So I had my follow-up Thursday. And he finally took the time to listen to what I was saying!
So he wants me to have a lumbar puncture to check for Pseudotumor Cerebi. But I am very leary of it b/c I've read that we shouldn't have those or spinal taps or epidurals.
He also wants to have and EMG and a Nerve Conduction Study done.
Jessi Linn,
Great advice from both Beeba and Emmaline. I just had a spinal tap last week but I have been decompressed. They need to be very careful so that your herniation doesn't get worse. I would ask a lot of questions and ask about what precautions they are going to take because of the Chiari. They used imaging and xrays during mine so they could see precisely where they were going. It took longer but I didn't get any of the serious side effects that you hear about (Headache, nerve pain) I would also make sure day of that a very experienced doctor is doing the proceedure. I was used as a teaching tool and it wasn't fun. If that hadn't been the case it wouldn't have been a difficult experience. I had never had one before and I was extremely worried but they numb you up and it doesn't really hurt. It's just a little uncomfortable. Good luck and keep us updated.
Wendy
Beeba, I believe he is planning to do the LP and get the results before sending me for the other tests.
He wants the LP done b/c I am having so much trouble with my vision, but my eye doctor says nothing has changed since my last exam, which makes him wonder about the Pseudotumor Cerebi.
And the other two he wants done b/c the numbness and tingling in my hands has now spread all the way up to my elbows and is now in my feet. And my muscle strength has gotten worse also.
Beeba said:
It is considered safe as long as they are aware of your condition. Out of those three tests I would choose the spinal tap and wait for results before going for the nerve conduction study. If needed ya have to do what you have to do but it is a rather unpleasant test. What symptoms are you having that lead to this decision?
I'm not sure who is going to be doing it. My NS is sending me to a different doctor to have it done. Is complications like that very common?
Emmaline said:
I had a myelogram, and they did an immediate blood patch right after to seal the puncture.
Are you having these done through a NS or NL?
is your doctor knowledgeable on chiari??
I haven't been totally decompressed. I just had a partial, if you wanna call it that, in February. And that is why they are sending me to the hospital to have a radioligist do it with imaging b/c he tried to do it in office but his needle wasn't long enough and since he couldn't see where was he was going he hit alot of nerves and it hurt like hell! I have a bruise the size of a biscuit on my back now and my back and hips are still hurting.
wendyanne said:
Jessi Linn,
Great advice from both Beeba and Emmaline. I just had a spinal tap last week but I have been decompressed. They need to be very careful so that your herniation doesn't get worse. I would ask a lot of questions and ask about what precautions they are going to take because of the Chiari. They used imaging and xrays during mine so they could see precisely where they were going. It took longer but I didn't get any of the serious side effects that you hear about (Headache, nerve pain) I would also make sure day of that a very experienced doctor is doing the proceedure. I was used as a teaching tool and it wasn't fun. If that hadn't been the case it wouldn't have been a difficult experience. I had never had one before and I was extremely worried but they numb you up and it doesn't really hurt. It's just a little uncomfortable. Good luck and keep us updated.
Wendy
Lisa, he doesn't specialize in it, but has several patients with it.
Lisa W said:
is your doctor knowledgeable on chiari??
Beeba, when I say partial I mean he didn't remove the piece of skull or open the dura to place a graft. He used a patch to hold up one side of the tonsils in hopes that the other would go up on it's own and shaved my C1. That's all.
As for the eye doctor, I can't remember which one he is. When I had my exam in June I told him that I was having alot of trouble with my vision and he said everything was the same as the last exam, only an astigmatism, and that there were no other tests he could do, for me to talk to my NS about it.
As for being through the wringer.... It's been hell! I thought it was weird for him to do it in office also, but he said he does them frequently. And he said he wanted the other 2 test done to find out what is going on b/c it is just getting worse. He thinks I may have more nerve damage then he originally thought. And no, I haven't had a cine mri since surgery. Just a regular brain mri and cervical mri.
I'm trying to get into Mayfield. They said they would take over my case, but not until December b/c they wanted to give my incision plenty of time to heal.
I have been trying to get my NS to check for the occult form of TCS b/c I have all the signs of it, but he said the lumbar mri shows no sign of TC and doesn't think anymore testing is needed. Also, they never have done a full spinal mri, which I wish they would b/c I think I may have a syrinx due to stuff that happened and was said when I started getting real sick and was diagnosed in November.
I am really at my ends with this doctor. I've had to get my PCP to send me to a pain management clinic b/c my NS sent me to a DO for it and he said my ha's were caused from medication, not my Chiari. I haven't been on any narcotic pain meds since April and it has been about to kill me!
Beeba said:
Jessi linn, what exactly do you mean by a partial? Did you see an opthamologist or optometrist? Sorry to throw a question back at ya. Just trying to understand before I misspeak.
Wendy, I had a similar experience where they tried to use me as a guinea pig. It was before being diagnosed. I went into the hospital for intractable vomiting. I did have a bad headache but the same one I had always gotten. I was more concerned over the throwing up but I did mention it in passing. Next thing ya know I have 12 drs (in training) in my room. Trying to convince me to do the LP. I had no premonition just fear so I fought it and said no. They expressed concern over it being meningitis I put my chin to my chest and said no. With that the discharge papers magically appeared a few minutes later. Fast forward 2 er visit and I got diagnosed with chiari. This time I would be highly medicated it would be in an or setting with guided ultra sound. Now who would have even known that was an option?!?! I understand that everyone needs to learn but me being as panicked as I was do you really think I am an ideal candidate. I would not have been cooperative and at that time a headache wasn't even my chief complaint.
Back to Jessi, honey you sound like you have been through the wringer with this whole deal. I mean for heavens sake a LP in a drs office without the proper equipment??? I am outraged for you. Please consider those other tests very seriously they are classic chiari symptoms and I would hate for you to have them needlessly. Have you had a cine MRI since surgery?
I'm just across the river from Louisville, KY. Within driving distance of Ohio, Illinois and Missouri. Have family in Arkansas so we could easily go there.
As for the pupil dialation. I have never had my pupils dialated b/c they are big already and every eye doctor I've seen has said it wasn't neccisary. I'm not in a rural area, so I could go to any doctor.
Mayfield said they wanted to wait to try to cut down on the scar tissue build up.
I'm the same way. I'd rather you be straight than beat around the bush. I also call mine a waste of time and needless. If I had really understood what he was planning, I would have went somewhere esle. I don't believe the nerve damage is reversible either. I'm not exactly sure why he wants to mess with it right now either. He has already said we may have to go back in to place a graft.
And thanks for the picture. I had no idea what these tests were. Now I am really reconsidering putting myself through them. I'm gonna look for someone else to take it over. My NL might be able to refer me to a new NS. I just want them to know what they are doing. There is a lady in my support group who's NS is in the same office as my NS and he did it properly. So I'm still at a lose for why my NS decided to take a short cut, just to put me through it again!
Thank you for your advise, insight and help. It is very appreciated!