinkles!!!
It doesn’t matter what others tell us…it is how we feel about ourselves…throughout my journey , I have learned that I need to accept me for me…it sounds like you have worked through this issue well…congrats!! It seems like you hit a bump in the road since surgery with the little weight gain…you will drop these few extra pounds in time…and it will come off fast…some of it is most likely water weight, too.
Please give yourself a break too…you are only a mth post op…you are doing great.
This is the place to share how you are feeling…both body and mind.
Thank you so much for your openness and honesty.
Keep us posted on how you are doing.
Thank you ladies so much! I feel like every time I post, I get so much support and so much off of my chest at the same time. I’m going to start playing around in the little pool my family has, walking around it and such in the hopes that those unwanted pounds DO melt off as quickly as you say that they will! I don’t want to put too much pressure on myself though. I’m kind of a hypocrite- I tell my mother, my best friend, and my aunt every day almost that they’re gorgeous and beautiful no matter what weight they are, and they’re much bigger than me. I don’t see them as fat, I think they’re fabulous regardless of their size. But me? I judge myself critically and it took me years to adjust to being a fuller figured 140 pounds instead of my old 120 pound skinny frame. If I could just get back to 140 even, I would love my body again, big thighs and stretch marked legs and all! I felt attractive then, curvy and such. Well, as attractive you can feel when the only boys showing any interest are crazy, high, or plain old weird! Haha… But I digress.
Lori! You shouldn’t feel self-conscious of some wrinkles! I believe that they’re like our surgery scars— we should wear them proudly, as they’re marks of the journey we’ve been through in life. I think wrinkles on a pretty woman only make her more beautiful 
I hope I can remember that when I get wrinkles one day…
I fully intend to keep involved with this site and to keep everyone updated on how I’m doing. Today, I had less pain so I was able to really get into my cleaning and I’ve finally made it a whole day without napping! An amazing feat, for me
Hi..
So glad that your pain was less today...don't over do, though!!!!
Keep us in the loop as to how you are doing!
My daughter had decompression surgery and the same kind of complications. After visiting the ER we were told that she had a buildup of csf fluid. Please past that by your doctor! Hope this helps!
I am 2 weeks and 4 days post op. Dr. Heffez from WI Chiari Center has instructed me 1-2 HOURS activity then must lay flat for 30-60 minutes. He has all his patients do this and I think it is great advice. I think I only do it until 4-6 weeks. My lovly memory and all I cannot remember all the reasons but it has seemed to help. Also I sleep on a light blanket folded once instead of a pillow as instructed. Head not above heart while laying down is the goal. It has something to do with csf im sure. Glad to hear from my fellow Okie!
Hello LaurLea,
First off, what parts of Oklahoma? I live in California, but spent my childhood summers and adult vacations in Heavener, Oklahoma with my grandparents before the passed.
I am sorry to hear that you are going through this. The CSF leak that you have is typically called a pseudomeningocele. I had one of these after my first surgery. I would be pressing your neurosurgeon to go back in there and fix the leak if the lump continues to get bigger - or get a 2nd opinion if you are not comfortable with your neurosurgeon. The body can fix the leak, but most of the time, it takes way too long to do so and causes you more problems in the long run. Also, the symptoms (since you have a leak that shows in the form of a lump - you know the problem) are typical of a pseudomeningocele. Loss of weight, no energy, headaches, etc.
Here's my blog (it is really old, but I will be updating it next week). If you want to talk to someone please send me a message. My wife and I have had many battles with Chiari are looking to help as many people as we can.
http://jeffmayo-yurek.weebly.com/index.html#/
Best of luck to you,
Jeff
Is it really more likely that this strange slowly-growing lump is actually csf buildup instead of “possibly a lymph node” as my surgeon suggested? I do like my surgeon… But at my follow-up appointments, he kind of speeds through the medical part and then spends a half hour telling me stories about his famous friends. He’s a nice guy and I am very pleased with my surgery, but maybe he isn’t so great with the after stuff? He even sort of ignored me when I asked about my painkillers the week after surgery. He told me to rest. His head nurse, bless her, got so mad when she found out! I’m pretty sure she berated him!
Jeff, I live in Southwestern Oklahoma. I just looked up heavener and that’s on the total other side of the state! I’ll bet it’s green there. The farthest east I’ve been since I was too little to remember is Talequah, and it was soooo gorgeous!
