“During my search for a solution to my neurological problems and EDS, I met some of the best neurosurgeons in the world. I had to make a decision about who would open my skull and try to give me a better quality of life. I truly believe that the doctors I chose to operate on have played a crucial role in improving my life – especially since I have already undergone multiple brain and back surgeries, and have two bulging intervertebral discs that will eventually need treatment as well.
Dr. B. is not only my trusted neurosurgeon, but also my healthy portion of tough love: he gives me direct criticism when I don’t keep my part of the bargain and don’t keep my body strong enough to support all his hard work.
When you’ve had a medical relationship with a neurosurgeon for more than 20 years, there are highs and lows, and we don’t always agree. But he always does what is best for me. This man has saved my life several times. He is the best at his job – he made my life possible and even gave me the chance to have two children in the middle of all my surgeries.
Finding a neurosurgeon who thinks with you and tries to understand and resolve your complex EDS situation is extremely rare. I cannot recommend Dr. B. enough for any fusion or decompression surgery. He is extraordinarily good at what he does and a leading researcher with advanced techniques in neurosurgery – and sometimes that is exactly what you need.”

Dr. B. not only gave me the life with my children but also walked me through my mommy worries, of giving my children my same birth defects. Dr. B was amazing at guiding me through the different therapies to keep my children off the surgical table. I own my life to Dr. B and my children know where they go if anything comes up. Hands down Dr. B is the only surgeon that will ever touch my spine.”

A young woman, was no longer leaving her home due to a serious illness. The only chance to improve that was surgery abroad. It truly turned out to be a helpline to a new life. Less pain, much more energy and therefore less tired, no more just a fever or a much too high heart rate, being able to enjoy the sun and a cup of coffee and no more dizziness. Within three months, that was the harvest of the heavy surgery that was done.

All that already far outweighs the limitation of a stuck neck. It also offers no guarantees for the future. But this lady goes into that one with confidence. Because being able to reestablish a social life and walk her dog is a huge step forward. It is also rehabilitation afterwards with the help of a physical therapist, among others, and with great support from her social circle.

The operation was only possible because of crowdfunding. The medical expenses could eventually be paid by the donations of all those who cared about the fate of the womenorm. It is heartening that this could happen. All those people together formed the helpline she needed to get the neck fastened.

This lady says:

This lady says, “Melissa needs to crowdfund for an operation that will give her quality of life again. I had this surgery over six months ago with wonderful results. I grant Melissa the same opportunities. Off with that brace! On to life!”

Source: BBC News

A mother recovering from life-saving surgery in the US is founding a charity to help others with the same rare condition.Samantha Smith (32) of Rochdale, Greater Manchester, underwent surgery in February to reconstruct her neck, which had been weakened by Ehlers-Danlos Syndrome.

She said she wanted to “raise the flag” for EDS patients in the United Kingdom, as care is not always available through the NHS.

In Ms. Smith’s case, her neck muscles became too weak to keep her head upright without a neck collar.She said it was an “emotional roller coaster” since her diagnosis in 2017, before she finally underwent a £250,000 operation at the Mayo Clinic in Arizona to have the bones in her spine fixed.The treatment was not offered by the NHS, which explained that decisions about surgery are made “based on whether the benefits to the individual patient outweigh the risks.”The mother of two raised the money through crowdfunding.

Mrs. Smith, mother of Jensen (10) and Brooke (9), said, “I am rebuilding my life now and enjoying immensely being able to do things with the children again.”

Ms. Smith said she was “grateful and happy” to have been able to undergo the surgery, but that “more treatment options should be available here.”She said that inspired her to establish a charitable organization to help others, raise awareness and provide “care and a future” for people suffering from the condition.The charity will be called Save Samantha – the same name she used to raise money for her surgery – and Ms. Smith is in initial talks with the Charity Commission.She added: “People with EDS should not be left to languish and die.”

Samantha became a mom after her surgery!

My daughter had severe gait problems. She simultaneously underwent tethered cord-filum resection, Chiari decompression and OC fusion to C3 – and she woke up with 100% recovery from all the symptoms she had suffered from for more than seven years. No more pain, no more trouble walking, no more dizziness, nausea or nystagmus, no more left-sided weakness, and even her chronic fatigue has completely disappeared.
She had hEDS, CCI, complex Chiari, TCS, MCAS, POTS and severe dysautonomia, but all those conditions completely disappeared.
She is now four months post-surgery!
Her story can be followed on Instagram and TikTok: @Stripes_of_Courage.

I have CCI, AAI, EDS and dysautonomia. My fusion surgery was successful and helped me tremendously. I am now much better able to function normally.