Welcome, Friend!

It looks like you're new here. If you want to get involved, click one of these buttons!

advertisement
advertisement
Veritas-Health LLC has recently released patient forums to our Arthritis-Health web site.

Please visit http://www.arthritis-health.com/forum

There are several patient story videos on Spine-Health that talk about Arthritis. Search on Patient stories
Protect anonymity
We strongly suggest that members do not include their email addresses. Once that is published , your email address is available to anyone on the internet , including hackers.

Notice
All discussions and comments that contain an external URL will be automatically moved to the spam queue. No external URL pointing to a medical web site is permitted. Forum rules also indicate that you need prior moderator approval. If you are going to post an external URL, contact one of the moderators to get their approval.
Attention New Members
Your initial discussion or comment automatically is sent to a moderator's approval queue before it can be published.
There are no medical professionals on this forum side of the site. Therefore, no one is capable or permitted to provide any type of medical advice.
This includes any analysis, interpretation, or advice based on any diagnostic test

Declining Rapidly

Like all of you, I have had such a struggle dealing with my spine injuries. All of my problems and I have not had real medical treatment. I just can't find a good doctor. My physical therapist discharged me after 2 sessions because she saw red flags that I might be dealing with cord compression due to my balance and incontinence issues. She called the neurologist, who acted as if she did not care and never contacted me to discuss. The PT called the surgeon who prescribed the therapy, and he did not return her calls. I was abandoned by everyone just when I needed immediate care. I fired that surgeon and went to another who I found had multiple settled malpractice cases. He wanted to do posterior and anterior cervical surgery to fuse two vertibrae, and put spacers in to give me room in my spinal canal where I was born with a very narrow spinal canal and now have very little spinal fluid. I have SEVERE weakness in both arms and legs. I feel that in a few weeks I will be wheelchair bound. Still fighting to get up and go to work everyday since I exhausted all my leave after the accident with a concussion and whiplash. I have an appointment with an orthopedic surgeon on Wednesday since I have had such bad luck with neurosurgeons. I just want to feel alive again! I am unable to lift my arms longer than a few minutes at a time, and my legs prevent me from standing or walking much at all. There is no question that I need surgery. I just hope that the new surgeon does not think I need both anterior and posterior surgery. That one scares me to death! My first spinal fusion after an MVA was an emergency surgery because I was going paralyzed. Seems this time is no different. I feel my life energy slowly ebb away, and it truly is terrifying. Weaker than a newborn kitten and only 49 yrs. old. This is no way to live. Thanks for reading.
Freddie

Spinal Fusion 1998 C5/6, post MVA
MVA 2/2/13
8 Bulging Disks
2 w/cord compression and pinched nerves
Trying to find good surgeon before I go paralyzed

advertisement

Comments

  • So sorry to hear about your pain & problems. I hope so much that you can find a doc to set you on the right path.

    Welcome to the forums, you will find it to be a great place to chat & vent with others in similar situations!!
    L5S1 REMOVED herniation. Years of pain & compression. Microdiscectomy complete!! Trying to be super smart & safe with recovery!
  • I am sure that you will find your time on Spine-Health very rewarding. This site is a powerful and integrated system that is dynamic and continues to grow.
    Here are just some of the highlights:

    - Detailed medical libraries of Articles and Videos that address almost every Spinal Conditions and Treatment

    - The Wellness section contains articles, tips and videos to help patients after surgery and also to help people avoid surgery.

    - Under the Resource tab, there is a section Doctor Advice Health Center which can be invaluable.

    - As a bonus, Spine-Health provides these patient forums. Here is where you can meet thousands of other people who understand and can relate to your situation. You will soon become part of the Spiney family who provide comfort and the advantages of a Support System. You are now part of this family that is approximately 20,600 International members and growing daily.

    - It is very important to understand the Forum Rules to make sure all of your posts do not violate any of the rules.

    - As a new member, it is helpful to understand the 'makeup' of these forums, how to make posts, tips on adding images and much more. You should read Forum FAQ

    Here are some you should take a look at:
    Read before you post
    Tips for Newcomers
    Understanding the rules

    All of this will help make your threads better and improve the times and quality of responses you will receive.

