I was wondering, if you had decompression surgery and got relief from it, and then symptoms started to return or new ones developed, how soon after surgery did it start?
I'm 10 weeks post op yesterday. Headaches are pretty much gone (except yesterday and today, but not severe) and dizziness is like 98% improved.
However, pain and coldness in hands is severe and worse..though could be carpal tunnel? And also I have pain in my feet, burning in my mid upper back, some sharp pains here and there and just don't feel good in general.
I'm really hoping it's not Chiari symptoms.
When I saw my NS last week, I asked him what were the chances of complications from the surgery if I hadn't already had any, and he said none. I was past the window of chances of complications from the surgery.
I'm going to keep a list of symptoms, and I'm going for an OT eval monday. I'm wondering how long to give it before I call. I don't want to call until it's really intolerable. (I know enough to call for an emergency though)
Just from typing this post my fingers and hands are really suffering. :( Haven't been on the site much today as a result.
you are still a fresh post op.....my NS told me it would take a long time to see/feel good results and may even have feel some different sx's as my body adjusts to the new CSF flow...since it was not flowing right for so long......made sense to me and in the end he was right on.
Better to be safe than sorry maybe you should call your doc.
Does your NS have a PA???? I recommend to anyone having decompression to make good friends with the NS's PA!!! The PA in my case was unreal.....called right back...talked to me as an equal...cannot say enough about Mike the P.A.!!!!! Some surgeons don't use P.A's...just wondering if maybe yours had one, you could call.
It took me about four or five months before I woke up and felt like it was good to be alive.....You're not that far past your surgey. I've said it here before I know, but I couldn't really use the computer for several months after surgery because it would cause me to hurt in a lot of places. I still nine months later will get sore and stiff in my shoulders and neck if I stay on the computer too long. Even if you don't feel it, being on the computer does put stress on our bodies.
My limit for staying on the computer is not very long.
When I first woke up from the surgery nothing hurt - part of that was the fairy dust they had me on. When I went off the pain medication, I still for a couple of months didn't have too many problems. I will sometimes now get a little numbness in my hand, my hands will sometimes get cold too. I don't have any headaches. The numbness is usually when I wake up in the morning, so I may have just slept wrong - I don't know. I think it's always good to tell the doctor about the symptoms. I'm not sure what's normal after this surgery. It seems that different doctors have different opinions sometimes.
I am 3 years post op today!! I can't believe it has been that long. As you know, I am still having problems and I guess I need to accept that I always will. I do NOT regret my surgery by any means though. I know that what I am experiencing now would have been 10X worse if I had not had the decompression. I think symptoms starting returning within a week or so of my surgery. I was like Shirley, though, I did not experience that much pain in the hospital after surgery. I guess it was probably the meds that they had me on. They must have done a good job with the pain control. I did have pain of course for weeks after, but it was tolerable for me.
I had my decompression in May 2006, and by January everything was back and more. Recently I have been expericancing more pain and more syptoms. Every time I get an MRI they say well it looks fine. I hope that you start feeling better!
this jumped out to me, as i know i have to have the decompression due to the severity of my compression of fluid and i have a syrinx. at least that is how it wsa explained to me. also, have to have several disc fusions too. ive been putting back surgery off for about three years, maybe a bit longer, hard to remember.
i am concerned because ive been doing research about the chiari malformation and the syrinx. and it seems even the people who get relief, like julie and shirley at first feel better but then it always seems to come back. i cant seem to find anyone really except for a few people who have this surgery and then cna return to normal things without some symptoms and problems. alot even needmore suregery or have more symptoms. that is what bothers me so much. i guess if there were alot of people who had the surgery and just had a few symptoms that were tolerable it wouldnt botherme so much i guess but it seems that every story that i read people are always still suffering afterwards. i know i have to have the surgery to get rid of the syrinx and the compression but im scared that its going to be like a trigger andmake everything worse and have evenmore problems you know?
Jessica...I think the above book may be of real help to you, in my opinion.
Steph,I am sorry that you too are having Sx's again...do you think maybe a second opinion is in order ..just to see what another NS thinks about the most recent MRI's...Do you have the MRI CD's??? I just don't trust those written reports!!!
Yes, I agree with Lori. Both of those books are excellent and do help make things easier to understand. Jen and Jessica, I hope you both consider reading those books and let us know if we can help in any other way.
Jessica...I think the above book may be of real help to you, in my opinion.
Steph,I am sorry that you too are having Sx's again...do you think maybe a second opinion is in order ..just to see what another NS thinks about the most recent MRI's...Do you have the MRI CD's??? I just don't trust those written reports!!!
Jessica, I have met people who are years past their surgeries and their symptoms haven't returned or worsened. One of them named Brittany works for the Chiari Foundations and I also know others.. So, the symptoms don't always come back for everyone...... With the exception of two people who I met in another support group here locally that were done at Johns Hopkins Hospital, all those I know were done by the same surgeon - mine - He does surgeries for people all over the world and has a really good success rate. He uses a different procedure than some doctors - from what he explained to me it isn't as radical a surgery - With me, he took the bones apart and lifted my head higher to correct the basilar invagination I had; he didn't open the dura and he doesn't fuse down as far as some doctors do because, he said, it allows for more motion after surgery and he finds he gets as good a results. Brittany told me that she didn't have the cervical fusion; she had just the chiari surgery. There are success stories. I think we just don't read much on line about the patients with good results.
Hugs
Shirley
Jessica Danata said:
hi everyone,
this jumped out to me, as i know i have to have the decompression due to the severity of my compression of fluid and i have a syrinx. at least that is how it wsa explained to me. also, have to have several disc fusions too. ive been putting back surgery off for about three years, maybe a bit longer, hard to remember.
i am concerned because ive been doing research about the chiari malformation and the syrinx. and it seems even the people who get relief, like julie and shirley at first feel better but then it always seems to come back. i cant seem to find anyone really except for a few people who have this surgery and then cna return to normal things without some symptoms and problems. alot even needmore suregery or have more symptoms. that is what bothers me so much. i guess if there were alot of people who had the surgery and just had a few symptoms that were tolerable it wouldnt botherme so much i guess but it seems that every story that i read people are always still suffering afterwards. i know i have to have the surgery to get rid of the syrinx and the compression but im scared that its going to be like a trigger andmake everything worse and have evenmore problems you know?
Agree with Shirley..there are folks who have had great outcomes and never have another symptom...I think those folks just have moved on and aren't sharing their successes.
I am sounding like a broken record here....I my opinion "Contents Under Pressure" by Ray D'Alonzo is a great book from a patients stand point...He ran marathons a few years after his operation and back to work sooner than that!!
Julie, I still get really cold hands (and feet) too. Don't know why; but they keep my blood thin because of the aneurysm; so I've just kind of attributed it to that. Haven't heard any connection to the chiari; I'm going to try and remember to bring it up at the Chiari Foundation Meeting next time and see if anyone else has trouble with their hands and feet being cold. I have days when I don't feel quite right too. They don't come around too often, but every now and then. I probably have more trouble with being tired than anything else.