Neurosurgeon's Appointment today

We made it to NYC for my appointment/consult with the neurosurgeon despite the fact that we are getting yet another snow storm in my area- dumping another 8 + inches over the coming 36 hours.

He spent the better part of 3 hours with my husband and I , examining me, asking questions, and then left to view the cd of the MRI's in his office. He came back a few minutes later and said that the cd wouldn't play on his computer?? not sure that I believe that since the ortho surgeon he referred me to last week is in the same building- but he said that he would be back in 10 minutes- he was going to run over to the Hospital to view the images. Anyway, he was gone for the better part of a half an hour and then returned not looking so happy as he was when he left.

He said that what I suspected is indeed the problem, I have Cauda Equina Syndrome for the 2nd time. He did the vibration and pin prick testing and said that my muscle strength is minimal, my sensory abilities from my hips down are non existant, and my right foot now also has a complete foot drop, so it joins the left in needing an afo.

He said that I need surgery and need it quickly. He also said that it is probably not going to improve things for me, but when I asked what would happen if I decided not to have surgery, how much time would I have before things would worsen even more, he said that I don't have any time- that my canal is as closed off as it can be. He said that there is no way of knowing how long it has been that way and therefore he doesn't expect to see any improvement.

I asked what happens if I choose to do nothing, he said, you can't choose to do nothing because you are out of time.  He said the wrong move can paralyze me.

He told me to take a couple of days, talk it over with my husband, but he handed me a form for anesthesia, it's a questionairre they have you fill out prior to surgery. He wants me to come back to Hospital for Special Surgery to get a CT scan done to see if they will also need to redo the fusion or extend it and he believes they will, he also wants to see the lipoma from L4-S2 to see how involved it is with the canal. He is afraid of a dural tear but said that he has no choice but to attempt to remove it because it is choking off the nerve roots at those levels, as well as crushing the nerves themselves within the canal. I also have to have an ultrasound done to make sure that I don't have phlebitis because of the colors and temperatures of my legs and feet before surgery.

And there was something else but can't remember it now........

Anyway I haven't made up my mind yet. He suggested getting another opinion besides the one from the ortho I saw last week but he said if I do to make sure they understand this is Cauda Equina Syndrome and that I don't have time to wait weeks for an appointment.

I knew this was coming, I've seen far more than my fair share of MRI's and CT scans not to recognize a problem when I see one, and not to recognize what the problem is......still, you hope that you are wrong.

Sandi

 

I had read this earlier and was shocked at the news and severity of this condition.

I too am sorry that you have to make a hard decision like this, and the haste needed in doing so. Bless you Sandi, as you travel down this difficult and long road.


We will be waiting here with support for you.


Take care,

SE

I tried to answer this post earlier from my lap top and for some reason, I would get it half typed and it would disappear.....

Anyway, now that I am back to the desktop. I will try again.

Thank you Chutz, SC and Mom,

You are right Chutz, this is a surgical emergency, which removes any elective part of it. The longer the cord is compressed, the less likely that there will be any improvement post op. The big difference for me, is that I already have had CES at the level below this new one , so all that was effected before is not as likely to show any improvement. What is really the big concern is the new area and the dermatomes and myotomes for those areas, as well as worsening the areas below it. The true recommendation is to decompress the spinal nerves within 24 hours of onset of symptoms for the best results.

SE, thank you for the prayers and blessings, all of you. It is a difficult decision, no two ways about it. I wish that it was one that I didn't have to make honestly. It seems that I am darned if I do and darned if I don't. If I don't do anything and hope that I don't move wrong and wind up paralyzing myself, I may darn myself anyway due to the already apparent damage at the new level and worsening of the old stuff....and if I do the surgery, I have to hope that there is no dural tear and they can remove most of the lipoma and decompress the cord without damaging anything further, only it most likely won't improve anything....

Neither one seems to offer me much in the way of hope of improving anything......