    If you have any questions or need assistance, you can use the Private Message facility to contact any one of the Moderators on my team:

    dilauro

    tamtam

    Liz

    Sandi

    JellyHall

    ***********************************************************************************************
    Welcome to Spine Health Freddie,
    I'm sorry for what you are going through right now and wanted to wish you good luck in your next appointment with this new doctor. I hope that he can help you so that you can get your back issues addressed as soon as possible.
    How long have you been experiencing this incontinence issue?
    Sandi
  • Frisky FreddieFFrisky Freddie Posts: 12
    edited 05/24/2013 - 2:21 AM
    Hi Sandi,

    My accident was on 2/2/13 and I have had bladder incontinence on and off since then. I can be doing nothing at all, and I feel a slow trickle. Sometimes only a few drops, but I have to wear a pad constantly. Since my accident whenever I am under a light anesthesia, I lose total control of my bladder when I awaken. This is something completely new. When I told the PT this, along with my balance issues, and somewhat spastic gait, she thought it sounded like cord compression to her. The doctor I told about this did not seem to pay particular attention to these symptoms, but yet the PT thought it was an urgent matter. So now it is two months later and I have not had anyone address the subject with me yet.
    Freddie

    Spinal Fusion 1998 C5/6, post MVA
    MVA 2/2/13
    8 Bulging Disks
    2 w/cord compression and pinched nerves
    Trying to find good surgeon before I go paralyzed

  • Please get that checked out by at least one new doc ASAP!
    L5S1 REMOVED herniation. Years of pain & compression. Microdiscectomy complete!! Trying to be super smart & safe with recovery!
  • Frisky FreddieFFrisky Freddie Posts: 12
    edited 05/28/2013 - 2:00 AM
    I am trying! I have an appointment with an orthopedic surgeon tomorrow. Not too soon either. Over the weekend I lost almost all strength in my arms and hands. Typing is a real challenge. Starting to work half days now. Simply miserable.
    Freddie

    Spinal Fusion 1998 C5/6, post MVA
    MVA 2/2/13
    8 Bulging Disks
    2 w/cord compression and pinched nerves
    Trying to find good surgeon before I go paralyzed

  • RickilalasRRickilalas Posts: 559
    edited 05/31/2013 - 1:08 AM
    Hi Freddie
    If this keeps up or get worse and your appointment is a long ways out
    I would go to a ER this can be serious and its better to be safe then sorry
    Your issues were like mine and I ended up with cord damage
    This can not wait.

    Er time
    Rick
  • Rick,

    I am sorry that you have had such a terrible experience.

    As a follow-up - I went to an Orthopedic surgeon who told me that my symptoms appear to be serious, but my MRI is not showing cord compression serious enough to warrent my symptoms. He said that I do not need surgery and recommends I see another neurologist. He said perhaps the problems were concussion related. I don't know what to do now. Two surgeons wanted to operate, and convinced me that my neck is a "mess", and this one tell me otherwise. Meanwhile, I am working half days because it is all I can do. But without doctor's documentation, I cannot have sick leave advanced and am forced to go back to full-time next week. I work for the government so it is not like I can just walk away from this job, although I would love to. If this is not spine related - I am at a total loss as to what it could be. Symptoms appeared just a few days after auto accident.
    Freddie

    Spinal Fusion 1998 C5/6, post MVA
    MVA 2/2/13
    8 Bulging Disks
    2 w/cord compression and pinched nerves
    Trying to find good surgeon before I go paralyzed

  • It does sound like something very serious is going on. Do you live anywhere near a major city hospital? If you do I would strongly suggest going there and finding a doctor who specializes in congenital spinal cord issues.
    I developed a post op Cauda Equina Syndrome , which is very similiar to what you are describing but in the lumbar area of the spine. Have you had any studies done of the lumbar and thoracic areas? The reason that I am asking is that the incontinence issues, are part and parcel of CES and I would hate for you to go undiagnosed if that is what the problem is. You can have CES, even without a traumatic injury, and it may be that there is something going on in the lumbar area that is the cause of the problem especially given a congentially narrow canal.........or you can call your GP and ask him to order a MRI of the lumbar area. I'm surprised that none of the surgeons that you have seen so far have considered this, given your symptoms.
    Sandi
  • Freddie
    I learned a few odd things helping a friend out with a failed fusion the last two weeks.
    Five doctors five opinions this shocks me that they are all different. But more eyes the better.
    Something is wrong. One thing you said bugs me.
    Your doctor said the cord compression isn't serious enough for surgery.
    Is he saying yes you do have some compression because there should be none.
    A small amount of compression can effect everybody different.
    From what I went through I learned there should always be spinal fluid all the way around the cord.
    You can have them show you this part of your MRI easy to see once they show you.

