Aa
Pseudotumor, or chiari?
Hello Everyone, thank you so much for reading ;) I am a 36 year old Female, I was diagnosed this past year with pseudotumor Cerebri, but have not been able to take the medication, and their repeated lumbar punctures are a total fail as even under xray they are extremely traumatic, even though I have high pressure, they are unable to drain any fluid out of my spine to relieve my symptoms. I am working very hard at changing drs. I have had MRI's, MRV's, CT scans, all normal except noting sinus disease although I do not have sinus problems. I have been in ER with nyastagmus, trigeminal and occipital neuralgia, fourth and sixth cranial nerve problems. They want me to have another LP tomorrow, but I believe the fluid is stuck in my head as it takes hours for them to get any fluid out. I am afriad if they continue to do lps it will make me worse. They are talking about bolt monitoring since lps so unsucessful, would this hurt me if its chiari? they are possibly admitting me tomorrow.
I have been reading about Chiari, as it keeps coming up as I research my symptoms. I have terrible pain and pressure at the base of my skull, a never ending headache, when pressure increases bright red and burning face, very swollen lumps at the base of both sides of my skull bottom, hard like bone, yet they swell and change shape and HURT all the time, inside, pressure. they are NOT glands. I have bad speech and memory problems, balance problems, swelling joints, two surgeries to widen my throat yet they did not find why my trouble swallowing. ringing ears. vertigo. my dr is ignoring my symptoms for the most part, he tells me to go to ER, and ER tells me to go to my neurologist. I do not have swollen optic nerves typical of pseudotumor, in fact I have extremely tiny abnormal optic nerves but high ocular pressure. I have had consistent visual problems but they cant give me any answers. Ihad double vision for a month once and had to wear a patch on my eye.
Does anyone else have these lumps/swellings on the back of their head, and if I had CHiari wouldnt it show up on a basic MRI? I have seen the reports, and they were all to rule out acute process, stroke, or tumor. none of thyem were to look at anything in particular, except the one for the sixth cranial nerve.
thank you so much for any informaiton you can give me, i feel like im going to war tomorrow. I feel like the fluid is blocked in my head
I have been reading about Chiari, as it keeps coming up as I research my symptoms. I have terrible pain and pressure at the base of my skull, a never ending headache, when pressure increases bright red and burning face, very swollen lumps at the base of both sides of my skull bottom, hard like bone, yet they swell and change shape and HURT all the time, inside, pressure. they are NOT glands. I have bad speech and memory problems, balance problems, swelling joints, two surgeries to widen my throat yet they did not find why my trouble swallowing. ringing ears. vertigo. my dr is ignoring my symptoms for the most part, he tells me to go to ER, and ER tells me to go to my neurologist. I do not have swollen optic nerves typical of pseudotumor, in fact I have extremely tiny abnormal optic nerves but high ocular pressure. I have had consistent visual problems but they cant give me any answers. Ihad double vision for a month once and had to wear a patch on my eye.
Does anyone else have these lumps/swellings on the back of their head, and if I had CHiari wouldnt it show up on a basic MRI? I have seen the reports, and they were all to rule out acute process, stroke, or tumor. none of thyem were to look at anything in particular, except the one for the sixth cranial nerve.
thank you so much for any informaiton you can give me, i feel like im going to war tomorrow. I feel like the fluid is blocked in my head
Best Answer
COMMUNITY LEADER
Hi Robin...well vitamins can help if u r lacking...so I am sure blood labs r being done to get the correct dosage....
I have heard of others trying the botox....not sure how that really works.....I have not had it.
Please keep us posted on ur progress and how these forms of treatment work for u : )
"selma"
I have heard of others trying the botox....not sure how that really works.....I have not had it.
Please keep us posted on ur progress and how these forms of treatment work for u : )
"selma"
Thank you so much for your helpful responses! I truly appreciate it, I saw another neurologist who says I have IH and Chronic Daily Headache. He wants to do vitamins? riboflavin and magnesium and botox injections in the back of my head. I hope this will not make it worse if I DO have a chiari! I was also diagnosed with MONO and I think my Lupus test came back pos and they are sending it back out. Like a big puzzle and I dont have the pieces :(
THank you so much for all your wonderful answers, Im going to get copies of my scans as soon as I an afford to pay for them!
