ok... so I had surgery August 9th 2011, almost 3 months now, and was re-admitted to the hospital and they could find nothing on the mri's, but stayed in the hospital almost a week, I convinced them to do a lumbar puncture and they final found after a week high pressure. They put me on prednisone for the inflammation, and I felt better than I have ever felt in my life nearly 3 weeks out from surgery. Once I tapered off of the prednisone I started feeling sick again, and though I was just getting a cold or flu, but the symptoms persisted and got worse and I recognized, or thought I recognized it as high pressure or something again. I requested mri and it came back normal, but it had before when my pressure was almost high enough to classify me as Intracranial Hypertension, so I requested lumbar puncture, but they refused. I asked if I could try the prednisone again to see if it would help with all of my symptoms and make me feel good and normal again as it had the first time. They let me, and again it helped with all of my symptoms.
After I got off, guess what? The two most bothersome symptoms returned...
Extreme fatigue and extreme nausea... I have lost 7 lbs in a week and can't eat anything even with anti nausea meds, and I am so fatigued that I can't even stay awake for the first 2 hours of the day after 12 hours of sleep.
I know something is wrong because I felt so great both times I was on the prednisone.
So I went to my 2 month check up and he said I don't know what to tell you, if it persists, we can look into it... well, we didnt even talk about my new mri, and I ordered a copy and just got it in the mail today... and the findings are:
mostly normal except the impression is: small dorsal fluid collection at c1 could represent a pseudomeningocele, otherwise fairly unremarkable study. The c5-6 disk bulges slightly eccentrically to the left.
my question is.. I couldnt find much on this topic... what does this mean? could it be causing my symptoms? is this synonymous with a csf leak? like do you get a leak and then this develops or how does this develop, and does it get treated or what can I expect with this, and is it surprising that my dr. didnt even bring it up? My surgeon by the way is Dr. Oro.
My first pseudomeningocele caused sympstoms like Chiari itself. I guess it was causing the same pressure that I had before surgery. I have my second pseudo now and it does not seem to be causing all the symptoms again but they are going to watch and see what happens. I do think my neck hurts more because the pseudo is in there, and I do think there are still weird headaches but for now i don't feel like they are big enough to try any more surgeries. I am sick of surgeries. I think a leak can be changing your csf pressure which can cause problems or it could be causing pressure just like the chiari in the back of your head. What it seems like to me is that they are just not certain. I felt very flu like after surgery number two, and they diagnosed chemical meningitis, it did result in steroids and they did help greatly. I hope they can help you to feel better quickly!
My first pseudo did cause symptoms, I had positional headaches, more numbness back in my hands and chiari cough headaches returned, this was why I had surgery number two. My NS did say though that they don't always cause problems and can possibly go away so that is why they are watching the one I have right now. I will have a new MRI in four months to re-evaluate how I am feeling and what it looks like. I think each case is just different. I might try and call and see why they didn't mention it to you and see if they have some time to discuss this with you. A lot that I read about meningitis said that you have have odd symptoms while you recover for quite a while so possibly it has something to do with that also. It is all so confusing and frustrating!
I would at least try to get them to prescribe something for the nausea! I have always had severe nausea that just randomly comes and goes, nausea is horrible to deal with. Is it vertigo nausea or just stomach sick? I know when I left the hospital I had such a messed up stomach after so many different meds in such a short period of time so they gave me anti nausea meds to help for a while when I needed them. I also drink peppermint tea when things are acting up and try to eat really small meals when I think of something I can stomach. I think where you are so worried about things you really need to get your NS to talk to you so that you can explain what you feel like. If your Dr. will not listen than I would be finding another Dr. as quick as possible. I switched Hospitals when I thought something was wrong and that was where my first pseudomeningocele was diagnosed. It stinks, to have to find someone else but if you can't get them to listen that is your only choice, that or the ER.
I've tried anti nausea, and they don't help enough, its constant nausea and severe fatigue and I'm not on a lot if meds, less than before and never had issues with stomach before... and its been three months... I think the issue is that I had symptoms, went in for MRI and that MRI was clear, then went in for my 2 month check up and since my doc had just seen me two Weeks prior with a clean MRI, he didn't even bother to look at the new MRI, cause we never even talked about it at our apt, just how the previous MRI showed nothing and didn't match my symptoms, nothing about the new MRI, so I'm wondering, if he ever even looked at this one. Its Dr oro. I don't have a better choice out there. Thanks for yr advise and comments, I feel like this may be my answer.
You just need to call Dr. Oro and find out if he has seen the NEWEST MRI and what he thinks about it??? Then give yourself a few minutes to explain the problems, if they don't hear from you they don't know things are not good. I tend to wait too long to get help because I don't want to "bother" them but waiting last time could have killed me, my emergency surgery was insane, don't wait that long... you need to call and get the information and help that you need. These boards are great for support but only the NS can solve the problems and really help you.
well I called, talked to the np, and she said it is small and not near my tonsils so she doesn't think that it is causing anything, but will run it by Dr. Oro.
But I got my hormone test results back and... 1.9 am cortisol level... real low... and guess what.... everyone says... just wait a month til your next appointment!!! I am gonna cry... I am so sick and tired and frustrated... its obvious that something isnt right.
