Develop a Team 

Having a team on your side is the key to doing well mentally and physicaly with HSP.  While engaging with family and friends are valuable, so are your relationships with your medical team.  Part of your medical care team could include having a Primary Care doctor, a Neurologist, a Physiatrist or a Physical Medicine and Rehabilitation Specialist, a Spasticity Specialist, a Neuro Physical Therapist, an Occcupational Therapist, a nutritionist, and perhaps even an acupuncturist and massage therapist.  Having someone for your mental health is also a great resourse. It can be difficult to find someone who knows how to counsel for 'neurodegenerative diseases' especially if you have Rula with Covered California-this is not a therapy category.   Perhaps one of your specialists on your team knows of specific therapists for help.  Something designed to improve your resilience skills independantly, and it's free, is at Dovetail Learning.  They teach 6 skills including breathing mindfully, letting go, finding gratitude etc. to help ground yourself and strengthen your well being and resilience.  

Visit a Physiatrist

A physiatrist is a doctor specializing in Physical Medicine and Rehabilitation (PM&R), who treats injuries and illnesses affecting the muscles, bones, and nervous system to improve a patient's function and quality of life. They diagnose and manage pain, help patients recover from injuries, and design comprehensive, often non-surgical treatment plans that may include physical therapy, medication, and various medical procedures.  My physiatrist diagnosed my issue in a few minutes.  She sent the referral for a nerve ablation and I was on my way.  After my treatment, I felt better than I've felt in years.  Mine also referred me to a Spasticity Specialist.

I listened to an SPF Talk and a sweet English lady said, "Everyone with HSP needs to see a physiatrist," and I agree. 

Several of the treatments on this page come from the SPF TALK called Spasticity Management with Dr. Bianca Martinez MD, FAAPMR. 

Spasticity Relief with Injection Therapies 

The procedures on this page are most effective when combined with neuro physical therapy and stretching exercises to build strength and function.  Talk to your Physical Medicine & Rehabilitation doctor about some of these injection procedures for spasticity relief. 

Cryoneurolysis uses liquid nitrogen that forms an “ice ball” which is used to temporarily disable peripheral nerves that innervate spastic muscles. It provides potential reduction in muscle stiffness in a range of areas including places for managing foot drop. The effects can last from 3 to 12 months.  

Cryoneurolysis is a newer treatment, so it  is more difficult to find a physician who performs it in the USA.. Medicare does cover cryoneurolysis.  The closest doctor to SD that I could find who preforms cryoneurolysis is Sheng Li – Houston, Texas

• Dr. Li is a physical medicine & rehabilitation physician at TIRR Memorial Hermann in Houston- contact (800) 44-REHAB (73422).

Other doctors are at Harvard Spaulding Boston, Atlanta for Adults and Kids, and University of Kentucky Lexington. 

After seeing many videos of it, I am eager to try cryoneurolysis.

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Chemoneurolysis is a nerve block using phenol to destroy the peripheral nerves in the upper and lower limbs that are innervating the overactive muscles resulting in muscle relaxation and reduction of contractions.  Phenol is a targeted chemical denervation which can be used to treat multiple areas - without the same cumulative dose limitations of botox. Phenol acts immediately where botox usually takes several days for it to take effect.  In addition,  phenol 's effects tend to last longer than botox.  Phenol lasts for approximately 6 months or longer in many cases.  It's also more affordable than botox.  Not as many doctors preform Chemoneurolysis as do botox, so have patience finding for a provider.  Try UC San Diego Health, Scripps Health, or other specialized pain/neurology clinics which have comprehensive pain management and neurology departments. 

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Chemodenervation with botulinum toxin is injected directecly into the spastic or overactive muscles; disrupting the release of acetocholine at the juncture between the nerve and the muscle.  By doing that, it destroys the periphreal nerves that innervate the muscles.  This reduces muscle contractions and relaxes the muscles.  It avoids systemic effects as it is confined to the spacific area rather than being absorbed into general circulation affecting the entire body.  The brand names for this procedure are Botox, Dysport, Xeomin, and Myobloc.  Botox takes 3-4 days to take effect.  It peaks in 2-3 weeks and lasts for 3 months.   It is approved for the spasticity in the arms and legs, but doctors may inject other spastic muscles which have been found to be successful.  It can be difficult to find the right muscle, and the right dose, so you may need patience to find its success.  Some people try once and give up.  It can take more persistance than that.  Botox can also be used for an over-active bladder.

Overactive Bladder 

There are lots of options for overactive bladder remedies including pelvic floor exercises.  For women who are post menopausal, taking hormone replacement therapy medicine like estrogen (premarin, estrace) or using patches like (Vivelle-Dot, or Climara) can help. Applying a Premarin cream to the vaginal area is another option.  For men and women another avenue is to botox, or this less invasive PTNS- which is non-toxic.

The nerves of the sacral plexus regulate bladder and rectal function. Percutaneous Tibial Nerve Stimulation (PTNS) uses an acupuncture like needle inserted just above the ankle to deliver gentle electrical stimulation that modulates the sacral nerve plexus.  Treatment typically consists of 10 weekly sessions, each lasting about 30 minutes. Approximately 66% of patients experience significant symptom improvement.  You will likely need a referral to a Urology or OB/GYN department (many treat both women and men). If you have Kaiser San Diego, you might try Dr. Jasmine Tan-Kim in San Marcos. I am not aware of anyone with HSP who has tried PTNS. I had considered it but chose hormone replacement therapy instead. PTNS may be a good option when HRT is discontinued around age 60.

Surgeries

Your help is needed!  

Please tell us: What medical injections or surgeries have you tried to lessen the severity of HSP symptoms in the trunk and lower body? How successful was it for you? Which doctors did you see, and at which San Diego locations did you receive treatment? By sharing your experiences, you could potentially help others with HSP identify possible treatment options and connect with specialists sooner.    

 hsp-sandiego@sonic.net

Future considerations not yet FDA approved for spasticity/pain:

Hyaluronidase - an enzyme that breaks down the hyaluronic acid which accumulates in paretic muscles and causes muscle stiffness without causing the muscle weakness commonly seen in botox.  Hyaluronidase is currently a delivery facilitator used with other drugs to help them spread and absorb in tissue.  UC San Diego Health Neurological Institute has neurology specialists who manage complex conditions (e.g. spasticity).  So they may have this as an option in the future.   

Trenibotulinumtoxine- TrenibotE has a faster toxin onset and shorter duration (2-3 weeks) than Botox,Xeomin, Daxxify.

DaxibotulinumtoxinA - Daxxify is a neuromuscular blocking agent similar to Botox with a longer duration than Botox.  It does not use human albumin which contributes to its having a longer duration of effect.  It is approved for cosmetic reasons and for cervical dystonia but not spasticity nor chronic pain.  Phase 2 trials were completed for adult upper limb spasticity - awaiting FDA approval.