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Islandstylists update to Having a terrible day! Please help

islandstylistislandstylist Posts: 327
edited 06/11/2012 - 9:02 AM in Neck Pain: Cervical
Hello to all my wonderful spine health friends! I hope you are all having a great day!

I thought I would update my situation and if anyone can give me some advice on how to see a neurosurgeon asap it would be so appreciated.

My pain,weakness and numbness have only gotten worse since herniating my cervical disc months ago. Can't even open a jar with my hand.

When this first happened, I had 2 months of dr's treating me like a drug seeker and told me nothing was wrong with me, after about our 5th hospital visit, my mom and I finally convinced an ER dr to do a cat scan on me and see that I had a very large extruded cervical disc markedly impinging my spinal cord.

The first and only ns I was sent to 2 months ago recommended acdf surgery right away. But he had no experience. So I declined him as my neurosurgeon and asked my gp for another referral.

The 2nd ns called 2 weeks ago and said I couldn't even see him for an appt until the fall. So at least 6 months away. So I asked my dr for yet another referral.

Now yesterday I call the 3rd referral ns's office to ask when my appt would be and the receptionist says "you will not be able to see the ns for AT LEAST 6 mos because this is considered a 2nd opinion appt."

I then told her that this is not a "2nd opinion appt" and told her I declined the first ns due to lack of experience. She said "well then I guess you need to call your own gp and talk to her."

So, here I am 4 mos later, my life as I knew it has been turned upside down. I am still unable to care for my baby and the rest of my family and am barely able to care for myself.
Here I lay, propped up in bed, taking my pain meds like a good little soldier, just trying to get through another day.

Still waiting for an appt with an EXPERIENCED ns.

I dont understand why I am not being put in right away to see a new ns.

If anyone has any advice on how I can get to see a new neurosurgeon with some experience as soon as possible please tell me.

I am getting tired of fighting to be helped. And my elderly mother still has to live with me and take care of my baby and it's been too long and she's getting tired of staying. She lives far away and has a life of her own. I need surgery to get my life back.

Sorry for the ramble, I feel broken and I'm in tears right now.

Missy, 1 level ACDF 
Degenerative Disc Disease.
Sciatica.
Chronic Pain.
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1345

Comments

  • Missy,

    I am so sorry you are going through this. As you know, I experienced something similar, but living in the US, I have different options available to me and I am unsure how things work in Canada. I really hope you can be seen ASAP.

    A couple suggestions though. Here in the US you can seek out a patient rights advocate if you feel your doctors are not treating you right. Is there something similar there? Is there a governmental agency that you can contact for complaints regarding your care? Here in the US, publicity and fear of a medical malpractice suit is usually enough to get a doctor to do what he is supposed to do or at the least, you might get another neurosurgeon to step forward and offer to help. Maybe even call neurosurgeons until you find one that can see you ASAP after you tell them your symptoms then ask your GP for the referral to that neurosurgeon. Hope things turn around soon. >:D<

    Cheers,
    Robin
  • Sorry to hear about your trouble getting in to see a neurosurgeon. I am also from Canada, and have waited anywhere from 3 weeks to 8 months for my referals.

    It does really help to have your gp or other refering surgeon on your side. Sometimes they will only refer to one specialist at a time as well.
    Our healthcare system can be frustrating in certain ways, but in others I wouldn't change it...don't have to worry about insurance approving things etc.

    Wishing you all the best,maybe call your gp and see if they can resend and reword your referal so that you are able to get an appointment faster.

    I feel for you, as I have been in your shoes, and the wait is horrible.



    >:D< Karen
    >:D< >:-D< : Karen
    L3-S1 herniation and bulges, stenosis, mod facet,ddd,impinged nerves,coccydinia
    discectomy/lami July 2011-unsuccessful
    adr L5-S1 Feb 2012
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  • susabellssusabell Illinois Posts: 241
    I think you came up with a great idea, there is no reason you should have to stay with the same gp. If another one can help speed up the process why not try? I know the feeling all to well. The waiting is so annoying. Just need to get on with life and get moving. I think of you often, and I hope you do not have to wait much longer.

    I am awaiting a cervical facet joint injection in my neck on Friday. I have to have 3 injections.
    This will b my second set. Then if all goes well I will b having a facet joint procedure called RF Lesions.
    Seems I have Cervical Facet Syndrome and It is painful!!! I was so active before all this. So I am here right with you, wanting my life back very badly.
    ACDF C4-C7 5/13/2010. Synthetic Bone Graft Failed Fusion.
    PCF C4-C7 8/13/13. Rods and Screws Fused in 3 Months with Autograft.
    C6-C7 Spineous process Surgically Shaved Off 3/11/14.
    Sciatica 3/11/16 Left Leg prescribed Medrol Pack 6 days also Physical Therapy.
  • I'm really sorry to hear about the length of time you have to wait to just be seen! If it makes you feel any better, sometimes I have to wait a month or two to see a specialist (live in US). Eventhough I was told my husband has great insurance, we still have to pay quite a bit out of pocket costs.

