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Natural Remedies for Gorham-Stout: Holistic Approaches

on Apr 22, 2023| Modified on Apr 25, 2023
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Gorham-Stout, also known as Gorham's disease or disappearing bone disease, is a rare and progressive skeletal disorder characterized by the dissolution of bones and their replacement with noncancerous, fibrous tissue.1 The condition can be challenging to manage, and while medical intervention is essential, incorporating natural remedies may provide additional support. In this article, we will explore Gorham-Stout, its symptoms, and five natural remedies that may help alleviate the discomfort.

Understanding Gorham-Stout

What is Gorham-Stout?

Gorham-Stout is a rare disease affecting the bones and lymphatic system. It often begins in childhood or adolescence, but cases have also been reported in adults.2 The exact cause remains unknown, and there is currently no cure. Treatment usually focuses on managing symptoms and preventing complications.3

Symptoms of Gorham-Stout

Some common symptoms of Gorham-Stout include:4

  • Pain and swelling in the affected area
  • Bone fractures
  • Decreased mobility and function
  • Limb-length discrepancy

Natural Remedies for Gorham-Stout

Although Gorham-Stout has no definitive cure, the following natural remedies may help alleviate symptoms and improve overall well-being.

1. Diet and Nutrition

A balanced diet rich in vitamins, minerals, and antioxidants can support bone health and overall wellness. Consuming foods high in calcium and vitamin D, such as dairy products, leafy greens, and fish, may help maintain bone density and reduce the risk of fractures.5

Additionally, incorporating anti-inflammatory foods like turmeric, ginger, and omega-3 fatty acids may help reduce inflammation and promote healing.6

2. Physical Therapy

Physical therapy can help patients with Gorham-Stout maintain mobility and function. A tailored exercise program can help strengthen muscles, improve balance, and reduce pain.7

Consult with a physical therapist to develop an individualized exercise plan.

3. Acupuncture

Acupuncture has been shown to effectively manage pain and improve overall well-being in various musculoskeletal conditions.8

While more research is needed to determine its efficacy in Gorham-Stout specifically, acupuncture may relieve pain and discomfort.

4. Massage Therapy

Massage therapy can help manage pain, reduce stress, and promote relaxation. Regular sessions may help alleviate muscle tension and improve circulation around the affected area, potentially reducing inflammation and promoting healing.9

5. Mind-Body Techniques

Mind-body techniques, such as meditation, yoga, and deep-breathing exercises, can help manage stress, reduce pain, and improve overall quality of life.10

Incorporating these practices into a daily routine may provide additional support for individuals with Gorham-Stout.

Conclusion

Gorham-Stout is a rare and challenging condition to manage. While medical intervention is crucial, incorporating natural remedies like diet modification, physical therapy, acupuncture, massage therapy, and mind-body techniques may help alleviate symptoms and improve overall well-being. Always consult with a healthcare professional before starting any new treatment or therapy.

