"Chiari Malformation Surgery"

About: Royal Hallamshire Hospital

8 Months Post Op - Diagnosed with Chairi Malformation 1 - Treatment Received - Cranium Decompression Surgery at Sheffield Hallam

Where to start...

Initial consultation: Generally I lead a very controlled organised life, my health deteriorated over 18month from fast pasted to nearly bed bound. I am a anxious person when not in control and early stages of consultation and diagnosis were a worry, I did initially think the consultant didn't understand my concerns as they didn't seem to look worried- I soon found out this wasn't ignorance just confidence which is key when choosing a NeuroSurgeon.

Deciding on Surgery: Although the consultant would of preferred to try alternative treatments they did agree to carry out surgery within a few months of seeing them.

(I just wanted to get my life back- my inpatients did impact on my decision) knowing now what surgery is like I understand why they wanted to try all alternatives before resorting to surgery.

Surgery: I was lucky to get a cancellation and took the (unlucky for some) Friday the 13th as my surgery date. The surgical team were amazing from arriving at the hospital. I have limited memory of anything after walking down to theatre to about 3/4 days post op, I take the limited memory as a plus point as the odd flash back reminds me of pain and sickness. My scar is approx 2-3 inches and soo neat I had around 8/10 staples and true to the consultant's word the team only shaved a tiny section of my hair :)

Aftercare; After surgery staff were amazing, every single person from surgeons to domestic helpers were kind friendly thoughtful and respectful. I remember being very sick and hating lights and noise the care team ensured I was in a private area and that the pain team visited to ensure pain was kept to a minimum. I was in hospital for around 2 weeks.

Ongoing care: 8 Months later.... Many of my symptoms has subsided and I took on the consultant's advice of keeping active and staying positive. I believe my amazing recovery is very much down to the consultant and team! They are unpowered with unbelievable skills and the whole experience has taught me to trust be patient and to take good care of my body.

I am now expecting a baby and couldn't be more happier in life, I may have the odd symptom and still have the odd bad day but I have faith that I'm over the worst and I am lucky enough to have the consultant and team local to me.

My top tips - Don't rely heavily on pain relief unless absolutely essential, keep as active as possible, drink lots of water, be patient and trust your consultant. (Obvs I'm no medical professional - always seek advice from professionals)

No words could describe how grateful I am for the treatment I have received. We are sooo lucky to have the NHS

Story from NHS Choices

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Responses

Response from Deborah Hopkinson, Patient Experience Co-ordinator, Sheffield Teaching Hospitals NHS Foundation Trust

Thank you for taking the time to tell your story which is so positive and I am sure will be helpful to readers. Your kind words will be passed on the the team responsible for your care. Staff are always pleased to hear such good feedback and how their care has provided such a good outcome.

Best wishes and congratulations on your pregnancy.


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