Aa
In need of hugs and prayers
Its been an awful day to say the least.
Some have ask will I ever get a break.I quess I can answer that NO!!!!
After crying all afternoon,I finally gained my composure for my kids.
Had my follow up with my neuro,who I must say has a very caring and compassionate side,many neuro's can learn from him.
Test results are back---VEP left eye 147 , right eye 130, bilateral optical neuritis,never showed on recent MRI;s.Neuro was puzzled for sure.But admitted MRI's don't detect all.
The BAER-- slightly abnormal left ear with mild sensural hearing loss right ear and moderate hearing loss left ear.Recommends hearing aids.
Now for the real shocker,I knew my neuro had suspected arachnoiditis,well its there.But the real kicker is he told me the arachnoiditis is caused by a pin hole tear in the spinal canal leacking spinal fluid into the thecal sac.Which has done a great job containing it.He thinks it was caused when I was rear ended in June causing the screws in my back to shift and hit the spinal canal.The only way to repair this is to surgically do it.
I completely lost it,I told him no,I would't go through that again and he explained that it had to be done,if that ruptures theres severe medical consequense.He's already been in touch with my neurosurgeon,I had blood work done today,basic panel and he was checking my clotting factor.
I have to be back in his office tomorrow morning 7:30 for a EMG/NCS and friday ,I have to be at the hospital for a spinal tap he's gonna run a MS panal and to make sure theres not an infection in the spinal fluid.He admitted that he wasn't comfortable doing it,it has to be done at the L2-L3 usually done lower.He wants it done at the hospital under florascopic with me sedated.YEA!!!Thats a plus.
He was very caring, as I sat there and cried like a fool,I told him of my fears and he promised me he would see me through the surgery and he would be assisting my neurosurgeon.he said my concerns were very valid and he would controll all aspects of the pain.I told him in the past that my surgeons dismissed the pain after the surgeries and I refuse to go through that again.
He ask me if I had faith in him and my surgeon and I said yes.Usually ya don't get to see this side of a DR.The human side. He hugged me ,made sure I had a driver ,ask if I needed anything for depression or to get through the news,I told him no,but I also told him not to wear a tie tomorrow during the EMG/NCS ,he ask why and I told him I'd choke him with it if he inflicked any pain on me during that test.I told him that would get me through the night.
He said I was stuck with him,with the MS and many Drs are not familiar with arachnoiditis,an incurable nerve disease.But it can be controlled with solu-medrol when it flairs up.He said now its trying to learn what is what during a flair up.
Its been a lot to absorb,thought I was done with test.
Its been a long year,but I'm sure 2008 will be better,I now know what I'm facing.It may be a long journey yet,but that soon will pass.
Sorry to ramble
T
Some have ask will I ever get a break.I quess I can answer that NO!!!!
After crying all afternoon,I finally gained my composure for my kids.
Had my follow up with my neuro,who I must say has a very caring and compassionate side,many neuro's can learn from him.
Test results are back---VEP left eye 147 , right eye 130, bilateral optical neuritis,never showed on recent MRI;s.Neuro was puzzled for sure.But admitted MRI's don't detect all.
The BAER-- slightly abnormal left ear with mild sensural hearing loss right ear and moderate hearing loss left ear.Recommends hearing aids.
Now for the real shocker,I knew my neuro had suspected arachnoiditis,well its there.But the real kicker is he told me the arachnoiditis is caused by a pin hole tear in the spinal canal leacking spinal fluid into the thecal sac.Which has done a great job containing it.He thinks it was caused when I was rear ended in June causing the screws in my back to shift and hit the spinal canal.The only way to repair this is to surgically do it.
I completely lost it,I told him no,I would't go through that again and he explained that it had to be done,if that ruptures theres severe medical consequense.He's already been in touch with my neurosurgeon,I had blood work done today,basic panel and he was checking my clotting factor.
I have to be back in his office tomorrow morning 7:30 for a EMG/NCS and friday ,I have to be at the hospital for a spinal tap he's gonna run a MS panal and to make sure theres not an infection in the spinal fluid.He admitted that he wasn't comfortable doing it,it has to be done at the L2-L3 usually done lower.He wants it done at the hospital under florascopic with me sedated.YEA!!!Thats a plus.
He was very caring, as I sat there and cried like a fool,I told him of my fears and he promised me he would see me through the surgery and he would be assisting my neurosurgeon.he said my concerns were very valid and he would controll all aspects of the pain.I told him in the past that my surgeons dismissed the pain after the surgeries and I refuse to go through that again.
He ask me if I had faith in him and my surgeon and I said yes.Usually ya don't get to see this side of a DR.The human side. He hugged me ,made sure I had a driver ,ask if I needed anything for depression or to get through the news,I told him no,but I also told him not to wear a tie tomorrow during the EMG/NCS ,he ask why and I told him I'd choke him with it if he inflicked any pain on me during that test.I told him that would get me through the night.
