306307 tn?1317053518

Home for surgery yesterday and in agony

As some of yall know I had surgery on the 4th, just got out yesterday..I'm not going to sugar coat anything, its been hell. I dont think you can ever prepare for this type surgery, no matter what no one says! I have spent the last 14 days in agony and docs telling me they dont know why, not to mention I only saw the doc who preformed the surgery twice and both times he was an arrogant @ss! I did see some other docs who could just look at me and know how much pain I was in and others thought I was completely crazy I am sure. I learnt the HARD way docs that dont specialize in chiari or work on it OFTEN are clueless, I dont care if they are nuerosurgeons or not! Now here I am nearly 2 weeks out and I am in more pain then before. They released me from the hospital last night cause they said they couldnt do anything else for me or my pain, but did reccommend me to a pain specialist next week. I;m in pain yall. everything that hurt before now hurts worse than before and then some. Do I need to contact a different doc then the one who did the surgery, well I really have no other choice since he dont know what else to do with me. Where do I turn for help now? I never imagined this much pain and this much careless from a doctor. NEVER! He treated me as a dang drug addict! I told him I wish he could feel my pain for about 5 mins then he would change his mind..all I have done is cry and hurt, hurt and cry. They know I'm hurting cause they have requested PT to come to my home and help me. Just where do I go now? yall plz help me. I am scared, emotionally, mentally, and physically! and dealing with most of this on my own. How and when do I know if the surgery worked and if I will need another, cause it was mentioned in the beginning a 2nd surgery maybe needed. I dont even have the energy to shower but quickly, I have went down hill quick and the 1st doc who was going to do the surgery did mention to me I could get worse I just didnt wanna believe him, but I think maybe he was right...any suggestions yall? and plz be reasonable, do I need to contact a specialist or is it to late? and if so who is the closest in Alabama? Again I need help asap, yes I have some pain meds but I want the pain to stop not just live on pain pills.The doc had me on decradron for swelling, valium, and a few other things now all he has me on is a mild narcotic that barely if at all touches the pain and thank God I had something here for nausea cause he would not give me anything for it! Again, I was shocked by him and would not recommend him for nothng! if anyone has any suggestions email me at outdoorsy_gal35***@**** or text my cell...***-***-****..yes I know thats my cell but I am in that much pain for whatever reason and I need help! heads hurting and got to rest it, plz ppl only reply if u know what to do for sure! I hate hurting like this and not knowing what to do is taking such a toll on my body! I had this surgery to feel better not worse..sorry for the rambling..I am pissed, hurt, humiliated, and all. Suggestions or am is it to late for me?
14 Responses
620923 tn?1452915648

  Hi, I am so sorry u r having such a rough time post op....

U wrote so much, that I am not quite sure what the issue is other then severe pain....do u have swelling as well?....Is this all worse if u r upright?

Does light and sound bother u more then b4?

Do u have a fever?

   Sorry I am sure u wrote much of this, but it is hard to read it all and pull out all that is needed.

Was ur NS a specialist..... and were u tested for EDS B4 surgery?

Did u have a duraplasty, if so, what type of patch did u get?

   Sorry for all the questions

306307 tn?1317053518
Yes to all the questions u asked but the fever...thats one thing I havent had! I have pain, pressure, some swelling..pain and pressure are the worst whether I am sitting, standing, moving whatever. light and sound has always bothered me, everythings just worse now, including the pain. The doc warned me things could get worse but I prayed he was wrong! I seriously doubt my NS was a specialist, after all there aint that many if any in the south! and no I wasnt tested for EDS, I dont even THINK thats an issue. yes i had a dursplasty and i dont know the kind i got. all I WANTED WAS TO FEEL BETTER and all I feel is worse...Do I have anymore options or am I doomed to pain docs forever? sorry if im not making much sense ut I am in pain!
620923 tn?1452915648

  The reason I ask about EDS is, bcuz many times when there is swelling it can be rejection of the patch, and those with EDS tend to have a higher risk to reject the patches if they r not their own skin....
The other possibility is cerebral ptosis....or a CSF leak.

I would suggest u try to relax and I know that is not easy....but u do need to try.....and u may want to see a chiari specialist if this continues....

  Request a copy of the surgical report...find out what type of patch was used...it is important.

When do u go back for a post op MRI?

  U do have options, once u have had surgery in most cases the only NS that will see u is a true chiari specialist.

  Are u on scheduled meds?....if so, keep on the schedule..wake up to take the meds ....