Lyanna, I’m so happy to hear from a fellow Okie too! I’m hoping you’re doing well! It’s so awesome that you finally got surgery too. I’ve been much more active than your doctor would like, but I’ve taken to napping at the first sign of too much pain. I have a little travel pillow that I sleep on, but most nights I lower my head even more onto a folded fleece throw until I’m nearly flat. Much more comfortable!
Hi Lauralea! I’m 5 weeks post op from my decompression surgery and totally understand all you’re going through. I had a similar issue with pain on one side of my incision but with no lump. But the pain changed with position changes and my surgeon had me go have two more MRI’s just to be sure everything was ok. The radiologist here where I had my MRI’s read my brain MRI as me having a small pseudomeningocele but when I sent the scans to my Chiari surgeon in NY, he reviewed them and said the radiologist had confused what was a Seroma (old blood being reabsorbed into the muscles) for a pseudomeningocele (CSF). I would just watch it and if it gets worse then let him know. As far as the weight gain, I weigh more now than I did before my surgery but you have to remember that we are recovering and are (or supposed to be:) less active right now. All my doctors, including my surgeon, have told me that I need to be walking everyday. Walking is supposed to be great therapy after brain surgery. My PCP told me last week that I should be getting in an hour worth of walking a day. My problem has been depression, so it’s been really hard for me to get up to do anything. I started taking my prescription Vitamin D again and also my multivitamin and this week has been my best week so far! Like so many have told you, I’m sure, and also me, it does get better. That is awesome that your headaches have improved! Please update us with your progress!
Ok, I just read your post about it slowly growing. If it is growing and causing pain, I would definitely check back in with him and maybe even ask for a scan just to make sure it isn’t something to be concerned with. Just my opinion though.
It’s so great to have people who are going through this with me! I don’t see how anyone can do an hour of walking… I’m active for more than an hour every day, whether it be cleaning or doing little walks around my house so I hope that counts! Maybe if I walked more I wouldn’t have this weight gain problem. I understand ALL about the depression, too. I’m 18, and I’ve been surrounded by family members who have chronic depression my whole life, and thanks to circumstances wayyyyyyy too long to explain, I’ve suffered with it myself since I was 15. I’m bipolar 2 as well with a high tendency towards depression, which accounts for most of it these days. I’ve been on antidepressants since 2011 and I’ve really done much better. The lump isn’t causing me pain that I’m aware of, but I am in pain pretty often so I can’t be certain it isn’t at least partially to blame. My doc told me he doesn’t want to do any scans or more testing and to call if something new happens so I’m not sure what I should do. I’m just working on this whole “taking it easy” thing for now!
Depression runs in my family too and I have been on Welbutrin XL for quite some time for anxiety. I definitely think that when you are predisposed to depression, then you add a brain surgery you most likely will have a harder time dealing with it during recovery. It definitely helps to have people that are going through the same thing with you to talk some of these things through with. Taking it easy sounds like a good idea.
It really does help to have people with similar issues to talk to. I’m at a good place for the most part, and this recovery is slow and annoying, but at least I have all of you to listen to me vent
My dr. gave me medicine for my lump and told me to keep an eye on it and if it continued to get bigger or hurt to give him a call...the medicine seemed to work...I also had about a 10 pound weight gain...but I think mine was back when I had my back injections in 2012...then I had knee injections...and then in April 2013 I had my brain surgery...all the Dr. say it is because I am inactive and that really I am ok...the funny thing is that my eating habits have not changed....I am 4'11 and used to weigh 98 pounds, now I weigh 120 pounds, which I really don't like...Dr. also wants me to walk at least 1 hour a day or ride a stationary bike...but I also have arthritis in my lower back and knees...which also gives me trouble...I am 11 weeks post op now...and I know how you feel about being tired of not being able to do nothing...just hang in there girl...and we will make it one day :)
Hey LauraLea, I wish I was diagnosed at your age. I know thats not what you want to hear, but I have suffered through symptoms my whole life before I was diagnosed at 43! I have always struggled with my weight,up & down,but since these new symptoms started, I am so inactive, not to mention the 1st month after my diagnosis, when i turned to chocalate for comfort ( & im talkin a lot of chocolate). I know exactly where you are coming from, but the way I look at it, if untreated,you were bound to get less & less able to be active, suffer permanent problems, & live in pain. As much as this was "supposed" to be the best summer, concentrate on recovery, even if that means following up with a new Dr., & when you are ready, I have no doubt you will make up for this summer. You are so young, you have so many great summers ahead! FYI, I just learned the hard way, that the sun is excruciating for me on my left side due to the nerve pain. It was bad enough I wont go to the beach due to my weight gain, but now enjoying the beautiful weather in my backyard is very limited! outdoors is my favorite thing! Just really trying to say that if you are looking for an up side to this crappy experience, maybe its that you were diagnosed young & have plenty of time to recover & put this behind you. Good luck with a speedy recovery, & PLEASE dont hesitate to look elsewhere for after care (no matter how many doctors you go through) untill you find someone who gives you the time & care you need!!!
