Cervical Spinal Stenois

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Anonymous
Anonymous Member Posts: 1,376
edited June 2014 in Life After Breast Cancer

dh and I received some bad news yesterday. dh had numbness in his thumb for about a year . At the tim he had an MRI done of his back/neck... the Dr thought something might be pressing on a nerve - thus affecting his hand. Back then, it showed degenerative disc disease... not uncommon. Last week he went for a f/u MRI - this time it showed Cervical Spinal Stenosis. His is moderate to severe. It's a norrowing of the spinal column. It's amazing that he has NOT had severe neck or back pain. But that does NOT mean that it shouldn't be treated immediately. Yesterday he went for a brain MRI - to rule out MS as a possible cause. Monday morning we will visit his Dr for the results and to talk about surgery/options. It's really good that it has been caught now. If not caught at this stage, it can be even more serious. Can cause bladder and kidney probs as well as the inability to walk.  The surgery is quite invasive. He will have a long recovery time and lots of PT. I just hope it all works out. I am so frightened at the thought of surgery of the back. One wrong move and he could be paralyzed. DAMN! We are researching alternatives. Other than this, he is very healthy... thank goodness! It's always something!

Have any of you had this? Or... do you know of anyone who has had this?

I'm curious as to alternative treatment suggestions. Also... there's several different surgery options. If you or someone you know has had this disease... what type of surgery was done? Was it successful?

Any input IS MUCH APPRECIATED! Thanks girls!

Comments

  • swimangel72
    swimangel72 Member Posts: 1,989
    edited July 2009

    HI Laura - I'm so sorry your DH is going through this, it's so scary. My bf's mom had spinal stenosis in her 80's - so bad she couldn't walk - and the surgery "cured" her - even at the age of 80! It's good your DH caught this early! That said - be sure to get a second opinion from other specialists (I'm assuming you've seen a neurologist)........I also have spinal stenosis, and numbing of two toes, but the orthopedic doctor I saw said it wasn't very severe and I wouldn't need surgery. Fortunately I have no back or neck pain - I think all the swimming all these years really has helped with that. Still, I worry that it could get worse - but reassure myself that I've had "baseline" MRI's done which will make it easier to watch.

    I'll be praying for your DH and you - hope you are comfortable with whatever decisions you make - and that God's angels will watch over you!

  • dreaming
    dreaming Member Posts: 473
    edited July 2009

    He had breast cancer?

  • leaf
    leaf Member Posts: 8,188
    edited July 2009

    I had a prophylactic  ACDF C5-7 (anterior cervical discectomy with fixation).  In English this means they went through the front of my throat (anterior), took out the 2 discs, drilled out a boney growth inside my spinal column, did a Roto-Rooter job on my nerves at that level as they exited the spinal column, fused them together, and put in a titanium plate.

    I had never heard of this surgery before.  I went to a 2nd opinion and he recommended having it done too.  My neurosurgeon said that he was concerned I would have a spinal cord injury if I fell on my chin.  That's because of the boney growth inside my spinal column.  I would have had a minimal surgery (my surgeon specialized in minimal techniques), but my discs were too shot.

    I have carpal tunnel too, so I had other issues.  

    I had physical therapy after for a few months.  I was out for 6 weeks with a no-drive clause and a 2 pound lift restriction.  (That's about 1 quart of fluid.)  Since I live alone, that meant multiple trips to the grocery store and to take out the garbage.  I couldn't take the 5 pound jar of flour out of the cupboard.

    I don't know if it was necessary or not, but I'm glad I don't have to worry about a spinal cord injury.  I knew I'd never have the expertise to decide whether or not I really needed one.

    Here's what the Mayo says about spinal stenosis. http://www.mayoclinic.com/health/spinal-stenosis/DS00515 It lists nonsurgical options.

    Best wishes to your hubby!

  • abbadoodles
    abbadoodles Member Posts: 2,618
    edited July 2009

    Gosh, I never even heard of this but I am so sorry you two will be facing more c--p.  I hope your dh is well sooner rather than later. 

    (((Laura)))

  • Anonymous
    Anonymous Member Posts: 1,376
    edited July 2009

    Thanks for the info and the good wishes...

