The Nuerologist has said if my next Mri does not show any lesions on my spine for MS he wants to do a lumbar puncture. …I think that is what he said any way. Is this the same as a spinal tap? Is this not recommended for people with chiari? Should I tell him I definetly want to see a neuroseurgeon before going that route?
I have had an epidural before during a csection, and I guess that turned out ok. Is that similar?
I have always heard not to get lumbar punctures (spinal tap) with Chiari. With that said, I had one in HS (1985) before we knew I had Chiari. I have also had one post decompression surgery because I had meningitis.
When I was deciding whether or not to have surgery, my NS said if I didn't, to be sure not to get a spinal tap (lumbar puncture) in the future because with Chiari the pressure of draining the spinal fluid could actually pull the cerebellar tonsils lower.
Typically if an MRI does not show plaques (white spots) and MS is suspected, they do a spinal tap as a further diagnostic test. Apparently circular rings will show up in the fluid if MS is present.
An epidural is different than a tap because they are not taking fluid out, but putting anesthesia in.
Good luck.
I have had 2 decompressions for Chiari and a third surgery due to a csf leak from the first surgery. Just this past Dec 2013 I had meningitis and then had meningitis AGAIN in June of 2014. Several Lumbar punctures although I have heard too that a Chiari Patient should not have them done. The last one was a killer...it's been 2 months and my back is still hurting pretty badly. They said that the only way to determine what type of meningitis is to to do a LP...What do you do??????
I had increased ICP and had several spinal taps prior to knowing I had Chiari. After each spinal tap I had severe low pressure headaches and had to have blood patches after each one. We now know that the low pressure headaches were caused by a worsening of my herniation with each tap. I also had a significant worsening of my neurological symptoms after this. So in my personal experience Spinal taps are not recommended. I do have to say though if I would not have had them done I may still not have a diagnosis of my Chiari and wouldn’t have had my decompression surgery. So for me it was a double edge sword. If you know you have Chiari I would definitely make sure they know this and the complication an LP can have for you. You have to outway the pros and cons and make sure you and the doctors are fully educated. I was unknowing of my diagnosis and suffered greatly from a few unnecessary spinal taps. Best wishes.
The big question is this, if they found MS would your treatment options change? Could they improve your quality of life? Would the potential benefit outweigh the risk, or would this just be a diagnosis without real treatment options. I would certainly ask the doctor what could happen if a leak develops after the puncture and what the treatment options for MS are.
Is the team that does the puncture very skilled in this type of testing? I would also ask them if they will record your opening pressure if you decide to have ths done as pseudotumor cerebri (IH) can be ruled out if you have an LP done.
My neurosurgeon said for me to never ever have one!!! Get another opinion definitely.
LP and spinal tap are the same thing. Epidural is different. However, I have met some people on a FB group who say the epidural caused problems, too.
The LP is considered to be highly contraindicated in those with CM as there is a risk of herniation to the malformation. Also, the pressure in the cerebral spinal fluid is low, thereby increasing chances of problems. My research has shown they IF the LP is performed by a knowledgeable doctor, the risk is decreased. Drawing the fluid out too fast is one of the problems.
I refused for months before my CM was diagnosed to have an LP done to detect Lyme disease. Boy am I glad I stood my ground! The neurologist I was seeing where I lived actually laughed at me when I told him my CM had to be linked to the Lyme as I have never had these issues prior to the tick bites! He further stated it was only 4 mm, so i could not possibly be having any issues from it! Then went on to insist I was going to have the LP done! Sorry buddy! My body, my choice! And I am so thankful I listened to that little voice that told me NO lumbar puncture, even before I was diagnosed with CM!
I see a top CM doc tomorrow, so I am praying he has the answers I am looking for!
Good luck and good health to you!
My NS wanted to do a Myeologram which is the same thing and I was scared so I told him I would rather not. He told me it was dangerous for Chiari patients who have not had decompression surgery yet but I still didn't want it.
