Hi all, hope you are having a good day that is pain free. For a little background for those who don’t know me of followed my through my three year process. I was diagnosed a bit over three years ago with chiari and blocked fluid. From diagnosis to surgery I never went home from the hospital. My herniation was fairly minimal comparatively speaking. But once that fluid blocked I really felt I knew the day it happened. So went in for what was to be a decompression. The dr I guess made an executive decision that my chiari was really not that big of an issue. So he ended up just unblocking the fluid restriction and closed. Obviously I was still extremely sick and gave it the year I was told it would take to recover. A year to the day I joined here. After a couple dozen appointments and no answers other than how great I looked I found that I was not the exception but more the rule. For a change bad news was a relief. I learned and read a great deal from the others here who had come before me so in a way that is what I am hoping this post may do for others. I would love others feelings on my opinion whether positive or negative. Sadly we are at a place in this condition that although things are changing at lightening pace we are the pioneers and what happens with us may determine what and how those that follow are treated. So on to second surgeon. I did find a great one. He validated that nothing had changed in my chiari and no room had been given and I needed another surgery. Best and worse news you get. This time surgeon opened dura allowing “breathing room” for cerebral fluid. Took half of c1 and a portion of skull. All this game much more room and better flow and allowed for chiari to retract completely. All good right? Not so fast there. I did recover much faster and did feel better in many ways and was far more functional but still did not feel totally normal and now I felt as though I really couldn’t hold my head up. For the most part I was functional but life took it out of me and I did nap pretty regularly and still knew something wasn’t right. Again I did what I was told - one year. Finally I got diagnosed with ehlers dahnlos and cervical instability. My upright MRI really left no room for doubt. I bent in half. So the next dr!! How can you hate and love your only hope all at once? Another surgery!! Oh yay!! Haven’t had one of them this year. This time went in removed old patch which my brain was kind of eating. Not sure if surgeon had ever seen it before but he is an expert so he handled a 100 leaks and patched. He fused my skull to my spine. This accomplished straightening my brain stem. Strengthening my neck and taking the pressure off my spinal cord in many places. This did fix many thing but I was still having severe pressure headaches. So 5-6 lost count spinal taps. A ct on neck that looked at veins of neck. Small and medium were not visible indicating possible clotting. I did know I had a clotting disorder anticardiolipin antibody. Basically my body forms small clots as an auto immune reaction to foreign bodies. Always knew I had this but honestly people really kept discounting its importance. So we just kept trying to figure out my pressure issue. Finally dr started discussing putting in a shunt. I know at times they are necessary but honestly it is another surgery and one that does not always come with great outcomes. So rather than jumping I started begging for blood thinners. I hit walls all over - finally surgeon reluctantly tried me. Within a day the pressure headache was relieved. Don’t get me wrong my neck and back of head still are not great but I can function with it. The pressure headaches were taking me out of the game. I have now been on them for almost a month and I have not had a pressure headache again. I may be at a good spot, I may just have not had the other shoe drop but I also haven’t had a shunt placed and that has for now been removed from the table. Finally did get in with hematologist and not only do I have one thing that I knew about I actually have two clotting disorders. Both do basically the same thing and both are treated with anticoagulant therapy. So after this very long post - if you have high pressure, if you have what feels like a pressure headache, or any family history of blood clotting or phlebitis. I strongly encourage you to have this checked before you jump at having a shunt placed. I would have done it and I still would have had the same problem. Obviously I am all for doing whatever it takes in the end to get relief and if you end up getting a shunt - I only wish you the best for relief. But if you have the choice and I think you need to fight for it - especially with ehlers dahnlos as it is very common. I certainly may not be at the end of this journey and my neck is still really hurting but I can function and scream at my kids softball game without my head feeling like it could burst. Soon I will be having another spinal tap to check pressure. And I will also have another ct to see if those veins are now visible. If my pressure is normal and there are veins there - expect a research paper about me. I literally was days away from having that shunt placed and I really had to beg to just try this no matter the risk I was more than willing to take it. I almost think he decided well either it cures her or kills her but at least she will stop calling me. Lol. But also I do have a dr that want answers and the best way to treat us crazy medical messes. So when the next person comes to him with my same complaint he may just try this to see if there really is a trend and it really can help many and avoid another surgery. Much of this comes brom my brain and nothing more than my experience and all based on how I feel today. So if things change I guess I will give an update. But for now I really want those who are considering a shunt or having pressure headaches to talk to dr about trying this before you go in again. And trust me - at last hospital visit on day one if he said I want to place a shunt I would have done it. But luckily he did also listen to my theory and was willing to give it a shot. And let’s face it they all want to be a hero and if he takes full credit for this discovery so be it. Sorry so long - no surgery fixes my ability to condense.