    If anyone else has ANY input please post!

  • AnneW
    AnneW Member Posts: 4,050
    edited July 2009

    I used to work in an interventional pain clinic, and I saw tons of spinal stenosis patients. We tried to maintain people with epidural steroid injections episodically. Not everyone with a nerve deficit needs 9or should have) spinal fusion.

    We saw far more complications from fusion than success. But, we're a pain clinic, and we got the surgical failures.

    Fusing the spine puts pressure on the discs above and below the fusion. These will "go" at some point, creating a new set of problems. With surgical failures, you'll look at a lifetime of narcotics, getting stronger and stronger as tolerance increases over time.

    I'm not saying this happens to everyone. But I have personally witnessed so much that I would think long and hard before either my dh or I had this surgery. Second, and third, opinions are in order.

    Best of luck,

    Anne

  • BonnieK
    BonnieK Member Posts: 655
    edited July 2009

    Hi,

    Long story short -- I had cervical stenosis and other problems in my neck and had ACDF (anterior cervical discectomy with fusion) for C4-6 in January 2008.  It was an overnight stay in the hospital and a few weeks of being very careful afterward.  The pain was gone as soon as I woke up from the surgery.  Unfortunately, now a year and a half later, C3-4 and C6-7 are both giving me problems -- achy shoulders and some numbness in my arms and hands.  I'm going to put off surgery as long as possible because it is just too soon after breast cancer treatment to think about another procedure.  I would definitely encourage your DH to see a neurosurgeon that specializes in spines for this type of surgery and get at least 2 opinions.  Best wishes...

    Bonnie  

  • Anonymous
    Anonymous Member Posts: 1,376
    edited July 2009

    Thanks again! I really appreciate the info!

  • candie1971
    candie1971 Member Posts: 4,820
    edited July 2009

    Laura, I do not have any input for you. I am not knowledgeable in back problems, tho, I am beginning to have very bad pain in my lower back. I just want to offer you my hugs and support that your husband gets better soon.

    Hugs and prayers

  • Anonymous
    Anonymous Member Posts: 1,376
    edited July 2009

    Thanks Candie! I hope your back pain takes a vacation - a very long vacation!... be well!

  • iodine
    iodine Member Posts: 4,289
    edited July 2009

    Wow, what timeing for you to bring this up.  I am going for a 3rd opinion for severe stenosis at Lumbar 3.  First neurosurg. wanted to do 3 levels with rods and fusion due to slipping of the spine sideways and toward the back, besides the laminectomies.  then he backed out saying he'd only done one surgery with that many levels--at least with the minimally invasive technique.  He referred me to Memphis to the guy who taught him the procedure.  I 'll see him in 3 weeks.

    In the meantime, I consulted a neurosurg who doesn't do min. invasive(read up on this: it's like laproscopy for tying tubes and removing gallbladders, and the surgeon has to be very careful, but the recovery is very fast(muscles are not stipped from the spine--surgery is done thru a scope) and if just for stenosis, can be done outpatient)  Anyway, he said I'd need only one and no rods or fusions.

    So---more x-rays and I have an appt next week with an ortho who does only spine, as did the first neurosurgeon).  I have all my studies: MRI, bone scan, EMG/NCS, flexion/extension and standing/supine plain xrays.  I'm hoping to get TWO  recommendations that match.  LOL and then decide who I'll let do it.

    It's a little money maker for the simple stenosis surgery, a "lazer" spine center in Fl. does the workup, surg. and teaches PT all in 5 days.  The docs accept insurance and medicare, but the facility --hospital,etc, do not accept any.  So, you go there and cough up at least $18,000.00 (not a typo) to get it done.  If you have reg. ins. with out of network avability, you can get a little of it back.  I'm on medicare, so I'd just be out 18 grand,  Yeah, right!

    I have arthritis in the back( lifted too many patients in  my career, I guess) and other stuff, but the stenosis began to really get bad in Feb. and I am able to stand or walk for no more than 10-20 min. without sitting to relieve the pain.  I have increased my pain meds from 2 tylenol #3 to percocet, but try to only take that at night and keep with the codine in the day. 

