Charcot Marie Tooth Disease

I am looking for anyone else out there with charcot marie tooth (CMT) disease who is in the process or having or has had gastric bypass surgery.  Anyone?????

Kel

Hi Kel....

I hope someone answers  your post with some info for you. I've only known of 1 person with CMT but they didn't have WLS.
He was a person of average healthy weight. 

Just wanted to say... hope you do find someone that also has this rare disease and that they can help you find the answers you seek...

Take Care....

JEllen

Hi Kel  Im not sure what your question is or if I can help but my Dad had CMT and so does my brother. If I can help let me know, D

 Hi, I have a good friend with this who had RNY last summer. She strickly followed her doctors instructions and the surgery went very well. I don't think she comes on here but I can email her some questions for you.

Terri

Thanks everyone who answered.  I have CMT and am trying to get WLS.  My CMT seems to be a real issue with my surgeon despite my neurologist writing him a letter stating she thinks it would be good for me.  Just wondering other peoles experience with it and if it was as much of as issue.  Thanks all!!!!   ~Kel

Kel, My son has CMT.  He is 20 and was diagnosed with CMT approximately 5-6 yrs ago.  I'm not sure where you are as far as CMT, but my son went from walking, to using a walker, to a wheelchair (still can walk a little).  He had a Baclofen pump put in to help with spasticity and had foot surgery on both feet.  He used to be very skinny and gained a lot of weight once he became less mobile and handicapped.  He developed sleep apnea and a large hiatal hernia (GERD).  He was on a lot of medications for various things (Gabapentin for nerve pain for the CMT, 3 different acid reflux meds for GERD, Topomax for migraines, etc.).  He just had a gastric bypass (laparascopic) on Feb. 2.  We had to go through seeing a nutritionist, psychiatrist, etc, but didn't have any trouble getting the surgery due to his health issues (being overweight, sleep apnea, GERD).  He was in the hospital for almost a week (they were more cautious with him b/c of his cir****tances, plus they had to do the hiatal hernia repair during the gastric bypass surgery).  He went from there to rehab (physical/occupational therapy to build his strength back up).  He was in the hospital/rehab a total of 23 days (just came home Friday).  I have mixed feelings b/c it's a huge life change, but I am hoping it will help him in the long run (healthwise and mobilitywise).  There were a lot of health risks if he didn't have the gastric bypass.   I hope this helps.  Feel free to write back if you want.  I joined this site just b/c I saw your question when I was doing a Google search.  The only way I could respond was by joining the site.  I'm not sure if there is a way to e-mail personally or not.  Haven't looked at the site enough.  I'm just a concerned mother and will be glad when things start getting easier for him (which means things are not easy on me if things aren't easy on him).  I still don't regret the surgery at this point.  His legs are shaking some today and I don't know if it's the CMT or the weakness from not wanting to eat/drink today.  I just have to believe that we did the right thing.  

Thank you for the reponse.  Your son's CMT is far more advanced than mine.  I am in my 40's and have AFO's on both legs, but am still mobile.  I also have sleep apnea and a hiatal hernia and issues with GERD.  I am 9 months post-op now and have lost over 100#.  Even though it started out unsure since my CMT Doc. wouldn't approve it, this surgery for me was just what I needed.  I have since switched to a different neurologist to manage my CMT and am very happy.  My sleep apnea has almost completely resolved, I did not have my hernia repaired so I will continue to be on PPI's most likely for the rest of my life, but my balance and energy level are so much improved I don't feel like the same person.  I wish your son a speedy recovery from surgery and hope he finds it helps him with his quality of life. 

Hi there,
Just stumbled accross your post.
I have CMT and having  a gastric band fitted tomorrow. If you need to know anything, i would be happy to answer them.

Donna x

Hi Kel, I have CMT and I just had gastric bypass surgey on August 6, 2012. I'm doing as well as expected, I'll be glad when the pain from the incisions is gone. Did you ever have your weight loss surgery, and how did it go?

Yes, I had surgery in May 2010.  The surgery went very well and I lost over 100 lbs.  Keeping the weight off has been a challange the past 6 months or so.  I am very glad that you responded to my post and I hope that your recovery goes well.  Do you have any mobility issues with your CMT?