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Avatar universal

Looking for hope

I am interested to learn how long it has taken all of you to see improvement in your worst symptoms or symptoms you have had for a long time before decompression surgery?  I am starting to feel like things will never get better but know people have said it can take years....is the long term improvement minor or can it actually improve dramatically over time?
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Avatar universal
I am so sorry to hear about the struggles your daughter is having.  It hope that the NS was able to give you good answers and that she is doing better.  It is hard to be patient sometimes.  I will be praying for your daughter.
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1663373 tn?1333635989
I am 1 1/2 years post op and compared to before doing great! my main struggle is dealing with occipital neuralgia, neuropathy and low energy but besides those I am very happy with where I am. I think the biggest thing is realizing all of our journeys are different and to celebrate your individual milestones! Hang in there!
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Avatar universal
My daughter 11 yrs old is 7 Weeks post op from posterior fossa decompression and dura removal with patch and c1 partial removal. She has severe breathing issues pre and post op with no improvement. Headaches, balance and choking all got better fairly quuckly. Now abt a week ago new symptoms like blurred  vision, cognitive deficits, increased sensitivity to heat and cold, and worse balance issues have started. MRI still showed severe conpression and kinking of CMJ. She also has retroflexed odontoid process. We have a great NS we see him tues. But just with him looking at scans he said b/c she had been compressed so long it would take longer for brain to reposition, but he may still do transoral surgery decompression after he evaluates her tues. Good luck to u!! We are very nervous abt our daughter as she is getting worse daily.
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Avatar universal
I am 10 weeks post op and was hoping to hear what kind of symptoms linger the longest and if they do ease up gradually or if it is more of a sudden departure if they do improve...
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620923 tn?1452915648
COMMUNITY LEADER

  Hi...many feel great just post op but as time goes that can have some symptoms resurface as they heal, and that is normal....

The nerves can take up to 2 yrs to heal completely, but we r all diff so some of us heal slower then others....and some of us have other related issues that may add to how we feel....so u have to look at the whole picture to be able to even give a guess.

Have u had surgery?...If not, make sure u r tested for all related issues b4, as that is what can affect how u feel and heal post op.
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Avatar universal
I'm 9 wk post op today.  I feel fine; it's nothing short of a miracle!  
Working backwards, I still have some occasional numbness, especially depending on head position.  the last symptom to leave was lack of appetite & slow digestion (very recently), then nausea.  I very rarely have tinnitus or pounding in my ears.  No whooshing in my ears, no choking sensation, no sore throat, no dizziness at all.  The visual disturbances were gone within a few days of surgery.  Immediately after surgery, I felt more cognitively aware & better balanced physically, even dopey on morphine.

I still don't quite trust the improvement, having read about "the 3 mo. setback", and how symptoms can return or how you can develop new ones.  I think that I've been fortunate because, even though I've been disabled for a long time, the cervical compression was much worse.  I was decompressed for that in 2000; i think that recovery took at least a couple years.  
I was limping along ever since, then had a big crash last fall.  Not only was the time relatively short for ~20 symptoms to develop & be corrected, I had Chiari 0, which arguably may be a less severe case.  I also had a very skilled surgeon; he told me to allow 1-2 yr to see improvement, but he was happily surprised to see so much improvement after 6 wk.  
I have no other health problems & I'm 61.  I'm no Pollyanna, am very impatient, a perfectionist, but I really tried *very* hard  to control my mind--no news, no worrying, no self-critical thoughts, & forgiveness (even though some hurtful events occurred).

The best of luck to you.  Try to find some happiness & gratitude every day.
Vivian
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