Ok, I am having some health problems right now and was wondering if you could help me. I am a 33 year old female and slighlty overweight (5'5" and weigh 180 - though most is muscle and my fat percentage is low). I was diagnosed with Pseudotumor Cerebri in August 1996, after a spinal tap, blood work and a CT. I went through several years of taking Diamox, and the occasional spinal tap. Eventually I failed medication therapy and went to bi monthly spinal taps. My eyesight was fair, I mainly had the headaches 24/7. When my eyesight started going south, I decided to opt for the LP shunt. I had my first one placed in Jan 1999 and within three weeks I was back in getting it revised due to the shunt becoming dislodged and curling up in my back. I went through 6 revisions, till March 2000 when I started having numbness in my left hand. I finally went to my neurosurgeon in July 2000 and was diagnosed with Arnold Chiari Malformation with a syrnix. I had surgery to decompress this 4 days after diagnosis. I had about 3-4 inches of the base of my skull removed and C1 removed. About three months later, I was still having problems. Another visit to my NSG and I was told my LP shunt was causing more problems that it was good. I ended up getting a programmable VP shunt placed in Oct. 2000. I was back in the hospital a week after I went home, I had developed a spinal fluid leak in my back - my NSG also tells me then, that when he was taking the LP shunt out, a piece broke off and he left in in my spinal column. That was the last time I was in the hospital for this. The shunt has been working great, though I was left with nerve damage in my left arm, and am on chronic pain medications for this through the pain clinic here in KY.
Currently I have started having headaches again 24/7 though not near as bad as they were before the shunt was placed. I am also continuously nauseated and smelling things that are not there, having balance problems once again, am lightheaded, feel like my eyes are rubbing against sandpaper (which is something new for me), and my lower back is killing me (esp. where my scar is from the previous LP shunt surgeries). Every morning when I wake up, I can barely stand up, as the day wears on it gets manageable, and then closer to bedtime, it starts to become unbearable again. I am taking Celebrex, Robaxin, Neurontin, and Cymbalta (as well as my pain medicines) for this and nothing seems to be working. I take several baths during the day and my partner is constantly rubbing my back for me, all with little to no relief. Do you think that the piece of shunt that broke off is bothering me now?
I have chronic constipation due to the pain meds I take, am on Colace and Miralax for this, but still have problems. Yes, I have increased my fluid intake and fiber intake, and watch my diet. I currently have internal and external hemrrhoids, which I am using Preperation H and Lida Mantal cream. I know there is not much I can do for these since I am on chronic pain meds, but is surgery my next option? I'm still having the pain, swelling and now I am having bleeding from the external hemrrhoids.
One more thing if I may ask..... Is it common for someone to have PTC and ACM? My NSG said that this was uncommon and that I would probably have headache 24/7 and pain the rest of my life. I am only 33 and this seems like a long time to me. Thank you in advance.
Currently I have started having headaches again 24/7 though not near as bad as they were before the shunt was placed. I am also continuously nauseated and smelling things that are not there, having balance problems once again, am lightheaded, feel like my eyes are rubbing against sandpaper (which is something new for me), and my lower back is killing me (esp. where my scar is from the previous LP shunt surgeries). Every morning when I wake up, I can barely stand up, as the day wears on it gets manageable, and then closer to bedtime, it starts to become unbearable again. I am taking Celebrex, Robaxin, Neurontin, and Cymbalta (as well as my pain medicines) for this and nothing seems to be working. I take several baths during the day and my partner is constantly rubbing my back for me, all with little to no relief. Do you think that the piece of shunt that broke off is bothering me now?
I have chronic constipation due to the pain meds I take, am on Colace and Miralax for this, but still have problems. Yes, I have increased my fluid intake and fiber intake, and watch my diet. I currently have internal and external hemrrhoids, which I am using Preperation H and Lida Mantal cream. I know there is not much I can do for these since I am on chronic pain meds, but is surgery my next option? I'm still having the pain, swelling and now I am having bleeding from the external hemrrhoids.
One more thing if I may ask..... Is it common for someone to have PTC and ACM? My NSG said that this was uncommon and that I would probably have headache 24/7 and pain the rest of my life. I am only 33 and this seems like a long time to me. Thank you in advance.
Hi, My daughter was diagnosed with Arnold chari malformation. She was three and having lite seizures. They wanted to take a couple of vertabras out . They could'nt guarentee me that the surgury would be sucessful. So I refussed to have it done. Your spine and your spinal cord are the core to you. You should get a few different opinions. Some meds you get immune to. I would try to slake of some of them. Try to read or go for a walk, relaxing helps alot. Good luck.
Hi! I was diagnosed with Chiari Malformation and Syringomyelia in 2001. With a tonsilar herniation of 11mm and a syrinx from C6-T1. Had decompression surgery with a C1 lamenectomy 9 months later without any huge improvements. I continued to have periodic pain from my waist down with difficulty walking. Feet pain back,shoulder pain and neck and head pain.
I discovered after my surgery that there were a hand full of Dr.'s in the country who saw a large number of Chiari patients. The Chiari Institute in NY being one of them. The Dr.s at The Chiari Institue found that many Chiari patients had more complicated issues like EDS (Elhers Danlose Syndrome) a connective tissue dissorder. and things like a Tethered Cord.
They diagnosed me with a tethered cord. I found it was the Tethered Cord (TC) that was causing me to go paralyzed from the waist down. Before I had the TC surgery I couldn't walk so I used a wheelchair if I went long distances and crutches for short distances. TC causes bladder and bowel problems too. It's been over a year since my surgery and 90% of my TC symptoms are better.
The type of TC many Chiari patients have is called occult tethered cord. Because it's not easily picked up on the MRI. If I were you I'd seek out another opinion from a Chiari expert.
Hope that helps
I discovered after my surgery that there were a hand full of Dr.'s in the country who saw a large number of Chiari patients. The Chiari Institute in NY being one of them. The Dr.s at The Chiari Institue found that many Chiari patients had more complicated issues like EDS (Elhers Danlose Syndrome) a connective tissue dissorder. and things like a Tethered Cord.
They diagnosed me with a tethered cord. I found it was the Tethered Cord (TC) that was causing me to go paralyzed from the waist down. Before I had the TC surgery I couldn't walk so I used a wheelchair if I went long distances and crutches for short distances. TC causes bladder and bowel problems too. It's been over a year since my surgery and 90% of my TC symptoms are better.
The type of TC many Chiari patients have is called occult tethered cord. Because it's not easily picked up on the MRI. If I were you I'd seek out another opinion from a Chiari expert.
Hope that helps
my daughter who did have it was killed but thank you.