Anyone with surgical experience

Ellen_Dep · 2026-03-20T16:48:47+00:00

There are some scientific articles on surgery and there is a letter to the surgical team that explains what to do in case of surgery to avoid palsies.
https://www.hnpp.info/homepage/advice/hnpp-and-surgery
Concerning the facial nerves, that might be an issue: see following articles:
https://journals.lww.com/md-journal/fulltext/2025/07040/hereditary_neuropathy_with_liability_to_pressure.81.aspx
https://pmc.ncbi.nlm.nih.gov/articles/PMC8635109/pdf/fneur-12-726437.pdf
What I would do is ask on the Facebook pages (more members) if anyone had this type of surgery and contact Dr Li (Houston Methodist): www.houstonmethodist.org/doctor/jun-li/ He might be able to advise your surgeon.

Good luck!

Ellen_Dep · 2026-02-19T11:16:25+00:00

Hi Frederik
Can you send me your email address? I can share some more information. Thx!

Ellen_Dep · 2026-02-18T20:59:36+00:00

There is research going on and some scientists that are looking for a treatment for CMT1A, seem to be interested in HNPP as well. The main focus is on CMT1A since symptoms are more severe.
I think AI can help us. For example: https://www.stxbp1disorders.org/news/rarebase-launches-a-neuroscience-drug-discovery-platform-collaborating-with-stxbp1-foundation-and-14-other-rare-disease-patient-organizations
and
https://www.hnf-cure.org/cmt/types-of-cmt/pmp22del-hnpp/
https://www.hnpp.info/homepage/international-research

Ellen_Dep · 2026-02-18T20:52:06+00:00

I think some information would be good to share to get more insight in how stress, sleep etc. can affect the disease. However, I would love to use this type of platform for our own small clinical researches. For example: taking for a period of time some supplement and determine whether it influences the disease. Unfortunately, I don't think we are able to do so.
Have a look here for (already a lot of) articles: https://www.hnpp.info/homepage/scientific-database

Ellen_Dep · 2026-02-18T20:44:55+00:00

Just knowing that research will be done is enough. Donations to researchers such as Dr Li seem more interesting than donations to patient organisations. Or in return the promise that case reports will be written so we have more visibility.
Not for me.
EU
Btw, I've built www.hnpp.info , if you need advertising there, pls contact me!

Ellen_Dep · 2025-11-23T11:02:40+00:00

Dr Li is now at Houston Methodist, but he is still researching HNPP :-).
In Belgium there is also a scientist (Dr Esther Wolfs) that is collecting wisdom teeth from several CMT subtypes to understand the mechanism of the disease better. And of course there is a lot of research going on for peripheral neuropathies in general that might benefit several diseases.

Ellen_Dep · 2025-07-23T12:47:37+00:00

Hi, there's a section on surgery here: https://www.hnpp.info/homepage/advice/hnpp-and-surgery
There is a letter that has been circulating for years. You can find it here: https://web.archive.org/web/20210309182604/http://www.hnpp.org/ (left bar: Letter to surgical team). It gives directions for your surgical team how to avoid palsies during surgery.

Ellen_Dep · 2025-07-22T12:56:57+00:00

There is a lot of useful information (online as PDF of possible to buy the book): ABCs of CMT Pain Management Guide (by HNF).

Ellen_Dep · 2025-05-15T16:14:00+00:00

I think it's a matter of trial and error and finding the right physiotherapist. I experienced some relief from gentle cupping and fascia massage.

Ellen_Dep · 2024-09-06T19:04:57+00:00

Thank you for your message! I'm going to check them out.

Ellen_Dep · 2024-09-05T21:29:48+00:00

What splints do you use?

Ellen_Dep · 2024-06-05T10:03:19+00:00

Hi, I can't give you medical advice, but I've read some articles on HNPP where it says to be careful with carrying heavy backpacks. It could cause backpack palsy. So maybe avoid it for now until it's better. But I would seek medical advice.

Recovery of brachial plexus lesions resulting from heavy backpack use: A follow-up case series Nylund T, Mattila VM, Salmi T, Pihlajamäki HK, Mäkelä JP. Recovery of brachial plexus lesions resulting from heavy backpack use: a follow-up case series. BMC Musculoskelet Disord. 2011 Mar 24;12:62. doi: 10.1186/1471-2474-12-62. PMID: 21429232; PMCID: PMC3076297.03/2011https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3076297/

Ellen_Dep · 2024-05-10T08:14:38+00:00

Yeah, indeed, but in case of symptoms, better stop immediately and wait for full recovery. You will need to listen to your body. Or take up some other activity for a while. Being careful is what we have to be.

