Venting

[Missy131197]

I just needed to vent. Dr had put me on some steroids and pain meds I had 5 amazing nights sleep. Now the steroids are done and all the symptoms are coming back slowly. I can't stop crying today it is so frustrating. Having such bad HA and I can't remember what the words are for things more and more. no one understands unless they have gone thru it. Everyone thinks you are fine because they can not see your disability on the outside of your body. Grrrrr!
Thanks for listening. Trying hard to be positive but it is very hard right now.

[lgarcia7712]

I hope my information helps you and I hope you start to feel better. I am so sorry about the headaches. I know they are horrible.

[lgarcia7712]

Hi, I had my surgery on 12/12 and a shunt put in 12/21. I started to taper off the steroids on Tuesday, by Thursday morning I got very sick. I am currently in the hospital recovering from chemical menningitis. I started off by getting a swollen neck, severe headache, sensitive to light, severe neck pain, couldn't speak because of my reaction to the pain, my white blood count was fine which is how they ruled out viral and bacterial menningitis. Apparently, chemical menningitis is possible after neurological surgeries. I didn't know that. I am back on my steroids. It helped my symptoms, now o have to stay on them a little longer while my body gets used to the graft.

[lynmus51]

Missy, just have been going over more post by different members....the steroids that you mentioned truly only work as long as the meds are in your system..depending on whether yours were done thru epidurals, simple injections or orally, they can all cause their own share of problems and can actually attribute to your mood swings...having had 4 knee replacements and 6 separate ankle surgeries, plus having a series of 21 epidurals for bulging discs and spurs in my neck, I finally learned to just say "no" when they were offered, as truly, their longevity is short lived...It is true that Chiari is not something that can be seen from the outside...You do end up having to go thru a gamut of doctors to finally, hopefully reach the one that is going to know how to seal with you, your symptoms and all that that entails....still going down that road myself & will hope Dr. Trammell who I will be seeing on the 31st will truly understand all these things, including the emotional part..The only thing that I have truly been able to take that has helped me with some of these issues is Tizanidine...It does at least allow me to get some sleep, the back is not quite as painful, the headaches are never ending but Maxalt does help to a small degree, but is not covered by allot of insurance companies, that or the number allowed never seems to be enough, so you have to learn when it is most important to take them...I don't know what the degree of your formation is...mine is only 5mm that I am aware of, but due to my cochlear implant, also have not been able to have any more follow up mri's since 2002...I think there are days when we all feel like crying...I certainly do and then realized that only makes my headaches worse, so instead, try to find any little something that will help take my mind off the pain....I have spent countless hours reading the different posts on this forum and there is so much to be learned from other people that are going thru the same type situation...i know it's very upsetting when words or thoughts won'[t come to or when they do, they are very garbled..I just tell people I am having one of my momentary "brain freezes"....this, too shall pass...you have 4 wonderful children and a husband that you no doubt adore so that alone should put a major big smile on your face..... just believe in you more than anything though... lynda

[linnielou232]

I know how you feel.  I wonder if it was the day yesterday.  I came home from a visit and sat down in my chair and just bawled like a baby wondering how I am going to handle Thanksgiving with all the people and noise.  My husband tried to understand, but like you said no one know's how we feel in the inside.  Today is a better day and I have a lot to be thankful for.  I don't want to avend any one today, but I will bring my ear plug's today to get through the noise.  Like my husband said.  "We have to do, what we have to do."  Enjoy your day today.  Hopefully it is better than it was 13 hour's ago.  

[Missy131197]

Selma
That is whet he said from the beginning. He wanted see if they reduced the pressure or not.  Thanks everyone else!!  Gave a Happy Thanksgiving!!  

[selmaS]

  Hi....so sorry u r getting hit with all ur symptoms again, but steroids are not something u want to be on long term.......

   This may have a way of letting ur Drs know u need more attention to help with ur pain.

   "selma"

[lydelia]

I feel your pain. After my surgery they had me on some steroids. Once they wore off, BLAM! Super suck. I was taking the other stuff they gave me and couldn't keep ahead of the pain. If you are not on something that is an anti-inflammatory maybe something like that would help. They didn't help as much as the steroids did for me, but they helped make things manageable.  

I am sorry you are going through this. I hope you feel better soon.