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When do I give up?

PerseusPPerseus Posts: 17
edited 06/11/2012 - 7:59 AM in Back Surgery and Neck Surgery
I don't know whether to post this under cervical surgery pain or suicide. I am not finding the strength that I was hoping to find.

On 12/22/2011 I had a posterior cervical foraminotomay with fusion of C4-5 and revision of C5-6. My last fusion was C5-6 and it lasted about 1.5 years before problems. After 1.2 yrs, half of my right index finger went numb and I knew I was having probs that needed attention. The surgeon is supposed to be fantastic and I liked him, that is, until he did my surgery. No precautions were given except the usual stuff but when I woke up in recovery, my right arm from top of shoulder, deltoids & biceps to fingertips was numb and still is. My right arm is numb and I have lost about 75% of my strength. I have prepriopception or something where perception is off. I cannot even brush my hair or do most anything else. I cannot raise my arms above my head.

This seems bad enough but my damn surgeon has totally neglected me. He will not answer questions and I have only seen him one time since surgery on 12/22. I am an emotional wreck with no support or guidance. I am so angry with him that when I do meet with him I am afraid that I will tell him how cruel he has been and how he has neglected me. I asked him if there was some kind of counseling or support for his patients who had experienced an unanticipated consequence like paralysis. If this was not unintended, then it was intentional, and either way the surgeon owes me an explanation.

So I don't know whether to keep plugging and try to survive this or whether to give up and go by the wayside. I don't want to consider suing but if he is not going to communicate with me then I am left with few other options.

Does anyone know what I should do? My surgeon has not tested me to see what function I have lost etc. and what I have left. If he has not assessed a baseline of function then how can he tell if I am doing better or worse? I really don't know what to do. Am I supposed to become paralyzed and is the trick to learn to carry on as though nothing has changed and all is still fine. That works OK except when my shoulder freezes up and my "graceful" movements go by the wayside.

So I guess I am finding myself asking what is it all about and if my surgeon doesn't care then why should I. I have an appt with a neurosurgeon next week but am running out of energy to keep exploring. And I'm not sure that I want to hear that the paralysis is permanent because then I don't want to keep going.

I am in dire need of help and am not sure which forum is best for me. Thank you.
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Comments

  • Is your appointment next week with a new neurosurgeon? If not, can you seek a referral to a new neurosurgeon to get a second opinion, a new baseline evaluation and some advice and hope for moving forward?

    "C"
  • Do you have a primary care physician you an contact? Sometimes they can help you navigate the system. Also, you say your doctor is not speaking to you. Do you mean he is not taking your calls or he has not gotten back to you? Hopefully the nurses in the office are answering and tying to relay the info.

    If you are so depressed that you aren't willing to wait until you speak to a professional about the nerve damage, I would say you should take yourself or have a friend or family member get you to the hospital because it is an emergency if your life is at risk.

  • Depression is frequent with people in pain and with physical issues. Please seek help with coping with all you are going through. I have said to myself that "suicide is a permanent solution to a temporary problem", which keeps me grounded.

    If you are seeing a new neurosurgeon, hopefully he can help. Otherwise, maybe a neurologist?

    If you do decide to see an attorney, I hope you can do some research on them to see how satisfied their clients have been. If you do, I would suggest bringing someone with you to an appointment (either lawyer or for you medical appointments). I know if I am too hyped up for an appointment I might not remember everything.

    Surgeons are not generally known for a great "bedside manner"; they do surgeries and a couple follow-ups. He might be concerned about the potential that you might sue him. Since he hasn't responded, he probably won't, so I'd move on.

    I hope you do find help soon.

    KarenD
    KarenD
    4 level ACDF C4-C7 5-2-11, laminectomy & discectomy L4-L5 1/26/12, ALIF L4-5, L5-S1 12/10/12.
  • Another thought based on Karen's reply. Surgeons indeed are not the best at bed-side manners. Some of the best surgeons are the worst at the patient relationship. Sometimes, this is where the Physicians assistant or nurse can help convey the right information to help push your case.

    That being said, I chose my 2nd surgery doctor based on skill and ability to have a conversation. More so, listen to me when I said I was hurting or having problems.

    My 1st surgeon was excellent but really did not want to hear of any possibility that the surgery didn't work. In fact I was worse after the surgery than before but every follow up I got, "This surgery should be very gratifying for you b/c your herniation was massive".

    I finally had to tell him, politely, I cannot leave this final appointment (10-week post op) in good conscious without a better plan than "wait it out".

    He said, he didn't understand b/c once again, this surgery should be gratifying based on the herniation he removed.

    I said to him "That is just it. This surgery is anything BUT gratifying so either my expectations were off or something happened". I then told him either way, I would be angry at myself if I didn't ask for a new MRI to see what was going on vs. wait another 2 months to see if things got better. I did wait 6 weeks, then tried prednisone to try to help which did nothing.

    He agreed but assured me there was no reason to set up a follow up b/c he didn't think the MRI would show anything.

    I got a call the day he got the MRI results to say he needed to see me. Suffice to say he went on to say "well, I'm glad I listened to my suspicions and had the MRI b/c you herniated another large piece".

    I almost fell off my chair when he took credit.
    But, I knew I still needed him for my records and history so I told him I would like a 2nd opinion on the surgery and his office was quite helpful. I just knew that I could not be with him for the 2nd surgery.

    anyhow...you will get through this. Stay strong!
  • HI,
    Gee, after reading your post,I'm glad you posted under cervical instead of your other choice, but I can understand your pain and frustration. Knowledge is power, and you are not being given any!! Some dr's just don't want to know when things don't come out as planned. I'm sure they do their best, but medicine is a science, and nothing always comes out perfect.
    If I were you, I'd make a plan of action..get copies of your tests and the surgical report, then find another dr!! Obviously, this one is not going to get back to you, so find someone who is willing to look at what happened, and see if there is a way to fix it.
    And, keep very accurate records of all that you see...what they said, any meds they gave, any tests performed. If you ever need to file for disability, you will need all this info..it took me 6 hours and 2 hydrocodone, just to fill out the online forms, to take with me to SS office to file...
    In the mean time, while waiting for the next dr. appt., do you have a primary dr. that could put you on antidepressants?? I take one evey morning and it does help alot...nothing like boosting that serotonin level to help you think straight...trust me on that one...
    And when to give up???? Never give up!! You are your own best advocate!! You just need to find a dr you can talk to, and find out what's what..then decide what to do from there...
    Please post again and let us know how you are doing! Hang in there...it'll all work out...
    Frannie
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