4/11/12 Riding a bike like old times
I had another visit at Mayo Clinic yesterday with a cardio-thoracic surgeon. I'm always so amazed at how prepared these doctors are when they walk in the room to talk. Most of the time they know more about me than my parents, and this visit was no different. I discussed the symptoms and we discussed the risks. Overall I am much better off since doing the CCSVI in Oct 2010, but not as good as the height of my recovery toward the end of last year.
Doc looked at my latest intervention on 2/28, and he thought it was a good thing that my right jugular was huge and though my left side was occluded, it had formed a good sized collateral that seems to be relieving the pressure somewhat on the left side. We had a nice lengthy discussion, almost an hour, and his final offering to me was that the surgery could be done, he'd be willing to do it, I'd likely survive it, but he'd have to go into my chest to attach to the inominate vein or the superior vena cava whic increases the risk and lengthens the recovery, and also it would very likely disrupt the collateral that has relieved some of that pressure. Most of all, he felt the risk of loss of patency (i.e. the vein staying open again) was not good. In short, he felt that I was clotting the left jugular because the flow dynamics were simply not calling for it, and it was closing up essentially from lack of need.
Who knows if that's right or not, but it does represent one plausible theory. So that's two Mayo Clinic doctors recommending against another surgery. Still waiting on some more appointments.
So what's this about riding a bike?
I have an exercise bike in the living room and I ride it in the mornings while watching TV. I get my pushups in and I do my abs on my abdoer twist, and get myself pretty limber, but since I hurt my right leg on the dirt bike again, I haven't ridden the exercise bike. Now, I have to admit that part of the reason I don't like the exercise bike is because I usually ride it for 10 minutes then have to sit on the couch for an hour or so because I can't walk. Well, in the ever changing world of the wonderful disease, suddenly I'm riding this bike like I used to before the disease. All last week and Monday and Wednesday of this week I rode for 30 minutes or so and got off fully walking and able to carry on with my day. I've also noticed that my ability to hold urine has improved a little and that the bowel seems to be heading back toward less constipation and more control. Small improvements to be sure, but noticeable.
I haven't been able to ride a pedalling bike for any length of time for 2-3 years or more. Now suddenly I can ride the thing for 30 minutes and get off and walk around. What gives?
4/2/12 What do we fight for? Is it worth it?
After coming to the full realization that my left jugular is now flowing like a muddy arctic river in December, most of my efforts now have turned to what to do about it. I had a vascular consult with a Doc from Loma Linda in Southern California and another visit with Dr. Stone at Mayo last week. I have several calls and records in to others and I have a few more consults scheduled, which I'll share after they take place.
The Doctor at Loma Linda initially had a lukewarm repsonse to my case, but as Kathy and I talked about it with him, the interest level rose to the point where he took it to the conference level with his staff and will get back in touch with us shortly. We were quite encouraged after that visit, because after we left they caled right away to get some more details and dates. We also got another call from one of the docs we had been waiting on for a few weeks, so the drive from Loma Linda to Phoenix was a pretty upbeat.
At Mayo, Dr. Stone flat out told me he felt the risks of another surgery were signficantly higher than the first reconstruction and said he isn't going to do it. I have a lot of respect for him professionally, so I won't go into the sordid details of our discussion, but suffice it to say he doesn't want to be the guy who sees my last breath.
As we drove home from Phoenix on Friday, we had 5 hours or so to digest things before we hit the truly amazing Hoover Dam bypass bridge. Why does my left jugular keep clotting? I don't have a hemotology makeup conducive to clots. My legs don't have DVT, and my arms and legs actually look fairly muscular. My head isn't swollen, my eyes aren't popping out of my skull, and one of the thigs Dr. Stone said was that if I didn't have MS, as a vascular surgeon he wouldn't even consider the surgery in the first place, let alone the second. Said it would be something tantamount to medical blasphemy, because veins collateralize and return blood to the heart. My blood pressure is normal, too, so that's another reason.
So why does it keep clotting? The right side is huge and flowing beautifully. Is that the cause? That I'm returning the volume of blood needed to work properly so the left side collapses enough in low flow conditions to start a clot?
It's a million dollar question to be sure. But even more challenging is what to do about it? Here's the rundown on the dilemma.......
1) The MS disease itself seems to be at bay, with no attacks for quite some time.
2) The overall symptoms have been stable for a little while. I was getting a LOT better through the end of the year and then pulled back a lttle bit, but not to the point I was when I started this whole thing. My left leg was getting elephant-like, and I've maintained the normal leg look. Urinary symptoms are a little worse, walking is a little worse, bowel is a little worse but still much better than before.
3) I have a little bit of a presence (like a dull ache) in my head, left side, from the temple to the upper jaw, that seems to escalate when I try to exercise. It subsides a little when I clear my ears as if I am on a plane in the climb.
4) I feel like I'm hung over on most mornings and it takes awhile to get whatever is in my head to drain out and get things going.