It is very flustrating when you don't feel well. My husband is alway's asking me. "What are you hungry for". I say nothing all the time and he get's flustrated. I have never dealt with neasea except in the last month. I had steroid injections and some steroid drop's I use. I was tellng my husband that is why I'm not hungry. It's flustrating. You do one thing to help one issue feel better, they put me on a different med for my fibermygial and now I'm sick all the time. It seem's like the cycle never stop's, but it will for us one day. We just need to take one day at a time. For you I would definelty want to talk to the doctor about your result's. Have your question's written down before you go see him so you won't forget. My next step after I have injection in the next in Nov I'm going to ask for another MRI, just like you. You know something isn't right and you know your body. I am worried for my self because I think I have a problem with my csf flow. If I had something wrong would I want surgery again. NO. I'm also sick of dr's and surgery. What do we do then. I wish you the best. Go get some answer's on your MRI. Yo don't deserve to sit and have tow orry about it for another month. That's what they get paid for.
I have the same symptoms as you, sick to my stomach to the point of losing 20lbs or more, extreme fatigue, also pain and pressure at the surgery site. I have had many CT scans that came back normal, but it wasn't until I asked for the results that I found the Pseudomeningocele, I have tried calling my NS they keep giving me the run around. My PC doctor referred me to a different Neurologist when I told them about my surgery they told me they couldn't see me, that I would have to see the doctor that did the surgery. I had my surgery 8 months ago and have been dealing with these symptoms for 5 months now. Also, steroids work amazingly for all my symptoms except nausea. But the doctors say that they are bad for your body to be on them all the time. I would just like to get some answers, I hate calling the Dr all the time... I dont want to be annoying. But thats what Ive been doing, even my husband has made a few calls, as he is very tired of all of this too. If anyone has any advise, it would be greatly appreciated.
May I ask when u had ur Chiari PFD surgery?...and was ur NS a chiari specialist.
Post op care is the one thing we have to try and get, once the area is healed on the outside, we r done...and no longer patients of the NS, so we all need to have a good NL in our area's so we can have care post op.
Hello- You will have to get back to your NS to ask about the pseudo. Pseudo's can cause issues or just "be there". I had a pseudo after my first surgery and had a lot of issues that lead to a second surgery but found out that my patch was also stuck to my brain so who knows exactly what was causing all the issues. My third surgery left another pseudo and now they are just assuming I have a too much spinal fluid being created and the high pressure issue is what keeps making my head leak. I have some things that continue to bother me but after three surgeries I just can't imagine doing it again. If you are not feeling well your NS should still be seeing you to find out if there are any remaining issues! It can be hard to get people to listen and this is why you really need a good Chiari NS that is educated enough to know a problem when he sees one! I had to switch NS's after surgery one and luckily I found someone to listen and that is how I found the pseudo, I knew there was a problem and just could not get anyone to do the MRI. I just knew something was wrong, we did not know the patch was stuck to the brain though and that is what messed up surgery number two and ended up in emergency surgery three to repair everything. Chiari is just not a simple problem and you need someone that can really listen to you! My NS said that a long term pseudo (older than a couple of months) will probably not go away on its own. My largest complaint is that it messes with the neck muscles and it seems to keep my shoulders, neck and jaw area very sore. I have other issues but headaches have improved greatly and the chiari cough headache is gone for me! That is amazing!
I had my surgery in May, 01, 2011, Im not sure if my NS was a Chiari specialist or not, he said that he deals with about 5 Chiari surgeries a year. I was on the phone with my NS nurse today and she said that I would have to have my PCP refer me to a neurologist, which he already has, but the neurologist nurse said they wouldn't take me. That I would have to see my NS. Just seem to be going around in circles. Today I called my PCP and have an appointment after Christmas. Hopefully to get another referral to a different Neurologist
JMHO 5 surgeries a yr does not a chiari specialist make...and since u had surgery u may have more difficulties getting seen...so u will deff need a true Chiari specialist to help u...ur NS may not be experienced enuff to help with the situation u r having...
Do look at the List of Drs and do some research, u may have to travel.....
I pray the Dr u see after Christmas can offer u some help.
Ok, I know i haven't been to see my pcp yet... but i have recently gotten sick, and it is really kicking my butt. Alot like flu symptoms but way worse. My head is killing me. I dont have insurance right now so im trying to avoid a trip to the er, if its just the flu it should pass with in a week right? its been going on for about 5 days now. But it is causing so much pressure in my head right now. And i have already had a problem with the pressure in the back of my head as i have said before. I guess i just was wondering if anybody knows if this could be something worse then just a flu and if i need to be seen?
pressure in my head nose and ears
lots of drainage
and my neck is really sore, and hard to move
feeling extremely weak
If anybody has any input it would be great. and SelmaS i contacted a chiari specialist in Cleveland oh. thank you for ur advise
U r welcome, glad u found one to contact...I hope it works out...be sure to interview them....and if u r not comfortable with him check out a few others.....
Can u afford to go to ur PCP for this?....just get checked....nething that last more then 4 days u should be checked...and since u have chiari and it is affecting ur chiari symptoms I would urge u to be looked at.
Well I broke down and went to the ER this morning, when i woke up i couldn't pick my head up off the pillow, i was so scared... but when i got there they called my NS and he said that with having a real bad flu it would defenately cause more pain with my chiari symptoms. so they gave me pain medicine through an IV and sent me home with medicine for my stomach, i feel much better now. Thanx for all ur help I really appreciate it.
So glad that u went and found out what was going on.....I had the flu like that yrs ago...I could not move, I had no idea about the chiari...wonder if it was a factor in how bad I felt that time,.....hmmm
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