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Aortic dissection, aortic aneurysm - The aorta - Life after an aortic dissection

Since my surgery on July 7th, at least once a day when I stand up or bend or even stretch my back, I will feel a burning/tickling sensation that runs from my tail bone down my legs and they get weak and start to wobble a bit.  I haven't collapsed yet - gotten close a couple times, but it makes me have to wait til the feeling passes.  I am thinking it is a sciatic nerve issue maybe from the inflammation (at times there will be this throbbing stinging deep into my left hip/upper thigh) or maybe because they used that spinal chord drainage tube during my surgery. 

Just curious if anyone knows what I'm talking about and if so, did yours finally go away, or was there something that helped alleviate the issue?

Thanks for any feedback,

Cher

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HI Cher,

 

I have similar, but only in my left thigh where they entered my main artery during surgery ( not sure why). I have a numbness of the left thigh ever since & almost collapsed walking the first few days. I spoke with the surgeon & he said it should go, but almost 5 weeks later i still have it.

That said it is geeting better over time!

 

Hope things are going well for you.

Harry

 

Right back at you Harry --- I know we are living somewhat of a parallel life here - about 4 weeks apart, but on our way right?

I'm going to check into some physical therapy that incorporates deep tissue/sacral work also, since I think most of the trouble I have is so deep within - but they want me to get the all clear from my surgeon.  I don't want to push it or over do it of course, but I don't want to ignore something and then have it be too late to fix.

My leg thing is the main reason I'm not driving yet - and the pain meds don't work on that issue.

You seem so up and with it ---- are you doing good?  I know every day is different and some days are good and some not so good.  I'm amazed at how far I've come already, but I still miss being "normal".  I don't want to rush time, but I look forward to looking back and having this just be a whisper of a memory.

The whole blood thinner stuff is a bit overwhelming too as having to get blood drawn each week ends up being a challenge as I developed alot of scar tissue in my arm veins while I was in the hospital for so long.  They stick me and it just starts to work and then it stops - so then they have to go try my other arm.  I used to have great veins --- it's like all of mine disappear as soon as they see the lab coats :)

One really positive is that the golf ball sized lump that showed up on my upper chest post surgery is finally shrinking -- it's constantly bruised there, but I'm so glad it is shrinking all on its own --- another sign I'm on the healing path.  Just wish the crawling out of my skin achy pain could just fade away --- not that I want stabbing pain --- but it still really plays a game on my mental state - a few second cry stint helps release some of the emotional part of it until it builds back up again.  Still better than those first several weeks after surgery, but it's getting a little old --- which I'm sure you can understand.

Take care

Cher

 

Hi Cheryl! I am glad you are back and doing well.

I had a very severe pain, similar to what you describe. It has finally faded in the last few months. It may be a coincidence, but the only thing changed was an increased dose of aspirin. I was taking 1 baby aspirin and now I am am taking 2. It was increased in June and the last time I had the pain was in May. It was increased because in April I had a kidney infarct. My pain was very strong and lasted for a few minutes and then go away. The doctors did not know what it was. What you said about the spinal cord drainage made a lot of sense because mine was not concentrated in one side only. It was the back and the legs. I hope this helps. I posted it a few months ago as "phantom Pain." It was the name a co-worker gave it when her husband was having something similar. 

Hi Cher,

I really feel for you!

We are both in the same boat with slightly different outcomes.

Like yourself every day is different & I have ups & downs - good & bad days. They say I am lucky because I am younger and that's why I have been making a speedy recovery, but that said its only been 4 years since my AD & now a second operation for the Dacron implant.

I don't know my long term prospects, but  I wouldn't count out further surgery in the years to come. I feel like I am sitting on a knife edge, never knowing if I am doing to much or to little & managing the risks.

I would be asking your surgeon questions about how you feel, maybe even prioritising the pain you feel around your body. I for one have tried to stay away from blood thinners & its worth asking the question if/when you can come off.  Maybe I have been lucky, but I am down to about 3/4 main issues - today has been the fist day I don't have sever pain in my shoulder, but tomorrow is another day!

Like you I am not driving, I have been told I can but I don't feel well enough & do I want to risk my/anyone's else's life? My main issue is the loss of my voice & tomorrow I am seeing a specialist for some answers.

For now I am living each day as it comes, taking on the challenges my body throws at me.

I do wish you well, it seems our bodies are facing similar issues & I am very impressed how far you have come & how you are dealing with things, as well as the fortitude & resolution you are showing - KEEP IT UP!!

Only time can heel & I am sure we will both come through this - Sooner than later I hope.

Rgds & best wishes
Harry

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