Neurosurgeons and no answers

[Judie P]

Perhaps someone out there can help answer my question.

I am so frustrated!  I guess I have to remember that neurosurgeons only do the surgery and do not respond much afterwards.  I called four days ago just to let them know that I had jolted my neck after being frightened and was in much more pain.  Just wanted to know if I needed an x-ray to make sure that I did not do any damage.  No response as of yet.  Not from him, not from his office.  My other question is "why am I in so much pain still?"  Internet says I am supposed to be out of pain within 2 weeks.  It now has been seven weeks.  I am taking Tylenol like candy.  The only response I have gotten was when I went for my doctor's appointment and he told me not to move my head so much or I would create "halos" on the x-rays.  He put the fear of God in me.  Neck hurts when I walk, sit, stand, but not when I lay down.  Am I supposed to stay in bed 24/7?   I guess so -- and for six months.

AND today the Sjogren's symptoms started.  Dry eyes, dry mouth, dry nose, and dry throat. I know that my cervical surgery is extensive (C2 - C7), but can anyone out there tell me if they had pain after two weeks of surgery?  I cannot even get muscle relaxers from neurosurgeon or my regular doctor.  I would be a lot less stressed if I could know that the pain is normal and I did not screw up my neck with that jolt.

[sixty]

I'm so sorry you're still hurting so much.  I know nothing about what you had surgery for, but I think you need to keep calling the Dr.'s office and get loud!  They need to be responsible for your aftercare.

[meirish]

I am also sorry that you are suffering like this. The one thing that I thought of after reading your post is that you are so fearful of moving your neck. I don't know what kind of rehab you had but I know that if  you don't move your neck much and hold it so still you will almost freeze your muscles in place. If you don't move enough any little movement you do is going to set  up pain or even muscle spasms. We have to continue to move as per rehab and increase our movements.

The other thing is that you may not be able to tolerate a lot of pain. Everyone has a certain pain tolerance. We are all different.  I would call your doc again and talk to his nurse if possible. If you can't reach anyone then call your regular doc and talk to his nurse and tell her what is going on and that you are miserable and need to be seen. 

I had a fusion of C4 C5 about 5 years ago and I have a high pain tolerance so hardly took any tylenol. I also have to tell you (I am a retired registered nurse who has had a fair amount of surgeries) that when neck surgery is done they screw the whole works down. I have a titanium plate and about 5 metal screws in my neck. I told my doc that I almost fell at home prior several week before my post op check up. He told me that it would hurt to fall, but he said that my screws, etc were not going anywhere as they are tight in place.

I saw the scans before and after surgery and he was right. They were really screwed down. You can move your neck some I would think. I think you need to see your surgeon and talk with him. Ask specific questions. You had a lot of issues prior to surgery and I would think that this might result in some pain after surgery just adjusting to moving more. I had post op pain in my arms, etc and other places that were somewhat expected.

I had a disc really pressing on my spinal cord and was in serious condition when I went into surgery. My surgeon said there was no way of predicting what kind of long lasting issues I would have until they showed up after surgery  as I was healing. I had incontinence prior to surgery and I still have incontinence. Much of my other pains are totally gone or at least much less. Occasional pain in neck but I have a couple vertebra that are not in good shape but don't need surgery yet....or maybe ever are I am 80 years old now.

Just to let you know that when one doesn't move muscles at all or very rarely they will tighten up big time and cause lot of spasms, etc. You need to talk about this with your doc. Write down what kind of movements you are avoiding...you may be avoiding way too much. Have  you been putting any warm packs on your neck to help relax these muscles? Check with your doc about this. You are really far into your post op period so lots of healing should have taken place already as you are much younger than me, I believe. I was 75 when I had my fusion.

Also, I don't know how many tylenol you are taking every day but I hope you are keeping track of the number as they can cause issues with kidneys and liver. Usually, the bottle says to watch the amount you take in 24 hours. This has been common knowledge per the internet, magazines and newspapers the past few years.I hope that you are just getting up and walking around a lot. You should be able to turn your head from side to side. The doctor would have told you if you were not to do that and so would the rehab gal. Also, I would expect that you should be able to tip your head down enough to bring chin closer to your chest. Again, rehab and doc would have told you if you couldn't do this. Your neck is going to be very tight if you aren't moving much that is for sure. Please make sure to call your regular doctor at least. I think you will be ok but you need to check this out. Try to relax as just holding yourself stiff in positions will cause muscle pain and spasms. Good luck. meirish

[Judie P]

Hi. So... I had C3 thru C7 decompressed and C2 thru C7 fused.  No getting around it, I have lost 70% of my neck mobility - permanently.for the last two months I have been in a Miami J. neck brace and have another monthly to go -- hopefully no more.  Then another 3 months to bond the bone graft and hardware together to make one bone.  I already have a soft collar (from previous neck pain) in my closet.  My plan is to wear that when the Miami J. comes off.  This way I won't screw up the fusion. 

I have since heard from my regular care team and doctor.  They refilled my Gabapentin and ordered Baclofen for muscle spasms.  I have been on Gabapentin for a couple years now.  I used to take Baclofen for muscle spasms, low dose.  I think the muscle spasms are coming from C1 and T1, as they have had to compensate for the loss of C2 thru C7.

Never heard from the neurosurgeon.  I think I would have only heard that I am not to move my neck AGAIN.  My regular doctor things that it is insane for me to not take anti-inflammatories for one year.  He kept telling me " you have Sjogren's!" 

[meirish]

The neurosurgeons know very little about autoimmune diseases that is for sure. Glad that you know as much as you do about your spine. I believe I had a new disc from someone else. These things are hard to  know unless we are told. The fact that you were ono the gabapentin prior to surgery is certainly something that was missed. I can only think that your surgeon assumed that your primary doc would be taking care of these issues. This is where communication comes in.

Also, some surgeons, for any speciality, are totally engrossed in the surgical part of it. They often don't work with the other issues we have. Sort of like a car mechanic that may only works on transmissions, etc. I don't understand these surgeons way of thinking but it does make us learn that we have to advocate for ourselves. To bad surgeon didn't tell you to have appt with family doc as soon as possible after surgery it would have saved you a lot of grief. People don't usually just stop taking gabapentin. If they are to stop taking it they usually have to taper dose over a length of time. That drug often helps people more than they realize until they stop the drug cold turkey.

Have you even taken Plaquenil or Hydroxychloroquin for your Sjogrens?? Many people think this helps a lot with the aches and pains of autoimmune. Good luck and I am glad you got a quick response from your family doc. Take care. meirish

P.S. Just out of curiosity...do you have to wear a soft brace forever??? One of residents here has all ervical discs fused plus some in her lower back. I don't notice a brace on her at all. She can't move much, very stiff neck and spine, and uses a cane when she walks....probably to help her maintain her balance to prevent falls. She does very well though. Just wondering??  Sorry I forgot to mention earlier that I didn't know the whole story on your surgical procedure prior to my  earlier responses.

[Judie P]

Hi, Merish.  I am hoping that it is on only for another 4 weeks.  If the x-ray shows the rods and screws are putting a hole in the bone graft, it would not only have to keep it longer, but they would probably go in and do the bone graft again.  I got my fingers crossed.

[meirish]

Good luck Girl!!! meirish