He said I was stuck with him,with the MS and many Drs are not familiar with arachnoiditis,an incurable nerve disease.But it can be controlled with solu-medrol when it flairs up.He said now its trying to learn what is what during a flair up.
Its been a lot to absorb,thought I was done with test.
Its been a long year,but I'm sure 2008 will be better,I now know what I'm facing.It may be a long journey yet,but that soon will pass.
Sorry to ramble
T
Gotta keep my sense of humor,my neuro would think I was sick or something if I didn't have a wise crack or something off the wall to say.It keeps him on his toes.His clothes didn't match today either.I keep telling him I'm gonna buy him granimals the little kid clothes so he can match the little tigers to his shirt and pants.
Oh,I have had days I have had felt sorry for myself,but then I realize I don't want anyone else to feeling sorry for me so I pull it together.
Ya,know if life gives ya a lump of coal it eventually turns into a diamond.Darn I should have one heck of a huge clear rock by now.
My Neuro is great,he can be over bearing and egotistic but he is good and caring.
I keep moving cause I need to do it for me,days are a struggle and I get honked off when I don't get accomplished what I need to but tomorrow is a new day.
Why earth I heard Mars is pretty this time a year.
On a serious note thanks for the hugs
T
Oh,I have had days I have had felt sorry for myself,but then I realize I don't want anyone else to feeling sorry for me so I pull it together.
Ya,know if life gives ya a lump of coal it eventually turns into a diamond.Darn I should have one heck of a huge clear rock by now.
My Neuro is great,he can be over bearing and egotistic but he is good and caring.
I keep moving cause I need to do it for me,days are a struggle and I get honked off when I don't get accomplished what I need to but tomorrow is a new day.
Why earth I heard Mars is pretty this time a year.
On a serious note thanks for the hugs
T
I admire your strength T-lynn as you have managed to go through this he** with the tears and all and you still have a sense of humor! You know, as I was reading your first post all I kept thinking was how some of us think we have it really rough and tend to feel sorry for ourselves, which there is absolutely nothing wrong with! However, it sure brings us lucky people back to the planet earth when we hear a story like yours and how you are dealing with it because you HAVE TO! I agree that it is a big boost if you can find a physician that you can work with and I am so happy for you as it sounds as though you have! I wish you the best of luck and all my hugs are with you right now cause you seem to deserve them the most! Please keep us all in mind as you go through this because you know we will be there for you whenever you need us.
Take Care!
Rena705
Take Care!
Rena705
Your an awesome group,love ya all.
Had the EMG/NCS,not that bad,he's not as gentle as my electro muscular DR.But I'll take good looking honey anyday. He came in with a tie,but he remembered what I had told him yesterday so he took it off,darn.No myopathy or peripherial nerve damage.But the nerves in the spine are not sending messages to the muscles ,therefore causing them to constantly misfire and cause the spasms and so forth.The right ankle doesn't move at all,the DR had to move it,to do part of the test.The right leg started spazzing and he had to hold it down.I didn't know he had inserted the needle.
We had a 3 way confrence today with my neuro surgeon.I got a good laugh,both wonderful Drs,but like little boys on a play ground.I got to ask lots of questions and they each had their opinions,which mostly was agreeable.I went informed as usual.
I have the lumbar puncture friday,they are doing a new MS panel then the neuro surgeon wants other test ran with the fluid also.
I did a lot of soul searching and reflecting on the past year and the things I was able to get done,go and do definately out weighs the diseases.
Arachnoiditis still makes me chucle,when I think of it ,it makes me feel like I have a bug up my butt!!!
The support from all of you is over whelming and deeply appreciated.
Its gonna be a rough road a head,but I have great faith in my Drs.I know what has caused the rapid deteriation of my legs.I know why my eyes go wonky.The hearing I'm putting off for now,this way I can tune out my children.
I have a fantastic team of Drs.and thats worth it all.
Gonna go lay down for a while the emg pokes are starting to hurt,and my eyes are all over the place.Then I'm gonna repair my cracked dry wall from my home invader.I gotta keep moving,it would be to easy just to lay down and I refuse to go to any dark place in my mind.Plus I gotta keep my sense of humor going,gotta keep everyone on there toes!!!!!!!!!!!!!!!!!!!
Thank you for the hugs,the prayers and the tears.I got to cry my tears yesterday and now its time to move on in a possitive direction.I'll be back at the gym tomorrow,just limited on what I can do now.
Zilla, there is a prize,I get the handsome Dr that has a human side(lol) and if they can release some of the pressure off the nerves,remove the fluid sack,the AA(arachnoiditis) maybe manageable and slowed down.That will be worth it!!!!!!!!!!!
Blessings to all of you
T
Had the EMG/NCS,not that bad,he's not as gentle as my electro muscular DR.But I'll take good looking honey anyday. He came in with a tie,but he remembered what I had told him yesterday so he took it off,darn.No myopathy or peripherial nerve damage.But the nerves in the spine are not sending messages to the muscles ,therefore causing them to constantly misfire and cause the spasms and so forth.The right ankle doesn't move at all,the DR had to move it,to do part of the test.The right leg started spazzing and he had to hold it down.I didn't know he had inserted the needle.
