Hello - I am not Dead :D
- Thread starter DSRIGGS
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DSRIGGS
Yes, that is chocolate covered bacon
- Joined
- Nov 19, 2014
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Hello all...sorry that I haven't been here much lately. I am kind of in a bit of a DS burn out and trying to take a mental break, but unfortunately I get pulled into conversations in Dr K's FB group too often.
Anyway, a bit of an update. About a month ago I had to go back to Mayo for a repeat brain MRI to check the cavernoma that is in just about the worst place you can have one, deep in the PONS....so if that sucker starts bleeding, surgery is not an option and the only thing they would consider if it was extremely neurologically debilitating or life threatening, would be Gamma Knife...and that sucker isn't a good deal either as it destroys really import tissue as well. The good news was that my cavernoma had not changed, nor was it showing any signs of bleeding. My neuro said that was as good of news as we could hope for and all we can do is be on the look out for symptoms and just hope that is doesn't start bleeding. He said there is no good predictor and that some people live with these for 30 years with no issues and others have a major bleed within a few months or years of diagnosis....so it is on with life.
My strength is also much better recently as well, and my gut seems to be improving tool. So even though I said about 6 months ago that I was feeling better and was starting my job search, well that didn't last long and up until a month or so ago I was quite depressed because I didn't think I was going to get better. Why things changed all of the sudden? No freaking idea because I have changed nothing. Anyway I am actively searching out a job right now because I do now feel like even on most of my bad days that I could still handle it at work, where as before I had 4-8 good days and then 2 or 3 where getting out of bed was all I could do. Those days were not workable and I would have been fired for missing too much work if I was working.
The only active issue currently is my urinary tract is kind of a mess. I go probably 20 times a day, including 2-4 overnight. I then have a split stream often, trouble starting and stopping, incomplete emptying and pain in the entire groin but a lot at top of pubic bone below umbilicus.. My Urologist is doing a cystoscope with possible dilation next week and under general anesthesia (thank goodness because having a scope jammed up your pecker doesn't feel good
) because he thinks it is likely that I have a stricture. I think that is possible but I also think that I have an adhesion to my bladder from my double inguinal hernia repair last June. Dr K said that is very possible as my history shows I am very susceptible to adhesion and scar tissue.....so we shall see how that goes.
I haven't said anything to my general FB feed because he is very private, but my Father has to have Quadruple bypass surgery as well as cleaning of his right carotid which is 70% blocked. He had absolutely no symptoms but an EKG at a yearly physical at his urologist was abnormal (Same group I am seeing. At an appointment I had and my Father had driven me, a lady asked for Mr Reicheneker and I got up and she said not you youngster, I need your Dad). He was sent to a cardio and after a stress test and echo an angio was scheduled. Which was actually when I was up at Mayo. He was so blocked they couldn't do anything and told him the options. SO PSA here: If you are of a certain age, get a yearly physical with EKG as his cardio told Dad that 1/3 of his patients have symptoms and come to see him,1/3 are like Dad with no symptoms and the other 1/3 have a cardiac event AND DIE.
I am doing much better so thanks to all of you who have shown me great support and friendship these last several years. Hopefully I stay this way an it isn't a false alarm. My lottery strategy hasn't worked out yet, for some unknown reason so I guess my lazy ass is going to have to find a job and get back to work. Please keep my Father in your thoughts as his surgery is on Tuesday this coming week.
Anyway, a bit of an update. About a month ago I had to go back to Mayo for a repeat brain MRI to check the cavernoma that is in just about the worst place you can have one, deep in the PONS....so if that sucker starts bleeding, surgery is not an option and the only thing they would consider if it was extremely neurologically debilitating or life threatening, would be Gamma Knife...and that sucker isn't a good deal either as it destroys really import tissue as well. The good news was that my cavernoma had not changed, nor was it showing any signs of bleeding. My neuro said that was as good of news as we could hope for and all we can do is be on the look out for symptoms and just hope that is doesn't start bleeding. He said there is no good predictor and that some people live with these for 30 years with no issues and others have a major bleed within a few months or years of diagnosis....so it is on with life.
My strength is also much better recently as well, and my gut seems to be improving tool. So even though I said about 6 months ago that I was feeling better and was starting my job search, well that didn't last long and up until a month or so ago I was quite depressed because I didn't think I was going to get better. Why things changed all of the sudden? No freaking idea because I have changed nothing. Anyway I am actively searching out a job right now because I do now feel like even on most of my bad days that I could still handle it at work, where as before I had 4-8 good days and then 2 or 3 where getting out of bed was all I could do. Those days were not workable and I would have been fired for missing too much work if I was working.