Thanks Tina, just your support is more than enough.....we don't always have the answers to make things better, all we can do sometimes is be there.....and you are.

Hugs to you all,

Sandi

 

Hi Dani,
It is late here too Dani.....I need to decide what to do first Dani. That is the problem, while I know that I need to get it done, it is convincing myself to go through yet a third surgery, when the first one caused my first onset of CES to begin with, and in a sense, caused this one too because if they had fixed all of the levels to begin with, I wouldn't find myself having it be so severe now.
I know that you are going through your own version of trying times right now Dani so I know that your plate is plenty full at the moment.
Thank you for thinking of me and offering your prayers.
Sandi

Hi Susie,
Are you okay? Can you get your pump refilled soon? Thank you for thinking of me but you have a lot on your own plate as well. Will your doctor get your meds soon so that he can get your pump filled right away? You can't go without getting it refilled? Is it out completely or are you running low? I am guessing since you are feeling the effects already that you are out?
What about oral meds? Can he at least give you some to help with the withdrawals? I'm so sorry that you are dealing with this Susie.......
Wish that I could do something to help.
Sandi

Hi Susie,
I'm glad that you got your pump refilled today. That's good news. And getting the bolus I'm sure must've helped some, even though it takes some time to work it's way through the spinal fluid and get you some relief.
Did they explain why no one got a phone call? That seems strange unless they hired someone new for the office and the person simply forgot. Anyway, I'm glad that it's all straightened out.
The idea of paralyzing myself scares me too Susie, but so do the other "options'. It seems to me that neither "option" is a good one. Unfortunately, this isn't a simple disc herniation that can get worse, it is the stenosis by itself which can, and the lipoma given it's dimensions which ultimately also can, if I do nothing. Having surgery, and the post op swelling, not taking into account any of the other complications can also cause a third onset of CES , especially at L5-S2 which is also a mess, and in the midst of the lipoma which is pulling on the cord, so even if they remove it, it can still cause CES especially if there is a dural leak....sigh
Too much to think about......I am trying to figure out what I want to do over this weekend. So far, I am not making much in the way of progress and my reading various studies don't seem to be helping me make a decision, one way or another. All it's doing is scaring me further.
Sandi

Thanks Rhaevin,
I hope that I will be able to come to some conclusion, but so far, all I'm doing is finding reasons to avoid making one.
Not a good place to be, that's for sure.
Sandi

Thanks Loretta. I just can't believe this whole thing. Normally, I am a take the bull by the horns, deal with it and get it over with, kind of person......this time it has really knocked me for a loop.
All of the normal "red flags" for CES , especially those after surgery, won't show up on me, so if there is yet a third episode, I won't necessarily know it....because of the damage from the first onset and now the 2nd...
The idea of having surgery to improve something, I understand......but any surgery for this isn't going to "fix" me.....it is only going to remove the compression at L3, and hopefully, most if not all of the lipoma assuming it can be removed relatively safely...but I am not going to "gain" anything back.....I will still have all of the problems caused by CES, no matter what I do........that's what is making, making this decision so difficult.
Sandi

Hi 9 years,
It is just so difficult to make a decison based on a negative outcome, either way...usually with surgery, there is some prognosis that the end result will lead to improvement or resolution of a problem......instead for me, there is no prognosis of improvement, just more of the same.....and maybe worse.
Sandi M

Sandi, have had you on my mind the last couple of days, wondering how you are holding up to to all of the stress. Just what you need on top of everything else right now, more stress.

Time wise, do you have a deadline on when you are to get back with the neurosurgeon with your decision?

