Around a week after my surgery I was brought back into hospital with severe pain, aversion to light and generally being very ill, I was brought to my closest hospital (Which unfortunately isn't very well versed with neurological problems) After being given lots of painkillers the doctor who was looking after me said that he was nearly positive it was meningitus but that he had NO experience with Chiari, no idea what had taken place during the surgery or how much spinal fluid had been taken so he did not feel comfortable doing a lumbar puncture. I don't know how you feel about that but I for one completely respected his honesty and really admired the fact he could admit that he didn't understand the situation enough to treat it. (Sorry about the side story)
I was transferred to a specialist neurological hospital (After the very kind doctor at the original hospital argued with the doctors at the specialist hospital for two hours because they didn't want to accept me) I was diagnosed with chemical meningitus and put on loads of painkillers etc. after around a week I was sent home but the problem is that the pain, sensitivity to light, neck stiffness and pain (I know I said pain twice but as we all know it's VERY painful) and the thing that I find really worrying is that where the part of the skull was removed swells up and feels like a sponge regularly and don't really know what to do about it.
My question is has anybody else been diagnosed with chemical meningitis after their surgery? I was also wondering is anybody else has the swelling where part of the skull was removed? The best way I can describe it is like a water balloon, it's accompanied by an excruciating headache and eye pain.
I would really like to know if anybody has had these symptoms too? I don't really know what to do about it because as I said I've never spoken to anybody who has Chiari/SM so I've never had an opportunity to ask anybody these questions :) Thanks for reading and taking the time to respond! I appreciate it!
Yeah it was the same hospitaI I had the surgery! I knew something wasn't right, I have tried telling numerous doctors about it but they all said it will sort itself out, I had the surgery over a year ago but it still happens at least every week, I have an appointment with my neurologist next week so I'll tell him about it (Again) and I suppose I'll just have to kick up a bigger fuss.
I was only kept in hospital for a week and during that time I only saw my NS once (The day I was discharged I think) and I didn't have any scans or anything. Thank you all for your help, I think I needed to hear someone say that it wasn't right! Time to make another appointment I think!
I just want to echo everything TracyZ said. I also had chemical meningitis after my surgery and was readmitted 3 days after I first went home. I was on IV antibiotics to get the meningitis under control and had a catscan done to make sure nothing else was going on. It cleared up in the hospital but they did not release me until everything was stable and my pain well under control.
I have never had the soft site swelling that you describe but I feel confident my NS would suspect a leak if I did. It concerns me that yours comes and goes.
I am not one for being overly aggressive but I would do everything you can to get in to see your NS or another one for another opinion. Once you are with him or her, document everything you are told and indicate that you have been told that this could be a leak and how do they know that this is not a potentially dangerous situation for you. Again, write down the answers as you get them. I hope you will find that this encourages your doctor to take the extra steps ( from a liability standpoint) to make sure that you are getting the treatment you need.
I am also not trying to scare you but I would not sit still with the explanations you have been given to date, especially if they are not from people who understand the condition and surgical procedures.
Be calm and respectful but be a strong advocate for yourself. Take another calm, respectful but assertive adult along with you if possible.
I had the same problem for me it wasn't meningitis it was a spinal leak and the mush feeling that you have could very well be the fluid collecting in that spot. Please check Intoo this. What kind o tests did they doc to diagnose the meningitis?
Thanks Kate, I'm going to bring my mam with me because she's good at being assertive but I just get upset. I've been worried about this for a long time but I just got shut down every time I tried to speak about it. They let me out of the hospital once they decided it was chemical meningitis and that it would resolve itself!
Kate said:
I just want to echo everything TracyZ said. I also had chemical meningitis after my surgery and was readmitted 3 days after I first went home. I was on IV antibiotics to get the meningitis under control and had a catscan done to make sure nothing else was going on. It cleared up in the hospital but they did not release me until everything was stable and my pain well under control.
I have never had the soft site swelling that you describe but I feel confident my NS would suspect a leak if I did. It concerns me that yours comes and goes.
I am not one for being overly aggressive but I would do everything you can to get in to see your NS or another one for another opinion. Once you are with him or her, document everything you are told and indicate that you have been told that this could be a leak and how do they know that this is not a potentially dangerous situation for you. Again, write down the answers as you get them. I hope you will find that this encourages your doctor to take the extra steps ( from a liability standpoint) to make sure that you are getting the treatment you need.
I am also not trying to scare you but I would not sit still with the explanations you have been given to date, especially if they are not from people who understand the condition and surgical procedures.
Be calm and respectful but be a strong advocate for yourself. Take another calm, respectful but assertive adult along with you if possible.
The only test they did was a lumbar puncture.. that was all. I was too sick to ask competent questions. I remember asking if that's why the back of my head was all soft and he said "More than likely I'd say so"
lesley said:
I had the same problem for me it wasn't meningitis it was a spinal leak and the mush feeling that you have could very well be the fluid collecting in that spot. Please check Intoo this. What kind o tests did they doc to diagnose the meningitis?