I just wanted to say thank you for your posts of well wishes. We came home from the study today with me feeling disappointed and frustrated. While the surgeon did a wonderful job, my spine is in such horrible condition from surgeries and degenerative disc disease that I presented a challenge to him. He did the procedure under fluoroscopy which was good, entered into L3-L4 space, I started to feel pain going down the middle of my butt and then had muscle spasms in my rectum. I then told him and he said he was starting to com out as there was no free flowing fluid. He then went into L2-L3 space and again, I started feeling shocks in my left leg, my leg jerked off the table and my entire foot went numb. He again came out, I could see he was very upset that he could not get any fluid as he wanted to do a pressure test on me. He said my spine is so terrible from degenerative disc disease and from all the surgeries I have had and in addition there was no fluid there. He spoke to me and my husband after, gave several thoughts. Putting in a drain to check pressure and see if my symptoms get better. Didn't think then but if he couldn't get the needle in to fluid, how would he get a drain in to get the fluid? Said he could drill into my head and check pressure that way but does not want to do anything that will cause me more problems and then we talked about the Cine MRI which is my 1st choice. He said he had to go back and review all my records sent to him, records from the spine neuro that I saw in his practice and review all of my films again. He said he will do this and then give me a call with what he thinks the next step should be. You see he is not only testing me for Chiari malformation but also for Normal Pressure Hydrocephalous as well. He wants to make sure everything is covered. So, I will wait anxiously for his call. Thanks for your support, Lily
Thanks Beeba, yes, I do have an awesome neurosurgeon and have a spine neurosurgeon in the same practice that is just as awesome. I know that this Dr. does care and that is why he is not jumping to do something just to do it as so many do. As frustrated as I feel, I feel fortunate to have a surgeon that will thoroughly investigate what is best for me. I know I sound as if I was downplaying the nerve pain....believe me I wasn't. I have had so many spinal injections and nerve blocks and have felt these pains before. I wait a little to see if the calm as the needle passes and if they don't will tell the surgeon as they need to know as it could be a sign of where the needle is placed, the one that got me was the rectum as I have never had that one and I do as I said have bowel and bladder issues. That one I told him about as soon as it went past the butt! I agree, I think in addition to what ever he comes up with I am going to ask him if I can get the Cine, but who knows that might be his first choice although he does want to rule out the normal pressure hydrocephalous. No use in wondering what he is going to do until I hear from him. He is in the office only on Mondays the rest of the time he is doing surgeries or procedures. I am hoping that after this long weekend that he gets back to me on Tuesday....I want to keep this ball rolling, get answers and feel better! Thanks so much for sharing and being a friend, it is appreciated! Happy memorial day! Lily
Sounds like you could also have CSF leak if they were unable to get any fluid. Look up Dr. Wouter Schievink at Cedars Sinai in Beverly Hills. He is one of the countries foremost experts on it. There is a great private FB group who are extremely knowledgeable like this group.
My daughter has a Chiari and I bless Dr. Frim everyday for suggesting her primary problem was a CSF leak. She indeed had a spontaneous spinal CSF leak. Pots and CSF leaks can look very similar. Her Chiari symptoms are so much improved after working with Dr. Schievink and fixing the CSF leak.
Sounds like you could also have CSF leak if they were unable to get any fluid. Look up Dr. Wouter Schievink at Cedars Sinai in Beverly Hills. He is one of the countries foremost experts on it. There is a great private FB group who are extremely knowledgeable like this group.
My daughter has a Chiari and I bless Dr. Frim everyday for suggesting her primary problem was a CSF leak. She indeed had a spontaneous spinal CSF leak. Pots and CSF leaks can look very similar. Her Chiari symptoms are so much improved after working with Dr. Schievink and fixing the CSF leak.
Just something to research.
Thank you very much...The Dr, Is aware that I also had a pseudomengiocle on the L3 L4 level, on the last MRI it showed up as much smaller in size but still it was from a knick in the Dura from my last Lumbar fusion Thank you for thinking of that ! I am actually going to call the office on Tuesday when he is in. I had no problem from the LP attempt but my pressure on the top and back of my head is much more today and I have pins n needles in my left cheek and pain on the side of my left eye. If he is thinking about what he is going to do next, I want him to know this too! Thanks Lily