Pseudotumor Cerebri Support Group
Pseudotumor cerebri (PTC) is a neurological disorder that is characterized by increased intracranial pressure, in the absence of a tumor or other diseases affecting the brain or its lining. Diagnosis requires brain scans and lumbar puncture. Characteristic symptoms are headache, transient visual obscurations or transient visual loss in one or both eyes usually lasting...
Hi everyone, hope you are all doing well.
I went and had my last adjustment of my shunt...thank God I don't have to have surgery anymore to adjust the flow. But the next day I had a high pressure headache (I had almost, almost being the operative word, forgot what they were like). I'm going to call my NS and ask if it is just my body adjusting to the new CSF level. If I go back to the old setting I can only stay up about 6 1/2 hours before the low pressure headaches kick my butt.
This is off the subject of PTC, and I hope it's okay. I just wanted to tell you all that I've had 3 UTI's almost in a row and went and saw my transplant neph. Had started me on a low dose antiobiotic and I got so sick from it and had to stop (chest pain, shortness of breath, vomiting). He told me if I had one more UTI (that was when I had only two UTI's) I would need surgery to replant my tranplanted kidney's ureter tube. I'm hoping that a diff low dose daily antiobiotic is avail. to try. I'm taking vit C and daily cranberry supplements with no luck. Its hard to think about another surgery, but just wanted to give you all a heads up on what else is going on with me. Thanks for listening, Jazzy
I went and had my last adjustment of my shunt...thank God I don't have to have surgery anymore to adjust the flow. But the next day I had a high pressure headache (I had almost, almost being the operative word, forgot what they were like). I'm going to call my NS and ask if it is just my body adjusting to the new CSF level. If I go back to the old setting I can only stay up about 6 1/2 hours before the low pressure headaches kick my butt.
This is off the subject of PTC, and I hope it's okay. I just wanted to tell you all that I've had 3 UTI's almost in a row and went and saw my transplant neph. Had started me on a low dose antiobiotic and I got so sick from it and had to stop (chest pain, shortness of breath, vomiting). He told me if I had one more UTI (that was when I had only two UTI's) I would need surgery to replant my tranplanted kidney's ureter tube. I'm hoping that a diff low dose daily antiobiotic is avail. to try. I'm taking vit C and daily cranberry supplements with no luck. Its hard to think about another surgery, but just wanted to give you all a heads up on what else is going on with me. Thanks for listening, Jazzy
But today still a headache but not as bad, but if I bend over or bend my head the pressure shoots right up and immense headache. Now sleeping with two pillows which seems to help.
I am so sorry that you are still having pain. Sorrier still to hear that you may be facing a kidney surgery in the near future. As you know, I have had my share of kidney problems and while I had kidney surgery in 1995....never a transplant. I'm sure you must be nervous about it with all you've already gone through. As I don't have a shunt (yet), I'm not certain what is the best advice to give. But, please know that you are always in my thoughts and prayers and I hope that your doctors can bring you some much needed relief soon. God bless.
MM3
you always make me feel better. I didn't know you had kidney surgery! I hope your kidneys are doing fine now. thanks for not making me feel worse by saying, "another surgery, i can't believe it". your kindess is like a cool wind on a hot day, Blessings, Jazzy
MM3
Happy thoughts from me too
TJ
Hugs, Stacy
Thank you Stacy,
Yes, we cert. have suffered too much, and I'm so sorry you have been through so much and yet you still think of others and offer me comfort. Again, Thank you.
I went through a three year period where I had excruciatingly painful UTIs every few weeks. They never found a cause, and eventually, after I delivered my first child, they got less frequent and painful. Not trying to hijack, just letting you know that though I've never had a kidney transplant, I've had really bad UTI's, and also kidney stones, so I can imagine :(. So sorry sweetie.
As to the head pain, not that it's ever good to have bad head pain, but for some reason it almost feels worse when you've gone a little while without a bad one. It's like you are forced to remember how bad they can be and go through all the memories again. So, I know how much that sucks too.
I really sincerely truly hope you feel whole again soon, and if it takes surgery to get there so be it, but hopefully you can avoid another invasive procedure. I'll be thinking and praying for you!
Yes those UTI's can be so awful. Plus I've heard that kidney stones are the worst pain ever! It's the antiobiotics that get me, now I'm on a super strong one that makes me feel sick...I don't care what they do since my husband gave me his kidney and I don't have another one lying around, lol.
You are so right, it is worse after not exp. such headaches, but it has actually gotten a little better, though when I put my head in a diff position from neutral I can feel the pressure rise. I will see my NO to make sure I don't have papilla edema with this new adjustment.
I have been thinking about you and wondering how you are doing. I know you are going through a lot and just wanted you to know that you are in my thoughts and prayers. thank you for your kind words, Blessings, Jazzy