    I have little activity other than TV, the boards and reading.  My gardens are a mess and I can only work on the parts that I can sit on my garden cart and still reach them.  So, quality  of life is in the pits. 

    I had sworn all my life that I'd NEVER allow back surgery, but at this stage, I'm begging someone to fix this.  I worked with a huge number of back patients (but before the new min.invasive) and outcomes were less than optimal and scared the sh** out of me to do it to myself. 

    I still work out at the pool at least 3xwk--about an hour. laps, streaching, and strengthening, esp upper body and abdomen.

    I totally AGREE; get opinions!  At least 3, and only see a doc, either neurosurg or orth who does only spines.  And make sure they do the procedure they recommend several tiimes a week and have done so for at least 5 years.  At least those were my criteria for breast recon and my spine is certainly as important at recon.

    Probably, TMI, but I'm worn out with frustratiion, waiting for appts,  and continued pain.  At least I'm retired and can stay home.  My dh has been a jewel, goes to the back of the house (we have a Long house,) to keep me from having to walk it if not necessary.  He does the grocery ---I can go in, but can't make it thru the store and back to the car.  I cook in "shifts" of 10 min., sit, 10 more min., etc. 

    I got a tiny bit of relief from epi injection for 48 hour , so it was not worth doing it again.  I just want to get back to something like normal.  I was so good before this crap started. 

    So---ck out the min. invasive surgery and watch out for rip offs, and stay with docs who do only spine surgery.

    My heart goes out to you both, bless you and I pray for great results if he chooses surgery.

  • leaf
    leaf Member Posts: 8,188
    edited July 2009

    It may be challenging to get 2nd opinions: I suspect my 2nd opinion was 'friends' with my original neurosurgeon.  My neurosurgeon said he and his group (of 3 docs) had done over 800 of these.

    I do have some neck pain occasionally, but my balance is not good, and since I live alone, I'm glad I don't have to worry about getting a spinal cord injury if I fall on my chin.

    When I first looked at the spine surgery support group (online) I was flabbergasted with the amount of pain meds people were taking.  (Some people were taking 500mg of Oxycontin twice a day.)  They said they felt horrible picking up these meds. I came to the conclusion that those pain meds weren't working.

     If you have chronic, severe pain, and only want to go the medication pain relief route, I wonder if methadone would work better.  When my friend was having palliative care for pancreatic cancer, the palliative care doc said morphine, oxycodone, etc didn't work well for neuropathic pain.  Methadone is a mainstay she prescribes.  It made an incredible difference for my friend.  The palliative care doc said the things that work for neuropathic pain are methadone, Lyrica, Neurontin, low dose amitriptyline (Elavil), and maybe Darvocette (for mild pan.)

    I'm a hospital pharmacist, and with this doc's influence, we give out a LOT LOT LOT more methadone than we used to do.  Its a lot cheaper than Oxycodone and MS Contin, etc. too. Yes, there's the stigma, as its used for heroin addicts. 

    I think its really hard to make decisions about this.  We don't have the experience that these docs have.   Hoping your dh and Iodine get better soon, no matter what therapy they choose!

  • Madison
    Madison Member Posts: 1,819
    edited July 2009

    Laura,

    I have spinal problems, including stenosis, degenerative disc disease and bulging and herniated disc problems (between L3, L4 and L5-L5-S1).   The pain varies between the back, hip and legs.  I feel the worse part of this is the radicular pain (nerve root pain).  The pain travels down my legs...into my feet.   The radicular pain bothers me the most because of the inability to sit, sleep, stand, etc.  This can lead to the loss of bladder, etc. control.

    I spent a sleepless night last night due to the radicular pain in both legs.  I have good days and nights and bad days and nights.

    Please get another medical opinion.   The specialist I see is very conservative and we are trying to stay away from any surgery.   We discuss all possible treatment options.  I have 3 levels that are unstable and repairing one may cause problems to the other levels. 

    There are many individuals who respond to physical therapy, cortisone shots (I've had 3 of these) and other therapies.   Sometimes surgery may be the only option because of nerve damage.

