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
With my kids I"ll get even ,when I'm on the steroids they make me meaner than a junk yard dog,maybe thats why they refused to picked them up.
LP tomorrow morning,pre-registered over the phone and then the tech stated they were not gonna do it with me being mildly sadated and I told him to cancel it then.I have to much scare tissue and expeience way to much lumbar pain to have this done with out sedation,he says well they'll hold you down.I don't think so.
I called my neuro and it states right on the script with sedation.Idiots!!!!!!!!!!
Hospital stay isn't an option right now,not with a 13 and a 16 year old and home.If my neuro decides on monday if I see no improvement in my vision he'll order solu-medrol in home.least this way I have some control over them.
Quix,fatigue is the worst part of this dang disease, even though I take the provigil I still get fatigued.
Oh, my wishes after surgery is to have a buff hottie male nurse in a lime green speedo.I know wishfull thinking.
Quix, what is your take on the champs study? Dealing with neuritis.My neuro tossed around the idea that a virus has caused this.I tried reading up on it some but it confused me or it could be that my vision stinks.I had a vep in 1998 right eye 130,2004, right eye 130, 2006 right eye 130.Last week when I had the vep right eye 130 never has changed since 1998 and it gives me minimal trouble unless heat is a factor.The left eye has always been normal.Now 147.I have had on going left eye pain since august,just had recent mri's and lesions didn't show.But neuro-opthomologist stated that the outside of each optical nerves were very pale and it may not show on a t1 machine.
Now if I had a virus wouldn't one know?Not even a cold to persay for sometime.If a vep comes back abnormal,does it stay abnormal if damage has occurred?
Thanks to all,your wonderful,probably won't be back until Monday.
Your in my hearts and prayers.
T
LP tomorrow morning,pre-registered over the phone and then the tech stated they were not gonna do it with me being mildly sadated and I told him to cancel it then.I have to much scare tissue and expeience way to much lumbar pain to have this done with out sedation,he says well they'll hold you down.I don't think so.
I called my neuro and it states right on the script with sedation.Idiots!!!!!!!!!!
Hospital stay isn't an option right now,not with a 13 and a 16 year old and home.If my neuro decides on monday if I see no improvement in my vision he'll order solu-medrol in home.least this way I have some control over them.
Quix,fatigue is the worst part of this dang disease, even though I take the provigil I still get fatigued.
Oh, my wishes after surgery is to have a buff hottie male nurse in a lime green speedo.I know wishfull thinking.
Quix, what is your take on the champs study? Dealing with neuritis.My neuro tossed around the idea that a virus has caused this.I tried reading up on it some but it confused me or it could be that my vision stinks.I had a vep in 1998 right eye 130,2004, right eye 130, 2006 right eye 130.Last week when I had the vep right eye 130 never has changed since 1998 and it gives me minimal trouble unless heat is a factor.The left eye has always been normal.Now 147.I have had on going left eye pain since august,just had recent mri's and lesions didn't show.But neuro-opthomologist stated that the outside of each optical nerves were very pale and it may not show on a t1 machine.
Now if I had a virus wouldn't one know?Not even a cold to persay for sometime.If a vep comes back abnormal,does it stay abnormal if damage has occurred?
Thanks to all,your wonderful,probably won't be back until Monday.
Your in my hearts and prayers.
T
Dear, dear Lynn, You are consistently our bastion of strength and humor through suffering. It makes sense that the car accident could have casued the puncture - which then caused the arachnoiditis. The arachnoid membrane is one of the coverings of the brain and spinal cord. It carries most of the blood vessels whcih spread out "like a spider's legs" hence the name. I knew that surgery, an LP, or any other type of puncture could casue it, but I didn't know they couldn't cure it. I pray that once they close it, that they can get a handle on the inflammation. Then maybe you'll get some relief. It does explain some of the severe pain and spasms you've been getting.
I have been thinking about you and what a wonderful friend you've been since we first met way last spring. I pray the best, quickest and most painless LP and surgery for you and the hottest of hottie docs in Recovery. I agree that you should let and make the docs take very good care of you and insist that they relieve your pain. I hurt for you and the reaction of your kids. Remember, grandchildren are your reward for letting your teenagers live!
You are very special to me and to all of us. We're on your side and all thinking about you. You even consoled me when I got on and bitched and moaned about being tired. Now I see that you did this after getting this totally undeserved news. There should be a No-Call List for people who already have enough bad news and enough stuff to deal with. I think you should take a "pass" on the next several offers of complications to your life.
Bless you for taking a friend through a dark time.
All my love, Quix
I have been thinking about you and what a wonderful friend you've been since we first met way last spring. I pray the best, quickest and most painless LP and surgery for you and the hottest of hottie docs in Recovery. I agree that you should let and make the docs take very good care of you and insist that they relieve your pain. I hurt for you and the reaction of your kids. Remember, grandchildren are your reward for letting your teenagers live!
