I went to my first post-op appointment with Dr. Di on the 12th. He was discouraged that I came in with the walker. (I was too! LOL!) Part of the reason for it is the increased and continuous dizziness. Another reason for it is the weakness in my left leg, that quite frankly, I don't believe has anything to do with my Chiari, but with ??Dercum's Disease?? which has still not been 100% diagnosed, but suspected (a great number of angiolipomas all over my body, which cause pressure on nerves, which also respond negatively to stressors such as illness, surgery, tramas...)
With regard to the outcome of surgery, I have most of the same symptoms still and some, such as my head pain and pressure, which is still present, but in a different way. More pressure now than pain. That being said, he suggested that I may have PTC.
Right now, we are in the "testing" stage to determine if PTC is what's causing my continued problems. So he has had me on a Medrol Dose Pack for the term of it (6 days). Once I'm finished with this, I will take a week off and then he was going to have me take Diamox for ten days. Well, as it turns out, I can't take the Diamox because I am allergic to sulfa and it contains two different sulfa molecules. SO... I will be taking Lasix instead. (It still has a sulfa molecule, but the pharmacist has encouraged me that it isn't the same type as the one's I have had reaction to.)
WOW! I can't imagine having to use the MDP on a regular basis. I am SO miserable! And the last thing I want is to gain weight from it! (My niece was on steroids for a very long time and she looks like someone hooked her up to an air hose and forgot to unplug her!) The pressure in my head is incredible. I am emotionally strung out. And last, but not least, with the increased pressure is more pain.
The doctor didn't explain what he expected each of these meds to do. I suppose his reason was so that I wouldn't have any pre-conceived expectations and he could listen to what I told him and figure out what he needed to extract from that. So far, my experience with the MDP is a HUGE increase in pressure... and the back of my head and neck are swelling... and that area of my head burns inside. I'm hoping then that the Lasix will reduce the pressure.
I'm not sure what to do if this is a pseudo tumor. As much as I don't want to be on these meds long term, I also am not fancying another surgery. I have seen where too many people have repeated problems with the shunts too, requiring many additional surgeries. It seems there is no really good and pat answer. Again, I don't want more surgeries... especially when there is no guarantee from them that there would be any lasting benefits.
For those of you who have dealt with this... In your opinion, would it just be better to use medicine therapy? I do drink lots of water all the time. I have had urinary and kidney issues all my life, so I'm sort of used to it. I am one of those people who always has something to drink in front of them. I guess I would have to weigh the side-effects of drugs against surgery. I can't risk any further damage to my kidneys, for instance, as I have almost lost one of my kidneys on two different occasions. I am not on dialysis, but my aunt had the same thing, and was on dialysis by age 55... and died at age 62. She also had other problems I do not have, and likewise, I have other problems she did not have.
I am not ruling out whether or not the decompression surgery was a success for me. It has only been 7 weeks. I have dealt with these symptoms for over 12 years... and some for my whole life. I didn't expect a miracle but hoped for SOME relief. But what I went in expecting was only to have the progression of my symptoms slowed or halted. I'm not willing to throw in the towel yet! ;) (Although there are certainly days!)
Thank you all, in advance, for your pearls of wisdom with this. I love and appreciate you all so much!
((HUGS)) and blessings!!!