My brothers

[Terri]

While I love the character Eeyore, I would never want anyone to sound nor have an outlook like his. I am sure with each step your brother sees the possibility of relief. Possibly much like we did with each step we took/take on our weight loss journey. A lot of us were hopeless and then things started to happen until that day we were finally headed to the operating room. Yes there would be pain and challenges along the way but the end outcome was what lifted us up. I would think anyone suffering physically would have some of the same feelings as we did.

 

[DianaCox]

UPDATE: Today was my brother's appointment with Dr. F, the vascular surgeon who is the MALS expert. I flew down to Orange County last night, got a hotel room, got my brother to come spend the night (and so he could take a proper shower before the appointment). He showed up around 10 PM (I didn't get in until 8:30), and couldn't eat any of the food I brought for him. In the morning, he couldn't eat either - he brought Boost, which he is mostly living on. He was in pretty bad pain most of the time (I would guess about a 6-7/10, constantly and with intensifying spasms).

When we got to UCI, and were brought into a room (after he was weighed - his BMI was about 18.4), it turned out that Dr. F was not here today after all. :-( But - h was seen by the vascular surgeon fellow and the resident who both work with Dr. F, and know about MALS, and really were the right people to see my brother, because he hasn't yet had the tests he needs for Dr. F to make the diagnosis. So, these two did the history, really LISTENED to my brother (and to me, because as usual, he was minimizing his symptoms, even though he was clearly in distress today), and watched him do his "tics" and his positional posturing that helps momentarily ease the pain, and they got it. They agreed that MALS is possible, and they ordered the tests, including a MRA (Magnetic Resonance Angiogram, with contrast) to get a good look at his celiac artery, and they made the follow up appointment with Dr. F for 9/4.

This may sound very straightforward, but it's not. There are many doctors who don't even believe MALS is "real," and most people go years without a diagnosis as a result - I can only imagine how many NEVER get the diagnosis and thus the access to a surgeon who can perform this very difficult and delicate surgery. The woman on the Facebook MALS message board who pointed me to Dr. F - who is an attorney, with GREAT private insurance, went YEARS without a proper diagnosis, and almost lost everything because of it - she was bedridden and bereft of hope, and finally got in to see Dr. F only because she went in through the UCI ER, and begged to see Dr. F. My brother is so VERY lucky at this point to have gone from having no hope of seeing anyone who could diagnose him on June 19, to getting Medi-Cal on 6/20, to being a patient of the right surgeon in about 6 weeks. (I am also very glad that I had something do with all of that, of course.)

So, importantly, HE'S IN with the people I found who I hope can help him, based on my diagnosis, and they believe him, and they seemed very concerned and caring. SOOOOO different from the ******* who (mis)treated him 5 years ago when I came down to attend an appointment at Harbor UCLA County Hospital as an uninsured indigent patients. I also gave the doctors a copy of the exemption form to keep my brother on straight Medi-Cal (and not assigned to a Los Angeles County HMO, which would preclude him from seeing Dr. F in Orange County), and they agreed to get it finished and filed in time. The ducks are lining up.

I am sitting at the airport (my flight isn't until 4 PM), drinking a beer mid-afternoon, and feeling happy, relieved, and hopeful.

 

[JackieOnLine]

oh, that's wonderful. I so hope that he turns out to have either this or something else they can FIX.

good for you for helping him. I know, you don't want him living with you but still - many a person wouldn't do either and we all know this.

you rock!

 

[Spiky Bugger]

I was about to inquire..thanks for the update.

 

[Larra]

Sounds very promising! At this point, the most important thing is that he is finally in the hands of people who care about him and are willing to do the proper work-up and follow-up, whatever the diagnosis may turn out to be.

 

[DianaCox]

I am torn with what to wish for - if it's MALS, the surgery is very complicated and doesn't always work - and the recovery is pretty difficult too. He could need a vascular graft, which is dangerous. But I desperately want it to be a curable diagnosis, whatever it is.

 

[Terri]

So glad the wheels are turning in the right direction. Your brothers are lucky to have you. You are a great person.

 

[hilary1617]

I'm so happy you have gotten him to doctors that *listen* and *care*. That makes all the difference in getting a correct diagnosis. Hopefully, it isn't MALS as it seems very difficult to remedy, but whether it is or isn't, you seem to have got him to the best resources possible to diagnose and treat. Well done! Cheers to you!