You are very special to me and to all of us. We're on your side and all thinking about you. You even consoled me when I got on and bitched and moaned about being tired. Now I see that you did this after getting this totally undeserved news. There should be a No-Call List for people who already have enough bad news and enough stuff to deal with. I think you should take a "pass" on the next several offers of complications to your life.
Bless you for taking a friend through a dark time.
All my love, Quix
T...I wish I could jump through the screen, grab you and hold you and take in your pain and tears and then I would soundly kick the kids butts!
Maybe you should consider the hospital time just to get the rest you obviously need and at least you would get the care you also obviously need. In my history, when I am suffering from the pain of the Raeder's Syndrome and I have to go for out-patient solu-medrol treatment, I would do anything to have a bed to be in where someone else would look after me and I would have nothing to worry about. However, it won't happen here in my province unless there is something life threatening happening due to the fact that there are NO beds.
Please listen carefully to your doctor if he does offer you extra care because the offer might not come again and I think that it would be extremely good for you!
Best of luck for you and I will be thinking of you.
Here's hoping that your LP on Friday goes without a hitch and you will soon be on the road to recovery (but don't pass up an opportunity to get some well deserved rest!).
Rena705
Maybe you should consider the hospital time just to get the rest you obviously need and at least you would get the care you also obviously need. In my history, when I am suffering from the pain of the Raeder's Syndrome and I have to go for out-patient solu-medrol treatment, I would do anything to have a bed to be in where someone else would look after me and I would have nothing to worry about. However, it won't happen here in my province unless there is something life threatening happening due to the fact that there are NO beds.
Please listen carefully to your doctor if he does offer you extra care because the offer might not come again and I think that it would be extremely good for you!
Best of luck for you and I will be thinking of you.
Here's hoping that your LP on Friday goes without a hitch and you will soon be on the road to recovery (but don't pass up an opportunity to get some well deserved rest!).
Rena705
I'm sorry your eye has given you more trouble T. That's the last thing you need right now. At least your neuro is on the ball and doing all he can to help you. Maybe he is right in admitting you, the rest would be the best thing for you right now.
I can't believe your kids wouldn't pick up your prescription. You have done so much for them and ask so little in return. Hopefully they have realized what they have done and are sorry for it.
Your neuro is so right that a healthy person would have probably gone over the edge with the news that you have gotten. I myself am in awe of how you handle everything, but having said that, you need to look after yourself now. Don't worry about others or anything else other than just doing what you need to do to feel better.
I hope the ON lets off soon and that you feel better. I pray that everything goes well with LP on Friday.
Sending lots of gentle (((((HUGS))))) your way.
Praying for you daily
Moki
I can't believe your kids wouldn't pick up your prescription. You have done so much for them and ask so little in return. Hopefully they have realized what they have done and are sorry for it.
Your neuro is so right that a healthy person would have probably gone over the edge with the news that you have gotten. I myself am in awe of how you handle everything, but having said that, you need to look after yourself now. Don't worry about others or anything else other than just doing what you need to do to feel better.
I hope the ON lets off soon and that you feel better. I pray that everything goes well with LP on Friday.
Sending lots of gentle (((((HUGS))))) your way.
Praying for you daily
Moki
Thanks for the prayers,little rough today.Had to call neuro this afternoon,last night my left eye started giving me trouble,this morning very little vison and terrible pain and had difficulty walking.I truelly beleive its stress related.DR called in prednisone,but my kids refused to pick it up,that was heart braking,especially all I do for them.But I'm done they can help themselves from now on.My neuro made me promise that regardless of how I feel I'll get the LP done on friday,He said if I was worse tomorrow he'd admitt me to the hospital for 5 days for solu-medrol , some physical therapy and just plain old rest.He stated that the news I received would send a healthy person over the edge.
Yorkie,
I hope that your test are scheduled soon,especially before the first of the year.Dr.K is a special person.
I couldn't take ultram.I had the same results.Now valium I can take.
Glad you got your eye exam done.
My friend is doing really good , she's been over for the last 2 days and we've done lots of talking,I told her if someone doesn't have MS they aren't gonna understand and its easy for family members to not understand.
Gonna end this as I'm dealing with terrible ON today .
To everyone your in my hearts and prayers
T
Yorkie,
I hope that your test are scheduled soon,especially before the first of the year.Dr.K is a special person.
I couldn't take ultram.I had the same results.Now valium I can take.
Glad you got your eye exam done.
My friend is doing really good , she's been over for the last 2 days and we've done lots of talking,I told her if someone doesn't have MS they aren't gonna understand and its easy for family members to not understand.
Gonna end this as I'm dealing with terrible ON today .
To everyone your in my hearts and prayers
T
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