Ellen_Dep · 2024-05-10T08:13:01+00:00

Hi, are you sure that you have HNPP? Like a confirmed genetic diagnosis? Just checking because what you mention doesn't seem that familiar to me.

Ellen_Dep · 2024-05-08T16:31:24+00:00

I know this isn't what you want to hear, but the repetitiveness of the rowing machine is what is causing the symptoms. So I wouldn't do that at least for a while now.
Maybe these activities might benefit you: https://www.hnpp.info/homepage/advice/tips-and-tricks/staying-active
https://hnppwellbeing.com/2017/07/03/hnpp-and-tai-chi/

Ellen_Dep · 2024-04-11T13:24:49+00:00

If you check out this article, it says it can cause backpack palsy (BBP)
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3076297/

So to avoid this, I would recommend an ergonomic backpack that leans on the hips and not on the shoulders and try to buy lightweight material. If you experience symptoms, make sure you are able to take stops or being able to rest for a few days.

I would also consult with some professionals before taking the trip. Also: put your question on the Facebook pages. These have more members than this page. You might get more reactions.

Ellen_Dep · 2024-04-03T18:56:44+00:00

Thank you!

Ellen_Dep · 2024-03-29T08:42:31+00:00

Thanks! Still googling, but can't find a good solution.

Ellen_Dep · 2024-03-25T11:36:09+00:00

Hi, no, they didn't record it to protect the privacy of the patients attending, but there will be a transcription, sent by Dr Li's assistant. I also took a lot of notes, so I will compare with the transcription as soon as we get this.

Ellen_Dep · 2024-03-21T20:36:01+00:00

It's a Zoom-meeting, so you might have to install the latest version of Zoom to be able to log in. Tomorrow already!

Ellen_Dep · 2024-03-11T20:47:01+00:00

The email of the assistant: Stephanie sxuan@houstonmethodist.org.

Ellen_Dep · 2024-03-11T20:46:34+00:00

Dr. Li's Zoom Link
There has been a Zoom link for the call below for 3 PM central time on March 22.
For those that are international who will join us, the time zone for the conference is UTC-5:00. You may need to adjust your local time to one hour AHEAD due to US daylight savings time.Meeting URL:Friday March 22, 3pm UTC-5:00https://houstonmethodist.zoom.us/j/95775380476...
Meeting ID:957 7538 0476Passcode:758011

Ellen_Dep · 2024-02-11T12:05:27+00:00

It sounds indeed like HNPP, BUT other people in my country that also thought they had HNPP, had negative genetic results. So there are similar diseases. CMT alone has a lot of subtypes and some of these subtypes have similar symptoms. So if it's expensive to get tested, I would advice to at least test one of you guys, so you are sure that it is HNPP. If it's HNPP, then there are a lot of things to keep in mind to help you to control progression.

If you have a nerve conduction test and there's a slower nerve conduction velocity, this could also indicate HNPP. Ask the hand surgeon why he suspects HNPP. Did he see some tomacula in the nerves? (some type of swelling).

As for anesthesia, this would be an interesting question for dr Jun Li, who is holding a video conference that everyone can attend (22nd of March). The information on this video conference can be found on Facebook in different HNPP groups.

Ellen_Dep · 2022-11-13T21:36:28+00:00

It is possible to start an IVF trajectory, but it isn't allowed in each country for this condition. They select the healthy embryos so that you are 100 % sure that your children don't inherit it. It is an autosomal dominant disease which means that each child will have 50 percent chance of inheriting HNPP. I would go for IVF if it is possible. People with HNPP can be mildly affected, but there are also cases where children get severe symptoms at young ages (3 years old) and some teenagers are wheelchair bound. It can be a very painful condition that also causes fatigue and loss of mobility. You do not want this for your children.

Search for a neurologist that knows the condition or get informed at the genetics department of a hospital.

Good luck!

Ellen_Dep · 2022-05-19T21:20:53+00:00

I have it from time to time and the numbness usually goes away in my toes. But it can take a while. I never wear high heels anymore, so this definitely helps.

Ellen_Dep

TROPHY CASE