Have you seen a neurosurgeon? As soon as I was diagnosed with Chiari (3mm) I was sent to a surgeon. If I were you, I would not do the LP. I would ask my doctor to rule out everything from the CM first. The size isn’t as important as your symptoms. I didn’t need surgery for almost 10 yrs. after my CM diagnosis. Though it was only 3mm, I started having blackouts many years after my diagnosis. When that started, I had a fluid flow MRI which confirmed I needed surgery. If the neurologist is not willing to work with you, find a new one. It sounds like he/she has already made up his mind that the CM is not a problem. Have you asked what his treatment plans are if you tested negative for MS with the LP? Has he done an EMG? MS was also suspected with me and did an EMG in addition to the MRI’s.
Just a thought, but have you be checked for Lyme disease? All too often Lyme is being misdiagnosed as being MS, ALS, etc. Most particularly neurological Lyme.
There are several co-infections that also cause neurological problems that are misdiagnosed.
My CM was found via an MRI to detect brain lesions from the Lyme. It just so happened that I was in the throes of a 4 day episode of severe vertigo, headaches, pressure, etc. When the already ordered MRI took place. My symptoms had increased and I now know it was the CM that did this.
My Chiari was 11 mm...went to neurologist first and she said that it was up to me about the surgery...She had heard good and bad things. But I had such bad symptoms...balance, massive headaches, vomiting...I felt I had no choice. 1st NS did a botch job...thus the csf leak. 3rd surgery went to Dr Rosner in Asheville nc...good job. But then the meningitis hit...That's where the LPs came in..I think I have had about 4 of them. They haven't said anything about MS for me!
Would certainly go with you if I could!!!!!!!
All the literature I had read says DON'T do LP if you have Chiari...But with the meningitis, I was stuck...It's the main Diagnostic tool to evaluate what the bacterial organism is that's causing it!!!
Easy to feel discouraged...Chiari is a never ending battle...daily problems. I can't relate to MS.
Please study for yourself,that was the only way out for me.In my case I had a chiari 0 and was very symptomatic.My chiari journey lasted for 28 yrs.it was a living hell,going from one Dr. to the other and always feeling stupid for even trying.It is important to go see a NS that does many decompressions each year.If not for a specialist,there was not one Dr.qualified to diagnose my case.The herniation is not a good measure for chiari I will always tell all of the importandpce of a specialist in this field.Hope you find the answers you need,lots of folks on this site can give you advice on the LP,I was lucky not to need one.Good luck
My daughter with Chiari has had several LPs due to the fact she also has high intracranial pressure. They have all been done with an experienced Chiari neurosurgeon though.
I had a bad experience with my spinal tap. It took three attempts before they could get any fluid. Then I had a nightmare spinal headache for two weeks because they wouldn’t do blood patch to seal leak. My MRI after the spinal tap showed that the tap actually herniated my brain 7mm more because it worked like a vacuum sucking my brain further into spinal column. That made symptoms worse and led to my decompression surgery. Get a well experienced neurosurgeon to advise you.
No spinal punctures!!! Where do you live? Have you seen a neurosurgeon first? Have they done a Cine MRI on you first?
Be very careful with doctors experimenting with you until you have done your research. Just rely on pain management for now until you know exactly what is wrong and what you need. At this point if you have Chiari you have to monitor everything you take and what they do to you. Keep in mind most doctors do not have knowledge of this condition. Go to CSFinfo.org and ask for Cathy Posnik. That organization has been a great resource for me. They can recommend neurosurgeons on their site. We are all here more than happy to give you any advice according to our experiences. God bless you and be very careful what they do to you. Jozy
By the way, there is a big difference between a neurologist and a neurosurgeon. Be very careful Neurologist are quick to run incorrect test especially if they have no experience in Chiari. I was wrongfully medicated and had unnecessary procedures which only made matters worse. Please be careful and look for a doctor who specializes in Chiari. A good neurosurgeon. If you tell us where you live we can tell you who’s the best in your area.