We had a 3 way confrence today with my neuro surgeon.I got a good laugh,both wonderful Drs,but like little boys on a play ground.I got to ask lots of questions and they each had their opinions,which mostly was agreeable.I went informed as usual.
I have the lumbar puncture friday,they are doing a new MS panel then the neuro surgeon wants other test ran with the fluid also.
I did a lot of soul searching and reflecting on the past year and the things I was able to get done,go and do definately out weighs the diseases.
Arachnoiditis still makes me chucle,when I think of it ,it makes me feel like I have a bug up my butt!!!
The support from all of you is over whelming and deeply appreciated.
Its gonna be a rough road a head,but I have great faith in my Drs.I know what has caused the rapid deteriation of my legs.I know why my eyes go wonky.The hearing I'm putting off for now,this way I can tune out my children.
I have a fantastic team of Drs.and thats worth it all.
Gonna go lay down for a while the emg pokes are starting to hurt,and my eyes are all over the place.Then I'm gonna repair my cracked dry wall from my home invader.I gotta keep moving,it would be to easy just to lay down and I refuse to go to any dark place in my mind.Plus I gotta keep my sense of humor going,gotta keep everyone on there toes!!!!!!!!!!!!!!!!!!!
Thank you for the hugs,the prayers and the tears.I got to cry my tears yesterday and now its time to move on in a possitive direction.I'll be back at the gym tomorrow,just limited on what I can do now.
Zilla, there is a prize,I get the handsome Dr that has a human side(lol) and if they can release some of the pressure off the nerves,remove the fluid sack,the AA(arachnoiditis) maybe manageable and slowed down.That will be worth it!!!!!!!!!!!
Blessings to all of you
T
Hi! My eyes are crying for you as I am writing this. What an awful year you have been through... Let us know when you will be having your surgery and I am sure that there will be many people praying and lighting their candles for you.
You may not want to hear this, but, I am so glad that your doctor discovered your problem. Of course, I certainly wish that you did not have the problem. But, I am happy that they have figured it out and are being proactive about it. I can somewhat understand as I had been going through the same possibility with my spinal cord. It is so frightening to say the least. One hospital's neurorad feels that there is now a syrinx and the other hospital's neurorad says there is not. My last neuro would not discuss my MRIs or order any more and just told me that I knew too much for my own good. But, your neuro is so right. You need the repair to prevent further infection and destruction to your spinal cord. Just the problems that come with the tear can cause so many problems and pain. I can only pray that your some of your symptons abate after the surgery and that you finally get some truly natural pain relief after you are healed. Remember to try to bundle your worries up and send them to God. And you can continue to lean on us for added support, deary. I am sure I speak for many when I say that you are indeed in many of our prayers even today. Hang tight. You are one tough lady and you CAN get through this.
Love,
Torey
You may not want to hear this, but, I am so glad that your doctor discovered your problem. Of course, I certainly wish that you did not have the problem. But, I am happy that they have figured it out and are being proactive about it. I can somewhat understand as I had been going through the same possibility with my spinal cord. It is so frightening to say the least. One hospital's neurorad feels that there is now a syrinx and the other hospital's neurorad says there is not. My last neuro would not discuss my MRIs or order any more and just told me that I knew too much for my own good. But, your neuro is so right. You need the repair to prevent further infection and destruction to your spinal cord. Just the problems that come with the tear can cause so many problems and pain. I can only pray that your some of your symptons abate after the surgery and that you finally get some truly natural pain relief after you are healed. Remember to try to bundle your worries up and send them to God. And you can continue to lean on us for added support, deary. I am sure I speak for many when I say that you are indeed in many of our prayers even today. Hang tight. You are one tough lady and you CAN get through this.
Love,
Torey
Hi babes so sorry to hear your bad news, how much can one girl tke you sure are going through it , I will be thinking of you every step of the way as will every one else . You need only look at the postings to see that . Agood cry is sometimes the answer to let out those emotions and i would cry too instead today i cried with you . Keep up that spirit you show so much of and i will be praying for you to get back on that road to recovery. Lots of big cuddles keeo in touch
Love jules
Love jules
Well right now you should hopefully be finishing this mornings tests and hopefully your Super Neuro was able to get you through it as relatively comfortable as was possible. He sounds like a wonderful human being and a gift from God to you!!
I must say that your strength truly amazes me!! I cannot even fathom what you are going through right now trying to digest all of this. I wish like everyone else here that I could take some of this pain and struggle for you, even just for a month so you could be comfortable.
I will be thinking of you and looking for an update when you are upt to it. I love you and will be praying for you!!! ((((HUGS))))
Kristin
I must say that your strength truly amazes me!! I cannot even fathom what you are going through right now trying to digest all of this. I wish like everyone else here that I could take some of this pain and struggle for you, even just for a month so you could be comfortable.
I will be thinking of you and looking for an update when you are upt to it. I love you and will be praying for you!!! ((((HUGS))))
Kristin
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