Well I survived the surgery and the hideously LONG trip home after my decompression! So I've have sooooo much to tell you guys! LOL just like anyone who just had surgery!
Fist of all, Just like everyone said Columbia St. Mary's is a beautiful hospital and almost everyone there was just as perfect as they could be... '
So this kinda started off a little rocky I think... I was scheduled for surgery at 12:30pm and was told to be at the hospital at 10:30am and I did just that.... I didn't actually have surgery until 5:30 and got out of surgery around 10pm..... He (Dr. H) was already in surgery with his first surgery and then had ANOTHER one after them and before me... UGH who the hell does surgery for 16hrs a day. LOL Anyways, I like everyone else woke up with a horrific headache and then dozed back off and every time I would wake up that damn headache was there.. NOW this is where it was getting very scary for me.. I was ONLY waking with I would STOP breathing.. I have sleep apnea (mild) and I would be having and apnea and wake up to breath and my head would just hurt sooooooooooooo bad I would just cry out and push the morphine button.. THEN, I started putting 2 and 2 together and the MORPHINE was causing all of this, so I begged to be taken off of the morphine. I begged the nurses and Dr H when he came in and I told them I was gonna die it they didn't take me off of it and they just thought I was silly. So in the short periods I was awake (THANK GOD FOR MY SIS) I talked to her about it and she watched the monitors and woke me up just to keep me breathing.. And, indeed the morphine was the culprit... My heart rate was in the 40's and my blood oxygen was in the low 70's and my sis pleaded with the nurses on my behalf and made one just watch and they took me off right away.. GEESH, after I got that morphine out of my system I actually could wake up and I felt kind of ok cept for the DRY MOUTH.. It was sooooooo bad, how dry my mouth was. So I was discharged on Friday 10-21-11 and I actually felt pretty darn good considering I had just had my head hacked open (lol).. And, as we stayed at Kathy's House (which is a SUPER great place) I started to feel worse and worse and worse. At my follow up appt on Tuesday 10-25-11 I told Dr H there was something wrong and that instead of feeling better each day I felt worse.. He then told me, that I probably have a CSF leak and then proceeded to tell me how he couldn't do the dura patch on me like he would everyone else.. He said because of some blood pooling under the dura he wasn't able to do the "Y" incision and had to do a straight incision instead and he also said that he is 99% sure he has his patients water tight, but in my case because of they weird anomaly he is "PRETTY SURE HE IS NOT water tight" at this time I'm a little PISSED why they hell would u close me up KNOWING I will have a leak. UGH, but whatever I just wanted to feel better..
So the ride home.............. OMG it was soooooo horrible riding 11 hours in the van.. I couldn't find the place to get a cervical collar so I just didn't get one (in my opinion it wouldn't have made the trip better or worse)... So most of the way was just painful with the bumps and stuff and then I started VOMITING for no damn reason.. I wasn't violently vomiting just every time I woke I would throw up.. Then FINALLY we get home and I go straight to bed vomiting each time I woke up and feeling worse by the hour.. My sis came over and took me to the ER, I was dehydrated so they gave me a bag of fluids and meds for pain and nausea and I went home.. I ended up going back to the ER that evening because I started vomiting soon after I got home. I wasn't able to keep anything down. So back at the ER they tell me to go BACK to Wisconsin to get checked out and fixed.. I told them there was NO WAY I could make it there and they agreed to have there NS check me out. I ended up getting admitted for pain control and uncontrollable vomiting, and 2 NS and a hospitalist decided I had Chemical or "aseptic" meningitis. They said that happens when something like blood or bone or anything foreign gets into the spinal fluid. But, they started me on steroids and they helped!!!! WOOHOO! Then they stopped them and I went to hell in a hand basket FAST! So they put me on a steroid taper. Where I take a large does of steroids for a couple of days and start to taper off slowly. So far so good! Except for I am extremely emotional. I just feel like crying all the time.. argh NO ONE wants to be a cry baby even if they did just have surgery on there head.. I was discharged on Monday 10-31-11..
So RIGHT NOW, I feel.............. well it changes frequently throughout the day.... I sometimes feel like the surgery was a waste and didn't do anything good, and then I feel like it actually may have helped.. at this very second I feel both,.. I'm having a lot of pain and stiffness and but yet I'm in pretty good spirits. I go to my GP tomorrow morning to get my staples out. I have 19 staples. Oh, yeah, he didn't take my staples out because of the CSF leak he is sure I have.. I'm glad to be getting them out, they are really becoming very annoying because of the crustys around them.. I know GROSS but true..
I want to THANK YOU ALL for all of your support! I truly apprecaite it! Just having folks on your side and thinking of you and praying feels sooo great! I do feel kinda like I belong to this ELITE club that takes having Chiari to get into! You all are GREAT and I appreciate each and everyone of you!
