Hey guys has anyone gotten surgery? I am getting ACDF a week and I’m pretty nervous for it. Any input would be great

In the coming year, I am planning to test various approaches in the fight against Hirayama. This after
my surgeons have denied me surgery, as my spinal cord is no longer considered too narrow, which is believed to be the cause of our illness.

With this new information, my research has shifted towards healing my nerves and muscle wasting, rather than finding a cure for Hirayama. Through my efforts, I have received confirmation that healing nerves can be a challenging task, but not impossible.

The following are the subjects I am planning to try:

1. Electromyostimulation: This therapy utilizes electrical impulses to stimulate muscles, which may help improve muscle strength and function, and potentially aid in muscle waste recovery.
2. Ultrasound therapy: This non-invasive therapy uses high-frequency sound waves to stimulate tissues, increase blood flow, and promote healing in nerves and muscles.
3. BPC157 and TB500: These are peptide compounds that have shown potential in promoting tissue healing and regeneration, including nerves and muscles.
4. ARA290: A synthetic peptide that possesses anti-inflammatory properties and may help reduce inflammation and promote nerve and muscle healing.
5. Cerebrolysin: A neurotrophic peptide drug that has demonstrated potential neuroprotective and neuroregenerative effects, which may aid in nerve healing.
6. HGH (Human Growth Hormone): HGH is a hormone that plays a role in tissue growth and repair and may have potential benefits for muscle healing.
7. NGF (Nerve Growth Factor): NGF is a protein that promotes the growth and maintenance of nerve cells and may aid in nerve healing and regeneration.
8. Lion's Mane: A medicinal mushroom known for its potential neuroprotective and neuroregenerative properties, which may support nerve healing and function.

Some of these compounds are banned by WADA (World Anti-Doping Agency) due to their performance-enhancing effects, but since I am not a professional athlete, I feel that these are worth trying. The order and combination of these compounds will be determined based on further research. While these effects have mostly been tested on animals in studies found on sources such as PubMed, anecdotal reports from communities like /r/peptides indicate that many individuals have resolved long-standing issues using peptides or similar compounds, particularly BPC157 and TB500, which are likely the first ones I will test. Additionally, I have been researching different diets, such as /r/carnivore, which have been reported to help people with autoimmune disorders, although I have yet to find something specifically related to Hirayama. Nonetheless, I may still try it for further investigation.

As a side note, to provide some hope but also to somewhat support for my findings, there is a case report of a woman with lifelong neuronal dysfunction that was cured using compounds in this case steroids, which can be read in this study.

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If any of y'all have some aditional information or have already tried something please inform me.

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Thanks,

I’ve had HD issues since I was about 17, 45 now.

Over the decades I’ve developed increasing chronic pain in my neck and shoulders near where the lesion is. I get stabbing pains in my neck when I move and my shoulders are spasmed and feel like they’re on fire. And some days I get nerve pain going down my shoulders and arms. Originally all of this was on my left side, where the motor deficits are, but the last couple of years it’s spread to my right side. MRIs don’t show anything abnormal besides the HD lesion, and EMG in my neck shows dystonic activity in places.

It is shitty but tolerable most days, but sometimes it becomes difficult to move or even sit up it’s so bad. And it makes exercising difficult — exercise, including my PT exercises, exacerbates the pain even on the normal days.

I know that pain is not a symptom typically described in HD, but most of the published reports seem to focus on people in their teens and 20s going through the initial diagnosis and stabilization process. Not down the road after decades of dealing with it. There are only a few reports I’ve seen of people who’ve had it for a long time, and I have seen a couple that involved spasms.

So, I don’t feel like it’s the HD itself causing the issues, but probably some downstream consequence of the HD — part of a chain reaction.

Does anyone else experience anything like this? So far my docs and I haven’t had much luck in getting the pain under control.

Hello all -- I've created this sub so that there will be a place for those of us who suffer from this rare condition to connect, discuss our experiences, and learn from each other.

This condition is so rare that even many neurologists aren't aware of it. Despite suffering with it since was 17, it took until age 43 for me to get a diagnosis. And this is after seeing some of the top neurologists in the world when I was 17-19. None of the names for this condition were ever even mentioned even over the 20+ years of doctors tracking my spinal lesion.

Once I saw a new neurologist recently, he took my history, looked at my MRI, and immediately said: "Hirayama. Go look it up. Come back to your next appointment and let me know if it sounds right to you."

And shockingly almost every case report I found described exactly what I had been going through since I was a teen.

So, welcome to r/HirayamaDisease, friends!