5) The left jugular, though plugged up, has collateralized to a surprisingly large degree. It isn't a nice straight drain like the native should be, but it's about a third of the size of the right jugular.
If I have another vein reconstruction, I face all the surgical risks such as death, nerve damage in other areas, etc., and the possibility of yet another failure. If I don't have the surgery, I face the probability of the left temple presence worsening, and MS coming back active, taking me down another notch and/or adding more failures to perhaps my arms which are currently unaffected.
It's torture. I can't believe I have to go through this type of analysis at 46 years old. Why don't I get to run or even walk like a normal person? Why do I have to have every business meeting interrupted by a bathroom emergency? Why can't I just bend down and fix something like I used to? Or take my son to Colorado to ski during spring break? Some might say it's hell.
I often wonder why I go through the fight every day. Is the chance of a worsening MS condition worth the chance of a severe surgical complication? Can I live with myself if I get worse without contuing to try? Is another reconstruction just going to result in another clog? Is it possible to gently open the collaterals with the angio balloons? Is there another way?
Then I see my wife and son. There's no torture. There's no hell. There's only survival and a search for answers. I figure I'll go see somewhere between 5 and 8 vascular surgeons, then sit down with all the data and discussions and make a decision on how to best proceed. In the meantime, I'll keep my head up 90% of the time and minimize my sorrow for the other 10%.
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| One and only time on a horse......Los Osos, CA |
The Doctor at Loma Linda initially had a lukewarm repsonse to my case, but as Kathy and I talked about it with him, the interest level rose to the point where he took it to the conference level with his staff and will get back in touch with us shortly. We were quite encouraged after that visit, because after we left they caled right away to get some more details and dates. We also got another call from one of the docs we had been waiting on for a few weeks, so the drive from Loma Linda to Phoenix was a pretty upbeat.
At Mayo, Dr. Stone flat out told me he felt the risks of another surgery were signficantly higher than the first reconstruction and said he isn't going to do it. I have a lot of respect for him professionally, so I won't go into the sordid details of our discussion, but suffice it to say he doesn't want to be the guy who sees my last breath.
As we drove home from Phoenix on Friday, we had 5 hours or so to digest things before we hit the truly amazing Hoover Dam bypass bridge. Why does my left jugular keep clotting? I don't have a hemotology makeup conducive to clots. My legs don't have DVT, and my arms and legs actually look fairly muscular. My head isn't swollen, my eyes aren't popping out of my skull, and one of the thigs Dr. Stone said was that if I didn't have MS, as a vascular surgeon he wouldn't even consider the surgery in the first place, let alone the second. Said it would be something tantamount to medical blasphemy, because veins collateralize and return blood to the heart. My blood pressure is normal, too, so that's another reason.
So why does it keep clotting? The right side is huge and flowing beautifully. Is that the cause? That I'm returning the volume of blood needed to work properly so the left side collapses enough in low flow conditions to start a clot?
It's a million dollar question to be sure. But even more challenging is what to do about it? Here's the rundown on the dilemma.......
1) The MS disease itself seems to be at bay, with no attacks for quite some time.
2) The overall symptoms have been stable for a little while. I was getting a LOT better through the end of the year and then pulled back a lttle bit, but not to the point I was when I started this whole thing. My left leg was getting elephant-like, and I've maintained the normal leg look. Urinary symptoms are a little worse, walking is a little worse, bowel is a little worse but still much better than before.
3) I have a little bit of a presence (like a dull ache) in my head, left side, from the temple to the upper jaw, that seems to escalate when I try to exercise. It subsides a little when I clear my ears as if I am on a plane in the climb.
4) I feel like I'm hung over on most mornings and it takes awhile to get whatever is in my head to drain out and get things going.
5) The left jugular, though plugged up, has collateralized to a surprisingly large degree. It isn't a nice straight drain like the native should be, but it's about a third of the size of the right jugular.
If I have another vein reconstruction, I face all the surgical risks such as death, nerve damage in other areas, etc., and the possibility of yet another failure. If I don't have the surgery, I face the probability of the left temple presence worsening, and MS coming back active, taking me down another notch and/or adding more failures to perhaps my arms which are currently unaffected.
It's torture. I can't believe I have to go through this type of analysis at 46 years old. Why don't I get to run or even walk like a normal person? Why do I have to have every business meeting interrupted by a bathroom emergency? Why can't I just bend down and fix something like I used to? Or take my son to Colorado to ski during spring break? Some might say it's hell.
I often wonder why I go through the fight every day. Is the chance of a worsening MS condition worth the chance of a severe surgical complication? Can I live with myself if I get worse without contuing to try? Is another reconstruction just going to result in another clog? Is it possible to gently open the collaterals with the angio balloons? Is there another way?
Then I see my wife and son. There's no torture. There's no hell. There's only survival and a search for answers. I figure I'll go see somewhere between 5 and 8 vascular surgeons, then sit down with all the data and discussions and make a decision on how to best proceed. In the meantime, I'll keep my head up 90% of the time and minimize my sorrow for the other 10%.
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