Still Recovering, Could Use Some Encouragement
14 March 2005
Last November 19, my significant other -- Walter, got a CT scan for what we believed to be a gall bladder problem. The technician gave him the prints and told him to hurry back to the doctor's office. It turned out to be a 7.9cm AAA.
After being air-lifted from the local hospital to a trauma hospital downtown, the ER vascular surgeon explained that his situation was "very complicated." The aneurysm was not leaking, but was in a tough place to fix. It was located where many major arteries branch off to kidneys, bowel, etc. The doc told us that he would get his "teams" of doctors together to discuss if they could operate.
The day before Thanksgiving, they went through with it. His surgery included a partial heart bypass to keep blood flowing to his legs, a tube through a leg incision into his kidney, and a 17-inch incision from his shoulder blade and across his torso. He made it through the 10-hour surgery! So many things could have gone wrong, but they did a terrific job. Walter now has 8 inches of Kevlar aorta.
They told him he was recovering well in the hospital, partially because he is only 52 years old. He did have two more surgeries in the following two weeks -- one to restitch internal stitches that had loosened, and one to repair the leg incision that was leaking lymphatic fluid like a sieve. He ended up with an infection in the leg incision after that surgery, and was hospitalized again for several days (around Christmas) to start an antibiotic IV. He recovered enough to be sent home with the IV. We continued that IV treatment for two weeks with the help of home-visit nurses.
It has now been 4 months since the initial surgery. We would like to hear some recovery experiences from other people. Basically, we both need some encouragement. He is on much less pain meds than when we first came home, but cannot yet go without prescription medication. He is not back to work yet since his job is to be on his feet and fix machinery. I have read some of the stories here, but how long did it take most of you to get back to work? Is there a light at the end of the tunnel, or will he have at least some pain forever? Is there a point where you stop feeling like "I'd better not do this particular thing, because it could blow out my new aorta"? Did you consistently feel less pain, or did you have times of feeling much worse than in previous weeks?
He is getting discouraged, and one nice doctor on this group said depression after such an experience is normal. If any of you have time, we'd love to hear your recovery experiences. I looked for a vascular or aneurysm support group through our hospital where people might meet, tell their experiences, and hopefully encourage others, but was not able to find one. I'm glad to find this group.
Thanks for any help.
Update: 12 December 2005
It's now been just over a year since Walter's surgery for the aneurysm in his descending aorta. I thought I would update the saga and see if anyone else has had a particular pain issue, and what they have done.
Walter did go back to work about 6 months after the last surgery, and had a tough month or so. He has painful cramps in his side near the incision site, under the rib cage. They did get better about mid-summer, but have been getting worse in the last few months.
We have been to a pain doctor and back to the original surgeon. A CT scan shows no visible problems. The pain doc thinks the problem is the diaphragm, which was detached from the rib cage during surgery and also cut through. He believes scar tissue has formed and is possibly pulling at the diaphragm every time he breathes, causing the cramps. He wanted the surgeon to perform a laproscopic procedure to see if scar tissue or lesions were visible and could possibly be snipped. The surgeon does not want to do the procedure, stating that it could cause MORE scar tissue to go back in. The surgeon suggested putting a nerve "to sleep" in his ribs with ethanol, to see if that would calm down the diaphragm. He thinks pain from his incision between the ribs could be causing at least some of the diaphragm unrest.
If it is scar tissue, things could continue to change over time. Has anyone else experienced something similar? Walter has to hold his side continuously, and is often so uncomfortable that he moans with each breath. He has started taking some pain pills in the evening just to sleep, but we don't see that to be a long-term answer.
We will be trying another pain clinic, but was hoping that if anyone here has gone through chronic pain in the rib/diaphragm area that they could share their experiences.
The aorta is doing great by the way, and all in all, he is very lucky to be with us today! I never lose sight of that.
Discussion, comments, or questions: Rhonda Mattax
© Copyright 2005 Rhonda Mattax
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