Median Arcuate Ligament Syndrome (MALS)

So glad I found this group. I have a lot of the same symptoms as a lot of you and have seen two vascular surgeons. No surgery now, they are waiting for me to get worse. I have Mesenteric ischemia and cannot find a group for it. I feel like a ticking time bomb. Do you wait until it becomes an emergency or find someone who will do surgery now in order to insure I don't lose part of my intestines?

Thank you Kari for your informative response.

Medical Marijuana is legal in New Mexico. You have to pass a medical review and get a registration card. That said I have been using a very low dose of Indica sublingually. The Indica hybrid of marijuana has a very small amount of THC, the substance that makes you high. I take an eyedropper-full at night if I'm having trouble sleeping. It basically makes you feel sleepy. It has not helped me with pain. And I don't feel any side effects.
I think I'll investigate sublingual Nitro. Nitroglycerin I assume.
And I'm definitely looking into trying a celiac nerve block.

Thanks so much.
Lou

@ruudolpho I agree, we do have a caring MALS community, and I also am grateful for the presence of everyone. It is a little less lonely be able to lean upon each other. So to answer your questions, you and I have similar surgeries. You are not quite at the 1 year mark, and for me the recovery was LONG, at least a year before my pain and stomach cramping issues went away. They gradually did improve, but it was a long slow recovery. There was a time about the 1 1/2 year mark where I could go out for meals and eat a regular full meal. The pain did improve, but the stomach issues... cramping, bloating, diarrhea/constipation has never resolved 100 percent... it has improved... but I still to this day have problems. I would hope your pain at this point would not be "great" so that makes me a bit concerned. You also have lost a significant amount of weight prior to the surgery if I remember correctly. Malnutrition is a BIG part of the exhaustion in my opinion, and that takes a long time to get back to baseline. With all of that said, Yes I did receive a celiac block after my surgery and it was immediately helpful, no pain, I could eat! (It was short lived for me, lasting only a week or so). From my understanding some people get relief for years from a block. Sometimes it requires several blocks. For me the bloating continues, gummy fiber helps. Have you had a full iron panel done? Many of us have iron deficiency anemia and that is another problem that is hard to resolve when it is difficult to take in food. I am on Tramadol, as my pain has returned. I have been on it before, and it is the only pain med that has helped. If I take it before meals the pain is considerably less and I am able to eat better- both amounts and quality of food. I will say, when the pain is significant I go into food jags, and usually it is chocolate that I eat... I can pop a few dove chocolates in my mouth and that will help, I would do that every few hours. However we can't live on chocolate can we? With the tramadol I am able to tolerate protein, fruits and veggies. Another med that was a rescue med for me was sublingual Nitro. I could not tolerate the headaches from the nitro when I used the slow acting or patches. When the pain was incredibly bad after a meal I could take the Nitro and find relief within about 5-10 minutes. I am have been on cymbalta now at 30 mg, but have not tolerated the side effects of 60 mg. It has not helped with the pain, but there is hope that it will at 60mg. I plan on trying to increase the dose again, but I want to do it when I have some time off. I finally got brave and asked my physician about medical marijuana, however she did not know enough about it to give advice either way, so that is on the back burner for now. Tramadol works awesome for me, but it is something that is addictive so doctors are very reluctant to prescribe it, additionally they are hesitant to use it long term. I honestly do not know what will happen if I was told to go off it, I do know my quality of life would go back to being in bed most days. I do want to find an alternative to being on Tramadol, but there is not much out there. I have tried acupuncture, meditation, walking, even started horseback riding lessons to give my mind something else to think of. I think trying a celiac block is worth it. I also think being in the pain you are in warrants further investigation, make sure that stenosis has not reoccured.

Hi Kari.
I'm so grateful for your presence and caring in our little MALS community.
I have a big question.
I had the open MALS surgery and celiac nerves cut in July of 2017. However, I still have great pain, cramping and exhaustion after eating small meals. I'm struggling to keep my weight up at 119 pounds. I'm 6 foot, one.
My Question is: has anyone had the celiac plexus block after the MALS surgery? And did it help with the pain and bloating and allow you to increase your food intake?
One more question.
Is anyone on pain meds? If so are they effective?
I'm taking Lyrica, 50 milligram capsules, one, 3 x's a day. Lyrica is for diabetic nerve pain. Currently I'm cutting down my dose and then bringing it back up so it can retain it's strength at the original dosage. The Lyrica is not a total fix, but it has helped

Any comments will of course be greatly appreciated.