    Having said all the above.....I do know that each individual must evaluate the pros and cons of any treatment plan with their doctor.     You and your DH are doing the right thing by researching the problem.    There are many, many websites that advocate surgery (mostly private doctor/medical facilities).   The best information will be from medical sites like WebMD, etc.   

    Laura, send me a PM if you would like to talk.     

  • Anonymous
    Anonymous Member Posts: 1,376
    edited July 2009

    Wow - Thanks for all the info... I'm sorry so many of you are dealing with this. Until now, I have never even heard of this.

    We just returned home from our 1st opinion. The news is NOT good... he has severe narrowing in the C5,6 & 7 area. The Dr. showed us the MRI films on his computer. The narrowing is very obvious - even to my and dh's untrained eyes. This Dr. is head of back and neck surgery at a hospital close to us. He said he's done alot of this type of surgeries. He specializes in back and neck. He seemed thorough and didn't rush us. Since it is already at two levels, he doesn't think alternative treatment would help. He suggested that we do get another opinion. dh will need a bone transplant - taken from his hip. This Dr. does not use any metal or plates. His recommends surgery ASAP... and in the meantime, no sports or heavy lifting.

    Our next step will be Northwestern for another opinion.

    Thanks again for all the info!

  • Anonymous
    Anonymous Member Posts: 1,376
    edited July 2009

    iodine - Wow - You are dealing with a lot! Let us know how your appt goes. Hang in there.  

    leaf - Your surgery sounds very similar to what the ortho suggested at yesterday's consult. Through the front of the neck...etc. I get goose bumps just thinking about it! I'm happy you're doing well. It's a long recovery.  

    Anne - Unfortunately in dh's case - surgery is the only option... thanks for the advice.  

    Bonnie - It's awful you're having probs with it again so soon...and along with bc... hang in there.

      Madison - I didn't know you are dealing with back issues. Chronic pain is so awful. As for the injections... I think I read that you can only have 3 per year or something like that. I hope your pain subsides.  

    Tina, Meg, Swimangel - Thanks!

  • Anonymous
    Anonymous Member Posts: 1,376
    edited July 2009

    leaf - How big was the incision in your neck? And...did you have a bone graft?

  • iodine
    iodine Member Posts: 4,289
    edited July 2009

    Well, the ortho agrees that fusion is needed.  at least that part is settled.  He doesn't do min. invasive, so I'll see the guru of min. invasive surgery next week in Memphis.  Then I'll have to make a decision according to what he recommends.

    There are alternatives to using splinters of your hip bone for grafting for fusion.  I forget the name of the stuff, but it is supposed to work well.  (I just call it fairy dust) LOL  Grafting/or other  is necessary if you need the area stabalized with fusion.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited July 2009

    Dotti - Yikes - it sounds major not min! Best wishes with your upcoming appt. Sorry you have to go through all this...it's always something as we age. I love calling it fairy dust! Too funny. Well hang in there... let us know what the Dr says -!

  • Anonymous
    Anonymous Member Posts: 1,376
    edited August 2009

    Spice Girl - THANKS SO MUCH... the support here has truly helped me. Thanks! OMG - You are from IL... you are practically my neighbor... I am sending you a PM!

  • billiegirl
    billiegirl Member Posts: 85
    edited August 2009

    In 2007 I was having so much upper back pain that I could not function.Also had numbness in arms & decreased bladder control. I delayed MD assessment because I assumed it was BC mets...after many miserable months I finally had an MRI only to find not BC at all. It was a herniated disc at T7-8 that had calcified and had a serated edge that was impinging the spinal cord. Did have disc- ctomy and spinal fusion. It was a difficult recovery with 14 days in the hosp and 2 weeks in a rehab facility, but all that was nothing compared to the pain I had been suffering through before the surgery. I have not regretted it for a second. Even though it was thoracic and not cervical...risk was guaranteed total paralysis with-out the surg vs a high % possible complications leading to permrnant paralysis  even with the surgery. I am definitely not 100% fixed, but I am still so much improved from previous state. I would do it again without hesitation. I think the decision process is similar to finding out you have BC. Treatment is no picnic, but it is amazing how far medicine has come and what can be fixed or temporairly repaired that used to be hopeless. It is benifits vs risks.In my case I just could no longer bear such horrible pain and new I had to try to have it fixed or die trying. Good luck to both of you and i hope everthing turns out OK

  • Anonymous
    Anonymous Member Posts: 1,376
    edited August 2009

    Billiegirl - Thanks for taking the time to respond. I am so happy you are doing so well. Thanks much!

