Had a heart attack in Sept 2021. Was put on an ekmo for 2 weeks before my Implant on 10/1. The ekmo destroyed my feet causing neuropathy in both feet and ankles. Also it caused compartment syndrome in my lower right leg which caused me to have surgery on it. Luckily I did not lose my right leg from knee down.
So when I go to bed and its like having 2 clubs. a feeling that will not go away and causes me to struggle to walk at times. It doesn't stop me from sleeping tho.
Similar to Lee's comment, immediately after the LVAD I started experiencing what I'll call numbness and general discomfort in both feet and ankles. Nobody seems to be able to explain why but unfortunately neuropathy, numbness, tingling, etc., in one or both feet seems to be common post LVAD. There are many 'cure sellers' who will sell you special shoes, inserts, vibrating tables (foot sized), toe spacers, heated socks (winter), balms... Some of them provide some relief but unfortunately my docs say these feet/ankle neuropathy problems are quite stubborn. I've been going to an acupuncturist for it and am next trying a massage therapist. The podiatrist injected my ankles and toe joints with steroids that were incredibly painful. They did absolutely nothing (but hurt). For exercise I switched from walking to cycling. Nothing good happens when I stop moving.
I got off of that stuff. It's a step away from an opioid and seeing things....i was hallucinating. The curtains were swaying in the wind.....the only thing is it wasn't windy in the house and I kept seeing a black cat!!!! No more for me, it really didn't do anything anyway.
Creating a personal link between LVADers,and their caregivers, with others in the same situation in there own area. A place to post your information so others can connect with you.
Pins and Needles
Fri, 06/16/2023 - 3:42PMHi Emma;
Had a heart attack in Sept 2021. Was put on an ekmo for 2 weeks before my Implant on 10/1. The ekmo destroyed my feet causing neuropathy in both feet and ankles. Also it caused compartment syndrome in my lower right leg which caused me to have surgery on it. Luckily I did not lose my right leg from knee down.
So when I go to bed and its like having 2 clubs. a feeling that will not go away and causes me to struggle to walk at times. It doesn't stop me from sleeping tho.
In reply to Pins and Needles by Lee S.
Emma K.Oh gawd, that sounds…
Tue, 06/20/2023 - 6:43AMOh gawd, that sounds horrific. Hope you get better soon.
Emma
Pins and Needles
Tue, 06/20/2023 - 4:18AMSimilar to Lee's comment, immediately after the LVAD I started experiencing what I'll call numbness and general discomfort in both feet and ankles. Nobody seems to be able to explain why but unfortunately neuropathy, numbness, tingling, etc., in one or both feet seems to be common post LVAD. There are many 'cure sellers' who will sell you special shoes, inserts, vibrating tables (foot sized), toe spacers, heated socks (winter), balms... Some of them provide some relief but unfortunately my docs say these feet/ankle neuropathy problems are quite stubborn. I've been going to an acupuncturist for it and am next trying a massage therapist. The podiatrist injected my ankles and toe joints with steroids that were incredibly painful. They did absolutely nothing (but hurt). For exercise I switched from walking to cycling. Nothing good happens when I stop moving.
I wish you the best.
Rick
In reply to Pins and Needles by Richard G.
Emma K.That sounds horrific . Hope…
Tue, 06/20/2023 - 6:37AMThat sounds horrific . Hope you find a cure.
many thanks
emma
I suggest you remove…
Tue, 06/20/2023 - 5:50AMI suggest you remove blankets , your legs may be to warm and stay hydrated 🤞
In reply to I suggest you remove… by Ivan M.
Emma K.Many thanks Emma
Tue, 06/20/2023 - 6:40AMMany thanks
Emma
No Cure
Tue, 06/20/2023 - 6:42AMThere is no cure......you just have to deal with it.
When I was in the hospital I kept asking about it and was basically ignored!!!
Pins and Needles
Tue, 06/20/2023 - 2:22PMI have an LVAD 4 yrs now and my feet and fingers tingled at night. My primary DR put me on 400 mg of Gabapentin at bed time and now I can sleep.
In reply to Pins and Needles by Bob W.
Lee S.Gabapentin
Tue, 06/20/2023 - 3:58PMI got off of that stuff. It's a step away from an opioid and seeing things....i was hallucinating. The curtains were swaying in the wind.....the only thing is it wasn't windy in the house and I kept seeing a black cat!!!! No more for me, it really didn't do anything anyway.
Ask doc for Lyrica its…
Tue, 06/20/2023 - 7:07PMAsk doc for Lyrica its nerves. I take the 100mg in morning and night.
In reply to Ask doc for Lyrica its… by Tom C.
Emma K.Will do Many thanks Emma
Thu, 06/22/2023 - 11:57AMWill do
Many thanks
Emma
Pins and needles my need…
Wed, 07/05/2023 - 7:27PMPins and needles nay need Lyrica. I have used Lyrica generic for years for needles and pins.
I do have more problems with my feet now COMPARED to before LVAD.
TomC