So sorry to hear about your rough time. Having the decompression surgery is not easy for anyone but you sound as if you really suffered! What is your doctor planning to do about the CSF leak? Did they do an MRI before you left to see what is going on? He should have kept you there and took you back into surgery to fix it! I would think if they thought you had meningitis, you should have been kept in the hospital when you got back home, too! OMG! Please keep us posted as to your progress and take it easy. Plenty of rest will be key in your recovery. Hang in there :)
I am sorry you had to go through all that and I hope once you are healed you see improvement. I too went to WI and had Dr.H do my decompression, the hardest part was driving home and for me it was about an 8 hour trip, its funny you should mention the sleep apnea because i never had it before until after my chiari surgery it alarmed my husband and sister, thankfully my husband never left my side the first night out of surgery the second night i did much better, The nurses told him that it is normal some people do have sleep apnea after surgery and on morphine drip.
I am curious has your local NS taken any scans of your head? what you discribed seem so fimilar to me and quite similar to what i was experiencing granted at one point i was suffering from thrush which was causing me to vomit, and then the medicine for it caused me to vomit and the ofcourse the pain medicine seemed to not agree with the vomiting and thrush either....but it also seemed to be a hydorcephauls clue which many had missed on me thinking the vomiting was causing me to not keep pain meds down causing me to dehydrate which then in turn was causing ALL MY PAIN...luckily at some point-after my husbands persistance and about 30 trips to a local ER on the 19th day post op an observant doctor read into my file and LISTENED to my husband and ran a scan which is when they found A-LOT of fluid on my brain i was in a bad way, and lucky to be there and alive and rushed in for emergency surgery.
I do not mean to scare you but I do want yo to be alert to how you are feeling and if something doesnt feel right keep on the doctors until you get treated. In the event you can not be your own advocate make sure someone is with you that can be.
but remember to take this time to rest and relax and do not over do anything, healing takes a long time...oh yeah and don't bend over too much oh and let me tell you the biggest thing i learned the HARD way dont move furniture of ANY SIZE or weight (lol)
Carla - Dr Heffez is planning on the leak sealing itself... He said he couldn't do the patch as he would on a normal person because I have this blood pooling under the dura.. So instead of a "y" incision he did and straight incision... (thats what he told me) He closed me up KNOWING I was leaking.. It used to be supper puffy back there but its not so much anymore.. So I do think that it must have sealed if NOT all the way, but maybe to a slow leak..
Lisa - I did have a CT scan done and all they told me was "it's negative" LOL whatever that means.. And the NS said everything looked good.. SOOOO I dunno, I still don't feel well, it may be because of the steroids that I am taking for the Chemical Meningitis, who knows..
Everyone - Dr Heffez called me the other after I sent an e-mail to the WCC letting them know how I have been doing since I got home.. Dr. H was an ASS when he talked to me.. I know now why the NS here just wanted me to go back to WI, it's obvious these surgeons have HUGE EGO's and can't have anyone say they did something wrong! So he talked to me about my symptoms and assured me that I DO NOT HAVE CHEMICAL meningitis and that all my symptoms are caused by a CSF leak and that I need to STOP THE STEROIDS immediately... When I asked why the steroids help, he just said they will help mask any side effects. So, NOW I have to get a lumbar puncture to prove meningitis (bacterial or chemical) or not... I have NOT stopped the steroids like he said to because I feel better on them, when they stopped them in the hospital (here) I went to hell in a hand basket and FAST, so I just feel like I should keep taking them so I don't start to feel worse.. I sure just wish I felt better, I don't feel like myself anymore.....I still have ALL the pains I did before surgery and some more..
I have to say whine all you want, thats what we are here for those of us who have been through surgery and set backs know how it is...I am sorry you are having all these problems.
I am curious how they figured you have menigitis without doing a spinal tap though, i thought they had to do one to be sure thats what it was? and if thats what it is i didnt think you could be home with that or well that atleast that was my understanding. Not saying your doctors there are doing things wrong but i am curious as to how things are happening.
i have to say when i was going through all i had been through Dr H was really very good about everything he was in contact with my husband and with the doctors here he even called me several times after i was finally out of the hospital and home for good i was in and out of the hospital for awhile (which took 6weeks after shunt installed), I do know the NS here had a much bigger issue about treating me tho' but being there was proof of no hydro before surgery in local hospital and records,there wasnt too much of an issue. i personally had a bigger issue with the local NS who didnt really want to tell me anything about the shunt and basically said its in your fine now..UMM NOOO!! took me a long time to adjust to that...not to mention i went from way too much fluid to way too little fluid --so brain went from one extreme to another which neither are very good for the brain. Anyway enough about me...
I do agree with Dr H about having a spinal tap done to find out for sure if you do have meningitis, the steroids may be just masking the symptoms and if the blood pooling is the problem there may be another way to help you that is much easier for you.
I am assuming that because all of my symptoms are in line with Chemical Meningitis (which is treated with steroids) and that I responded to the steroids they gave me, that's how they decided that's what it is/was without a LP.... I wish Dr Heffez was more receptive to me and my post op problems, but sadly he is falling short in that area.... ALL I want is to FELL WELL!!
just becareful that you dont fall into another trap. that would be even worse. what would dr h like for you to do other then the spinal tap? i am actually surprised he is failing in some areas I was really surprised to read some reports others had about him but all i can say is my experience with him was a pleasant one.
i think you need some more time to heal. how did getting the staples out go? oh when they did the ct scan did they notice any pooling like dr h said there is? i'd think that too would be noticed on a ct scan.
i will say though even though i am healed from surgery every day is still interesting.