  • iodine
    iodine Member Posts: 4,289
    edited August 2009

    Hi Laura, well, I've finally got a surgery date: Sept 25.  Wish it were sooner, but at this stage I'd take a kitchen table and butter knife.  LOL  Will rod and fuse 3 levels and take out a disc.

    Until then, I'll be working out in the pool to increase strength and flexibility.  the no bending or turning is gonna be a goodie.  LOL  the worst is no anti inflammatories for 2 mos. post op.  My jooints are going to having fits!

  • AnneW
    AnneW Member Posts: 4,050
    edited August 2009

    Dottie,

    I'll be thinking about you. Start looking into pain managers in your area if you haven't already. I know too many orthopedic surgeons who cut off their fusion patients from meds at the 6 week post-op point. And the reality is, you made need narcotic support for a while after that...

    In the meantime, swim like a fish, drop a few pounds, strengthen your core and everything you can.

    Will you be in a hard brace for the time that you can'tbend or turn?

    Anne

  • Anonymous
    Anonymous Member Posts: 1,376
    edited August 2009

    Dotti - Well... I am glad you have your surgery scheduled. Best wishes to you. I will be thinking of you! Hang in there! Will the fusion be cadaver or bone graft?



    dh and I had our 2nd opinion last Wednesday - the 1st opinion - an Ortho Surgeon said surgery is absolutely necessary ASAP - the 2nd opinion - a NeuroSurgeon - said No! He wants to wait until he has pain that he cannot tolerate. He said dh will definately need surgery at some point, but he said the surgery is way too delicate to take the risks at this point.

    We both agree w/the 2nd opinion. dh can handle the numbness in his hand - in the meantime.

    We have a 3rd opinion scheduled for Wednesday... that will be interesting

  • iodine
    iodine Member Posts: 4,289
    edited August 2009

    Thanks for the recommendation Anne.  I am going to a neuro and my post op info/detail sheep notes that they want me off meds as soon as possible to prevent addiction.

    Now the problem is: I won';t see this guy again after surgery,I hope to  be followed by another doc closer to me and who was trained by this neuro and actually referred me to him.  So the operating surgeon has no stake in my pain management since he won't have to listen to me bitch.   LOL

    I have a teriffic ortho here who believes in good pain management and feel she will be available to me -- have known her for years and she and dh are very friendly.   She knows I don't take a lot of meds and I sure want to get off these narcotics.  The drugs and continued pain is depressing me and I'm already on anti depressant.  She offered percocet last year for much less pain and seemed relieved when I finally accepted it a couple of months ago.

    Her pain mgt. program includes a urine test on demand---I was really impressed.  She also has patients bring in left over pain meds if they ask for a change in meds and  she he keeps these narcotics locked up in her safe.  Smart gal.  That way she's comfortable giving meds as needed and appropriate for the patient.  Then I have a pcp who is a surgeon and very aware of my aversion to narcotics.

    I can hardly wait to be able to walk more than a few yards and cook a full dinner with having to take breaks---and work in my flowers next spring.  Oh, wait, I'll be getting a hip or knee replacement then---according to my back recovery.  Here comes Darthene Vader.  LOL

    Laura, glad you have a decision made.  It's such a pain to keep going over and over what one should choose.  ANd such a relief to get going.

  • Mazy1959
    Mazy1959 Member Posts: 1,431
    edited August 2009

    Laura,

    My mom had that 4 yrs ago. The first week or so she was in alot of pain but in no time she was going strong. They had gone thru the front of her neck to do the surgery. She said that her legs and feet had hurt so long...she couldnt remember them not hurting. She felt so good and still does. She had no bad anything from the surgery. Hugs, Mazy

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