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Post by peace and love on Aug 11, 2014 1:27:02 GMT -6
Thank you for reply... If the advil help for reducing pain than this pain isn't from tumor I believe, I could be wrong, don't rely on what I say. Why I say so since I try different medication for 6 month and make physiotherapy with no changes at all. maybe since my tumor is very big.
Good day
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Post by Ed on Sept 6, 2014 12:11:55 GMT -6
Hi all,
I would like to thank everyone for advising me in preparing the questions to ask the NS.
I have visited Dr. Kothbauer in Switzerland in July and this is my recollection of the consultation. He is very friendly, experienced and confident doctor; he took his time to explain the risks and benefits of the surgery, and he answered all questions thoroughly. He has advised me to wait and watch, as my tumor is small and he would have to go through a lot of tissue to get to the tumor. At this time, the risks of neurological disfunctions would be great if I do the surgery. This is similar to what Dr. Jallo states in one of the yearly conferences video clips. Dr. Kothbauer advised me to do another MRI in 6 months form the time I had the first MRI, if no growth then do MRI once a year. However, if there is growth then surgery is recommended.
During surgery, the only way to access tumors safely is from the back. As for my prognosis he thinks it is a benign tumor and it is not expected to shorten my life, but there is some uncertainty in terms of neurological disfunction. As what caused the tumor to appear it has nothing to do with a car accident I had some years ago. With regards to losing Bowel and Bladder control there is a chance of 30% temporary and 5% permanent paralysis. However, with the location of my tumor, it is very rare that I will have permanent bladder and bowel disfunction. Preserving motor functions has priority and he would stop the surgery if the nerves get hot. He would even operate twice, to hinder the loss of motor functions. The risks after surgery might be local pain with the scars, the sutured muscles, and more back pain that what I have now. Walking could be damaged as a result of surgery, i.e. the likelihood of 5% permanent, 30% temporary paralysis.
There are no medications or diet to shrink or hinder tumor’s growth, except steroids which are given preoperatively, but it is not on long term bases. As for treatment surgery is the first option. Radiation if there is residual. This is no minimally invasive surgery for my SCT.
Ed
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Post by peaceandlove on Sept 22, 2014 3:24:55 GMT -6
Hello Ed,
I hope this reply will find you in the good health and spirit.
I am very happy you post and you share the knowledge, and this make me think twice about my case for taking decision for choosing the doctor to make my surgery. Similar to what my doctor told me, yr doc. tell that he may operate twice to hinder the loss of motor function as you said. Can you explain more about what is that. I didn't understand the point technicaly. Why and how operating twice will help in the motor function control. My doc even said that he will be operating with one brain doctor that he will put me under control and watch during the all time of surgery. I didn't understand why and if this helpful. If someone have knowledge about this please let me know.
Thanks
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Post by Ed on Sept 22, 2014 10:55:00 GMT -6
Hi Peaceandlove,
Good to hear from you!
I have read a couple of documents about interpretive monitoring. I had difficulty understanding the terminology; I had to re-read the documents few times. it has helped me understand some of the monitoring that goes on during surgery.
First document: If you look at page 15, (http://www.neurophysiology.org/download/Content/past_meetings/Abstract_2004.pdf) you will find a table by Dr. Kothbauer showing D-wave and muscle MEP. I don’t want to interpret what it says, as I might have misunderstood it, and in the process misinform you.
Second document: This is a report by Dr. Kothbauer (http://www.touchneurology.com/system/files/private/articles/8345/pdf/kothbauer.pdf) where on the last page he states
“MEP change and complete loss of muscle MEP and 50% D-wave amplitude decline indicate the limit of the pattern for temporary motor deficit must prompt a stop of the surgery. A second operation will be necessary if significant tumour mass had to be left behind.”
Dr. Kothbauer has informed me that preserving motor functions is of utmost importance to him, if this was not the case, then any doctor could do the surgery.
I hope others on this site will be able to explain some of the monitoring technologies used during surgery.