Beeba, what a relief to hear the pressure headache is gone. A month is a pretty good length of time, I am very hopeful!!! This goes to show that 1. It pays to follow your instincts and question your surgeon, and 2. The best place to learn about your condition is from those who are living with it.
Your strength is inspiring, and your willingness to share your experience will, bet your boots, help someone if not today, tomorrow.
I am AMAZED at how far reaching Ehlers Danlos Syndrome is. A clotting disorder… Who knew before but now we do. I don’t think I have high inter cranial pressure but I am going to make sure I know
and that I know if I am dealing with sticky blood. I pray that your ct scan shows normal blood flow and you are validated everyday that your theory about the blood thinners and High ICP is right.
It’s a breath of fresh air to have you back in action here, just seeing the little cat pop up makes my day. You are making progress with your healing - it’s great news, friend!!!
Love Jenn
Hello Beeba! Wow your journey is amazing and I love the way you became so self involved! Educating yourself really paid off and you became your own Dr. in a sense.It was brilliant that you thought of the blood thinner instead of surgery and it’s been working! I take my hat off to you your truly amazing! This type of story is encouraging to others to be pro active in our treatments! Thank you for this and I know it will help others take care!
Beeba,
I am thrilled that the blood thinners worked for your headaches! What a magnificently better option than a shunt!
I am so happy for you!!!
-Donna
Beeba, I'm glad you pursued the vascular issue. I have heard of other Chiarians (on Facebook) whose vascular issues caused pressure with the csf flow. Some have had to have their jugular veins opened, which also helped with the csf flow. Some on Facebook are beginning to use essential oils and that has helped them tremendously with the csf problems. I have a close friend who can tell you about this group on FB, but this close friend is not on here, she is only on FB.
My Codman Hakim VP shunt is 11 years and 4 months old with no revisions, for which I am very grateful for. Many of my friends have had multiple revisions and replacments no matter where their shunts are place in their bodies.
Thank you for sharing your story.
I, too, have EDS, clotting disorders (factor V & others), plus POTS, chiari & tethered cord. Dr. Henderson discovered the blood disorders while I was in the hospital after surgery. I have a significant medical history with about 10 surgeries and for some reason only dr. H suspected a blood disorder....& found it.
Although my experience is not the same as yours, I do notice that I feel much better when I am on blood thinners.
I do think Dr. H is noticing that blood disorders are co-occurring with EDS. Personally I don't think its a causation issue (as in I don't think EDS causes blood problems).. I think certain families collected them and they just run together...but that's a different conversation...
I realize how old this post is, but I am SO hoping you read this anyway. I in the process of getting all of my MRI’s and testing done for my pressure headaches. I have Factor V Lieden, so the first step was to get a brain MRI to look for clots. They did not see any, however, they did discover a 17mm Chiari.
After months of being told different things, I am really feeling like there could still be some kind of clotting that is preventing the right balance of fluid in my head. I am going this afternoon for a CINE MRI, but do not know if this just shows brain fluid, or if they can see blood flow also.
How are you feeling now… six years later?