Guest guest Posted June 2, 2011 Report Share Posted June 2, 2011 Hi Everyone, Prof. Marcus Stoodley from Australia has kindly answered our questions. Here is a link: http://tiny.cc/3dhnl 1. Is flying in pressurized or non pressurized planes safe before or after surgery. Before is OK. After is OK too, so long as there is no air still at the site of surgery. 2. How does CM impact short term memory? There should not be any direct effect. However, pain and other symptoms often interfere with a person's ability to concentrate and remember new information 3. A member has had a decompression then detethered two years later. 1 1/2 years she developed peripheral neuropathy in both feet, could this be caused from the surgeries? This is unlikely. 4. Does Chiari cause degenerative disc disease, especially in the cervical area? Not directly. Degenerative disc disease is very common. 5. Over the past year we have heard from several members that have seen surgeons, even some of the expert surgeons that have told them that small syrinxes can not cause symptoms, even pain. Has there been any recent research on this subject. What is your opinion? Even small syrinxes can definitely cause symptoms, especially if they have breached the ependymal lining. This can often be seen on MRIs. I agree that small syrinxes without ependymal breach are unlikely to cause symptoms. Also, in many cases it is very difficult to treat small syrinxes so even if they are symptomatic it is often best to leave them alone. 6. Likely due to the limited amount of Chiari research, it often seems that Chiarians are facing the same challenges today as they did 10 years ago. Too often we hear a doctor say " You have CM, but that's not causing your headaches. You have migraines " You're just depressed:. " Chiari doesn't cause symptoms " . " It's not Chiari if the herniation isn't at least x (insert almost any number here) mm " , etc. Where do you see us 10 years from now, in terms of physicians' understand of Chiari? These things change slowly unfortunately! Hopefully at least there will be improved understanding of the imaging diagnosis beyond a simple measurement of cerebellar descent. 7. What symptoms would be present if a muscle dura patch were to become dislodged or leak? It would only cause symptoms if there was CSF leak through the skin or if the CSF forms a large collection outside the dura. 8. Could a person be experiencing new burning and shooting pain in their arm and shoulder if their syrinx has not changed in size Will this new pain ever go away? Yes. If the syrinx breaches the ependymal lining it can cause cord damage (and pain) even without a measurable increase in size. Whether the pain will go away is very unpredictable - if the cord damage is permanent it may not. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 2, 2011 Report Share Posted June 2, 2011 I just remembered something about the flying issue: it's only an issue for those with a VP shunt! I can not go above 10,000ft (yes, this mean I can't go to the top of some mont. in Hawaii or a non- pressurized helicopter!) I hope, that helps the thought process! Bea Sent from my Verizon Wireless BlackBerry Prof. Stoodley's answers Hi Everyone, Prof. Marcus Stoodley from Australia has kindly answered our questions. Here is a link: http://tiny.cc/3dhnl 1. Is flying in pressurized or non pressurized planes safe before or after surgery. Before is OK. After is OK too, so long as there is no air still at the site of surgery. 2. How does CM impact short term memory? There should not be any direct effect. However, pain and other symptoms often interfere with a person's ability to concentrate and remember new information 3. A member has had a decompression then detethered two years later. 1 1/2 years she developed peripheral neuropathy in both feet, could this be caused from the surgeries? This is unlikely. 4. Does Chiari cause degenerative disc disease, especially in the cervical area? Not directly. Degenerative disc disease is very common. 5. Over the past year we have heard from several members that have seen surgeons, even some of the expert surgeons that have told them that small syrinxes can not cause symptoms, even pain. Has there been any recent research on this subject. What is your opinion? Even small syrinxes can definitely cause symptoms, especially if they have breached the ependymal lining. This can often be seen on MRIs. I agree that small syrinxes without ependymal breach are unlikely to cause symptoms. Also, in many cases it is very difficult to treat small syrinxes so even if they are symptomatic it is often best to leave them alone. 6. Likely due to the limited amount of Chiari research, it often seems that Chiarians are facing the same challenges today as they did 10 years ago. Too often we hear a doctor say " You have CM, but that's not causing your headaches. You have migraines " You're just depressed:. " Chiari doesn't cause symptoms " . " It's not Chiari if the herniation isn't at least x (insert almost any number here) mm " , etc. Where do you see us 10 years from now, in terms of physicians' understand of Chiari? These things change slowly unfortunately! Hopefully at least there will be improved understanding of the imaging diagnosis beyond a simple measurement of cerebellar descent. 7. What symptoms would be present if a muscle dura patch were to become dislodged or leak? It would only cause symptoms if there was CSF leak through the skin or if the CSF forms a large collection outside the dura. 8. Could a person be experiencing new burning and shooting pain in their arm and shoulder if their syrinx has not changed in size Will this new pain ever go away? Yes. If the syrinx breaches the ependymal lining it can cause cord damage (and pain) even without a measurable increase in size. Whether the pain will go away is very unpredictable - if the cord damage is permanent it may not. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 2, 2011 Report Share Posted June 2, 2011 Hi guys.. Just wanted to clarify this a bit.... I,too, have a VP shunt and have had one for 20 years. I have flown often with no problems.... I am assuming that Bea meant she couldn't go above 10,000 feet in an NON-pressurized plane. Sally R... Decompression '91, Hydro, VP shunt, 2 shunt revisions, Feeling pretty good on NO meds in Bethlehem,Pa Re: Prof. Stoodley's answers >I just remembered something about the flying issue: it's only an issue for >those with a VP shunt! I can not go above 10,000ft (yes, this mean I can't >go to the top of some mont. in Hawaii or a non- pressurized helicopter!) > I hope, that helps the thought process! > Bea > Sent from my Verizon Wireless BlackBerry > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 2, 2011 Report Share Posted June 2, 2011 Yes Sally! OMG my brain thought that was understood! So Sorry! Yes, if you are in a pressurize plane or helo! Everything is great and I can look like a normal person for a moment. But I did go sight seeing in Mountains higher than 10,000ft and boy did I feel it! Not fun! Sorry, I never intent to miss word or confuse anyone! Thank you again Sally! Bea Sent from my Verizon Wireless BlackBerry Re: Prof. Stoodley's answers Hi guys.. Just wanted to clarify this a bit.... I,too, have a VP shunt and have had one for 20 years. I have flown often with no problems.... I am assuming that Bea meant she couldn't go above 10,000 feet in an NON-pressurized plane. Sally R... Decompression '91, Hydro, VP shunt, 2 shunt revisions, Feeling pretty good on NO meds in Bethlehem,Pa Re: Prof. Stoodley's answers >I just remembered something about the flying issue: it's only an issue for >those with a VP shunt! I can not go above 10,000ft (yes, this mean I can't >go to the top of some mont. in Hawaii or a non- pressurized helicopter!) > I hope, that helps the thought process! > Bea > Sent from my Verizon Wireless BlackBerry > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 3, 2011 Report Share Posted June 3, 2011 I know some people with Chiari without shunts who get terrible headaches when flying, and many others who do not. Barbara In a message dated 6/1/2011 10:40:21 P.M. Eastern Daylight Time, mrsbrendayung@... writes: I just remembered something about the flying issue: it's only an issue for those with a VP shunt! I can not go above 10,000ft (yes, this mean I can't go to the top of some mont. in Hawaii or a non- pressurized helicopter!) I hope, that helps the thought process! Bea Sent from my Verizon Wireless BlackBerry Prof. Stoodley's answers Hi Everyone, Prof. Marcus Stoodley from Australia has kindly answered our questions. Here is a link: _http://tiny.cc/3dhnl_ (http://tiny.cc/3dhnl) 1. Is flying in pressurized or non pressurized planes safe before or after surgery. Before is OK. After is OK too, so long as there is no air still at the site of surgery. 2. How does CM impact short term memory? There should not be any direct effect. However, pain and other symptoms often interfere with a person's ability to concentrate and remember new information 3. A member has had a decompression then detethered two years later. 1 1/2 years she developed peripheral neuropathy in both feet, could this be caused from the surgeries? This is unlikely. 4. Does Chiari cause degenerative disc disease, especially in the cervical area? Not directly. Degenerative disc disease is very common. 5. Over the past year we have heard from several members that have seen surgeons, even some of the expert surgeons that have told them that small syrinxes can not cause symptoms, even pain. Has there been any recent research on this subject. What is your opinion? Even small syrinxes can definitely cause symptoms, especially if they have breached the ependymal lining. This can often be seen on MRIs. I agree that small syrinxes without ependymal breach are unlikely to cause symptoms. Also, in many cases it is very difficult to treat small syrinxes so even if they are symptomatic it is often best to leave them alone. 6. Likely due to the limited amount of Chiari research, it often seems that Chiarians are facing the same challenges today as they did 10 years ago. Too often we hear a doctor say " You have CM, but that's not causing your headaches. You have migraines " You're just depressed:. " Chiari doesn't cause symptoms " . " It's not Chiari if the herniation isn't at least x (insert almost any number here) mm " , etc. Where do you see us 10 years from now, in terms of physicians' understand of Chiari? These things change slowly unfortunately! Hopefully at least there will be improved understanding of the imaging diagnosis beyond a simple measurement of cerebellar descent. 7. What symptoms would be present if a muscle dura patch were to become dislodged or leak? It would only cause symptoms if there was CSF leak through the skin or if the CSF forms a large collection outside the dura. 8. Could a person be experiencing new burning and shooting pain in their arm and shoulder if their syrinx has not changed in size Will this new pain ever go away? Yes. If the syrinx breaches the ependymal lining it can cause cord damage (and pain) even without a measurable increase in size. Whether the pain will go away is very unpredictable - if the cord damage is permanent it may not. [Non-text portions of this message have been removed] [Non-text portions of this message have been removed] Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 3, 2011 Report Share Posted June 3, 2011 Actually flying shouldn't be a problem for anyone with shunts. The cabins are pressurized to keep it at what it is on the ground. You might get a headache in a plane but it isn't because of the shunt. I have had a shunt my entire life and have always been fine on planes. *Summer* Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 3, 2011 Report Share Posted June 3, 2011 My point was pressurized verses non-pressurized. Yes a commercial airline that has pressurized cabins work great! It's the non-pressurizes planes and high altitude hiking that can reek havoc. I apologize if I might have cause any confusion! Bea Sent from my Verizon Wireless BlackBerry Re: Prof. Stoodley's answers Actually flying shouldn't be a problem for anyone with shunts. The cabins are pressurized to keep it at what it is on the ground. You might get a headache in a plane but it isn't because of the shunt. I have had a shunt my entire life and have always been fine on planes. *Summer* Quote Link to comment Share on other sites More sharing options...
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