1306714 tn?1327257080
This is the toughest process I think.  Please remember you just had major surgery.  We like to think of ourselves as warrior's and think having surgery that we will wake up and feel fine.  It doesn't usually work that way.  The pain is unbearable I know.  I had to go through it 4 times and it it tough.  As Selma once mentioned on here and I hope I can remember them all.  There are 4 stages of having Chairi that we have to deal with.  First is understanding, anger, pain, and acceptance.Hopefully Selma will correct me here because I know her explaination of it helped me so much.   It's a journey that I sadly say you have to deal with.  I do pray that the pain clinic will help.  It helped me.  Also I would ask about a TENS unit.  That really helped me with the swelling.  I don't know if they would let you use one being so close to having your surgery, but it wouldn't hurt to ask.  I know it helped me by at least 30 percent.  Because when the swelling goes down, so does the pain.  Wish you the best.  I wish I could take away your pain.  Take a deep breath and try to relax.  Tomorrow will be a better day.  
620923 tn?1452915648

  Thanks linnie....it is,denial,anger, grief and  acceptance,

But urs r close to meaning the same...we deny something is wrong, then get mad that something is wrong, then we grieve over the loss of who we were, and then finally we accept the changes in our life and learn to walk a new path.
1903798 tn?1333905288
Praying for you!
1179332 tn?1297478990
Your pain is bringing back so many memories...

After my surgery (2 years) ago, I was in severe pain. Everything hurt so much and no one could give me pain medications to relieve it. I would beep the nurse and they would just look at me like they didn't know what to do with me. Unfortunately, I am allergic to many narcotics and the one they did give to me I reacted to and so they wouldn't give anything else. I remember on the second night my head felt like it was going to explode, I thought that I was going to die and I was in so much pain I didn't even care. So...I understand where you are at...

On the bright side, the first month was awful and then things DID get better! For the first 4 weeks you should be doing not much other than just surviving. Get help at home (I'm not sure if you have kids) have friends and neighbors bring casseroles and just relax as much as possible. As mentioned, this IS major surgery and one of the most painful....and I have had 3 c-sections and they weren't even close to this.

The other thing I wanted to mention is that having Chiari has caused damage that has made my symptoms mirror Fibromyalgia. So if you have muscle/joint pain already, having this kind of surgery is going to trigger that and it is going to be much more painful. I am sure that is why it was so painful for me. Also, your body is used to producing more CSF so that it could get it through the obstruction...now that obstruction is gone, your body may take awhile to adjust the CSF flow so that could be the cause of the pressure.

I am so sorry your NS is treating you this way...try looking into seeing a Physiatrist (rehab doctor). Seeing one of them has been my best experience by far, they care about you, listen to you and they fight for you. I live in Canada so I can't recommend anyone but I would just ask your GP for a referral.

Hang in there...it WILL get better
1925822 tn?1333705617
I am sorry to hear u r having such a harf time.i can only tell u how it was in my case.i didnt feel hardly any aprovment until now.i was suffering from symptoms and post op...i felt i was going crazy i couldnt bear anything anymore.no noise,no people,felt weak,sad,and hardly could ealk for more than 10 min.its been 2weeks now (3months post op)that i start to feel the difference.i am able to do so much more things...i had a walk in the sun today...on my own.although u wont believe it now.u will be much better.but give it time...my body was so exhausted after surgery and it is so different now.the **** thing is that ns dont reAlly care so much...mine also was looking at me with a arrogant smile and told me u will be better...and yes i am...hope u find someone to take care of ur questions and sorrows
306307 tn?1317053518
I went in on the 4th for surgery, came out the 18th and Ended up having an ambulance come get me Friday night with a 104 fever, they did yet another spinal tap and CT scan, and blood work all seemed ok according to docs...All I do KNOW is I had this surgery to feel better and I feel worse then ever before! Nothing could have prepared me for this! NOTHING! And yes I have fibro, anxiety, post traumatic stress disorder, and a multitude of symptoms! BUT I have also learnt to quit asking questions because no 2 ppl are the same and no surgery is the same even if prepared by same doc! Home health care came by today, just to go over papers since I was in the ER all night and unable to do anything physical! I'm telling yall I hurt right down into my knee caps something awful, and thats something new to me They did at least keep giving me morphine for pain...My symptoms are still pain behind the yes, sharp pains in head, chronic daily headaches/migraines, double/blurred vision, severe neck and shoulder pain, arm pain and weakness. I'm sure I am leaving things out but my memory aint like it was, either from the surgery itself or exhaustion one! I am scared, the changes in my body mentally, emotionally, and physically are something I HAVE got to work with someone on...

