CPAP and well past Post-op Pain and some other odd and end questions

hey all and in the immortal words of Jack Nicholson in "The Shining" ------ "HERE'S JOHNNY"

Ok now that me being me is out of the way question time. Having severe obstructive sleep Apnea - machine is set either on 12 or 13 for positive pressure and 13 months post op for decompression; why is the back of my head still so awfully tender? I can not rest the back of my head on a pillow; I can not wear my CPAP mask.

Does anyone else experience this? What have you done for relief?

I know for my mask I have rolled up some wash clothes and placed them on either side of my incision and that works for a while (until they fall out) and the band snaps back (OUCH).

Been to multiple NSs including the one who did surgery and all say there is nothing wrong and I should not be experiencing any pain especially so long after surgery. It seems like I am fighting the CM battle all over again and it is not good for the stress level which you will see why in the next question.

Question/Situation 2: Has/does anyone experience Atrial Fibrillation due to Chiari and/or Syringo? I have been wearing an A Fib monitor for a month and it has gone off multiple times and some times multiple times in a very short time (15 minutes of less) and I did not feel anything. I have been asking my PCP to order a new CINE MRI for CSF flow but he says he does not know how to order it. So I am stuck here unless I can convince the insurance customer service to contact his nurse who does the ordering and see what happens.

suggestions anyone?

Mike

Mike, I think the cine MRI is key for you. Are you geographically close to the surgeon who performed your decomp? If you are, call the radiology department were you had your original cine done and ask them how, exactly, your PCP needs to write the order/ requisition for the cine MRI. If they won’t tell you, have your PCP call them and ask. Not all hospitals or MRI facilities do cine, so starting with the hospital you were originally treated might be a good start. If no luck, call around random radiology departments to ask them if they now were the cines are done, perhaps an upright MRI facility? I know you are meeting dead ends trying to get help, and in a way you are back to square one again with trying. You may need to seek out a new Chiari specialist again to get some help, or at least answers. Don’t give up, there may be something going on that can be fixed. Did you have the duraplasty? Did you get a plate? Do you have EDS?

Jenn

Those of you that don't know, Mike is a wonderful Moderator and friend and all around good guy. I had a situation this weekend where a extremely large & loud concert & great seats threw me into Tachycardia.I thought I wouldn't live through the main act literally. I know you love POTS also :-) I can get you the procedure code for a CINE MRI later today.That is not a problem. Your PCP should have called your insurer provider rep and asked for the code that is their jobs. I am sorry you have had to go this long without it. I would also recommend you ask your NS or PCP about Occipital Neuralgia and get your Major Occipital Nerves Blocked. You will be amazed with the pain relief in the back of your head and even neck. My NS broke his pelvic bone the day before mine so the NS that did it was Dr Ray Sekula. He is not at Allegheny General anymore, but I think this location is closer to you anyway: http://findadoc.upmc.com/PhysicianBioQuery.aspx?EPCDID=111601
Ray is great just to follow up with. He is definitely in my top 10 list of best CM Specialists in the US and 1 of 5 I would ever let operate on me or a loved one with a CM or related issue. Occipital Neuralgia can rock your world and you don't realize how bad it is till you have both Major Occipital Nerves Blocked. It will change your life and is fairly simple, totally OP.The only side effect I had was I felt drunk from the large doses of steroids. The injections pain is minimal after what we have been through. I will send you the CINE MRI CPT Code and you have your PCP make you an appt with Dr Sekula for Occipital Neuralgia. You have everything to gain and nothing to loose. with Major Occipital Nerve Blocks they can't tell you if they will last a day or a week or ten years or forever.Mine lasted 3.5 years and I could tell the week it wore off. The pain increased that fast and that severe. Others that have never experienced Occipital Neuralgia or those exact symptoms with Occipital Neuralgia won't understand but I do and so does Dr Raymond Sekula. You know I won't send you on a wild goose chase or not to who I consider the best NS for the objective. I will send you the CPT Code. Let me know if you want me to call and get you in with Dr Sekula.
Kiss the Salasky girls and your lovely wife,
Tracy