So spent yesterday in the er at Barrows in Phx again. But this time we never even saw a doctor after 5 hours. My son bent over and had clear fluid running out of his nose which continued dripping for some time. Later it happened again. Called his neurosurgeon (who had fenestrated his cyst) emergency number and was told by her "partner" (after once more refusing to allow us to get a message to her) that my son needed to go into the er and not wait till Mon. for our neurosurgeon as this was most likely a csf leak. So we go and wait in a triage type area after being seen by a nurse practioner who agreed that a ct scan was a concern since my son has had so many (one last week) and mri might be a better option. However had to be ordered by a neuro and 5 hours later we are told they are so busy my son won't be seen by one till tomorrow in the er. By this time my son's head is hurting so bad (which after the nose drainage he did not have a headache for the first time since surgery -) he just wants to get home to try a med he already has. Were told we were told to come into the er as the "doctor was covering his butt" even tho he represented himself as being a "partner" of son's neurosurgeon and stating er is where they want my son. So my son continues to suffer on a daily basis, much more so then before his cyst burst requiring emergecy surgery (even tho another neurosurgeon from Barrows was aware of the huge size of the cyst after seeing mri and we were calling daily trying to get appt moved up as my son was declining daily). We have been asked several times at Barrows by other neuros why the surgery was not performed when the cyst was first discovered and intercranial pressure symptoms were present. We don't have an answer. Today we are going to try and start with a different neuro institute hoping to get some semblance of medical care. ISo now that I am done venting, I guess the answer is to keep pushing for good medical care no matter where you are in this journey. Hopefully we can find some for my son who is more than ready to give up at this point.
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So spent yesterday in the er at Barrows in Phx again. But this time we never even saw a doctor after 5 hours. My son bent over and had clear fluid running out of his nose which continued dripping for some time. Later it happened again. Called his neurosurgeon (who had fenestrated his cyst) emergency number and was told by her "partner" (after once more refusing to allow us to get a message to her) that my son needed to go into the er and not wait till Mon. for our neurosurgeon as this was most likely a csf leak. So we go and wait in a triage type area after being seen by a nurse practioner who agreed that a ct scan was a concern since my son has had so many (one last week) and mri might be a better option. However had to be ordered by a neuro and 5 hours later we are told they are so busy my son won't be seen by one till tomorrow in the er. By this time my son's head is hurting so bad (which after the nose drainage he did not have a headache for the first time since surgery -) he just wants to get home to try a med he already has. Were told we were told to come into the er as the "doctor was covering his butt" even tho he represented himself as being a "partner" of son's neurosurgeon and stating er is where they want my son. So my son continues to suffer on a daily basis, much more so then before his cyst burst requiring emergecy surgery (even tho another neurosurgeon from Barrows was aware of the huge size of the cyst after seeing mri and we were calling daily trying to get appt moved up as my son was declining daily). We have been asked several times at Barrows by other neuros why the surgery was not performed when the cyst was first discovered and intercranial pressure symptoms were present. We don't have an answer. Today we are going to try and start with a different neuro institute hoping to get some semblance of medical care. ISo now that I am done venting, I guess the answer is to keep pushing for good medical care no matter where you are in this journey. Hopefully we can find some for my son who is more than ready to give up at this point.
August 9, 2010 - 8:13amThis Comment
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