BookAngel, I am so sorry that you’re in so much pain and that you aren’t able to exercise! I can’t imagine having arthritis AND Chiari. I have my fair share of back problems, but physical therapy has sorted those out for the most part. I’m going to press my doc for scans- I don’t see them again until July 19th and they’re 2+ hours’ drive from where I live, but if he calls in the order then I can go in for whatever testing at a hospital closer to home. Maybe you could try water exercise! I just thought of that since that’s been what I’ve tried to do (my family bought one of those little 14 foot pools, really shallow)!
Jessica, you’re so right on so many levels. I’m grateful that I was diagnosed this early. I’ve been fighting migraines since I was 8, and at 18 I was close to my wits end! I can’t imagine trying to function as an adult with all of this. I applaud all of you who have! Because of finding it at this age, my insurance paid for everything (my family is very poor… We wouldn’t have even been able to afford a regular doctor visit, much less a neurosurgeon and surgery w/o insurance), and I should be able to have a normal, improved life after this stinkin’ recovery is over. I know, it’s a long process, but I’m not known for my patience! I really feel empathetic to you, though, about the outdoors. I love to be outside exploring, or inside cuddled up with my 6 dogs. Maybe you could try wearing a sun hat to shield yourself from the nerve pain! And one-piece swimsuits are extremely chic right now so you should take advantage of that and go rock the beach! Have the confidence! You could try changing your hair color drastically and pretending that it gave you a whole new life attitude; that’s what I did a few years back in a severely dark depression- I decided out with the mousy brown-haired girl who hated herself, and in with the fiery redhead who kicked butt and took names… In style Maybe that’s silly, but it really helped me overcome my insecurities. I’d do that again now, in fact I already bleached the bottom of my hair and dyed it hot pink, but I just want to feel better enough to get up and try to be active. Funny how it took gaining 8 pounds to realize I was perfect just the way I was before!!
You really sound like some1 who appreciates life! I am yet to have my surgery. I too am lucky to have insurance, but it is so crappy, that I cant find an NS worth a crap who takes it! You are a girl after my own heart with the 6 dogs! 4 was the most I have had at once, have 2 now & they are my world! (if i could, i would take every dog from the shelters) I will definatley figure out a way to enjoy some outdoors before my surgery, believe me, my quality of life has sunk so much, it has truely taught me to appreciate the tiny things, like a nice day. & as for the hair suggestion, I have been playing with color so much, I have thin crappy hair, so i treated myself to some colorful extensions ( i forget im not a kid sometimes!), I figured what the heck, before they shave my head! gotta have some fun! As for depression & insecurity, another thing I have always struggled with, as im sure a lot of us women do, but if you ever need to talk, feel free to message me, I understand. I am so grateful I found this site, it has helped me so much in every way, the information & the support. just keep thinking about how much more you will enjoy life after recovery, minus all the pain!! keep with us, would love to know how you are doing!
Hi there, my son had 2 decompression surgeries when he was 1 and 2 years old. Both times he got the pockets of fluid at his incision site and leaking csf which lead to meningitis infections and then revisions. I would be careful with the lump on yours and if it doesn't go away soon or you start feeling really sick and fever...go back to your doctor. My son also gained a lot of weight right after surgery, he was on a steroid. That will do it every time! I don't know if your taking one, but if you are that would be the culprit. He was always hungry on it and ate so much plus steroids make you retain water. Once he was done with them, the weight fell off. It also took him a long while to get back to a regular routine and he still gets a bit more tired out than other kids his age, he is now 3.5yrs. Hang in there!