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I don't like this phase

Oct 03, 2015 - 6 comments
Tags:

post-surgery

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chiari malformation

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SURGERY CHIARI

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Surgery recovery Chiari

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Pain



just feel like giving up during the recovery process. I feel weak and lame for saying it, I'm not looking for pity or such...I just feel defeated and that just makes me want to give up. I feel empowered that I made it through the surgery-that's what I thought was going to be the hard part....I didn't fully think past the surgery & the immediate recovery in hospital. I didn't think of this part....and I will cry even though I know it will make my muscles tense, and give more pressure to an already pressure cooker head....because I don't know what else to do. That's all I know how to do right now. I'm tired of fighting pain. It's draining me of energy where I have nothing left to give.i feel like I'm fighting it for all but 2hr. increments a few times a day....maybe 2 hrs. Out of every 8hrs, are the times I can breathe easily/not writhe in pain. Other than those 2-3 times a day, I'm here, miserable. Unable to get rest or any breath. I've hit a wall.

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620923 tn?1452919248
by selmaS, Oct 03, 2015
Hi ...yes this is so very typical.....I felt the same way....and I know it is part of the healing process to feel like this too...we go thru several stages when we are DXd and then again when we are healing....

Recovery can be the hardest part bcuz recovery can be slow....and we feel so alone....we also have expectations to be better and to stay better and when some symptoms creep back in, we are devastated....depressed...

Have you talked to you Dr about how you are feeling?..

Avatar universal
by Emme80, Oct 03, 2015
My NS, who I felt completely aligned with... After months of talking to other NS& deciding he was certainly with the most experience as well, (after deciding upon him) I built up what I thought was a good relationship with him.... Him with my mom who would be the one taking care of me, etc.
but now I feel dropped. I got a call from his office late Friday saying I needed to be off all meds in the next 7 days, that there was no reason I should still be hurting. And that was that. She said goodbye&hung up w/o me even getting a word in. So, at the moment, I feel very dropped. He knows there are other factors, we discussed them beforehand and I feel it just matters nothing now. My next f/u with him is Oct. 14th, for which I'm now nervous about b/c I feel like I'm a nuisance to him.... & it's like "the incision looks good, I'm done".  And now I'm left hanging between a my Rheumy who's out of country on holiday until Oct. 19th & I don't see my NL until Mid-November. All the while, I've a solid brick on the back of my head that is causing so much pain. I think that is what is causing this lingering pain. I'm just so...discouraged, headache, Sadler down and abandoned by him. When it was squishy he told us "if it gets hard I need to know right away"... He made a big deal about it...then weeks later it went hard, so my mom phoned him-he said well, if she gets a fever, then call. Now, I'm stuck wondering if solid brick is something to be of concern about, as he certainly made it seem when he mentioned it...,
I just feel lost and confused...and complaining-a lot. The pain doesn't help.

Avatar universal
by Emme80, Oct 03, 2015
I give up. That's where I'm at. I can't get comfortable, it's keeping me up and antsy, I can't seem to find at least 50% pain relief. I'm so tense and I know it's no good. This week I've tried mind over matter...long baths.. Anything to aide in relaxation. But hard to do with non stop heaviness pain & intermittent shudders of sharp pain.
So, I've no choice but sit here through it. Remind myself to breathe every once in awhile. Here, I give up.

620923 tn?1452919248
by selmaS, Oct 03, 2015
May I ask who this Dr is....just to see if it is one that may have left someone else feeling this way....as I get reports like this I remove Drs names from our list if they are on it...and will not add it  if they are not.

I would advise you find a  Chiari specialist to take a look to see what might be causing you such pain.

I would go to an emergency center that has a Chiari Dr on staff at the hospital.....they will or should be called to consult with your case....

How you feel is very understandable.....and your Dr should be offering more help since you have developed this issue due to the surgery.....

Keep me posted but hang in there <3

Avatar universal
by Emme80, Oct 03, 2015
Dr's name is Travis Dumont...in Tucson, AZ.
I'm by myself until Minday in which my mom said , when I spoke to her over phone that if still this way by Monday, to the ER we go. It's gonna be a tough weekend. I can't seem to fight the tears. Usually it hurts too much to cry. But, it's all I can do right now.
Thank you for the encouragement Selma.

620923 tn?1452919248
by selmaS, Oct 03, 2015
I am glad that is the plan and I agree with it.....


That is not a name I am familiar with nor is it on our list....and will not go on at this time unless things change with his care for you.

Try not to cry....find ways to relax to help reduce the pressure and pain....I use to take a warm soak in the tub....had a few scents simmering  to help with the relaxing aspect....certain scents can help you relax.....

Sending prayers your way <3



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