The only active issue currently is my urinary tract is kind of a mess. I go probably 20 times a day, including 2-4 overnight. I then have a split stream often, trouble starting and stopping, incomplete emptying and pain in the entire groin but a lot at top of pubic bone below umbilicus.. My Urologist is doing a cystoscope with possible dilation next week and under general anesthesia (thank goodness because having a scope jammed up your pecker doesn't feel good
) because he thinks it is likely that I have a stricture. I think that is possible but I also think that I have an adhesion to my bladder from my double inguinal hernia repair last June. Dr K said that is very possible as my history shows I am very susceptible to adhesion and scar tissue.....so we shall see how that goes.I haven't said anything to my general FB feed because he is very private, but my Father has to have Quadruple bypass surgery as well as cleaning of his right carotid which is 70% blocked. He had absolutely no symptoms but an EKG at a yearly physical at his urologist was abnormal (Same group I am seeing. At an appointment I had and my Father had driven me, a lady asked for Mr Reicheneker and I got up and she said not you youngster, I need your Dad). He was sent to a cardio and after a stress test and echo an angio was scheduled. Which was actually when I was up at Mayo. He was so blocked they couldn't do anything and told him the options. SO PSA here: If you are of a certain age, get a yearly physical with EKG as his cardio told Dad that 1/3 of his patients have symptoms and come to see him,1/3 are like Dad with no symptoms and the other 1/3 have a cardiac event AND DIE.
I am doing much better so thanks to all of you who have shown me great support and friendship these last several years. Hopefully I stay this way an it isn't a false alarm. My lottery strategy hasn't worked out yet, for some unknown reason
so I guess my lazy ass is going to have to find a job and get back to work. Please keep my Father in your thoughts as his surgery is on Tuesday this coming week.
Good to see you back here Scott - a mixed report to be sure, but overall promising. I hope your dad come through his bypass better than ever, your pecker-poking clears things up quickly and (relatively) painlessly, and a great J-O-B (or lottery ticket) lands right in your lap.
man, you got a lot going on - hope things do nothing but improve for you.
Larra
Well-Known Member
- Joined
- Dec 31, 2013
- Messages
- 3,558
Scott, I think of you often and I'm so glad to see you back here and doing relatively better. I hope the job search goes well, and the urologist is a magician who can make strictures disappear, and that Dad's surgery goes well. Now don't be a stranger!
Munchkin
Full of Fairy Dust
Come back soon! Best wishes for you and your dad!
Good luck with the stricture. Glad you have popped back in.
Spiky Bugger
Well-Known Member
- Joined
- Jan 5, 2014
- Messages
- 6,310
Most of the time, being not dead is good. (Not so sure on colonoscopy days.)
You have so much going on and I don't understand most of it. But you seem to and you seem to have a plan. That's good.
You have so much going on and I don't understand most of it. But you seem to and you seem to have a plan. That's good.
writegirl
Work in Progress
Glad to hear you're seeing some turns toward the positive, Scott. Will keep your father in my thoughts and prayers.
hilary1617
First time at the rodeo.
- Joined
- Jan 6, 2014
- Messages
- 3,870
well @DSRIGGS i am so glad you are on the mend. For awhile i thought you and I were seeing who could go the shortest amount of time without something happening to these old Eartly vessels.
im doing well too. Other than pain from the rollover and whining because im 45 pounds heavier you'll get not complaints from me.
im so happy you have been able to keep a little meat on your bones.
Sending good juju for a job and the lottery.
.
im doing well too. Other than pain from the rollover and whining because im 45 pounds heavier you'll get not complaints from me.
im so happy you have been able to keep a little meat on your bones.
Sending good juju for a job and the lottery.
.
DSRIGGS
Yes, that is chocolate covered bacon
- Joined
- Nov 19, 2014
- Messages
- 4,635
Thanks Sue. Yeah the cavernoma thing is confusing. It is a word they made up for a cavernous hemangioma with venous anomaly. These things are lesions that can be located anyhwere in the brain. Mine happens to be in the brain stem (pons) so it is technically called a Pontine Cavernoma. The pons is where all the nerves travel through to the body and really important ones like those that control breathing and such. These things can me hereditary/familial or you can develop them at any point during ones life. The danger is that due to poor walls of the vein are prone to leaking blood and when that happens in the brain stem because there is little room there the pressure from the blood can cause severe neurological defects including vision disturbance, trouble with gate, breathing, etc. That being said they tend to stop bleeding on there own but it can take a long time to reabsorb so in that meantime you can have the issues I mentioned in addition to horrible head aches. There is not treatment other than as I mentioned if it gets bad enough causing debilitating issues or becomes life threatening they can intervene with Gamma Radiation "knife" which can do a lot of damage to the surrounding tissue. I haven't had any symptoms and it was an incidental finding on a brain MRI in January when I was in the hospital at Mayo. The hope is that it never bleeds again, but as the Doc said there isn't anyway to predict if it will stay dormant or start bleeding....so I just have to live life and not worry about it. Could have a bleed tomorrow and I could live to be an old man and have it never bleed at all.
