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
I had surgery again yesterday to convert VA Shunt back to VP shunt, as my heart rejected fluid so badly it had to come out.
I have a different type of shunt apparently. Neurosurgeon had to order it in specially, It came from Germany, Anyway, had no choice really but to have it back in tummy as my vision and headaches were horrendous while shunt was tied off.
It hasnt been 24 hours yet and already i can feel the stabbing pains starting again. I feel totally battered and bruised from surgery, really have had enough. My heart went crazy again in recovery, beating at 230-240 bpm, think it had had enough general anasetics to last a life time, 10 surgeries in 7 months is not good.
I may have to have Sub Temporal Decompression done if vision doesnt improve. This shunt is set at 28 which is really high but thats to hopefully lower the amount thats drained into my tummy to see if that helps with the pain
Will let you know how it goes.
Love & Hugs
Tracey x
I had surgery again yesterday to convert VA Shunt back to VP shunt, as my heart rejected fluid so badly it had to come out.
I have a different type of shunt apparently. Neurosurgeon had to order it in specially, It came from Germany, Anyway, had no choice really but to have it back in tummy as my vision and headaches were horrendous while shunt was tied off.
It hasnt been 24 hours yet and already i can feel the stabbing pains starting again. I feel totally battered and bruised from surgery, really have had enough. My heart went crazy again in recovery, beating at 230-240 bpm, think it had had enough general anasetics to last a life time, 10 surgeries in 7 months is not good.
I may have to have Sub Temporal Decompression done if vision doesnt improve. This shunt is set at 28 which is really high but thats to hopefully lower the amount thats drained into my tummy to see if that helps with the pain
Will let you know how it goes.
Love & Hugs
Tracey x
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I gave my 2 week notice last Friday 13th. Now to join you fine people in a life of leisure and nothing else to do but to look out for myself....is it just me or does that sound pretty boring? My goal was to live to retire and I guess having to take early retirement because of health reasons wasn't exactly the way I had planned things. I just can't stay in that building that is reeking mildew...
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I'm trying to exercise daily. I was doing fairly well until I sprained my ankle 2 weeks ago but now I'm getting back on the horse. Today I walked over a mile with my arm weights that are about 22lbs total. I was out of shape and it was hard on my arms. I also did my 30 situps. I'm also going to drink a lot of water and try to eat healthy. I do tend to have a sweet tooth but I'm cutting...
You have to wonder, what to do next?
Have you contacted TJ? His conversion has worked wonders thank God. Maybe, he might have some ideas for you? I know he wont mind if you get in touch.
That pain, is indescribable, isn't it? I ended back in the ER twice with it. I got Morphine, which did help, but for me, it allowed me to get some badly need sleep. I was going out of my mind with pain, made so much worse with no sleep.
After, it did seem to settle down albeit with an anti spasm drug.
It was called Buscopan, but I dont think it is available in the US.
If you like , I can look up the active ingredients?
What are they suggesting next?
In a way, I am like you, but not in terrible pain. They have no idea what to do next with me. I am not responding to the drugs, shunt or anything else for that matter. hard to take some days,eh?
I do hope, that , something good will come your way very soon. Enough, is enough! Cath.
My VA is doing pretty darn good.
TJ
Well im still in hospital, waiting to be seen by the chronic pain team to try and sort some long term pain relief out. I am taking regular oramorph at the moment which is helping the pain and 100 mg of amitriptyline at night to help me sleep.
Cath, I live in the UK and i tried Buscopan last year before i had surgery to convert shunt but it didnt work for me. I might give it another go thou if it has helped you..
Neuro really doesnt know what to do with me next, because the shunt setting is on 28 and i have a shunt assistant!! which is a second valve that works with the initital valve in my head, he could higher it a little to reduce the amount of csf again, but this will obviously increase my headaches and swelling on optic discs, its a no win situation,
He could do decompression, but cannot guarantee this will stop tummy pain because it seems its not the amount thats draining its the fact that it is draining there even a few drops.
I could sit and cry at times as it seems i am right back where i started and the previous 12 months of pain and surgery have been a total waste of time.
Well i will let you know what the chronic pain team can offer me and what neuro thinks next step will be.
TJ....So pleased you are doing well xx Think its just me being awkward lol
Thanks for your lovely kind words
Tracey xx
One really bad night, I had to call the dr at 3.00am it was so bad. They gave me 20mgs of Buscopan , first, the Morphine,while on the way to the hospital in an ambulance!
Once there,all the did was the usual cat scan, which showed the catheter was in the correct place.
I know it was the excess csf but you couldn't talk to them.
I got more Buscopan, to help and it did. More, I would think, from the fact, that I could actually sleep. I was so exhausted form the pain.
Moving your body, a little bit, from what ever position you may be in, helps as well.
I hate to say this, but it really does take time. Time for your body to adapt to the presence of the csf somewhere it is not suppose to be.
Try the Buscopan, it makes you drowsy so beware, and hopefully you can get some sleep. Cath