Pain after Decompressions

[xmelax35]

I know everyone tries to be positive toward others and let them know things will be okay. I totally understand that. However, I was just wondering, because I was reading stories emailed to me from awhile ago (I was on another site awhile back) and there were people saying they were feeling so good just a few days after surgery or within 2 weeks. After my decompression, I felt like crap for months.  I mean I had pain for about a good 4 months and still needed to be on pain meds for that length of time.  Is it that others have a high tolerance for pain and others have a low tolerance (evidently me)?

Just curious if anyone else had pain for that length of time after their surgery or is it just me? (again - with the low tolerance for pain).  It could be that maybe, I overdid things a bit, but I have never overdone anything as much as I see others saying they have done (which is more)...such as driving after a week, or going and doing errands, house cleaning and more and these people who do these things say they were just fine. :) :)

[karalee85]

just so you know, the thing with the scar tissue- mine has been very thick and not very forgiving, my pt has me massaging it twice a day, and it really makes a difference when i do...

[selmaS]

  Well ur first doesn't seem that long ago...hmmmm how long ago was it....???

  U know, sometimes u have to keep doing something till it is done right...same goes with these drs...make them get it right...but hopefully u do not have to do this soooo often.......

   "selma"

[xmelax35]

Okay, I am back. Read them all. :) :) Again, thanks for the views.  I kind of wondered about that. I thought maybe some were jumping it a bit before they spoke and probably later had some pain issues. I know that I had scar tissue way after my surgery that formed (saw it on the MRI) (still wondering about that) and it was there for a long time. I had asked the doctor about it (because on the results - the the radiologist suggested it be followed up by the doctor - there was a few other things too).  I hope that others who go through this and the ones who posted here get the relief they need.

Another thing is - I know that I did not keep up on my pain meds. I tried not taking them because the first time around how I heard ppl saying they didn't need them 2 weeks after surgery - again I was surprised. Then I would get so bad that either I had to go out to the ER or so forth...taking my meds too late, waiting till after I had a lot of pain. - not sure if I just made sense there. (my confusion with myself takes over, lol).

I just wonder if it is worse the 2nd time. I mean recovery time for a 2nd decompression. I will take it as easy as my family lets me. My son is getting ready to turn 12 and my husband is around (my son doesn't hang with mom - he is all about the xbox, lol, but he is always calling for me to get him a drink or clean his disks so he is just going to have to do it himself, when I have surgery).  I agree with all of you in every way! Thanks so much for the input.

[xmelax35]

Hello all! Actually my first decompression was quite awhile ago. I am going to be having a 2nd one done - hopefully sooner than later. :) I appreciate all the different views on it. :) I am getting to ready to read more on this page :) Thanks so much.

[karalee85]

i completely agree!!!

XMELAX35- i can say one thing. that no matter how HARD the recovery is, and i think some people on here will agree, for the chance to lead a pain free, easier, or more normal life (depending on your personal problems). it is completely worth it. just for the chance.

[Samanthab259]

I think they all try to say we will be normal in a few months. I dont think they fully understand how we really are. I look at it they might peform the surgery & know about chiari but they dont walk in our shoes! & yes I have been told it could take up to 2 yrs. Chiari suxs for all of us :)

[karalee85]

just fyi.... dr b did tell me i would be back to my "normal life" at 6 months.... look at me at 5.. and now they are saying oh well you know it coud be up to 2 years... blah blah blah... shouldhave atleasst told me that in december..

[selmaS]

  Hi...I know, miss u ...but so glad to see u pop on here : )

  I still have issues at 2 yrs post op and really get annoyed with Drs that give a time table to someone that has yet to have surgery and say u will be back to doing this by this time...really


If u have children did they develop by the book, did ur pregnancy go by the book too?....
There is no way to know....I was in the hospital for 5 days after having my DD I had a CSF leak from an epidural....no one knows how or when u will be back to feeling up to doing things until u r and u can....

  Take ur time and  I do hope to hear from u again soon : )

        "selma"

[marmar0515]

Thanks Selma, I know I havent been on here is a long time but I dont get on the computer that much anymore because it is hard for me to sit for long periods of time and some other medical problems hope to talk to you soon
Marla

[selmaS]

  Hi...I really believe there r many that do feel great right after, but it is a false sense of what is going on...many will develop set backs bcuz they over do it since they feel sooooo good...and much of the time it is the meds...and them wanting to be better.....

