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HNPP treatment
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HNPP treatment

Is there any known treatment for HNPP?


This discussion is related to Auditory Neuropathy/HNPP.
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8 Comments Post a Comment
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Avatar_f_tn
Hello Dear,
As HNPP is usually very slowly progressive, and is a demyelinating condition, most treatment is aimed at managing the longer term problems.
These include:
• Pain Management - Medication, and sometimes counselling.
• Occupational Therapy - work and home adaptations, e.g. Kitchen devices, and also pressure relieving devices.
• Orthotic devices - to help with mobility difficulty caused by foot problems which can be helped with AFOs. These can include wrist and arm splints/support.
• Physical Therapy - To help maintain mobility. A therapist with a particular interest in neuromuscular conditions would be ideal.
• Surgery - Surgery is sometimes offered for nerve entrapment release. It is not generally thought to be effective as any benefits tend to be short-lived. However, individual differences require detailed assessment. Open surgery has been suggested rather than key-hole. Positioning during long periods of anaesthesia is quite important, to minimise the risk of position induced palsies
Refer  http://www.cmt.org.uk/index.php?option=com_content&task=view&id=123&Itemid=199
Best
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Avatar_n_tn
Dear Dr. Simran,
Thank you very much for this information. I am 69, had back surgery (first one lasted 4 hours and the second one four days later lasted 8 hours). From what I have read, body trauma and/or lying still for too long can bring on this condition. Am in physical therapy an am improving very very slowly.
Thank you very much for your response.
Sondra
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Avatar_f_tn
Hi,
In  HNPP a fairly mild pressure or trauma to a single nerve results in episodes or periods of numbness and weakness, similar to an arm or leg going to sleep.
You should-
Avoid prolonged activity on hands and knees that could cause nerve compression
• Avoid crossing legs at the knee
• Avoid sitting with legs crossed, tailor-style
• Avoid sitting in one position too long without readjusting
• Avoid holding the telephone in one position too long
• Avoid tying shoes too tight or using tight shoe straps  
• Take safety measures to compensate for loss of sensation
Best
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Avatar_n_tn
Hello,
Saw my neuro yesterday and I am his third patient in 37 years of practice. One was 60 and had had surgery and the other was 16 and had been unconsious after a drug over dose. Both of these recovered but very very slowly.  Will just keep working at my therapy and thank you very much for your responses.
Regards, Sondra
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Avatar_n_tn
Hi. I´m from Finland, so my english ain´t so good...
Is there any supplements wich helps the symptoms of HNPP?  For example lecithin?
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Avatar_m_tn
my husband was diagnosed with HNPP in the early 90's at Emory, at the time they did testing and he has deletion of PMP-22 they also determined it to be sporadic hnpp. He had TOS and had his thoracic ribs removed as well as surgery done in his elbow to make room for the nerve. Now he has developed 3 degenerative disks in his lumbar region and is experiencing severe pain. Over the weekend he developed sciatica, and his right leg is not supporting him at all. Which his right leg is the weakest and has no reflexes. He also has pretty severe foot drop in that leg. He is scheduled to have epidural injections starting next week. I am wondering if there will be any lasting effects from this. Will it do damage to the nerve? Is it a safe procedure? Thanks so much for your time.
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Avatar_m_tn
I was in the army when i was diagnosed with hnpp. Due to the training i lost feeling in my entire body some places like my arms more than in my legs. Im trying to see if there is any treatments that I could get that would help protect my nerves from damage while still doing activities that caused them to weaken? My main problem is my ruck sack which is a back pack that can at times weigh up to 190 pounds.
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Avatar_m_tn
Hi , my pressure palsys have in time become very painfull. The numbness from nerve pressure has developed into painfull jabbing (hot needle-like) discomforts in the muscles affected, mainly arms, shoulders, elbows. I never used to have these painfull experiences until about a year ago or so. It was only numbness/paralysis and lack of llimb functions before. Now added with a very uncomfortable pain.
I have H.N.P.P.   My neurologist says i have no reflexs in my right arm and left leg now. These are the most painfull areas, i also had 'ulnar nerve exploration' surgery about 5yrs ago, are these linked or mutations or general expectations within H.N.P.P. at a progressive level?
I'm 38 and have had palsys since aged 18. I've lost so much physical ability now, ive had to change career too. Any advice on pain relief,  or orthotic aid for arms?
Many regards, Stephen.
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