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SURGEON SAID I'M CURED!
I had Decompression on Oct 24th 2011, I have been very happy with my surgeon for the most part. I have had a few "doubts" though: he said I would be back to work in 4 weeks and it took 14 weeks I think and then it was very "light duty" and took 2 months to get to a full work day and Im still not able to do what I was able to do a year ago.
I met with my surgeon about 3 weeks ago for what I presumed was my final post-op appt. When I asked why I had more SX's no than before surgery (my headaches are less intense though thankfully!) he ordered an MRI. It took a while for me to get the MRI with some scheduling issues and then he was out of the office last week.
My surgeon called me this afternoon and said MRI looked great and that there is "No Anatomical Reason" for my symptoms and that they should be treated from a "Headache Syndrome" standpoint. I already see a Pain Mgmt Doc who is a neurologist that has been working with me since Februaury to help get my headaches and other SX's under control.
We know of a nurse that works with another nuero-doc that treats Chiari Patients, We are going to see about getting an appt with him.
I met with my surgeon about 3 weeks ago for what I presumed was my final post-op appt. When I asked why I had more SX's no than before surgery (my headaches are less intense though thankfully!) he ordered an MRI. It took a while for me to get the MRI with some scheduling issues and then he was out of the office last week.
My surgeon called me this afternoon and said MRI looked great and that there is "No Anatomical Reason" for my symptoms and that they should be treated from a "Headache Syndrome" standpoint. I already see a Pain Mgmt Doc who is a neurologist that has been working with me since Februaury to help get my headaches and other SX's under control.
We know of a nurse that works with another nuero-doc that treats Chiari Patients, We are going to see about getting an appt with him.
My son's headaches and other symptoms were all put down to being a migraine - NS said it was fixed after surgery and that was it. He is finally going to another doctor who said it was essentially a "failed" surgery, because he did have a period of improvement. My son is now 18, had this surgery two years ago.
He told them repeatedly that this was pressure, NOT a migraine, he has those and knows the difference between the two. So, we are seeing new doctor, the first was also a specialist by the way. The second however is much more willing to try and determine what is going on. MRI this Thursday followed by appt with NS for results - hopefully we will have some answers.
Don't give up - it is so hard to keep going when you are told it is NOT chiari related, they can't find anything, etc.....But do try another specialist if you are able to, hopefully you can get some answers.
He told them repeatedly that this was pressure, NOT a migraine, he has those and knows the difference between the two. So, we are seeing new doctor, the first was also a specialist by the way. The second however is much more willing to try and determine what is going on. MRI this Thursday followed by appt with NS for results - hopefully we will have some answers.
Don't give up - it is so hard to keep going when you are told it is NOT chiari related, they can't find anything, etc.....But do try another specialist if you are able to, hopefully you can get some answers.
Hi.i had my decompression 5days early than u.i am more or less at the same stage of healing.my mri looks great toi,but none of my issues really improved.as selma said it can be related issues causing ur problems or some kind of inflamed nerves or nerve damage.i am now waiting for an appointment with a specialist.my nl told me that a non specialist will not be able to help me anymore.
COMMUNITY LEADER
So what he is saying is he restored ur CSF flow, that does not mean u do not have another issue going on...NS's do not dx, so if u do not have the dx for a related issue, he is done...u will have to get dx'd.
Well PK- u can have a syrinx in the thoracic or lumbar spine too, so if u did not have a MRI of ur complete spine, u could still have a syrinx.
ICP intercranial hypertension...excess CSF fluid...this can develop post op...some times as a result to the patch material used to cover the dura....sometimes for no reason at all....
If u have EDS, u could also have cerviocranial instability which can cause symptoms as well and similar to what u had with chiari.....
A NL should be able to test u, but if u do have it a Rheumatoid Dr is who u would see....
My Pain Mgt Doc had me do a sleep study and I have apnea and now use a CPAP machine.
I Assume that since I had a MRI of my head/neck that there is no syrinx as far as tethered cord, ehlers-danlos, ICP I don't know enough about them to give you any answers.
I Assume that since I had a MRI of my head/neck that there is no syrinx as far as tethered cord, ehlers-danlos, ICP I don't know enough about them to give you any answers.
COMMUNITY LEADER
Hi....IMHO we can not be cured, only treated successfully or unsuccessfully...
Most NS's see u at 1 yr post op to review...and if u have other issues it could be u have something in addition or related to chiari affecting u....
And u may be doing too much too soon for u...I also do not feel they can give a time line of when we can go back to work or do this or that, we r all different and must listen to our bodies to see what works or doesn't for us....
Was a syrinx, and tethered cord, ehlers-danlos, ICP...sleep apnea, all those ruled out?
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