Aa
Updaste from neurologists - more surgery
Not surewhat, if anything i'm am really asking. Not particularly angry, frustrated or feeling like I need to vent. But then again, there is something to be said about repression. Really, just an update.
With the dx of MS established and having started Copaxone, I saw my neurologists this past week to discuss the results of a recent nerve conduction study and the cervical , thorasic, and lumbar-sacral portion of the MRI I had done earlier this year. I think I've mentioned this before, but in addition to MS I have another neurological disorder (neurofibromatosis, type 1, or NF1) and degenerative disk disease.
The major problem with NF1 is that tumor-like growths, of various sizes, can grow anywhere in the CNS. It has been known for some time that I have some small ones in, what I am told, are “non-strategic” areas of my brain, and several of various sizes growing along the length of my spinal cord.
The nerve conduction study and MRI showed that neurofibromas causing a particular set of symptoms and subsequent dysfunction are growing on the spinal cord at L5. S1 is “possibly” involved but it is not clear. And the real “kickker” could be others causing problems as well. Just how many are growing in these areas is not always detected by these diagnostic tests. For example, in 2004 I had an L4-L5 lamenectomy and the neurosurgeon removed parts of two neurofibromas that never appeared on the MRI of that time.
Some of the current symptoms I experience, are significant atrophy of muscles in my left leg, numbness and decreased sensation in both legs below my knees, pins/needles in my feet, severe balance problems, urinary incontenence, and chronic pain. According to my neurologists, bulging disks, NF1, spinal stenosis, MS, chronic prostitis (urinary problems) are all contributing factors. In the past 7 years I have broken, rebroken, re-re-broken ribs on 5 occasions, and have broken a wrist, elbow and heel. I'm also on coumadin, which adds a dimension of increased risk from a brain hemmorage if I fall and hit my head.
I know it's sounds kind of silly, but in trying to understand all this (and I really do understand for the most part) but just sometimes my nightmares are laden with...Condition A is the cause of symptoms X, Y, Z, independent of condition B and C. But condition B could be causing symptoms X, Y, Z, independent of conditions A and C. And condition C could be causing symptoms independent of conditions A and B. But possibly, conditions A, B, and C could only be a prelude to a previously unknown medical conditions D and E but that would mean condition G has to be sitting in the background or A and B, but not C & F, but C and A only in thosese instances where B & G is not influenced by the full moon. CAN SOMEBODY SEND ME SOME XANAX PLEASE LOL
What does this all mean. More surgery to remove the neurofibromas. But just finding a neurosurgeon is not who specializes is not easy. Neurofibromas tend to hold fast to nerves and it takes exceptional skill and hands. I have one lead in the area I live. My neuro's said they are not aware of anyone in New York, but I will follow up anyway. They told me that they will look at a larger city like Boston or look into Hopkins. Ideally that would be great but there is a problem with insurance. Even though I have very good health insurance, it can be costly if you get care out of your area. Even at a 20% cost, it would still be difficult. Thanks for listening. Will keep posted.
With the dx of MS established and having started Copaxone, I saw my neurologists this past week to discuss the results of a recent nerve conduction study and the cervical , thorasic, and lumbar-sacral portion of the MRI I had done earlier this year. I think I've mentioned this before, but in addition to MS I have another neurological disorder (neurofibromatosis, type 1, or NF1) and degenerative disk disease.
The major problem with NF1 is that tumor-like growths, of various sizes, can grow anywhere in the CNS. It has been known for some time that I have some small ones in, what I am told, are “non-strategic” areas of my brain, and several of various sizes growing along the length of my spinal cord.
The nerve conduction study and MRI showed that neurofibromas causing a particular set of symptoms and subsequent dysfunction are growing on the spinal cord at L5. S1 is “possibly” involved but it is not clear. And the real “kickker” could be others causing problems as well. Just how many are growing in these areas is not always detected by these diagnostic tests. For example, in 2004 I had an L4-L5 lamenectomy and the neurosurgeon removed parts of two neurofibromas that never appeared on the MRI of that time.
Some of the current symptoms I experience, are significant atrophy of muscles in my left leg, numbness and decreased sensation in both legs below my knees, pins/needles in my feet, severe balance problems, urinary incontenence, and chronic pain. According to my neurologists, bulging disks, NF1, spinal stenosis, MS, chronic prostitis (urinary problems) are all contributing factors. In the past 7 years I have broken, rebroken, re-re-broken ribs on 5 occasions, and have broken a wrist, elbow and heel. I'm also on coumadin, which adds a dimension of increased risk from a brain hemmorage if I fall and hit my head.
