Aa
Is it a stent or could it be a shunt?
I don't get it,..my mother said that when I had my surgery that the doctor should have put a stent in???I was like, "huh"..only because I have never heard of that. I think the people who told her that were talking about a shunt. I have never heard of a stent...that is correct right? I am still going around this crazy thing of chiari and hoping for a second surgery because I am sick of feeling this way and I know what the results said this last time - it is bad again - crowded, low lying and stuff. Of course the pain doctor recommended I see about surgery but the surgeon (neuro) there wouldn't do it. However, the neuro here said it looked fine - whatever! I know what they told me. I think he doesn't want to admit it came back,
COMMUNITY LEADER
Having to empty ur bladder a lot is considered having a bladder issue.....
Deff take that form with u...ask if u should be seen by a urologist to do some testing ....this is one way to know if u have TC.
Bladder issues that go unaddressed can lead into more serious issues like infections ect....
U will also want ur PCP to have a copy of this as well, in case ur NS does not see the relevance.
Good Luck
"selma"
Deff take that form with u...ask if u should be seen by a urologist to do some testing ....this is one way to know if u have TC.
Bladder issues that go unaddressed can lead into more serious issues like infections ect....
U will also want ur PCP to have a copy of this as well, in case ur NS does not see the relevance.
Good Luck
"selma"
I just looked at the questionaire and I am amazed that I can answer yes to everything ! So what should I do with the form? Should I print and take to my next neuro appointment? What should I say? I need him to listen to me and I am scared to speak up I guess. I don't want him to drop me. I want him to be honest with me.
Actually I do have bowel issues (no bladder - I pee a lot, lol). I am always constipated and have been for a long time and before medications so I know it is not the meds...:) I can't tell if I have a dimple or not. :( I will look for the questionaire. Thank you for the input. :)
COMMUNITY LEADER
May I ask do u have bowel and bladder issues?..one test ur PCP can order is a urodynamics test....and ur sister is right, not all TC's will show on a MRI and is y they can be called occulta tethered cord...occulta means hidden.
TCI has a questionnaire which u should print out and see how many of those symptoms u have.....Also do u have a dimple on ur lower back?
There r many drs that will not touch a back/spine if it is not a virgin...(one without surgery) and then there r those that will help u....most true chiari specialists will .
No worries, vent all u need to that is y we r here : )
I hope I was able to help
"selma"
TCI has a questionnaire which u should print out and see how many of those symptoms u have.....Also do u have a dimple on ur lower back?
There r many drs that will not touch a back/spine if it is not a virgin...(one without surgery) and then there r those that will help u....most true chiari specialists will .
No worries, vent all u need to that is y we r here : )
I hope I was able to help
"selma"
The pain doctor at Cleveland clinic read my results to me and told me at the time what they meant and said I should see a surgeon about getting surgery again - that is what he recommended. He thought between that and my symptoms it would be a good idea. He really knew what he was talking about too when he talked about the chiari. I was surprised.
My surgery was 2 years ago in November of 2007. My symptoms started to reappear 6 months after the surgery. My recovery seemed to be long and went back into feeling the same. The first MRI showed (right after the 6 months that it was back) and then again a year ago even more so. I have not been checked for tethered cord for a long time. When I was checked before a radiologist did say that there was evidence of a possible syrnix that I should be evaluated for it. They did an MRI to see if I had tethered cord - I guess - I mean they didn't do it specific - just did a whole spinal MRI, lumbar and cervical. They are not trained here I guess to check for one. My sister said that it doesn't always show up on an MRI (she and her friends did research before I had my surgery, she works as a nurse, lol). She thought I had it and she said I had all the signs of it but to find a doctor willing to look is another story.
