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Cervical Spinal Stenosis Question
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stubbornperson posted:
During medical testing because I was falling (A LOT) the doctors have diagnosed me with Cervical Spinal Stenosis with severe cord involvement. I have had 2 opinions and both recommended ACDF surgery. Both doctors have said they have no idea if this would help the falling.

Since I fell recently and am still recovering from a broken shoulder, 1 doctor recommended PT to build up my back as well as continuing with my shoulder PT. The other recommended surgery ASAP. I am going with the doctor that recommended PT before surgery.

I am not in pain. So my question is, does anyone have any insight or opinions on having the surgery before I have pain? I'm really NOT well versed medically and I don't understand why you would have surgery when there is no pain.

Thanks in advance.
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Debsbears responded:
Yes I have been there done that. Please make sure your doctor is a Neurosurgeon first and fore most. Ask for a hard neck brace to see if this will stop your falling. Depending on how many cervical vertebrae they are looking at doing it is not a walk in the park (my opinion).

I was passing out just drinking water- I never had pain - had MRI's done and found out I was crushing my cervical spinal cord in 5 places. It was recommended I wear a ridged (hard) neck brace for at least a month first - it there was major changes then I would be a candidate.

Do not go into the surgery without trying this first. I had C3-T2 done all at one time. Painful yes 100x's yes, I was in a rehab place for 2 months.

Every case is different - please check all options first. Deb
 
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stubbornperson replied to Debsbears's response:
Thank you so much for the information. I only have a problem (so far) with C3 & C4. I had not thought of a hard neck brace. It definitely sounds like a good thing to try before surgery.

How are you doing now? Did the surgery help? How is the pain now, especially considering you didn't have paints begin with?

Thank you for writing. I really need all the information I can get.
 
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Debsbears replied to stubbornperson's response:
Hi since you are having only 2 vertebrae done maybe it isn't a big problem but still I would try the ridged or hard neck brace NOT the soft collar one that will not work at all for this. The hard brace will give you an idea if the surgery will work - because the brace should help in controlling the current problems you are having.

My initial surgery was in June 2011, The pain level was off the charts 20 I was on IV pain meds for 2 weeks then pain pills for a month after each surgery and like I said earlier went to rehab for 2 months, I had to wear the same brace for about a total of 6 months before I could go without it - but you also have to bare in mind I had 7 vertebrae done all at the same time. I could not hold me head up by myself at all.

My last surgery was Sept. 2012 to remove all the hardware because my body didn't like it in there and caused a host of pain. I was 100% fused. Since the hardware has been removed the only "pain" I have is being caused by my muscles, I have a 10" cut from the base of my head to the T-3 level of the spine.

I am not on pain meds but do go in for trigger point injections 3 times a year and now have to take a muscle relaxer 2 times a day. I have 0 movement in my neck, but I heard with C3-C4 fusions movement is not limited.

I almost forgot to answer your question did it help? Yes, I am no longer passing out drinking a glass of water. If I had to do it all over again I would - I had an excellent Neurosurgeon.

I posted what I know based on my situation - everyone is different - how they respond can also be different. I will answer to the best of my ability that way you don't have to feel like you are alone.
 
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stubbornperson replied to Debsbears's response:
Thank you so much. Feeling alone & with only doctors information & opinions was the worst!

I'm glad you are feeling better & the original symptom was helped.

Ian going to continue with the PT & get the neck brace on my nex vistsin 3 months. I refuse to hurry into this although the doctors would like me to have the surgery now.

The neck brace is an awesome idea because it would give me an idea of the surgery would help. That is my 1 of my fears. Going through surgery & not being any better after.

Please stay in touch & keep me posted on what's going on with you. 7 vertebrae is a lot. I'm just getting started & you have been aGreat help already.
 
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Debsbears replied to stubbornperson's response:
You are welcome - glad I can be of help. I re-read all of this and I want to make sure you are seeing a Neurosurgeon? An orthopedic doc usually tell the patients do surgery now - as a Neurosurgeon typically tries other options first.

If your appt. isn't for 3 mos. can you see if you can get in sooner to discus the neck brace? PT is good first as it strengthens the back muscles.
 