Citations

  1. Angelini A, Mosele N, Pagliarini E, Ruggieri P. Current concepts from diagnosis to management in Gorham-Stout disease: a systematic narrative review of about 350 cases. EFORT Open Rev. 2022 Jan 11;7(1):35-48. doi: 10.1530/EOR-21-0083. PMID: 35076412; PMCID: PMC8788153.
  2. Heffez, L., Doku, H. C., Carter , B. L., & Feeney, J. E. (1983). PerspecHeffez L, Doku HC, Carter BL, Feeney JE. Perspectives on massive osteolysis. Report of a case and review of the literature. Oral Surg Oral Med Oral Pathol. 1983 Apr;55(4):331-43. doi: 10.1016/0030-4220(83)90185-8. PMID: 6574409.
  3. Bruch-Gerharz D, Gerharz CD, Stege H, Krutmann J, Pohl M, Koester R, Ruzicka T. Cutaneous vascular malformations in disappearing bone (Gorham-Stout) disease. JAMA. 2003 Mar 26;289(12):1479-80. doi: 10.1001/jama.289.12.1479. PMID: 12672746.
  4. Dellinger MT, Garg N, Olsen BR. Viewpoints on vessels and vanishing bones in Gorham-Stout disease. Bone. 2014 Jun;63:47-52. doi: 10.1016/j.bone.2014.02.011. Epub 2014 Feb 26. PMID: 24583233.
  5. Harvard T.H. Chan School of Public Health. (n.d.). Calcium and Milk. https://www.hsph.harvard.edu/nutritionsource/milk/
  6. Harvard T.H. Chan School of Public Health. (n.d.). Anti-inflammatory Eating. https://www.hsph.harvard.edu/nutritionsource/healthy-weight/diet-reviews/anti-inflammatory-diet/
  7. American Physical Therapy Association. (n.d.). Bone Health. https://www.apta.org/patient-care/evidence-based-practice-resources/clinical-summaries/osteoporosis
  8.  Vickers AJ, Linde K. Acupuncture for chronic pain. JAMA. 2014 Mar 5;311(9):955-6. doi: 10.1001/jama.2013.285478. PMID: 24595780; PMCID: PMC4036643.
  9. Field T. Massage therapy research review. Complement Ther Clin Pract. 2014 Nov;20(4):224-9. doi: 10.1016/j.ctcp.2014.07.002. Epub 2014 Aug 1. PMID: 25172313; PMCID: PMC5467308.
  10. National Center for Complementary and Integrative Health. (2019). Mind and Body Practices. https://www.nccih.nih.gov/health/mind-and-body-practices
The comments below reflect the personal experiences and opinions of readers and do not represent medical advice or the views of this website. The information shared has not been evaluated by the FDA and is not intended to diagnose, treat, or prevent any disease or health condition. Always consult a qualified healthcare professional for medical concerns.
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Gorham-Stout Remedies

Posted by Shana (North Carolina) on 04/22/2023

Is anyone familiar with Gorham-Stout, also known as Disappearing Bone Disease?

GSD (Gorham-Stout Disease) is a vascular anomaly thought to be an error in the development of the lymphatic system. As bones are routinely broken down, they are replaced with lymphatic vessels and a fibrous band of connective tissue instead of more bone. Also known as Vanishing Bone Disease, it is listed in the international directory of rare diseases (https://rarediseases.org/rare-diseases/gorham-stout-disease/ and https://www.childrenshospital.org/conditions/gorham-stout-disease#:~:text=How we care for Gorham-Stout disease).

Up until recently, it was thought to be a disease found exclusively in children, but now that more adults are reporting having symptoms, there is thought that it might even be a form of osteoporosis. Signs of the disease can vary, but for me, it first manifested as small divets or depressions in the skull I could feel with my fingers that grew larger with time. I wore hair extensions for years and thought it might have been caused by that.

My current understanding is that the diagnosis cannot be fully confirmed without doing a skull biopsy, and this is a high-risk procedure that often results in ongoing cerebral-spinal fluid leakage. It is discouraged by the doctors I have seen. Right now there is no known cure for Gorham-Stout. Current therapy is experimental and consists of a combination of bisphosphonates, interferon and an immunosuppressant drug called sirolimus. All have disturbing side-effects that seem - at least at this point in my situation - potentially worse than the disease itself. I personally have a poor tolerance of bisphosphonates, and my mother, in fact, died as a direct result of her taking Fosamax.

If anyone has knowledge of this disease and any recommendations or referrals for me to contact I would be extremely grateful. Any information at all would be helpful. Thank you.

Replied by Art
(California)
04/22/2023
2326 posts

Shana,

Sirolimus/Rapamycin does have significant side effect potential, however it has demonstrated effectiveness in GSD as discussed here :

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7446191/

Here is a relevant quote from the case report :

' We prescribed sirolimus, which is an oral mTOR inhibitor, for two consecutive years. The boy recovered well without other progressive bone lesions and participates in normal daily activities. His growth and development are the same as that of his peers.'

Interestingly, melatonin has shown the ability to reduce the side effects of Rapamycin while being additive to its positive health effects as discussed here :

https://scholars.uthscsa.edu/en/publications/combination-of-melatonin-and-rapamycin-for-head-and-neck-cancer-t

Moreover, melatonin has shown to exert protective effects against bone degeneration as discussed here :

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7979260/#:~:text=Melatonin also attenuates the autophagy, calcium metabolism and prevents osteoporosis.

