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Hi there I has decompression surgery 12 weeks ago. I was doing really well ns was happy with my progress. At that point 9 weeks post of he confirmed I had low pressure headaches and advice was given he booked in for my 2 month follow up mri.
Post surgery I had numb hands numbNess in my back my eyes were not responding to light and dark. I suffered horrific pain and presser at the back of my head I had also started hi a lot of pain from lay to sit sit to stand. After surgery all these symptoms went till about 2 weeks ago alk the obvove came back plus new symptoms a tremmer blurred vision. My gp to one at me and said I have the symptoms that I have either are hydrocephalus or cerabel tonsil drop. My gp has requested an urgent referral my NS and to bring my mri forward. I'm so confused at the moment and don't know what to think. My gp said if he wasn't aware that I had had decompression surgery he would diagnostic me with chiari malformation! I'm intrested to know if anybody has had this experience and was it discovered that further surgery was needed. Many thanks Jaquie
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Apple62 jaquie197513
Posted
Hi jaquie,
I can't address after surgery very well. I went to the ER as I was symptomatic. This was a very prominent hospital in GA. A team of neurologists were sent to assess me. Their response to me was physical therapy and psychiatric help. What followed was about 25-35 trips to the ER. Over and over they would do CT or MRI or
give me a shot of Ativan say nothing was wrong and send me home.
Unfortunately, the shrink thought I had mental problem (nobody could have that many problems) so now I'm crazy 😜. Lets put her on meds. Bottom line they don't have a clue. I have a wonderful life, husband and family.
Did anything get accomplished? Yes the csf flow was corrected. Chiari is progressive and I wish doctors could be honest with their patients. Here is a list of Chiari symptoms.
Subject: Chiari Brain malformation
Below are some of the many
symptoms suffered by people with Chiari. Keep in mind that every patient is different and these symptoms are not listed in order of frequency or severity:
1. Headaches (made worse by coughing, sneezing or straining)
2. Neck Pain
3. Difficulty Sleeping
4. Muscle Weakness
5. Numbness
6. Unsteady walking
7. Poor hand coordination
8. Slurred speech
9. Blurred vision
10. Dizziness
11. Fatigue
12. Sleep Apnea
13. Difficulty thinking and concentrating
14. Shoulder pain
15. Weakness in hands
16. Nausea
17. Shortness of breath
18. Difficulty Swallowing
19. Leg weakness
20. Tinnitus (ringing in the ears)
21. Memory problems
22. Abdominal pain
23. Chest pain
24. Depression
25. Anxiety
26. Arm pain
27. Hoarse voice
28. Sensitivity to light
29. Poor or loss of hearing
30. Episodes of rapid heart rate
31. Black out spells
32. Double vision
33. Frequent urination
34. Abnormal gag reflex
35. Hypertension
36. Hypotension
37. Nystagmus (fast, uncontrollable movements of the eyes)
38. Palpitations (abnormal heart beats)
39. Vomiting
40. Visual loss
41. Earaches
42. Nosebleeds
43. Snoring
44. Thoracic pain
45. Wake up choking
46. Curvature of the spine
47. Abnormal breathing
I'm only one person. I can say it took me about six years 5 PCP 3 Neurologist 3 gynecologist 1 cardiologist and 3 optomologists 4 gastrointestinal 1optometrist to determine I had Chiari. I thinks that shows there's not a lot of training Chiari. I wish you the best on your journey.
We have to help each other if it's only by by telling our stories. May God Bless🙏
jaquie197513 Apple62
Posted
Hi Apple62 come and Jpin chiari support uk this site is great it's full of lovely supportive people who have and haven't had surgery. We are there to support each other and help ppl get through the process of surgery but also to support in times of need
Linleel jaquie197513
Posted
Sounds like there may be some slippage. That would be where despite the surgery opening up space, the tonsils go back down through the foramen magnum. My surgeon cauterized my tonsils so the went back up into my skull. They other things could be scar tissue or some kind of leak. Definitely need to get another MRI and see what's going on. Good luck!!
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