Cheers, Ed
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Post by peaceandlove on Sept 23, 2014 1:41:11 GMT -6
Dear Ed, Thanks for quick reply. I will read the article. But if significant tumor mass have been left behind, why a second surgery will be done?? Since there is no change in condition, why he would not do only one surgery. If he couldn't resect the tumor in first surgery I believe he will not be able to resect in second surgery, since same condition persists. If you could explain that point will be appreciated.
If someone else can explain the assisting of brain neurosurgeon during surgery will be appreciated too.
Thanks
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Post by peaceandlove on Sept 23, 2014 2:42:34 GMT -6
Dear Ed,
I read little it is difficult to understand, but I understand That MEP technique(with multiple pulse)is used to monitor the nerves for motor functionality , and the neurosurgeon will check the D Wave and if it goes less than 50% he will stop resecting. But if the MEP neurophysiological device is attached to brain or to spine, this point I couldn't know. If you know please pass the info.
Thanks
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Post by samuridude on Sept 23, 2014 8:55:16 GMT -6
I don't believe that monitoring nerve thingey works too well. In the middle of my surgery that monitoring nerve thingey flat lined. The surgeon stopped my surgery and told my wife that in was going bad and that I wasn't receiving any nerve signals to my legs. I guess by the time the surgeon returned the thingey rebooted itself and I was ok. From what I've read about the thingey is that different types of anesthesia can make the thingey inaccurate, i.e. others have flat lined and been fine. Not to mention they screwed it into my skull, I had the staples to prove it.
It's like everything else, best guess!
-Good Health
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Post by Ed on Sept 24, 2014 8:42:13 GMT -6
Hi Peaceandlove, I wish I asked the NS that question. I have searched for answers on the internet and found very little. Here is what I think, the surgery puts such a stress on the spinal cord that to continue with the operation could cause major neurological deficits. Therefore, the doctors opt to give the spinal cord time to recover and heal from the intrusion before trying another surgery. Another reason might be that the SCT surgery might last 4 to 8 hours, or more. At times the readings might go off and the NS has to wait for a half an hour or more until the readings are back to normal. If there is too many stop-and-go this could prolong the surgery indefinitely, and it could be detrimental to the patient. These are only a guesses. it would be great if someone with more knowledge could answer this question.. As for monitoring, I read this paper, it is Norwegian language, you need to use a web translator, it has good illustration about the use of monitoring equipment: tidsskriftet.no/article/2967511#reference-19 Here is another good journal about intraoperative monitoring written by a very good doctor in Verona, Italy, Dr. Sala: www.ncbi.nlm.nih.gov/pmc/articles/PMC2072903/A third article has a good illustration on the: a) Principles of stimulation and recording sites of decending pathways. b) Principles of stimulation and recording sites of ascending pathways. www.ncbi.nlm.nih.gov/pmc/articles/PMC2072900/I really don't know how to explain the monitoring that goes on. I do understand some of it and the rest goes over my head. I hope someone with more knowledge could provide the information. Cheers, Ed
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Post by Ed on Sept 24, 2014 9:08:14 GMT -6
I don't believe that monitoring nerve thingey works too well. In the middle of my surgery that monitoring nerve thingey flat lined. The surgeon stopped my surgery and told my wife that in was going bad and that I wasn't receiving any nerve signals to my legs. I guess by the time the surgeon returned the thingey rebooted itself and I was ok. From what I've read about the thingey is that different types of anesthesia can make the thingey inaccurate, i.e. others have flat lined and been fine. Not to mention they screwed it into my skull, I had the staples to prove it.
It's like everything else, best guess!
-Good Health Hi samuridude, I am glad that your nerve signals came back. Sorry to hear about the staples though. I didn't know that they have to screw it down on the skull. I would diffidently hate to have any scars on my head. Please, could you write back and tell us the name of the monitoring machine that didn't work. Also, did the NS use D-Wave, MEP muscles, and ESP monitoring during he operation? Or, did the NS use MEP muscles and ESP monitoring only? Cheers, Ed
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Post by Ed on Sept 24, 2014 21:36:25 GMT -6
Hi samuridude, You are right when you said "From what I've read about the thingey is that different types of anesthesia can make the thingey inaccurate, i.e. others have flat lined and been fine.". However, I have rad that D-wave is the only measurement that is not effected by the anesthesia.
Ed
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