I can't afford to go to the Chiari Institute. I did get a second opinion at the cleveland clinic which lead me to the other issues I am facing (my heart for one). Then in turn I had to go back to my original surgeon. The one at the clinic did not want to touch me. In fact he said a second surgery would be very dangerous. (made is sound as if it would be more dangerous than the first). I am guessing they don't want to touch another surgeons work. I need to just break down this time and ask my surgeon to check me for tethered cord. I don't know if this has anything to do with anything but for a very long time I have had this pressure - this IRRITATING pressure in my lower back in one spot along my spine. I asked the radiologist who did my spinal tap not long ago if it could be from a previous tap I had done many many years ago. He said no bec of where it was. He thought I should have it checked out - well you know my doctors ignore it just like the horrible painful spot on my upper back that radiates in my arm eeeekkk! Sorry about the long story. :(
I can't afford to go to the Chiari Institute. I did get a second opinion at the cleveland clinic which lead me to the other issues I am facing (my heart for one). Then in turn I had to go back to my original surgeon. The one at the clinic did not want to touch me. In fact he said a second surgery would be very dangerous. (made is sound as if it would be more dangerous than the first). I am guessing they don't want to touch another surgeons work. I need to just break down this time and ask my surgeon to check me for tethered cord. I don't know if this has anything to do with anything but for a very long time I have had this pressure - this IRRITATING pressure in my lower back in one spot along my spine. I asked the radiologist who did my spinal tap not long ago if it could be from a previous tap I had done many many years ago. He said no bec of where it was. He thought I should have it checked out - well you know my doctors ignore it just like the horrible painful spot on my upper back that radiates in my arm eeeekkk! Sorry about the long story. :(
COMMUNITY LEADER
Found this on the web......
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Treatment
There are many different opinions as to how best treat a syrinx, including, in the broadest sense:
If there is an obvious cause (such as hydrocephalus or Chiari Malformation) treat the cause with the expectation that the syrinx will then resolve on its own.
Treat the syrinx as the initial problem with some form of drain (see below).
Combine both of these options and treat both the cause and the syrinx at the same operation.
The drains used to treat syrinxes are quite variable. Some surgeons prefer to place a small tube or "stent" in the syrinx. This is a rather short length of hollow tubing that extends from inside the spinal cord collection to just outside the spinal cord where the spinal fluid space is. Others prefer to use a shunt-type system, similar to that used in hydrocephalus to divert the fluid to other body cavities such as the chest or abdomen.
The fact that there are so many options tells us that no one is superior to all the others. It is important to discuss these issues with your neurosurgeon. Whatever method is chosen, it is likely that a follow-up MRI will be performed at some point after surgery to show adequate drainage of the collection. As with any of the processes that effect the nervous system, careful follow-up is essential. Most children should show some if not total improvement of their symptoms.
***********************************************************************************************
Treatment
There are many different opinions as to how best treat a syrinx, including, in the broadest sense:
If there is an obvious cause (such as hydrocephalus or Chiari Malformation) treat the cause with the expectation that the syrinx will then resolve on its own.
Treat the syrinx as the initial problem with some form of drain (see below).
Combine both of these options and treat both the cause and the syrinx at the same operation.
The drains used to treat syrinxes are quite variable. Some surgeons prefer to place a small tube or "stent" in the syrinx. This is a rather short length of hollow tubing that extends from inside the spinal cord collection to just outside the spinal cord where the spinal fluid space is. Others prefer to use a shunt-type system, similar to that used in hydrocephalus to divert the fluid to other body cavities such as the chest or abdomen.
The fact that there are so many options tells us that no one is superior to all the others. It is important to discuss these issues with your neurosurgeon. Whatever method is chosen, it is likely that a follow-up MRI will be performed at some point after surgery to show adequate drainage of the collection. As with any of the processes that effect the nervous system, careful follow-up is essential. Most children should show some if not total improvement of their symptoms.
Hi...the only time I have heard of a stent being used is to to keep a blocked artery open...they clear out the blockage and put a stent in to keep it open. I'm not sure if they would use that for the brain as it is awfully small??? Probably your mom meant to say shunt...but I'm no expert!
Frustrating that you are still experiencing so much trouble after your surgery...if it is crowded and low lying...why aren't they doing anything about it? I can imagine that he may not want to admit it...but really whether it does or not is usually out of their control so they should get past that and get to helping you!! Maybe time to get a 2nd opinion?
Take care
Carolyn
Frustrating that you are still experiencing so much trouble after your surgery...if it is crowded and low lying...why aren't they doing anything about it? I can imagine that he may not want to admit it...but really whether it does or not is usually out of their control so they should get past that and get to helping you!! Maybe time to get a 2nd opinion?
Take care
Carolyn
COMMUNITY LEADER
Hi.... I believe a stent is smaller in circumference than a shunt..either can be used and it depends on the size of the syrinx.But ur mom may be right a stent may have been used!
Where u checked for TC?.....that can be a reason for a herniation to reappear.......
I am so sorry u r having all the same issues as b4......I am sorry, but I do not remember when ur surgery was...can u give us some of the details and when ur symptoms reappeared?
"selma"
Where u checked for TC?.....that can be a reason for a herniation to reappear.......
I am so sorry u r having all the same issues as b4......I am sorry, but I do not remember when ur surgery was...can u give us some of the details and when ur symptoms reappeared?
"selma"
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