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...
I'm scheduled to have my 14th LP tomorrow and I'm trying to think of anything and everything I can to get out of it. So...I know it's late, but let me throw my situation out there and see what you guys think. (I actually put this info in a different post, but nobody responded so let me try this way.)
I woke up a week and a half ago with liver pain and I believe my shunt catheter wrapped around my liver again. I finally got it to move, but the catheter has continued to give me sharp pains just about anywhere it lands. Additionally, at the same time I started having right neck and shoulder pain and left sided jaw pain. The jaw pain has become so bad I can barely eat. This has all been going on for the last week and a half. These pains are all similar to the types of pains I got prior to the shunt when my pressures were high. Additionally, as happened prior to the shunt, I am feeling some head pressure in the morning, but, if I try to do anything actively I get a severe migraine. I've had several migraines in the last week alone with nausea. My doctor still has me taking Dilaudid for pain. I tried it, but got no relief. I also took Excedrin Migraine and within an hour felt a little better. Does this mean that I'm just having migraines and not high pressure migraines? If that's the case than why am I also having the muscle and jaw pain. Additionally, if I'm just having migraines, than I don't need the LP.
As this is my 14th LP in "just" over a year, I know I run a risk each time I have one. Likewise, I know if my pressures are up, the only way I can prove it and the only way I can relieve it is by having an LP. As I've mentioned before, my shunt has been adjusted to every setting and yet I've had 3 LP's done since the shunt with consistent pressures at 24 which is still too high. I reeeeaaaaaalllllllyyyyy don't want to have another LP, but, still think I might need it. My husband is going out of town this week and I have to take care of my 9 and 13 year old alone in his absence. So, I'm turning to you guys. You all know better than anyone what I'm going through, and likewise, you know about IIH. So, I'm hoping you can guide me. What should I do?
Thanks!
MM3
I woke up a week and a half ago with liver pain and I believe my shunt catheter wrapped around my liver again. I finally got it to move, but the catheter has continued to give me sharp pains just about anywhere it lands. Additionally, at the same time I started having right neck and shoulder pain and left sided jaw pain. The jaw pain has become so bad I can barely eat. This has all been going on for the last week and a half. These pains are all similar to the types of pains I got prior to the shunt when my pressures were high. Additionally, as happened prior to the shunt, I am feeling some head pressure in the morning, but, if I try to do anything actively I get a severe migraine. I've had several migraines in the last week alone with nausea. My doctor still has me taking Dilaudid for pain. I tried it, but got no relief. I also took Excedrin Migraine and within an hour felt a little better. Does this mean that I'm just having migraines and not high pressure migraines? If that's the case than why am I also having the muscle and jaw pain. Additionally, if I'm just having migraines, than I don't need the LP.
As this is my 14th LP in "just" over a year, I know I run a risk each time I have one. Likewise, I know if my pressures are up, the only way I can prove it and the only way I can relieve it is by having an LP. As I've mentioned before, my shunt has been adjusted to every setting and yet I've had 3 LP's done since the shunt with consistent pressures at 24 which is still too high. I reeeeaaaaaalllllllyyyyy don't want to have another LP, but, still think I might need it. My husband is going out of town this week and I have to take care of my 9 and 13 year old alone in his absence. So, I'm turning to you guys. You all know better than anyone what I'm going through, and likewise, you know about IIH. So, I'm hoping you can guide me. What should I do?
Thanks!
MM3
I agree with you, none of the treatments are sufficient. Knowing that is very stressful for all of us.
Honestly, you did not offend me. I was afraid I offended you. That is one of my biggest fears on this site. I truly fear making someone feel bad that is already struggling to get through each day.
What you just read was my over explaining because I don't want to offend you.(or anyone) And I thought I had. I was definitely not offended.
I know how stressful this is on you. I understand text doesn't always translate well. I over explain a lot for that very reason, which didn't work out so well for me this time.
Please know I understand your frustration with this illness. I understand that you are at the end of your rope. You've already taken all the steps made available to us at this time and you're still suffering, for that reason alone I can only imagine how you must feel. I hate this for you and everyone else with a shunt that should be well right now.
When you said "what now?" I felt you were very frustrated, not so much with me, but I surly didn't think I helped matters. I am sorry if I added to your frustration. I am honestly not at my best when it comes to translating text or writing it out myself. (my mind is very foggy)
I was honestly not offended and I am sorry my text made it appear that I was.
