While MALS is listed as a rare disease, Dr. Scholbach and I do not believe MALS is rare; it is uncommonly diagnosed because it is unknown.
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I’m sorry to hear she is struggling. I had MALS with surgery at Mayo Rochester. 20+ symptoms disappeared. A year later had some return of symptoms at the same rate and time that my excess low back curved worsened because of hip dysplasia/arthritis. Found Dr Scholbach’s article about excess low back curve causing compression syndromes like MALS. My PT and I developed conservative management strategies and published them last week in a journal. Maybe something in this article may help your daughter. Not all MALS cases are caused by excess spine curve, but it’s worth a try before trying surgery. Hope you find some good help.
I had lap. 2 months nausea afterwards. 10lb loss of fluid/edema within a few days of surgery, which was a good thing. 8-10 months intermittent fatigue. Surgical pain front and back (back side of MAL was more painful) on and off for 10-12 months, always exacerbated by sitting. Recovery rate improved dramatically 2 months later when I got an elevating workstation and stopped sitting altogether. Sitting too much will still bring on irritation and some mild MALS Ssymptoms. DON’T SIT! (Sorry about my shouting but it’s very important).
Full recovery of 15-20 symptoms immediately after surgery. Good luck. I wish you well!
With all due respect, That is a horrible article because it says there are many psychiatric diagnoses among people with MALS. It should have said “psychiatric MISdiagnoses” because most of us with MALS have had some physicians use a psychiatric diagnosis as a wild card when they don’t know to check for MALS. This article will only serve as another barrier to getting the right tests and treatment. The majority of us have been misdiagnosed; the article didn’t even check to see if those psychiatric comorbiditues were errors.
Dr. Kendrick from Mayo in Rochester did lap MAL release over a year ago. I had total relief of symptoms for about a year. Now symptoms are starting to return, which seems common with lap surgery. Sxs are usually triggered by sitting for 1 hour or more because compression is the worst in this position. Dr. Hsu in Connecticut seems to have the best outcomes from his open surgery as evidenced by the majority of his patients who had his surgery within the last 2 years (see Facebook group “MALS Awareness”). Prior to that, some of his patients are still struggling (see Facebook “MALS Still Struggling”). Dr. West and Dr El Hayek seem to have many MALS pts who are pleased for the most part. The best advice I can give is to educate and advocate for yourself before jumping into surgery. The best resources are pts with MALS in MALS Pals, MALS Awareness, and MALS still struggling. The awareness group has the most educational resources in their files.
It can feel scary right away when you get a MALS diagnosis but know that you do have time to educate yourself about many important things: reputable MALS surgeons, surgery options (lap, robotic, open), pros and cons of surgery, management of MALS symptoms. Many people have jumped too quickly and are suffering greatly now. You can find documents about MALS and doctor’s lists on the MALS Awareness Facebook page. Read members’ stories and learn about reputable doctors in Connecticut, Cleveland, and Texas…
MALS is serious and unfortunately many doctors are not knowledgeable, even if they think they are; therefore, it is imparative that you take the time to educate yourself. MALS Awareness is the best resource I have found and I have spent plenty of time searching professional journals and have joined other MALS groups.
You likely have had this many, many years, so you do have some time to learn more about it as long as you are not suffering intensely right now. Self advocacy is essential right now.
I wish you well.
“Feeling crummy” for a week is very alarming and concerning to me. I had lap surgery and it was way more difficult than the C-sections I had. I was back at work after 1 week but should have taken 2-3 weeks off. Recovery was 2 steps forward, 1 step back. Serious nausea lasted exactly 2 months after surgery and that is the norm. Intermittent pain lasted 6-10 months and was aggravated by sitting. I still can’t tolerate sitting very much and it’s been a year since surgery. My recovery from lap was average or better than average. I’ve read many, many testimonies on Facebook MALs Awareness and learned from them that open is more difficult than lap but most have better long term results tha lap. Much pain and nausea for 2 months and many say the 3rd week and 3rd month are tough set backs.
“Feeling crummy for a week” sounds very disconnected with actual MALs patients’ recovery. It’s a highly deep, invasive surgery. They start in the front and go all the way to the spine, cutting through many tissues. Pain is in front and in the back and it’s very hard to roll and sit up for a couple weeks.
A desk job is harder on the surgical site than a standing job because sitting causes compression in the MALs area. I got an elevating work station after 2 months and that is when I really noticed better healing and reduced pain.
Just be aware that surgery recovery for most of us is very challenging, especially the first 3 months but fatigue up to a year for some. So plan accordingly and avoid any major energy consuming tasks and events for 3 months.
With that said, I’m still so grateful for surgery because life is 95% better now. Life is great and I’m full of joy again. I wish you well with a quick recovery.