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Chiari Malformation Community
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Avatar universal

Chronic Pain After Surgery?

Hello all...someday I'm going to write (if I can concentrate long enough and find a point to make sense of my whole journey or SOME resolution to it) in journals here of my "journey"...
I'm struggling with not knowing what is still post-surgical pains ,as many of you know I've been dealing with a mound of..."collected fluids" on back of head since surgery, nearly 5mo. ago- and what is... I don't know, what is permanent?
Has anybody/heard of anybody who's ended up with chronic neck, base of skull and spine pain after the surgery? (I have Arthritis, EDS, Hashimatos's, Endometrosis...benign tumors in thoracic vertebrae-T10-T-12...I know there's always something else I forget...but there's certainly a host of issues complicating my short lil' body) .  
Is it still too soon to know if this pain (as well as return of tinnitus, worsened blurred vision) is for life or just perhaps post-surgical pain still?
I'm in the process of getting in & established with a few new doctors to hopefully help me navigate these waters, but I'm just treading water right now.
So...I'm curious if anybody developed Chrinic really horrible pain after the surgery?
Uuuggghhhh...it's making me feel list and hopeless.
I hope you all are doing well...
<3 <3 <3
~emme~
12 Responses
620923 tn?1452919248
COMMUNITY LEADER

  Much pain post op is the nerves working again and they can become over stimulated and cause pain.....BUT it should be short lived and not the same intensity as pre op.

The "brick" collection of fluids you have is also playing into this and I know once addressed you may begin to see the light at the end of the tunnel.

I am 6.5 yrs post op and every yr since surgery have noticed more benefits so it can take time to feel better especially those of us with EDS as we tend to heal slower.

Hang in there.
Avatar universal
Hey Selma! Thank you as always!!!:)
So being just almost 5months post-op is still too early to tell?  And...given the "brick", which has likely slowed the healing process even further (as well as EDS making a slower healer)  by not allowing my neck to heal as my neck has...almost cinched up to my ears to "gaurd" the pain...so I honestly can't even tell WHAT level of pain is what. I feel 2mo. post-op vs. 5mo. post-op.
I've honestly never experienced this intense pain in my life. (Besides JUST immediately waking from this surgery). It's.....horrible. I'm feeling crushed under it. And my neck seems worse. But, that could be a reaction due to "brick" that has l"ed the polls " in my pain & recovery.
Avatar universal
Oh....and my oh my how I wish I'd known about the EDS  BEFORR the surgery, as it can complicate healing. I can never stress enough to anybody the whole ""All Related Conditions". I watched a seminar about this & the importance of knowing what you're dealing w/BEFORE you go in there to operate. I also found reading all my past MRI's, I found a consistent "finding" that I heard about in a seminar (the seminar reminded me of this "finding" that I'd forgotten about, but sure enough, rechecked all findings&others it is, consistently. But never addressed.) which in the right hands would've been acknowledged.... and I'm realizing it was not addressed.
(But that coming from a NS who told me on last visit that @4mo. people are "bouncing back" and ringing in the ear has NOTHING to do w/Chiari...thus, my ex-NS) .But..yes, knowing such info. may have helped this whole darn thing....
You're so right to always stress that Selma!
Avatar universal
hey emme

As you know I've also had a rough time with recovery. Pain seems to be almost worse than before. And even worse problems with vision and numbness. Selma is always right about knowing conditions before surgery. My (now ex NS also) knew about my EDS but still didn't put much stock into it and proceeded with no precautions whatsoever. Now I'm dealing with CCI which is causing a contstant crunching and grinding noise that I feel and hear. For me the tinnitus never went away but the thumping noises in my ear did for a short while. They've been back for some time....

I also had endometriosis and a prolapsed uterus which led to a hysterectomy at 27, I think I remember reading somewhere that endo is linked somehow to EDS. Not sure if I remember correctly or not. Strange small world.....

Hope everyone is doing well. It's not been so good for me at all lately
620923 tn?1452919248
COMMUNITY LEADER

  You're so right Endo is related to EDS as EDS can cause scarring and that is what Endo is....scarring....

And the prolapsed uterus sounds like an EDS symptom/issue as well.

Just wanted to  let you know you did read that somewhere as I did too.
Avatar universal
thank you Selma. My memory isn't so good anymore so I wasn't sure if that was factual or not! I also was diagnosed with something called sponge kidney about 4 years ago (before I knew of the chiari and EDS) and after reading about that I find that it's also linked. So strange. I hope you're feeling well Selma. I'm sure the snowstorm didn't help you one bit!

Emme, do you have a new NS lined up yet? I hope you do and get an answer to your ongoing pain
620923 tn?1452919248
COMMUNITY LEADER

  I agree it is all so very strange....I have heard of the sponge kidney....but not much....can you elaborate a bit on it? How it affects you?

Thanks for asking....it was pretty ...pretty much a pain...lol..after it was all said and done we had 32" of snow...late last night into early this AM they finally cleared the snow from our street....so I did not sleep too well last night...

This type of weather does cause headaches...and I even get joint pain too..that is the EDS at work....othing I can't handle tho  : )
Avatar universal
my goodness that's an insane amount of snow! I couldn't imagine! But the sponge kidney mainly causes me to have urinalysis tract infections and kidney stones. They said I was probably born with it. Imagine that.... If was found because I went to the emergency room for chest pains which turned out to be pericarditis for the second time. And for some strange reason they thought I had a kidney stone and ultra sounded my kidneys. Never figured out why chest pains signaled kidney stone alarms but that's the medical field I guess!
620923 tn?1452919248
COMMUNITY LEADER

  Hmmm I had so many UTI's and bladder infections....no stones tho...there was a time a few yrs back I thought maybe that was an issue....but no....I think I had muscles spasms due to the EDS...BTW I was DX'd with a neurogenic bladder....not sure if it was due to all the UTI's or just a result of nerve issues over the yrs....

I know what you mean with the medical profession as they will look at your head and  say it must be something with your feet....so strangely unrelated possibilities they con-****...

Avatar universal
I had a bladder scope done many years ago that diagnosed me with a spastic bladder. I don't think that's the same as neurogenic, although I'm not totally sure. So many pieces of the puzzle come together as time goes on.

Sorry to hijack your thread emme!
620923 tn?1452919248
COMMUNITY LEADER

   Yeah I guess we should have started a new thread.....

I do believe they are two different issues tho....spastic and neurogenic bladders...

But what I find interesting even tho they are different DX's they are similar in nature.....
Avatar universal
i never knew the difference between the 2. That was the extent of my bladder "work up", and they just prescribed some meds that I had a reaction to so I stopped them. It all makes sense now!
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