Aa
Help, I need advice
As you all know I had Chiari decompression of Feb 9th, same day as Melody and same day (not year) as Cash. I developed a pseudomeningocele and am having a follow up MRI sometime in April to see if it has grown. I started to get fevers again.. They are getting as high as 101, and they keep breaking then coming right back soon after. My head is hurting so bad that even my eyeballs hurt and begin to water. The area behind my left ear hurts so bad, it reminds me of the pressure/crushing pain I get at the base of my skull where my incision is at. I even get pain at the front of my head above my temple. This is very new. It feels like a bruise when I touch it, I noticed this a half an hour ago.. I was stunned at how bad it hurt when I touched it. It feels like someone beat me in the head with a baseball bat.. Should I be concerned? Is this typical of having a pseudomeningocele, or just a part of the healing process. Also, if I move my head even the slightest to the left, it feels like my incision is going to rip open.. Is this common with people who have EDS? Every single incision I have has developed into a keloid. I know it isn't anything to worry about because they are benign but do people with EDS develop keloids? I was never tested for it... I think I should be, so how does the doctor test for it.. I know if I call the doctor with my symptoms they will send me to the E.R. and I have already been there several times with these symptoms (except the bruising sensation at the temple) and they always send me away telling me its PROBABLY nothing. Dr. E is booked until May, so I cannot go and see him anytime soon..
Any suggestions..?
Any suggestions..?
Glad to hear that you called your pcp. I sure hope that you start to feel better soon. This is too long to feel so ill. All my wishes honey :)
Thank you ladies for all of the heartfelt advice. I left a message for my PCP to call me in the morning, as he did tell me to contact him if I couldn't get rid of my fever. I expect that he will order an LP and send me to the hospital. I am tired of living this way, I need to get better for Jade.
I am going to sleep as much as possible today because I feel so tired
Thanks again,
Krystal
I am going to sleep as much as possible today because I feel so tired
Thanks again,
Krystal
It is my pleasure to help any way I can. Recurring temps are worrisome. I do urge you to get medical attention as soon as possible. I am not saying with absolute certainty that you have meningitis, but you did have brain surgery and you do have a pseudomeningocele.. It does suggest an infection of the CSF, and you do not want to play around with that. If you start feeling confused with fever and vomiting you do need to go to the ER immediately. I don't really like the idea of you waiting until Monday, but the decision is yours. I know you are skeptical of hospitals and rightfully so, you have been put through so much nonsense. I would hate for it to be bacterial meningitis that has gone untreated. You have got yourself a good looking family, your daughter is beautiful. She needs her mommy to be as healthy as possible. Is there a different hospital you can go to? I know you have been mistreated by one certain hospital.. I am just thinking that if there is a hospital near your location.. it would be so worth it to go and be evaluated by a doctor. Does your PCP know about your recurring fevers? How about your surgeon? I am confused as to why they aren't taking you more seriously, especially if you present with these types of symptoms during office visits.
If you do wait until Monday, be sure to stay as hydrated as possible. If you are running fevers it is best that you stay away from your young one. Usually when your running high fevers you can be contagious. Who knows what is causing these symptoms and I would hate seeing your young one getting ill. The incubation period is about 48 hours after your fever breaks. However, your fevers break and come back... I wish I was near where you are at, because I would drag you to a hospital ;)
All of us care about you, hun! That is why we are so adamant about you receiving immediate care.
PM me if you need.
~VQ
If you do wait until Monday, be sure to stay as hydrated as possible. If you are running fevers it is best that you stay away from your young one. Usually when your running high fevers you can be contagious. Who knows what is causing these symptoms and I would hate seeing your young one getting ill. The incubation period is about 48 hours after your fever breaks. However, your fevers break and come back... I wish I was near where you are at, because I would drag you to a hospital ;)
All of us care about you, hun! That is why we are so adamant about you receiving immediate care.
PM me if you need.
~VQ
I texted her about what was said too last night. She said she is so tired and will talk to Dr she did not think about having tests ordered.
Please listen to Vintagequeen. Ecspecially since she is in the medical field. I also agree with the temp issue. It's telling you that you have an infection and you don't want this to get any worse. I hope you call the Dr. on Mon and ask for these test. I also want to thank Vintagequeen for taking the time and helping our Chairian friend. Not to many in the medical field really cares or understands. Take it easy Krystal and let us know what you decide on Mon. Get lots of rest Honey.
Linda :)
Linda :)
Hi Krystal. I am so sorry to hear that you are still suffering so much. I really wish that you could be seen earlier than MAY by DR. E. I think of you often and each time I think of you, I say a lttle pray for your healing honey. I have to agree woth Vintage queen....maybe that would be a good idea to have you avoid the hospital ER again, but still maybe get some answers. I am hoping that today and the days that follow will bring you some comfort.
Vintagequeen, unfortunately many are not like yourself. I commend you for caring about your patients enough not to treat them like that. Most of our stories are generally the same with only small differences. It is sad that it takes so much self education so that you can teach your dr how to care for you, until you find a true specialist or a Dr that has cared for others with CM1. So, I thank you for being a special person in the medical field.
