Today I had an appointment with a NS in Lubbock,Tx. At first he told me that because they had put the shunt in that I should just go back to Denver and let the NS that did it do some follow up on me,but when I told him that the NS that did it is now in California some where he changed his tune and started to ask questions about what they had done.He told me that even if my symptoms at the time when I had the surgery were bad that they should have waited and tracked my symptoms for at least a year before doing anything and then probably would not have recomended doing the shunt.He also said that from what he saw and read in the MRI`s and reports that he could not see the shunt.He ask me if I know what they had done and all I could tell him was they said that they had to put in the shunt and try to untether the spinal cord.He also ask me what they had doneto the bones in my neck that they had to cut into and I told him that Dr.Daily had told us after the surgery that he had used some kind of bonding agen to seal them back together and didn`t use any screws or plates to support it.He acted like he didn`t believe me but that is what Dr. Daily had told us.For some reason I didn`t have the actual operation notes with me but we do have tham and it tell`s what they did for what kind of anathesia they gave me until I was comming out of recovery.I thought I had those with me but some how they didn` make the trip.Any way he finally told me that he would take me on as a patient and the first thing he want`s to do is have a CT mylogram done to see what all he can.He dosen`t know why my symptoms are comming back but he did say that maybe the shunt was blocked and if that has happened then there is probably not much he can do.Not a very good out look if you ask me.I also ask him if PT is very helpful and he said that any physical activity is a good thing and that I should be doing some kind of phyical activity to maybe prolong and maybe even help to stop the progression of the symptoms.If that is the case then why did the other doc`s tell mme not to do so muuch and that I should stop doing anything that required physical strane and not to lift anything more than 25 lbs.Now I just don`t know what to thinkone Doc say`s one thing and now this one say`s something else,is it because this is a rare disorder and no one really know`s what to do or expect it to do????Some times I just want to scream at the whole damn world..............
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Well here is my two and three cents worth. I think your first dr. was right to tell you not to lift anything to heavy especially after surgery. You still need to be careful but you should be able to engage in activities such as light excerzining. As for the dr. wanting a new ct that is pretty par for the course. Every time I see a new dr. they want to order a ct. If you have had one in the past 6 months I would just have that ct sent over along with the rest of your records... if you keep seeing this yohoo dr.
Well if the shunt is clogged then it needs to be unclogged. Shunts clog up. Also the way the dr. fussed your neck is a newer procedure but you would think that that dr. would have realized and been aware. And for him to say you did not need surgery well; he was not there. The dr. that did your surgery most likely want to help you before things got worse. This current dr. seems to be the kind that waits til it is really bad and then deals with it. Is he a neuro surgeon? I have seen a neurologist and a neruo surgeon and i think the neuro surgeon is better able to help with nerro problems and advice, help and surgery of course if needed.
Listen to your body about excerzise. If you start to feel fatigued or uncomfortable stop; it is important not to cause your blood pressure to get too high.
I am so ennoyed the dr. would say there was nothing to be done if your shunt was blocked. that does not sound right at all to me. Shunts do clog and they can be uncloged that is why they are put in in the first place. So there is a place to go if there are pressure problems.
I understand you frustrations. Even after all I have been through and the dr. know when i say something hurts that well I am hurting they still sometimes act like I do not know what i am talking about... like it is all in my head.... well IT SURE IS. Repaired blood vessel and brain damage and all...
Well, I got rallied up. smiles and a laugh. My cat Precious is driving me crazy this morning. She wants out of her cage. She lives in a three story cat mansion. She has behavioral issues. She had a nervous breakdown while I was in the hospital. To many changes and my disaperance just sent her over the edge. My solution was to put her to sleep and bury her face down so she could see where she was going. But my husband would not have her put to sleep and I knew it was an area I could not just cross the line about. So the solution was a pill every night and she lives in a three story cat cage in his den.
Take care dear friend.