I would like to post my story because I have been told and I am finding out the my case seems to be the exception. Not because of severity or complications but because of speed and timing. Here goes - shortly before thanksgiving of last year 2010 I started having strange symptoms. Racing heart, over all malaise, vomiting on a regular basis,my sinuses were acting crazy. My head has hurt my whole life so yes I did have head aches but was not being debilitated by them. Everyone I saw was chalking each thing up to something else. Nothing was so severe that I was really presuming this. At thanksgiving I was starting to throw up a few times a week. But I had a couple of really bad days where I decided it was better to go get fluids and get it checked out. First trip to the hospital. They gave fluids and did admit me due to the fact that I was severely dehydrated and this had been ongoing. I was at a teaching hospital so this did seem to help in the care that I got. I did have a very bad headache so I guess it was enough to get their attention. After being there for two days a group of residents came in and wanted to spinal tap me right in my room as a teaching tool. I firmly said we were not going to do that!!! I have been a willing guinie pig before but not for a flipping spinal tap!! Ans although they thought this was important to r/o meningitis as soon as I said I wouldn’t do it I was released. Second trip somewhere between thanksgiving and Christmas - had the worst migraine I had ever had. So after two days suffering I decided to head back. This time I had an old fashion dr who loaded me up with pain med to “break the cycle” well the headache never really got better but I did go home throwing up profusely that evening. Still kept feeling really weird. On Christmas I had to cancel hosting my family for Christmas dinner (this is something I always do and really love to do) I slept all day (I do not nap -ever- unless I am sick and not really even then) my husband is now seeing a different person than he knew me to be. Third trip came about 2 days after Christmas. My head felt like someone was blowing up a balloon in my head. It hurt really bad but I knew it felt totally different than the headaches I had had my whole life. So I went in much more determined. I said no pain meds “I WANT AN MRI!!!” they did after a bit of arguing agree that I refused to leave and I was gonna really make a scene if I didn’t get it. The ER dr came in with the result she said everything is fine but you do have a 6mm chiari and she gave a brief description then told me to google it when I got home!!really?!?!?! I am in the hospital and you want me to google something?!?!?!so much for the “experts”! But I did start my research right in the hospital. I insisted on seeing a ns. I got all kinds of conflicting info but next thing I know was I was being admitted. I was happy because I felt that this was so different from the past that there was more to this than they really knew. Next day ns came and told me I would be having surgery but really considered it an incidental finding. Which I think is redilculous because I was looking for this answer I didn’t have a car accident with no symptoms before. I guess in someways ignorance on my part was bliss. I really considered it a minor skull surgery and was assured it would be easy and although it would not cure my lifelong headaches it was necessary. I did end up with that spinal tap - but because it was really needed and not for teaching purposes it was done with lots of medication in a separate area done with guided ultrasound. A bit better than the first time it was presented to me. Note to self and all of you - fight for you rights - there are some very bad tests that can be made much better - ask for all the options. It came back - no meningitis. Finally some good news!! I had the decompression surgery on January 5th. All went well. No dura patch was needed, they opened the space. Apparently tissue had grown across the opening and I had no spinal fluid flow - so that was removed. I woke up with pain like I had never known in my neck and the incision site but I actually had no headache!! I was able to walk to the bathroom with assistance a couple of hours after surgery. This may be tmi but I really don’t care - I am a 28 day cycle person. I got my period that night (day 12) men you can chose not to read this stuff - I understand!!