Vintagequeen, unfortunately many are not like yourself. I commend you for caring about your patients enough not to treat them like that. Most of our stories are generally the same with only small differences. It is sad that it takes so much self education so that you can teach your dr how to care for you, until you find a true specialist or a Dr that has cared for others with CM1. So, I thank you for being a special person in the medical field.
Hello Krystal,
I just saw on your profile page that you have this Chiari Malformation.. I know a little of this (Before I decided to become an LPN, I was considering studying to become a Neurologist) So if I understand this correctly, you have had a fever for the past 2 months and they get as high as 101? This is not good hun. I just looked up what this pseudomeningocele is and since it does list meningitis a possible complication.. Your fevers and pain sound very suspicious of meningitis. I don't know the probability of it being bacterial but these high fevers do suggest that it definitely cannot be ruled out entirely until you have another LP. It sounds like you have been through heck and back.. How terrible! I have read some other people's threads and cannot believe what they've had to go through. Sounds like a lot of people who have this Chiari Malformation are being mistreated. I am in the medical field and I hate the thought of one of my patients being mistreated.
I know you don't want to spend the whole day at the emergency room.. Who does, right? You need to have some blood work and a LP. If you are ADAMANT about not going to the emergency room, you should call your doctor to see if he could order an LP and blood work. This way if the cultures come back positive, he could admit you to the hospital for IV fluids and medications if need be. That way you cut out the unpleasant visit to the ER. You should not ignore this any longer hun. As a LPN I urge you to seek medical attention ASAP.
let me know how you are feeling hun
~VQ
I just saw on your profile page that you have this Chiari Malformation.. I know a little of this (Before I decided to become an LPN, I was considering studying to become a Neurologist) So if I understand this correctly, you have had a fever for the past 2 months and they get as high as 101? This is not good hun. I just looked up what this pseudomeningocele is and since it does list meningitis a possible complication.. Your fevers and pain sound very suspicious of meningitis. I don't know the probability of it being bacterial but these high fevers do suggest that it definitely cannot be ruled out entirely until you have another LP. It sounds like you have been through heck and back.. How terrible! I have read some other people's threads and cannot believe what they've had to go through. Sounds like a lot of people who have this Chiari Malformation are being mistreated. I am in the medical field and I hate the thought of one of my patients being mistreated.
I know you don't want to spend the whole day at the emergency room.. Who does, right? You need to have some blood work and a LP. If you are ADAMANT about not going to the emergency room, you should call your doctor to see if he could order an LP and blood work. This way if the cultures come back positive, he could admit you to the hospital for IV fluids and medications if need be. That way you cut out the unpleasant visit to the ER. You should not ignore this any longer hun. As a LPN I urge you to seek medical attention ASAP.
let me know how you are feeling hun
~VQ
COMMUNITY LEADER
Hi Krystal.....I hope it is not viral meningitis and that u begin to feel better soon....it is one of those things u do need lots of rest and plenty of fluids,...and u can also see just how diff it does affect each of us....
I am hoping if u do have something related that ur Drs will figure out just what it is and treat it so u can move forward with ur recovery.
:( sorry I see you answered the question about menenitis here. I wonder if that is what they are looking for when they do the puncture. I'm sorry you feel so bad I think you should tell them both you need squeezed in....not cool to just let ou hurt.
Hello ladies,
Thank you so much for being so concerned and supportive and giving wonderful advice. It means so much to me to have such wonderful friends like all of you. I have been so tired lately, all I seem to be doing is sleeping. I think the recurring fevers are tiring me out. I feel exhausted all the time and I am definitely not doing much of anything. My PCP and my NL are very puzzled as to what is causing my fevers. They think it is a viral infection.. Possibly viral meningitis. I know that this is a common complication of having a pseudomeningocele.. My fever has stayed around 100 all day today. I have not been very hungry either, as I feel nauseated.. I don't think it is from my Oxycodone, but who knows. I do eat some dry toast every time I need to take a dose. I am totally off the Morphine now as the Oxycodone helps me enough. My BM's have been out of whack, but I do have diverticulitis, so that could be the culprit. I am not constipated by any means.. I go every day (sorry, TMI) The vision in my right eye is not much better and it seriously feels like my left ear is "full" the pressure behind this ear is unreal! My tinnitus seems a little worse too.. I have a deviated septum (I don't know if this was caused when my EX broke my nose) but my snoring is so much worse. Jake said I woke him up this morning because I was snoring so loudly. I have noticed that I have a lot of nasal mucus too. I know that this does happen after surgery, but I think I am going to see if my PCP will refer me to an ear, nose and throat specialist. I have a difficult time breathing through my nose these days and it sure makes laying down uncomfortable.
I also wake up EVERY morning very stiff and barely able to move my head from side to side, it is so painful. It feels like I "slept wrong" every time I wake up.