    Plus Sandi is right it could even be a lower issue that wasn't looked at.
    I have lower issues also but the cervical cord damage can also be the cause of it to.
    Again this needs to be looked into so nothing gets worse or damaged beyond repair.
    When your arms are involved I would think its most likely in the neck but odd things happen.

    Don't mean to scare you but you need to stay on top of this.
    There has to be somebody you can see to get a off work order while this is being looked at.
    Just prior to my cervical surgery my arms would get heavy and hard to lift.
    Two days before surgery I could not hold my arms up while driving a car they fell to my lap and I used just my hands. Half hour later things would be OK.

    Again keep active on finding what wrong.
    Rick
  • Sandi and Rick, not long after the accident I developed low back pain, so I got an open MRI done. Nothing but small degenerative issues were noted. Apparently nothing remarkable so it has never been discussed since. The pain is not getting worse, so it seems the least of my worries at this point. From the orthopedics recommendation I went to see a new Neurologist. I have only seen her once and she seems to think that surgery is not urgent at this time. Since she did not have all of my test results in front of her from other doctors, she would not say any more. Although she was baffled that I did not offer up the fact that I have narcalepcy. I know that the two are not related. I've had narc for at least the past 10 years, and never experienced this type of weakness. I know my body, and this is a progressive problem, not at all related to a sleep disorder. I do not seem to be getting worse in the past week or two, so that is good. My new doc prescribed Tramadol to take with Neurontin that was previously precribed not long after accident. Neurontin is the most beneficial, but I am finding that it is working less and less all the time. As for the Tramadol, it makes me just care less about my troubles. It has been 4 months post accident, 5 specialists later, and I am feeling like giving up.
    Freddie

    Spinal Fusion 1998 C5/6, post MVA
    MVA 2/2/13
    8 Bulging Disks
    2 w/cord compression and pinched nerves
    Trying to find good surgeon before I go paralyzed

  • I can tell you that my new neurologist does not think this is too serious because she had me schedule a follow-up with her in 3 weeks. Guess I have to trust her (somewhat) at this point. IF I get significantly worse, I would not hesitate to go to the ER. I do wish she had told me that I can resume exercise. The Neurontin, mild edema, and inactivity has caused me to gain 13 lbs., so I am eager to start moving again.
    Freddie

    Spinal Fusion 1998 C5/6, post MVA
    MVA 2/2/13
    8 Bulging Disks
    2 w/cord compression and pinched nerves
    Trying to find good surgeon before I go paralyzed

  • RickilalasRRickilalas Posts: 559
    edited 06/07/2013 - 6:48 PM
    Freddie
    I feel for you. I had two surgeons and one was way so wrong. My friend went to five surgeons and none agreed to the same thing. This just does not sound right.
    Be your own advocate and if and when this gets worse have another set of eyes look it over
    before damage is done. It could be simple and not a issue but its a area I wouldn't guess or wait on.

    Good Luck
  • Hi all. I am still frustrated with my lack of treatment for my cervical stenosis symptoms. I have been to 6 doctors and none of them agree. Meanwhile, my arms and legs are getting weaker and I have lost the entire summer. One doc put me on Gabapentin which has been a lifesaver. I cannot live without it, but it makes me gain weight. Half of my doctors say that the symptoms sound serious, but the tests do not collaborate the cord compression diagnosis. Can someone answer a question for me? Is there a difference between stenosis with mild to moderate cord indentation, and actual cord compression??? So far all the tests come back with only "mild" evidence of a problem. My latest doc told me that my severe leg weakness is caused by me being diabetic, and my arm weakness is caused by carpel tunnel (although the EMG did not prove this fact). I am so tired of this doctor game. I need help. It has been 6 months since my accident.
    Freddie

    Spinal Fusion 1998 C5/6, post MVA
    MVA 2/2/13
    8 Bulging Disks
    2 w/cord compression and pinched nerves
    Trying to find good surgeon before I go paralyzed

advertisement
Sign In or Register to comment.