Here is a relevant quote :

' Melatonin exerts numerous physiological effects, including inducing anti-inflammatory and antioxidative functions, resetting circadian rhythms and promoting wound healing and tissue regeneration. Melatonin also participates in the health management of bone and cartilage. In the present review, the potential roles of melatonin in the pathogenesis and progression of bone injury, osteoporosis, OA and periodontitis are summarized. Furthermore, the high efficiency and diversity of the physiological regulatory effects of melatonin are highlighted and the potential benefits of the use of melatonin for the clinical prevention and treatment of bone-related diseases are discussed. '

Since melatonin has synergy with Rapamycin, it is possible that that effect may allow you to use a lower dose of sirolimus, potentially further reducing the potential of any side effects. Melatonin has many know health benefits and works to maintain homeostasis in the body, which may mean that melatonin can work in trying to prevent the cause of GSD.

Art

Yomama
(North Carolina)
04/24/2023

Thank you so much for your reply, Art. I am familiar with this research and am already on melatonin and a commercially available calcium w/strontium supplement program called AlgaeCal. The research studies look very good on paper, but my endocrinologist thinks the results are too good to be true. Still, she is supporting me in taking it because I cannot take the bisphosphonates. Current GSD doctors won't administer Sirolimus without the bisphosphonates, so this is something of a sticking point right now. Also, the docs I am seeing have not been able to show me "numbers", so that I can see what changes are occurring between dexa scans. Is there any other way to detect improvement or remission? How else do they know what is or isn't working?

Replied by Gary
(Kitchener On)
04/22/2023

Hi Shana, I wish I had imfo.on your condition but I think there is something to help you. I come across Blackseed Oil.

Legend has it that it can cure everything but death.

All the best,

Gary

Yomama
(North Carolina)
04/24/2023

Used this many moons ago...it may be worth trying again. Thank you!

Art
(California)
04/25/2023
2326 posts

Yomama,

The bisphosphonates are used for osteopenia and osteoporosis, so this sounds like one part of your treatment is to improve the bone material itself. I believe that melatonin is better for this purpose as well as the common supplements used for osteoporosis such as boron, vitamin D, magnesium glycinate, vitamin K2 menaquinone 7, strontium, berberine, calcium, etc.

The bisphosphonates seem to have serious side effects and in some cases actually increase risk of fracture as outlined here :

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5338252/#:~:text=In this subgroup of bisphosphonate, an increased risk of fracture.

Here is a relevant quote :

' In this subgroup of bisphosphonate-treated patients that suffered a fracture, the accumulation of microcracks following treatment with bisphosphonates may have compromised the trabecular microstructure. As a result, there may have been weakening of the bone and consequently, an increased risk of fracture. '

This is the opposite of what an osteoporosis treatment should do! I think the natural methods such as melatonin and ones listed above would be much better for the purpose of improving bone integrity and when you look at the listed side effects of bisphosphonates, it really makes you wonder. Here are side effects related to the bisphosphonate, Fosamax :

https://www.drugs.com/fosamax.html#side-effects

Fosamax side effects

Get emergency medical help if you have signs of an allergic reaction to Fosamax: hives; wheezing, difficulty breathing; swelling of your face, lips, tongue, or throat.

Stop using Fosamax and call your doctor at once if you have:

  • chest pain, new or worsening heartburn;

  • difficulty or pain when swallowing;

  • pain or burning under the ribs or in the back;

  • severe heartburn, burning pain in your upper stomach, or coughing up blood;

  • new or unusual pain in your thigh, hip or groin;

  • jaw pain, numbness, or swelling;

  • severe joint, bone, or muscle pain; or

  • signs of low calcium levels - muscle spasms or contractions, numbness or tingly feeling (around your mouth, or in your fingers and toes).

Common Fosamax side effects may include:

  • heartburn, upset stomach;

  • stomach pain, nausea;

  • diarrhea, constipation; or

  • headaches; or

  • bone pain, muscle or joint pain.

This is not a complete list of side effects and others may occur. Call your doctor for medical advice about side effects. You may report side effects to FDA at 1-800-FDA-1088.

::::::::::::::::::::::::::::

Art


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