I know I am complaining and I am sorry. I try not to while I am at home. I hate consistently complaining over and over and over. I have a repeat CINE MRI next month and Dr. E will see me May 7th. In the mean time, my doctor said to see him if I need to, and he doesn't have any availability until mid next week. My insurance won't allow me to see a different doctor from that clinic, and if I need to I could go to the E.R. but I have already gone several times with similar symptoms. It always ends up the same. I sit there for hours upon end.. I get poked a million times for an IV start and blood draws, I get a CT scan or MRI and am never informed of the findings, I usually get a lumbar puncture too which hurts really bad and most doctors don't know how to do them properly. (I usually end up with a spinal headache.. and I do NOT want that right now) Then after being at the hospital for 12 hours I am sent home with the discharge papers saying that I have a headache. SO, that is why I absolutely do NOT want to go to the ER.
Anyways, I am beginning to feel sick sitting at the computer so I am going to get off for now. Thanks everyone for checking on me.. I feel so tired right now I think I am going to take another nap.
Krystal
Thank you so much for being so concerned and supportive and giving wonderful advice. It means so much to me to have such wonderful friends like all of you. I have been so tired lately, all I seem to be doing is sleeping. I think the recurring fevers are tiring me out. I feel exhausted all the time and I am definitely not doing much of anything. My PCP and my NL are very puzzled as to what is causing my fevers. They think it is a viral infection.. Possibly viral meningitis. I know that this is a common complication of having a pseudomeningocele.. My fever has stayed around 100 all day today. I have not been very hungry either, as I feel nauseated.. I don't think it is from my Oxycodone, but who knows. I do eat some dry toast every time I need to take a dose. I am totally off the Morphine now as the Oxycodone helps me enough. My BM's have been out of whack, but I do have diverticulitis, so that could be the culprit. I am not constipated by any means.. I go every day (sorry, TMI) The vision in my right eye is not much better and it seriously feels like my left ear is "full" the pressure behind this ear is unreal! My tinnitus seems a little worse too.. I have a deviated septum (I don't know if this was caused when my EX broke my nose) but my snoring is so much worse. Jake said I woke him up this morning because I was snoring so loudly. I have noticed that I have a lot of nasal mucus too. I know that this does happen after surgery, but I think I am going to see if my PCP will refer me to an ear, nose and throat specialist. I have a difficult time breathing through my nose these days and it sure makes laying down uncomfortable.
I also wake up EVERY morning very stiff and barely able to move my head from side to side, it is so painful. It feels like I "slept wrong" every time I wake up.
I know I am complaining and I am sorry. I try not to while I am at home. I hate consistently complaining over and over and over. I have a repeat CINE MRI next month and Dr. E will see me May 7th. In the mean time, my doctor said to see him if I need to, and he doesn't have any availability until mid next week. My insurance won't allow me to see a different doctor from that clinic, and if I need to I could go to the E.R. but I have already gone several times with similar symptoms. It always ends up the same. I sit there for hours upon end.. I get poked a million times for an IV start and blood draws, I get a CT scan or MRI and am never informed of the findings, I usually get a lumbar puncture too which hurts really bad and most doctors don't know how to do them properly. (I usually end up with a spinal headache.. and I do NOT want that right now) Then after being at the hospital for 12 hours I am sent home with the discharge papers saying that I have a headache. SO, that is why I absolutely do NOT want to go to the ER.
Anyways, I am beginning to feel sick sitting at the computer so I am going to get off for now. Thanks everyone for checking on me.. I feel so tired right now I think I am going to take another nap.
Krystal
Still healing well thank you:) I spent most of the day out for my birthday and am just uncomfortable so I think that's good.
That is so good to hear. Thanks for calling, I have been thinking of her all day. How are you doing? Still healing well?
Melody I forgot that I have her number too... :( I could have called her earlier. Thank you
I would call the Dr and get in there. Having a fever such as this for so long could be a cause of infection and that is nothing to mess around with. Your in our prayers. Lets us know if you call and get in. Hoping the best for you.
Linda :)
Linda :)
I am sorry for u...it sounds horrible what u r going thru...try to talk to doctor e...it doesnt sound normal.big hug
I cant offer any type of info, but I hope that you start to feel better soon! I agree with both of them, Dr. E needs to see you IMMEDIATELY !!! Something is wrong if you still have that much fever this long after. I would do as Selma suggested and call and demand that you need to see him on an emergency visit since your having these problems post op and he is your DR. Please try to get in with him soon.
COMMUNITY LEADER
U should be able to get in to Dr E as an emergency with this issue....u r not feeling right post op and he is ur Dr!!!
Call and demand to be seen or, ask for someone close to home he can refer u to that understands this condition that can be of help.
As to the EDS a NL dx'd mine and there r specialists out there they r rheumatoid Drs...and for what type u need a geneticist...
Here is a link that does show a connection btwn EDS type 4 and keloids
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2989813/
Yes Krystal the healing can be a sign of EDS. As you know I was worried about EDS because of your knee. I am no Dr but feel we all need tested. Will Dr E not get you in earlier with the problems? Im sorry about the psedomong... Sp? NC I do feel this can cause a lot of pain since thre is extra fluid in your head. (i know they kept telling me psedotumor could be causing my symptoms) The length of fever worries me 2 months geez.... Get better twin
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