then it didn’t come back for 6 months. I am obviously sent home on a great deal of pain meds and all seems right. For days I am hurting but feel I am recovering as I should from my “incidental finding” I did move around quite a lot between sleeping - even cleaned out a few cabinets. I went back for my 6 week check and told my dr that I was still feeling pretty bad. He advised that I should come off the pain meds - so I listened. I tapered down but my husband was not happy because I was moaning and crying in my sleep. He said you are onbiously in pain don’t listen and take the GD pain meds until they run out!! ( can you tell he trusted and knew me :-)) I didn’t have to keep taking them after about another week. I literally woke up one day and didn’t have pain that was beyond Advil and I have never taken it since. After about another week that’s when I would say the weird symptoms started kicking in. All shaky, so tired, non functioning basically, hadn’t pooped in over two months and couldn’t get food past my lips. I was nauseated but it was more that I just couldn’t eat. I was living off milk. Called the ns where I was told “why are you calling me?” I don’t know why you are throwing up call a GI dr. Went back to the hospital many more times at his direction because this wasn’t his problem. He never once came to lay eyes on me even though he was on the grounds. He became defensive and evasive. He said none of this was related to the surgery that maybe I was just crazy? Very honestly if I took the quiz for depression I would have failed it terribly. Questions that are on these are things like - do you feel hopeless? 7 times to the hospital? Yes I feel hopeless!! Do you feel like a burden on your family? I AM a burden on my family right now!! You get the gist. But I can honestly say no matter how bad I would have failed it I was NOT depressed. I was very resolute in my decision and knew they would find more than that cm - and I was right!! My husband had even hired a private ambulance to take me to Hopkins and I said no this is minor I am staying here. Just trying to show - I was not a wreck about this I was happy. My husband was the wreck!! I do NOT think anything went wrong in the surgery. I just believe that although the correct steps were taken he had no idea what the after effects of this surgery were. He even had the nerve to say to me “it is people like you who are never happy as to why I will never perform this surgery again!” I was told I should give his name here to give as a resource to others but I can’t due to his after surgery mentality. And for the record I have an inside source and he performs 2-3 of these a week now. I may have been a perfect “looking” candidate to make his numbers go up to be known as a chiari specialist. I think he was as surprised by my result as I was but he was so defensive and critical of me that he will never be a specialist until he is better informed about what comes after you close someone up. I was terrible for 4 months couldn’t eat,couldn’t get comfortable, couldn’t do ANYTHING. then just as drastically as it all began it ended. I got up ate 2 whole roast beef sandwiches on keiser rolls and played 9 holes of golf!! WTF!!! I was good (comparatively speaking) for a week. Had another set back for a few days(at least I am not freaking anymore that I will never feel good again - I felt it) then got much better. Here is where I am now: I don’t feel like I did before all this started. My head has become barometer - forget the weather man I will tell you if it is gonna rain. But now my neck is hurting all the time. And I still have the heart beating hard, my vision is very blurry,and I don’t have nearly the energy to do things - I get them done just not the way I used to be. I lost a significant amount of weight during my little hunger strike but I have gained 30lbs in eight months. I don’t eat more,the lack of exercise is really nothing new but I do feel like I just sit way more than I ever have - I was an energizer bunny before. I don’t feel I can concentrate - more than reading a tabloid would be taxing to this avid reader. Back to my original thoughts - is all this normal? Do I look into these strange feelings I am having? And why with such a minor cm did I have surgery in under a week compared to most of you people who have suffered far worse symptoms and problems? Am I just lucky? Or am I expecting to feel to good now that I have had this. To be honest this site has educated me so much. It has definitely made me not as depressed because being sick I can handle being told there is nothing wrong when you feel so bad is beyond frustrating and it is reassuring to know that others have experienced many of my same complaints. Is it because you only seek out a support group when you feel like shit? Or does everyone feel like shit? For a rare disorder to have over 750 members all saying similar stories? Had anyone ever told me you will feel terrible for months and your life will never be the same that would have been the end of my medical exploration. No one told me so kept forging ahead. I rang up over 75,000$ in medical cost in one year. I woul love some input if you have had the patience to read all this crap with no good grammar!!thank you if you have gotten to this ending and thank you all for sharing your experiences good and bad.
Beeba,
I too wish I would have had this site 8 years ago when I had my surgery. I went through something very similar to you...going back and forth to my NS and hosptial/ER over and over and over. My NS kept telling me "I don't know whats wrong with you. Your surgery was a success and I've never had anyone w/ Chairi have a poor recovery like you." LIAR! Now I know that this is what a lot of Chiarian's post op stories are like! Thank God for my persistent husband and parents. They kept pushing my NS and really let him have it until he actually did something to help me (even though it took several visits). It certainly helps to have a supprotive family who believes you, even when the doctors try to make you feel like your fine and just a baby! And you are correct...I always say it...we are our best advocates-keep need to keep fighting for ourselves!
Thanks for sharing!!
:o) Monique
Let it out girl!:)
I was diagnosed in april 2003 and decompressed 3 months later. It did take about a year to figure out what was wrong "Just migraines" was the answer I was getting.
New here and looking for info to help my daughter. Thank you so much for your story. Her head pain is odd and not fitting exactly into any category. Nobody can find ANYTHING wrong with her except this Chairi. YOU ARE NOT ALONE and neither is she. I'll be sure to show her your post.