PM zygy2...if u do not see a post on this thread from her.
Sooo... I called my neurosurgeon with these reports of fluid accumulated at my surgical site and a possible pitauatiry mass and that my PCP wanted me to follow up with him right away and he he just says everything is fine see you in a year without even seeing me when my headaches have been getting worse and my pupils are two different sizes. Im really getting frustrated.
This tends to be a common complaint post op, and many go to a different NS to find out what is going on.....
The trouble is once u have had surgery the only NS that will see u is a true Chiari specialist...so it can be harder to get help at this point if u r looking in ur area,....u deff may have to travel at this point to get help......
I hate to ask, but was ur NS a true Chiari specialist?
yes I was seeing dr Levi in Miami... I just dont understand. I put pictures up on my profile. can you maybe look at them and see if they are concerning to you as well?
I can look but not sure I will be able to tell ...someone like zygy2 since she had these issues would be better to offer insight....
I did look and did not see ne photo's.....??
Just finished looking at the pics and I would want a smarter Dr! Just my personal non-professional opinion but I would want to find another opinion. :) Just so you know Selma, I am sending messages to TinyRN... great way to find me when I have not been around for a bit, that e-mail notice is just perfect to wake me up and make me say hello again!!! It is so helpful when you can find someone that has had similar issues, especially when everyone seems to have such a different experience! Is there any mention of a syrinx?? It looks like one but I have no experience with this, I did not have one of these luckily! If it is a syrinx, pseudo and pituitary issue it kind of makes you wonder about high pressure issues??? No idea, it just rots when you have to have this surgery and then you go through all the crap and there are complications! It is such a frustrating thing at times and some dr's don't seem to want to listen! -zygy
Thanks for popping back on as I am not as familiar with this issue since I do not have first hand knowledge...like urself....I appreciate u coming back on and helping this member.
How are u doing?
I appreciate your help ladies. I labeled in the picture I do have a syrinx the original one was c1 to t2-t3 so this has improved but still exists. If you know anyone else that can look that may have had history please let me know. Or if any members reading the thread have had CSF leak or pseudomengiocele please take a look at my photos on my page and let me know what you think. thankyou
I would call the NS office back and say something like "I will not be dismissed with an obvious problem needing attention. I need to be seen now." (As I was asking for the name of the chief NS) Next, I would contact the chief NS. I would also schedule an appointment for another opinion with someone else. Like Selma said though it most likely will have to be with someone like Dr Oro. In the mean time you need to make some serious noise! Lisa
Thank you for your post Lisa ... Kinda hard to call back when everyone is gone for this weekend being easter weekend... Plus I work all weekend long. four days in a row 12 hr shifts (yikes) with this new news is going to scare me.... I def am going to get a 2nd opinion... im really worried its a leak or pseudo...