You had asked about my missed appt for m pum,p refill, what happened is back in thwe winter when our temps dropped below freezing for several days, the pipes all over my drs office frozen and then burst when the thaw came and it flooded the entire place very badly. Her office is a very old small church and there is no telling how old that plumbing is in the place. I am guessing its the original. Anyway, they had to replace sheet rock throughout the building from the floor up, about 3 ft up. The gal that is responsible for calling patients is severely asthamatic and she tried several times to work in all the dust and they had to just send her home, she became very ill. She would pull charts for the nurse the day before and call all of the patients. With her gone, the nurse really did not have time to make the calls to the patients. There was quite a few of us that missed their appt. Of course, it did not help that I put my date in the computer correctly wither, so I am at fault as well on this, Sure taught me a lesson to not depend on that phone call. I do not want to go thru that mess again, I can assure you. It took me a good three days to get straightened back out, my BT meds did nothing either. I am glad they got me in on Friday morning, I do not know what I would have done if I had to wait until Monday. I am sure a trip to ER would have been useless as they have no way to handle these pumps. The good news is I did not have to wait and find out, lol. What was going on me with me was bad enough.

Anyway, I wanted to check in on you and see how you are perking along. Take care.

Hi Susie,
You're right, the stress levels have been astronimical with this. I haven't been able to make a decision, one way or another.
I saw my PM/spinal cord injury physiatrist today - we had an interesting discussion. He asked me if I had seen the surgeon yet and I told him that I saw too and they were in agreement about the need for surgery and the need for it being very soon.
He said that it isn't often that you get two unrelated surgeon's to agree not only in the need for surgery but the type of surgery that needs doing. He asked me if I had booked it yet and I told him no. He wanted to know why and I told him that I keep hoping for another opinion that agrees with me that it doesn't need to happen right now...He kind of laughed and said that he didn't think that that would happen. I told him that I have yet a third appointment with another surgeon tomorrow and he said, do you really think that he is going to say something that the other two didn't? I told him no, but it at least allows me to postpone having to make a decision today......sigh.......

I know that I need to call the surgeon and tell him to set the date...but at the same time, I know that I am going to loose all that I have fought so hard to get back for the last 5 years......and I am going to face another year or more in the same place that I have fought so hard to get back from. I am not looking forward to going to that place again.
He also ordered another afo for the right foot now, since the footdrop has worsened significantly. Ah well, maybe I get matching ones.....I wonder if I can have them decorated this time?
There has to be some light in this mess that I am dealing with. I just haven't found it yet.
I'm glad that you got the pump straightened out. Your doctors office has/had quite a mess to clean up from the sounds of it. Flooding causes such damage to everything.
And the mold that seems to grow out of nowhere is unbelievable. I hope that the nurse is feeling a lot better. I have asthma also, so I know how she feels.
I also rely on those phone calls to remind me about appointments, but I will make sure to get the card after reading about your situation to make sure that I don't get too comfortable. Around here, getting in to see your PM if you miss the appointment can be a nightmare.
Glad you are feeling a little better now.
Sandi

Hi Susie,
Yeah, his saying that kind of took me aback a bit too. The more that I think about it, the more it makes so much sense. I do have an appointment with another surgeon today . I keep hoping that one will agree with me about waiting, but I am doubtful.
I could get a 100 opinions and it doesn't change what three now have said.....the third being my PM doctor who also specializes in spinal cord injury. He is one of only about 500 that are board certified in spinal cord injury and rehabilitation.
Ah well, maybe I won't waste my time or money to go after all.
I also always follow my gut but it is failing me this time.
Sandi

I went and he said the same as the other two surgeons said and my sci/physiatrist also said. He is in total agreement but tried to push me a bit today into consenting to surgery as in the next few days. I tried to reiterate to him that I was told by the other three that while the new areas are a big concern, surgery isn't going to improve things for me, just postpone the inevitable and be another salvage operation other than to remove the lipoma and the untethering of the cord but the rest isn't going to change the CES at all, the new level or the old .
He still tried to push it a bit with me. It made me think that I was more of an interesting case that could be written up in journals , rather than it being about me and what was best for me. What a waste of out of network benefits that was.
Needless to say, he won't be touching me either.