Lou D'Amico

He only does Open surgery and he explained why in detail. He's one of the few doctors that actually sat down and talked to me like a person. He detailed what would be resolved, why he does things the way he does and what wouldn't probably remain (my throat issue).

Also, his second in command (for lack of a better term) has been there for me to answer all the complex questions you never think about on the spot. They stated that I'll be in the hospital for 5-6 days and will require at least a month of recovery time before going back to work. I don't know how I'll be able to research who the nurse staff will be other than here-say.

Managing my pain is easy as long as I don't do ANYTHING physical involving use of my core. No bending over, no motion that involves stretching, twisting or compressing my abdomen. No strenuous activity involving back muscles or core muscles. The big issue is that I'll start feeling normal/happy/motivated after a week or so and then start trying to get stuff done around the house and within hours I'll be sufficating in a big black hole of anxiety, nausea, dredd, pain, and bowel disfunction (if I really over do it) for multiple days. On the worst days I've seriously considered suicide as an acceptable alternative to the experience. I'm just glad there are good days to remind me that I will be able to recover from that hell. Maybe I don't pay much attention to the pain because I've experienced way worse.

As for the nerve block... I didn't find out until the day before the procedure that it was only a 24 hour block and I ended up having my left side go numb (now on my second week of that). They also ended up nicking my diaphragm; but, that healed up before I left the hospital.

Oh no! I have heard Dr. Hsu’s name But do not know much about him. Does he do laporscopic or open surgery if you don’t mind me asking? I had both my surgeries done at Mayo, by Dr. Gustavo Oderich, I am very happy with him and his nurse Jan. I was in the ICU for several days following my surgery and then went to the vascular floor and I have to say, I am very impressed with the vascular nurses! They were amazing! If you have open surgery having nurses that are trained in vascular patients was incredible. They were able to anticipate my needs before I did. If you have any questions about surgery, recovery time, what to expect please don’t hesitate to ask. I would be more than happy to share my experience, and I have been fortunate to have worked with several other MALS pts. This is not a fun diagnosis and for many of us is becomes a chronic condition, the surgery helps and for some it is a cure, for others the pain and symptoms does come back. But I have never met anyone yet, even those with severe complications say they regret having the surgery. How are you controlling the pain now, is the block still working? Usually it is very temporary.

No, and Dr. Hsu's scheduler won't call me back.

@dave06351 How does MALS just happen out of the blue is a GREAT question! It is my opinion that we have born with MALS, but symptoms can come and go, first being mild and over the years becoming progressively worse. Arteries are very flexible but over the years of being kinked they do not go back to the nice garden hose opening. I believe that when experience vasospasms within the arteries that causes angina or pain. MALS is a bit different for everyone and we need more research on this syndrome. I also believe as time goes on we will find out it is more than a anatomy problem, but we just do not have enough evidence of that. Would love to have some epidemiology studies done to see the overlaps in other connective tissue, autonomic and vascular diseases. Have you had surgery yet for your MALS??

@dave06351 @katy1921 I agree with what Dave wrote above. MALS is caused by a ligament causing stenosis, however other vascular issues maybe present for your Mom that have the same symptoms as MALS. It sounds like she has had an extensive work up, but I do not see that anyone has addressed any vascular issues as a possible cause of her problems. Has she seen a vascular doctor at all? I would be curious to know if she had elevated velocities of any of her abdominal arteries on doppler ultrasound. This is a non-invasive test that could give the doctors a better picture of what is happening. Several vascular problems lead to abdominal/intestinal angina angina. It maybe coincidence that her symptoms appeared at the same time of her surgery, however it is something that needs to be noted. Further work up is needed, as a celiac block is helpful for the pain but it does not tell you the cause. Do you have a vascular doctor in your area?

MALS can occur when two simultaneous conditions are prevalent. Aggravation of the Celiac Ganglion & the Median Accurate Ligament being in a location that can cause it to collapse the celiac artery or chafe it. It's possible that the surgery did aggravate the Celiac Ganglion; but, should not be a continuous problem.

Obviously, you need to keep on the surgeon that did the work and have him straigthen up since it happened under his hand.