So how is it possible that after 2 years my syrinx caused by Chairi type 2 has just disappeared??
My symptoms have drastically worsened on the last 6 months, especially pain in neck, back and arms/legs. Also now developed chronic fatigue and dizziness and stiffness all over my body and terrible pain in my fingers.
I went for my check up with consultant and my first MRI since 2010 and apparently my herniation is stable and my syrinx has disappeared??
Why then are my symptoms worsening? The consultant did not know.....He did however say that any damage caused by it is permanent and even if I have the decompression, the pain in my extremities would most probably not disappear.
Is it possible that the syrinx has moved and we just can't see it on the scan? ( I was only scanned from to just below my jaw)
Anyone have any experience of this? SO CONFUSED....
I am not an expert on syrinx's, but I have read where the body can absorb them. Is your NS recommending surgery as a treatment for the CM? I am sorry I can't help you anymore about syrinx's, but please know I am here for you to talk to if you need anything,
I have also heard that the body can absorb the fluid that formed the syrinx. I have friends that have had them disappear but it was after decompression surgery. Your symptoms may be getting worse just from the chiari. This is a progressive disorder and can continue to get worse as time goes on. Waht are they recommending for the next step in your treatment?
My NS is always vague in his answers to my questions which is very irritating . He has said that I would be a good candidate for surgery but it is up to me to weigh up the pros and cons. At the moment surgery Oscar not an option as I could not take the time off work and my partner could not afford time off should I need extra care.
I also asked the NS about fatigue as I have been extremely tired on the last few months even after a nights sleep. He suggested I have a blood count test to see if I’m anemic. Jesus did not consider that it may be chiairi related.
I am sure he is good at his job I just sometimes feel like he’s in a rush to get me out of the appointment room and the only reason he wants to see me again is for his own curiosity…
Anyway, as for the syrinx I guess if my body has absorbed it that is good news
My NL is very vague. It is so frustrating when they are thinking something, but do not tell you what that is. I became very fatigued with the onset and progression of the Chiari. That was and still is one of my biggest complaints.
I read your comment about "he wants to see me again for his own curiosity." I found that amusing because when I went to the ER last week, I had a similar experience. I was miserable and in a lot of pain. I have only been to the ER once im my adult life and that was with the onset of Trigeminal Neuralgia. I had been at work on a 3rd shift in the ICU. I thought I had strep because my throat hurt and my son had had it. It turned out that is was TN. Anyway, this last time...I had spoke with the triage nurse and then an ER doc. About 10 minutes later an older doctor came in and was asking me questions, felt the back of my head, looked at my scar and then just stood there looking at me. It was strange. He then left the room and I thought he was going to do something...And here he wasn't even an ER doc, just a doc that was down visting in the ER and came to look at the circus freak. Lol. I felt like an freak of nature or something. Anyway....I consider myself special :)
Cloe said:
Thank you all for the replies.
My NS is always vague in his answers to my questions which is very irritating . He has said that I would be a good candidate for surgery but it is up to me to weigh up the pros and cons. At the moment surgery Oscar not an option as I could not take the time off work and my partner could not afford time off should I need extra care. I also asked the NS about fatigue as I have been extremely tired on the last few months even after a nights sleep. He suggested I have a blood count test to see if I'm anemic. Jesus did not consider that it may be chiairi related. I am sure he is good at his job I just sometimes feel like he's in a rush to get me out of the appointment room and the only reason he wants to see me again is for his own curiosity....
Anyway, as for the syrinx I guess if my body has absorbed it that is good news :-)
I hate when Dr's look at you like that. I also like this phrase from Dr's " I am very interested in your case, but can't help you. Please let me know how you are doing" That makes me want to scream.
nicole said:
My NL is very vague. It is so frustrating when they are thinking something, but do not tell you what that is. I became very fatigued with the onset and progression of the Chiari. That was and still is one of my biggest complaints.
I read your comment about "he wants to see me again for his own curiosity." I found that amusing because when I went to the ER last week, I had a similar experience. I was miserable and in a lot of pain. I have only been to the ER once im my adult life and that was with the onset of Trigeminal Neuralgia. I had been at work on a 3rd shift in the ICU. I thought I had strep because my throat hurt and my son had had it. It turned out that is was TN. Anyway, this last time...I had spoke with the triage nurse and then an ER doc. About 10 minutes later an older doctor came in and was asking me questions, felt the back of my head, looked at my scar and then just stood there looking at me. It was strange. He then left the room and I thought he was going to do something...And here he wasn't even an ER doc, just a doc that was down visting in the ER and came to look at the circus freak. Lol. I felt like an freak of nature or something. Anyway....I consider myself special :)
Cloe said:
Thank you all for the replies.
My NS is always vague in his answers to my questions which is very irritating . He has said that I would be a good candidate for surgery but it is up to me to weigh up the pros and cons. At the moment surgery Oscar not an option as I could not take the time off work and my partner could not afford time off should I need extra care. I also asked the NS about fatigue as I have been extremely tired on the last few months even after a nights sleep. He suggested I have a blood count test to see if I'm anemic. Jesus did not consider that it may be chiairi related. I am sure he is good at his job I just sometimes feel like he's in a rush to get me out of the appointment room and the only reason he wants to see me again is for his own curiosity....
Anyway, as for the syrinx I guess if my body has absorbed it that is good news :-)
Not to be off topic but I've gotten the "interesting case" comment too! It's kind of irritating: if it's so interesting, why aren't you researching it and helping me find a way to feel better? Argh.