And all this would be more bearable if docs and some nurses didnt treat you as if you had a lying disease. Even the nurse agreed with me last night I couldn't fake a 104 fever or the excruciating pain I was in!

My main question is it 2 early to seek a 2nd opinion this close out of surgery? How will I know if I need a 2nd surgery? Several ppl tell me its not to early some have..So what is the verdict?

Sorry for all the questions, but if I dont ask I wont know. Yall plz feel free to add me to FB (outdoorsy_gal35***@****), sometimes its easier for me on there.  I am usually a tough lil cookie, seriously, I just never imagined this much pain. anyways... where do I go from here?  Like I said I have pain specialist Monday so I will know more with him after that...Thanks in advance!
620923 tn?1452915648

    Hi...I would seek another opinion since u had to go to the ER and u have no answers...which, is not surprising as it was the ER and not with a Chiari specialist...they will do better to figure this out.

  Sending gentile (((hugs))) and prayers <3

1667208 tn?1333107849
So sorry to hear you are having such a hard time!! Hugs to you!!  I had a lumbar puncture in the emergency room because of fever and pain and pressure and they told me aseptic meningitis (chemical Meningitis)  it was HORRIBLE but they put me on steroids and that helped greatly.  I also apparently have a high pressure issue so I have other problems and have had three surgeries for it BUT I just wanted you to know that there is the other meningitis that does not show infection like typical meningitis but it still really nasty to have.  If you are not getting someone to listen than you need to find someone else, this is your head and you don't want additional problems.  I hope you find answers soon, that much pain for such a long time is terrible.  
1306714 tn?1327257080
Just wanted to tell you I know it doesn't seem like it, but tomorrow will be a better day.  Every day it will get easier.  I think we all went through the same thing one way or the other.  It is a hard servere surgery, but in the long run you'll look back at this and say.  Yeah I did it and I got through it.  We are here for you.  I know if it wasn't for this forum through my journey the encouragement that you need and you receive here is very helpful,  Just don't give up or give into this.   Hopefully you will find a better understanding dr.  that would make a big difference.
Avatar universal
I've been praying for you since your surgery.  I am so sorry that you're having such a hard time. I will keep praying-hard-for you!!  We're all different, and it sounds like you have some other things going on which I didn't, but yes, for me those weeks and even months after the surgery were alot worse than I expected. And I really thought I had a pretty good idea of what to expect!
I had viral menigitis before I was diagnosed with chiari and I can tell you that the pain (pain doesn't even begin to describe the whole sensation involved with that) was on a level like the surgery. Not the same, but as intense.  If you have some type of meningitis or something along that line going on now, right after your surgery, I can't even imagine...
I lived in GA when I had my surgery. I went to Emory in Atlanta, but even though the doc was amazing and I considered him a rock star because of his credentials he wasn't a "specialist". He treated chiari, he didn't specialize in it.  I don't think there were any specialists that I heard of in that part of the south.  I wish I had sought one out. I've seen one other for a "follow -up"  and it was a joke. They look at you and say "ok, you're fine" and it makes you feel like you're imagining everything that plagues you.
Hang in there! We're here for you!  Sadly, non-chiarians just don't "get it" when it comes to what you're going through. We do!  Use the meds if you need them...now is the time that you need them- you've been through A LOT. I hesitated, too, because I hardly ever took any kind of meds, but finally realized that it wasn't a sign of weakness to use painkillers. I was in pain, after all.  I eased up on them when I could and was happy when I didn't need them anymore. I wish you all the best.  Keep venting- you need to get rid of that stress.  Your pain will get worse when you're stressed...trust me on that one!  Let it out!
1925822 tn?1333705617
I had severe arm weakness after surgery...my memory was 0.i could not follow any conversation anymore...the world seemed so different and i thought till almost now i am going to regret the operation.i had several times fever for no reason and it was just scarry!!!i mean in ur case that u r not comfortable at all get a second opinion...u can only benefit from it.i was so many times so close to think my ns messed it up and i will never b able to smile again.i hated people telling me i will get better...as i didnt see a single advantage in the beginning.as u said never compare anyones story to urs...but the whole nervous system has to adopt and orient totally new...that can be crazy sometimes...i wish the best for u
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