I know it's sounds kind of silly, but in trying to understand all this (and I really do understand for the most part) but just sometimes my nightmares are laden with...Condition A is the cause of symptoms X, Y, Z, independent of condition B and C. But condition B could be causing symptoms X, Y, Z, independent of conditions A and C. And condition C could be causing symptoms independent of conditions A and B. But possibly, conditions A, B, and C could only be a prelude to a previously unknown medical conditions D and E but that would mean condition G has to be sitting in the background or A and B, but not C & F, but C and A only in thosese instances where B & G is not influenced by the full moon. CAN SOMEBODY SEND ME SOME XANAX PLEASE LOL
What does this all mean. More surgery to remove the neurofibromas. But just finding a neurosurgeon is not who specializes is not easy. Neurofibromas tend to hold fast to nerves and it takes exceptional skill and hands. I have one lead in the area I live. My neuro's said they are not aware of anyone in New York, but I will follow up anyway. They told me that they will look at a larger city like Boston or look into Hopkins. Ideally that would be great but there is a problem with insurance. Even though I have very good health insurance, it can be costly if you get care out of your area. Even at a 20% cost, it would still be difficult. Thanks for listening. Will keep posted.
i'm still amazed at the many people with MS who need spine surgery have no problem with doctors bringing up the scenario.
the VA for instance, "claims" no surgery on spine (neck or lumbar) due to risks of MS flares... so my neck and lower back keep getting a bit worse.
non-VA doctors, such as yours and others i see, have no problem with surgery when/where warranted and never used the MS flare as an excuse to not do it.
xanax? you may require more than that. i think the planet pluto has some special moon dust that can help you out. nothing man made is going to do , i'm afraid. LOL
yeah, that logic maze you posted has made me dizzy so i have to go lay down. you've found perhaps your own version of the "prisoners' dilemma" ?
the VA for instance, "claims" no surgery on spine (neck or lumbar) due to risks of MS flares... so my neck and lower back keep getting a bit worse.
non-VA doctors, such as yours and others i see, have no problem with surgery when/where warranted and never used the MS flare as an excuse to not do it.
xanax? you may require more than that. i think the planet pluto has some special moon dust that can help you out. nothing man made is going to do , i'm afraid. LOL
yeah, that logic maze you posted has made me dizzy so i have to go lay down. you've found perhaps your own version of the "prisoners' dilemma" ?
COMMUNITY LEADER
Gulp! I hate multiple choice questions, so i'll go with the obsurd and blame it ALL on full moon influences, have you considered the influence of venus? Hmmm just popping down the road to get you a truck load of Xanax!!
What a debarcle, no answers here but does your head rotate 360d when you pass a church? Kidding aside, i feel for you and totally understand the confusion, i'm gob smacked at what your dealing with, so sending huge gentle cyber hugs!!!
Take care.
JJ
What a debarcle, no answers here but does your head rotate 360d when you pass a church? Kidding aside, i feel for you and totally understand the confusion, i'm gob smacked at what your dealing with, so sending huge gentle cyber hugs!!!
Take care.
JJ
Wow. I know NOTHING about the things you discussed here, but just wanted to let you know that I heard you. And, I feel for you. I understand your need to try and figure this all out. I would probably be doing the same thing you are.
I truly hope that you find the perfect neurosurgeon. That alone sounds like the biggest issue at this time.
Please keep us updated on your progress through this trying time for you. My thoughts and prayers are with you.
Now, I need to go re-read the ABCD thing again a few more times because it really tripped me out and messed with my head. I can only imagine what it is doing to yours.
Hugs from CA, my friend,
Addi
Oh, my. I read your entire post and believe that this would make an excellent logic problem on a college entrance exam! :-)
Often we just need to go into output mode and put these thoughts down on paper or the virtual paper of a computer screen.
And remember, by sharing all of this, we continue to learn more from each other. You never know when something you have written will strike a familiar cord with someone else and their situation.
This is timely reminder to all of us that even though we have this MiSerable disease, that doesn't make us exempt from other woes.
Hopefully you will find a neurosurgeon with the confidence and skills to tackle these neurofibromas and your insurance will play nice and let you have it done, no matter where you have to head.
be well,
Lulu
Often we just need to go into output mode and put these thoughts down on paper or the virtual paper of a computer screen.
And remember, by sharing all of this, we continue to learn more from each other. You never know when something you have written will strike a familiar cord with someone else and their situation.
This is timely reminder to all of us that even though we have this MiSerable disease, that doesn't make us exempt from other woes.
Hopefully you will find a neurosurgeon with the confidence and skills to tackle these neurofibromas and your insurance will play nice and let you have it done, no matter where you have to head.
be well,
Lulu
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