And, I really do not think too many will admit once they have said I am wonderful that it was short lived....and some will, but there r too many that will not.

There r cycles to recovery that I have noticed...and feeling really good is right  after surgery, then at approx 3months post op some symptoms start to show up, this is the healing process.....

If u have pain  right after, a few things should be looked at...is it ur pain level, or do u have a complication from surgery? There r several issues that can occur post op- cerebral ptosis, pseudomeningocele , or PTC.....
And the other pain issue can be related conditions not found b4 surgery, like a syrinx, tethered cord, ehlers-danlos etc......

Some of us will heal differently than others, that is a fact....we will have issues with meds that  someone else will not..fact.....so the best thing u can do is pay attention is ur pain more than b4 surgery...less....or the same?....does it change when u change position....?
Do u have new symptoms u did not have b4 surgery?

  If ur NS will not listen to what u feel r legitimate issues, get another opinion.....

  At 2 yrs post op, I still have pain and some issues that flare up, but I am better than I was pre op...no drop attacks, the severe HA's  r rare...not a daily occurrence....I have not had vertigo once (knock on wood).....but, I also continue to notice improvements....so keep track of ur milestones and see how u improve and don't always compare to others as that can cause more stress and problems as u will never have the exact symptoms or pain levels as someone else.....

Take recovery slow...do not push urself...u know what u need to get thru....everything outside that is a guide or reference not what u should expect.

  Feel better Marla : )

   "selma"

[zygy2]

:)  Hello!  My personal feeling is that it is SO IMPORTANT to hear from everyone on here and their experience because it helps to show the giant spectrum of surgeries, recoveries, complications, medications, and outcomes!  People going into this type of surgery need to know it can all go in any direction and be able to hear everything.  It is a shame you are having such a hard time but wonderful you are sharing that information.  I think that since we also don't know exactly what is up with our bodies even when we have Chiari that we can still have things that hurt after.  I think that the head pain was for months for me too, I was able to do things but if I over did it well, it really hurt.  But I also had the thrill to be out of the hospital in 48 hours and that was amazing for me.  Some things went good, some went bad.  I then ended up with a pseudomengecele and second second surgery last week, got out in 24 hours this time and was thrilled again, BUT ER visit only a few days later and chemical meningitis... go figure.  This recovery ***** with the chemical meningitis and I am assuming it is slowing things down for me.  I will talk about this slow one the same way that I shared how well the first surgery went.  

Everyone may deal with pain different or just feel it different.  I don't always think low tolerance, don't blame yourself that way.  I sometimes think mine is too high... why I get out of the hospital too soon  :)  I knew meningitis was very painful and horrible headache and even though so many things were happening to me, I was here calling my NS to see how much tylenol I could take????  LOL.... Would have been much better off going to the ER a day earlier than thinking I could solve the issue with tylenol.  Now that the pain is less, I can't believe I was laying here taking tylenol.  In the ER they refused to give me my tylenol when I asked (in pain, fever and having crazy shakes) they shot me right up with something else against what I was thinking :) It kind of makes me laugh.  I don't think I am necessarily tolerant, I don't always think I feel it the same way someone else would.  Especially head pain because I have had it for so long before I found out why!  I am so used to having an exploding feeling head!!  

Don't get down on your surgery or your pain!  You have what you have and will deal with it the best you can and by sharing with others you share more information.  People need to be able to come on here and see all of it so they can make their own responsible choices. It is so important to know it can go easy but that it can also be a really long painful journey!  The best thing in here is all the support and kindness!! Good luck with your continued recovery!

[marmar0515]

Hello there,

I had my surgery in Oct 09 and I am about a year and half out from surgery and I still have a lot of pain. I see my pain dr every month because of it and the surgeon keeps tell me that everything is fine surgerically and I should not be in pain, but I still am and I even lost my job because I was off work for so long from the pain. I think some ppl have more luck with the surgery than others I am not one of those ppl but I do hope that you will be pain free soon.

I was told I could start do almost anything I wanted like driving doing errands and house cleaning but the truth is it took me almost a month before I drove it just hurt way to much and I still have problems running errands and doing house work sometimes I am in such bad shape that I have my niece come over and help me do major house cleaning.

I know that doesn't give you much encouragement but you are only a few months out from surgery give it more time

Marla