 

[DianaCox]

When I got home, I called our parents and told them the good news that the appointment went well - you can imagine how stressed all of this has made them, as neither of them is in any position to have helped their son. That gave me naches. (http://yiddishwordoftheweek.tumblr.com/post/315848528/naches)

 

[Parousia]

I'm so glad they've accepted your brother as a patient and are investigating further. I'm sure, at last, you (and he) will get some answers and hopefully a solution. Best wishes to you both for more positive news, Diana .

 

[aaa]

Good work!

 

[DianaCox]

Brief update: the doctors my brother saw on Aug 6th ordered the definitive diagnostic test for him (to my surprise, as usually MALS is diagnosis of exclusion, but I guess that between my advocacy, his symptomology and that he's had enough of those tests come back negative over the last 12 years, that they decided it was worth going for the big one first), BUT - Medi-Cal had to approve it first. After 10 days of it not being scheduled, I had to get involved again - and it was finally scheduled for Tuesday, 9/2 - two days before his follow up appointment on 9/4 with the surgeon (for which I am flying down to SoCal to attend with him again). I hope he will have some answers soon.

However, in reading the MALS patient advocacy FB group, it is discouraging to see that for many people, there is not one definitive surgical cure for this condition. Even with release of the median arcuate ligament, many people still experience the pain, either because the decompressed celiac artery is too damaged, or the celiac plexus (nerve bundle) near the celiac artery has become compromised/damaged by years of pain, and does not know how to "shut off." Many people require re-operation, e.g., to stent the damaged artery, to put in a nerve block or "strip" the nerves of the celiac plexus, or to have very serious arterial bypass of the damaged artery. Many others have complicating issues such as POTS (http://en.wikipedia.org/wiki/Postural_orthostatic_tachycardia_syndrome). I'm worried that if this doesn't fix it, he is going to be distraught - he has been ignored for so long, and to finally think he might be near a cure, only to have it not work completely or even mostly, will be a lot for him to bear.

And what if the CT angiogram does NOT show what the problem is?? That could be even worse!

I know, I'm buying trouble - but I'm one of those who has to know all the angles in advance.

 

[JackieOnLine]

not good, I hope whatever it is he gets some relief from anything that helps. chronic pain is such a damn shame and the life you have described is something nobody should have to go through. he's not even that old!

 

[Spiky Bugger]

Brief update: the doctors my brother saw on Aug 6th ordered the definitive diagnostic test for him (to my surprise, as usually MALS is diagnosis of exclusion, but I guess that between my advocacy, his symptomology and that he's had enough of those tests come back negative over the last 12 years, that they decided it was worth going for the big one first), BUT - Medi-Cal had to approve it first. After 10 days of it not being scheduled, I had to get involved again - and it was finally scheduled for Tuesday, 9/2 - two days before his follow up appointment on 9/4 with the surgeon (for which I am flying down to SoCal to attend with him again). I hope he will have some answers soon.

However, in reading the MALS patient advocacy FB group, it is discouraging to see that for many people, there is not one definitive surgical cure for this condition. Even with release of the median arcuate ligament, many people still experience the pain, either because the decompressed celiac artery is too damaged, or the celiac plexus (nerve bundle) near the celiac artery has become compromised/damaged by years of pain, and does not know how to "shut off." Many people require re-operation, e.g., to stent the damaged artery, to put in a nerve block or "strip" the nerves of the celiac plexus, or to have very serious arterial bypass of the damaged artery. Many others have complicating issues such as POTS (http://en.wikipedia.org/wiki/Postural_orthostatic_tachycardia_syndrome). I'm worried that if this doesn't fix it, he is going to be distraught - he has been ignored for so long, and to finally think he might be near a cure, only to have it not work completely or even mostly, will be a lot for him to bear.

And what if the CT angiogram does NOT show what the problem is?? That could be even worse!

I know, I'm buying trouble - but I'm one of those who has to know all the angles in advance.

I feel that when I know all the "where-as-es" in advance, I am over-prepared. Or maybe I'm just superstitious. But I need to know them in advance. So that I don't need to know them when the time comes. (Okay, so
I am crazy.). (Too.)

 

[DianaCox]

I want desperately for him to be well enough for me to be angry at him about the OTHER bad decisions he's made in his life, and to make him fix himself. Right now, I can't be that angry because I feel so sorry for him, and that is no way for either of us to feel.