    I like the suggestion of finding an advocate to push things along or finding a GP who takes your condition with urgency. I really feel for you and hope you will be seen soon. When you have kids, you need to be able to function. My thoughts are with you! Much hugs!!! >:D< >:D< >:D<
    2011 ACDF C5-6 for Spondylosis with Myleopathy
    2012 L4-5 herniated disc and hernated disc at C4/5 2013 Taking Amitriptyline for headaches
  • I don't know if you would be able to do this or not but if it would be in any way possible for you to come down to the states for treatment I can give you all the information for my N.S that I am seeing. From his reviews He is one of the best in the area. He is out of the biggest hospital in Boston Massachusetts and the last I knew he was only booking out until June possibly July at the absolute latest. If you are interested in trying to come to Boston Massachusetts for treatment let me know and I will send you all of the hospital and doctors information. I hope things get better for you soon!!!!
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  • I agree with you 100 percent that that they need to look at their referals and put those who are high priority, such as yourself at the top of the list. When it comes to things like cord compression and myelopathy, this needs to jump to the front of the line.It seems that this can sometimes happen once you see the surgeon (have surgery quickly after consult) but it doesn't seem to always work for the initial referal...which is why the refering doctor has to really do his part when he sends the referal.

    I am two months out from my adr, really hope things are going to get better...I also had to wait a long time for my first surgery from when I herniated so am dealing with nerve damage.

    I would look for someone to really advocate for you, time is very precious.

    I will keep you in my thoughts and prayers for you to get the help you need...quickly.

    >:D< Karen
    >:D< >:-D< : Karen
    L3-S1 herniation and bulges, stenosis, mod facet,ddd,impinged nerves,coccydinia
    discectomy/lami July 2011-unsuccessful
    adr L5-S1 Feb 2012
  • I am two months out from my adr, really hope things are going to get better...I also had to wait a long time for my first surgery from when I herniated so am dealing with nerve damage.

    Oh that's terrible, I will pray that your nerve damage gets better Karen. I know how much it sucks to have nerve damage.

    I would look for someone to really advocate for you, time is very precious

    You're right hon, I am beginning to see how precious it is, my myelopathy has progressed a lot in just 4 months.

    Thank you for caring, I will also keep you in my thoughts and prayers and update you after my appt on Friday.

    Hugs.
    Missy, 1 level ACDF 
    Degenerative Disc Disease.
    Sciatica.
    Chronic Pain.
  • I am two months out from my adr, really hope things are going to get better...I also had to wait a long time for my first surgery from when I herniated so am dealing with nerve damage.

    Oh that's terrible, I will pray that your nerve damage gets better Karen. I know how much it sucks to have nerve damage.

    I would look for someone to really advocate for you, time is very precious

    You're right hon, I am beginning to see how precious it is, my myelopathy has progressed a lot in just 4 months.

    Thank you for caring, I will also keep you in my thoughts and prayers and update you after my appt on Friday.

    Hugs.
    Missy, 1 level ACDF 
    Degenerative Disc Disease.
    Sciatica.
    Chronic Pain.

  • I am so sorry to hear that you are still having to wait to see the neurosurgeon.

    I am in the UK, and here we also have long waits for medical appointments. It is so frustrating and sometimes worrying!

    I am glad to say that my myelopathy is progressing slower than yours as there has only been a small amount of change in 6 months.

    I wonder if you talked to your GP about your bladder problems, it that would mean that you would get seen earlier.

    Starting with a new GP is probably a good idea to try to see a neuro earlier that for a second opinion.

    I had waited over 4 months for my 2nd opinion appointment with a neurosurgeon, and we decided to pay to see him. I had an appointment in less than a week!

    Do let us know how you get on. We'll be thinking of you.
    >:D< >:D< >:D<

  • Hi Missy, sorry to hear about your troubles and don't apologize for ranting, thats what this forum is for. Their are plenty of good people whom understand exactly what you are going through. In 2006, 2007 when my neck started bothering me more and more, I swear my PCP thought I was drug seeking. I saw him numerous times for pain in my neck and he would only prescribe tramadol, one of his nurses told me he did not want to prescribe narcotics for me, even though I did not have a drug problem. In 2008 he finally sent me for an x-ray and even after seeing the results he did nothing. One day the pain and numbness was so bad I saw other dr in the office and before he came into the room I heard him on the phone saying " he is here, what do you want me to give him". After he came in and I told him I had severe tingling and numbness in all extremities, right down to my toes, he sent me for an MRI, of course by then I had three herniated disc, stenosis and other good stuff. The ortho still only prescribed tramadol until one day I went to office with the worst pain I ever had, finally I was prescribed Vicodin. Thanks to all of the drug seekers and DRUG DEALERS we people who are in pain suffer. Missy I know you are tough and will not give up, so use this forum to voice your frustration and anything else. You can even pm me with a message hating all men (lol) anytime and you wont hurt my feelings, you have helped me and many others. Let us return the favor by helping you. P.S. Stop Ranting soooooooo much :) . Joe
    ACDF C5-6 July 10, 2012 with plate and screws.
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