And that is my key word here, together.It really is a case of them against us, the Drs that is. We need each other like we have never needed people in our life before. We are each others support, friend, sounding board, agony aunt, and sometimes, even, a quarrel buddy!
We bring to this mix, our own indivdual,feelings, our quirks, and our strenghts,our love. We understand, without having to explain, how or where we are on a given day. We get it.
I remember, before I found this wonderful group, where I was. Very lonely, very scared, isolated.Trying to and failing to cope with this terrible illness. Since I have joined, I cant begin to express how it has filled my life. How, I care so much about people I have never met.
You all , are my first port of call when something is wrong.
I know I can depend on all of you, to help me , support me, dry my tears and even put me straight when the need arises!
Being from Ireland , has huge draw backs. It is not usually up to speed, with the rest of the world, altho it is doing very well in the Neuro dept! I have learned so much from you all. I have quoted you to my fancy drs and believe what you say over them.
So, what am I saying? I am not sure really, just that sometimes we need to tell each other , how much they mean to us. To know that, no matter what, we are here, for each other. Always. With love, Cath.
But, I do have a question for y'all and I'm really hoping you'll all respond fairly quickly cause I'm a bit freaked out right now...really. Yesterday I developed a pretty severe headache with nausea. I took double my dose of pain meds with phenergan and some Excederin. The headache was knocked out, thank God. But, then this morning I got up and ran my daughter to an appt. But, when I got back I was really tired and literally slept almost all day. Then I went to her dance competition where my back and neck started to ache. We went to dinner afterward and it's gotten worse. My neck is really stiff. I know I had the LP on Monday and now it's Friday...but should I be worried??? HELP!!!
MM3
Could you simply have slept on it wrong? While you were asleep for so long and in a drugged state? You know, how, when you have taken something that knocks you out, you sleep like thedead? And not move and turn like you would normally do?
Other wise, I would think, you have over done it and its your bodys way of saying, stay still for awhile,let me recover.
Oh , I know you! Your mind is going a hundred miles an hour, and your body has just slapped you "up side the head" and said chill!
Take that line from your post," but its now Fri".Any one else would still be taking it easy! Slow down girl,give your body a rest. I mean it! If, then AFTER the rest, you still feel poorly, go see your dr. But try the rest part first! Cath.
I get what your saying...but I really wasn't drugged up. I have a pretty high tolerance and actually felt okay when I got up. It was only after I had been on my feet for awhile (several hours after I woke up) that I initially felt some pressure where the LP was and stiffness in my neck.
The pressure where the LP was is freaking me out too. It's like phantom pain from when I had the LP...I swear it feels like it did when the needle was in there. It grosses me out. And when I'm laying down my neck and back feel better. It's just when I'm on my feet or sitting up for a long time that my neck stiffness and back pain starts. One of the things that the paperwork from the clinic said to watch for after the LP was a stiff neck. I'm not one to get paranoid or have anxiety over this type of stuff...but, I seriously am freaked out by this.
MM3
I think your body has been tramatised by the lp. Its just taking a bit longer than normal to get better. Especially after the mess they made of it. I didnt feel like this from previous lps, just the last one.( And it will be the LAST one!)
I wonder why the mentioned the sore-stiff neck? I havnt heard that before. It it cause of infection? Please try and rest a bit. I know you are not doing it! I can see you! Of course, call the dr if you think something is wrong.Its always best to be safe than sorry. Cath
KrYs
I have all those symptoms weekly from high pressure.
Extremely tired at times, I can't stay awake. Back and neck pain/stiffness, sometimes in my shoulder blade. I have also had pain like a nerve was hit in my back, just like an lp causes. Or pressure on my lower back.
I can only assume it's from high pressure based on my own symptoms of high pressure. (which doesn't make sense with you having a shunt and just having an lp)
If these aren't your normal symptoms of high pressure seeing as how you just had an lp and the paperwork says to watch out for these symptoms. I would probably go get looked at. You can't be too safe after getting an lp.
My best advice to you would be what my husband tells me.. follow your inner compass. I understand that compass goes a little haywire after dealing with an illness for so long, but I think we still know when something is truly wrong.
Hopefully you will wake up feeling better today.
If not, I'd give the doctor a call.
Betty
Cath
Thank you for sharing your words of wisdom.
You're 100% right. I attribute the confusion to brain fog. At least for me.
I don't remember what syptoms were written on my paper work after having a LP party but if it says to call your doc if you experience any of these symptoms and you have any ot them, then what are you waiting for?
TJ