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stubbornperson replied to Debsbears's response:
I am seeing a Neurosurgeon and I have left a message asking about the hard neck brace. They are pretty good about getting back to me. I am hoping they can prescribe it without an appointment. Then on my next 1 we can discuss how PT and the neck brace are doing.

I did see an Orthopedic surgeon and was not surprised he wanted to do surgery ASAP. Neurosurgeon wants surgery only if and when I decide. He has a variety of options to try first.

What are the injections you are getting? I haven't heard about that.
Thanks again!
 
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Debsbears replied to stubbornperson's response:
Sorry to say this but the hard brace does come in different sizes, there is also adjustments on it so your neck can be positioned right in it so it would be best you go in to have it fitted.

Mine is an Aspen Vista they tried a medium first, too big so they used a small. You can see them online at www.aspenmp.com look up products for the neck or cervical collar.

The shots I have recently gotten are steroid injections called "Trigger Point Injections" small amount of steroid goes into the spots that are the most painful. Mine actually went along the incision line due to my muscle problems. They do help but one spot is giving me problems and the MRI showed I now have facet disease in that area.

I can't have any more shots for 3 months.

I am glad to hear you are seeing a Neurosurgeon.
 
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stubbornperson replied to Debsbears's response:
I just wanted to make sure the doctor talked to you about the side effects of the steroid shots. I would still have taken them but I wish I would have known what to watch for and how to combat the side effects while I was getting them.

I would like to keep in touch to help you through your next phase. You have been a great help to me I want to repay the favor. Sometimes it's just knowing someone is there to listen.

Good Luck and keep me posted.
 
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Debsbears replied to stubbornperson's response:
Hi again oh yeah I know about the side effects - I have had enough of them I actually them what they are going to tell me following the injections. They think it is kind funny that a patient can recite the nurses print out before they can say a word.

Being a type 2 diabetic doesn't help either because it does raise my sugars quite high for a few days.

My next phase is the facet injections but I have to wait a few months as I am preparing for surgery for my colon. I mentioned it in another post. Keep us posted as to what happens next for you I'll keep you in my prayers.
 
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stubbornperson replied to Debsbears's response:
Hi, I just wanted to check in & see how you are doing. So how are you feeling & when is/was your surgery. I hope it goes/went well. Best wishes for feeling better.
 
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Debsbears replied to stubbornperson's response:
Hey and Hi to you as well, I am hanging in there. Tomorrow I go see the Stoma Nurse and get my practice bag placed. My Surgery is July 10th, it is not coming soon enough for me. Thanks for asking. Deb
 
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stubbornperson replied to Debsbears's response:
Hi Deb I just wanted to see how you are doing after your surgery. I hope you are healing well.
 
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debs_bears replied to stubbornperson's response:
Hey stubbornperson, not the name I would give you but anyway thanks for asking.

I am holding my own - due to my cervical fusion seeing what I am doing is a little hard especially when I have to look I the mirror to do my changes. It is a challenge but I do it.

Surgery had it's complications, stayed in the hospital 8 days and I am still battling my tiredness from the surgery. I see my stoma nurses on a regular basis to make sure I do not have any infections so far so good.

Overall this is my new normal and I will live with it. The ileostomy has given me some of my life back so I can not complain.

How are you doing? Deb
 
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stubbornperson replied to debs_bears's response:
You have such a positive attitude. It's really awesome.

I'm doing ok. I have been through testing at a "Movement Disorder Clinic" because of the falling. All of the spine surgeons agree the twitching and falling is probably not because of the discs.

Good news is the I do not have any of the debilitaing diseases like ALS or MS. So that is great news!

They really have no idea what's going on. Everyone agrees there is a problem (duh!?) but so far still no idea what. I now have a whole team from the clinic working on this so I actually feel better knowing they are going over all of my testing.

In the meantime I am doing physical therapy to build up all of my muscles before I undertake surgery. That is going well.

I am glad you are so up beat and you have gotten some of your life back. Keep me posted. I'll check in once in a while to see how you are doing.

Best Wishes!
StubbornPerson (never going to give up!)


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