THank you!
Robin
THank you so much for all your wonderful answers, Im going to get copies of my scans as soon as I an afford to pay for them!
THank you!
Robin
COMMUNITY LEADER
Hi and welcome to the Chiari forum.
The procedure u r talking about having done is questionable....goodness...if u have both...chiari which is causing a CSF blockage that would explain the issue of how long it takes to draw fluid during a LP....and the LP itself if drawn too quickly can pull the chiari herniation down even further...causing more of a blockage...
I agree with the other 2 posters in that it may be in ur best interests to get copies of ur MRI's out to chiari drs...I am not sure with this other procedure planned if u have time for that.
I would hope that the drs would be doing a cervical MRI b4 inserting this bolt monitoring....but it is just a way to release the fluid that is built up.....
Please keep us posted on how this unfolds
"selma"
The procedure u r talking about having done is questionable....goodness...if u have both...chiari which is causing a CSF blockage that would explain the issue of how long it takes to draw fluid during a LP....and the LP itself if drawn too quickly can pull the chiari herniation down even further...causing more of a blockage...
I agree with the other 2 posters in that it may be in ur best interests to get copies of ur MRI's out to chiari drs...I am not sure with this other procedure planned if u have time for that.
I would hope that the drs would be doing a cervical MRI b4 inserting this bolt monitoring....but it is just a way to release the fluid that is built up.....
Please keep us posted on how this unfolds
"selma"
It may be helpful to get your actual films and send them to a Chiari specialist to review. I am pretty sure most of them will review them for either free or a small fee. I know lots of times they consider it an incidental finding and dont mention it. Sometimes the radiologist simply over looks it. If you have Chiari repeated LP's can cause a worsening of the herniation and/or symptoms. There is a condition called Chiari zero that doesnt require the usual 5mm herniation to be diagnosed and I think alot of them over look that.
I am sorry that you are going through so much, I know these symptoms just interfere with life.
Pam
I am sorry that you are going through so much, I know these symptoms just interfere with life.
Pam
You are reading content posted in the Chiari Malformation Community
Find out how beta-blocker eye drops show promising results for acute migraine relief.
In this special Missouri Medicine report, doctors examine advances in diagnosis and treatment of this devastating and costly neurodegenerative disease.
Here are 12 simple – and fun! – ways to boost your brainpower.
Discover some of the causes of dizziness and how to treat it.
Discover the common causes of headaches and how to treat headache pain.
Two of the largest studies on Alzheimer’s have yielded new clues about the disease
Chiari can show up on a basic MRI but that doesn't mean that the radiologist or NL will make a note of it. Many of them just think that it is asymptomatic even when you are having the problems you are!! That is exactly what happened to me and I was left for 6 months to get worse, finally I got a NS to look at my scans he dx'd my Chiari and I had surgery within 3 months. Have you even had a NS to look at your scans? If not, I urge you to do so....a lot of them have clinic days for that purpose. Honestly, my NL was completely useless to me!!!!!
It certainly sounds like Chiari to me and as Pam pointed out above, the herniation doesn't need to be huge. A good knowledgeable NS will be more concerned about how much compression there is of your cerebellum against your skull. I have a fairly small herniation but there was a definite blockage at the foramen magnum.
Yes, if you had Chiari, a LP could make things worse. If they manage to draw fluid out it can drag the herniation down. So it may be a good thing that they haven't managed to.
I do get lumps and swelling at the base of my skull, to me it definitely something muscular like inflammation, at the point where my neck muscles attach to my skull.
One more thing...do you have copies of your CT's and MRI's? Pics and reports? If not I encourage you to DO SO!! It is amazing what can be there that you are not told about. Plus, if you have them then you can submit them to a NS yourself. At the TCI they will review them for you at a nominal fee.
Unfortunately, to get an answer it is a battle and one that you have to keep pursuing!!
Good luck, please let us know how the visit goes!
Carolyn