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    Old 10-10-2009, 01:18 PM   #1
    p313rk
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    Anxious and looking for feedback

    Hello,
    I've been posting on this board since my initial diagnosis and have gotten such great support - now I'm looking for more.

    Although I think I know about my condition, I would appreciate any feedback you can provide on my MRI results -

    There is a straightening of the cervical spine. There is degeneration and bulge involving the disc of C5/C6. A large broad based central disc herniation is also noted at this level effacing the ventral thecal sac flattening the ventral aspect of the spinal cord contributing to mild central stenosis. There is also a left lateral recess foraminal component which severely compromises the left foramina. There is moderate right foraminal stenosis. The remainder of the discs is unremarkable. The cervial spinal cord is normal in sight. Craniocervical junction is within normal limits. Mild mucosal disease is seen of the bilateral maxillary and sphenoid sinuses.

    My condition presented itself on 7/22/09 and to date have seen an Orthopedic surgeon, pain management doctor and 2 neurosurgeons. I have 2 more appointments next week with a neurosurgeon and a Orthopedic Spinal Specialist.

    The opinions I've received so far from the neurosurgeons is they don't see a need for immediate surgery, but I should consider it going forward. The pain management doctor, who was coordinating my care said I should consider surgery since he noticed weakening in my left arm.

    My pain has been mild (knock on wood) but I do get a strained feeling in my neck, particularily after working all week. I've noticed some other mild symptons, but sometimes have to wonder if it's in my head. My left leg sometimes feels a bit weak with a strange restless feeling. This is episodic and not constant.

    I've become somewhat anxious and very guarded about any physical activity because I don't want to set anything off. My feeling is that I need to get surgery and the disc replaced to prevent any further problems. But because none of the surgeons so far seem to think it's needed immeidately, I don't want to rush into it.

    Because I have 2 more appointments next week, I'm in a pretty good place to get a rounded opinion quickly. Maybe this whole episode is finally getting to me because it's getting me quite depressed at times and I feel somewhat isolated.

    So if anyone has opinions - I'm more than willing to listen.

    Thanks,
    Robin

     
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    Old 10-10-2009, 10:11 PM   #2
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    Re: Anxious and looking for feedback

    There are usually 2 things that drive people to surgery. The first is just unrelenting pain, the kind you just cannot continue to live with even medicated. The second is a surgeon scaring the heck out of a person telling them they could be paralyzed if they do not act immediately or they have such serious weakness it is obvious to the person it is time. Then there are all the people in between - that is where you fall.

    Usually the people in between double talk themselves to death, pay for way too many opinions when really all it takes it maybe two in most cases. There really aren't a lot of different things that can be done about these conditions! Usually two good opinions are enough unless you have a really odd case, or one that is questionable about which surgery to choose.

    The one thing that caught my eye is you say "severe narrowing of the left foramin" and that kind of makes me wonder why you do not have that kind of unrelenting pain - you said mild. YOu also have narrowing on the other side. I am wondering you must have a pretty good tolerance for pain because I would expect you have it in both arms! So if you don't have "pain" do you have burning? Twitching? Odd electrical shocks? Some people might not call this pain and it isn't but is can be uncomfortable. I get shocks that make me jump out of my seat.

    The straightening is not a big deal usually that is from muscle spasms or even from how you were positioned on the MRI table.

    THe biggest reason is the spinal cord. Yes it appears yours isn't extremely bad (yet it is possible to get that way ) but that is the whole operating system for your body. You really don't want to leave it in a compressed (flattened) state for years! When I make decisions anything flattening of my cord - I agree to fix immediately. The other stuff I stall on. Especially when there are neurological signs of weakness now - it is time for you to get a plan together to fix. And I don't know but it could be possible that some of the stenosis you have is causing not all the signals to move through right and maybe you have pain but don't know it?

    Pick the best surgeon you saw and look at the staff in their office too because they will do most of the aftercare. I would get a plan together to get this fixed in the next 3-6 months max. The longer you leave it this way the higher chance you will wake up one morning in the kind of pain you don't want to experience, and you could further damage your spinal cord and that does not heal. Your spinal cord can actually start deteriorating, compressed and rubbed the sheath that surround it can start dissentigrating and exposing the cords, and then you open yourself up to all kinds of neurological problems and pain.

    I don't know what is causing you to keep getting opinions - maybe it is trick you are doing on yourself to stall, yours seems a pretty cut case - fix but not emergency. If all your problems are at this one leve C5/6 - that is a more simple one level surgery, easier recovery, and a majority of people have it, and go back to nornal.

    I truly believe you might be spending unnecessary money on what 6 opinions? From what you have written here it doesn't appear your case is that bad that you need that many opinions.

    Wishing you luck - just get over the hump and start your plan to fix!

    Last edited by PNo; 10-10-2009 at 10:14 PM.

     
    Old 10-11-2009, 03:05 PM   #3
    p313rk
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    Re: Anxious and looking for feedback

    Thanks Neck Patient.
    My rationale for the 2nd, 3rd and 4th opinions was partly some type of stalling mechanism. Another was that the 1st surgeon said he wanted to do fusion and I heard there are other options and wanted to get the best surgeon. Any by the time I made the appointment for the 2nd and 3rd I got in touch with a doctor that practices at the Hospital for Special Surgery. A number of people recommended that hospital as one of the best for these types of surgeries. And as i was doing my search for what I think is the best for me, I kept coming up with another name. I feel these opinions will give me the comfortable feeling that I did all the diligence I could with picking the best possible plan.

    When this all first happened I did have a lot of tingling, numbness and shock feelings in my left arm. That has mainly gone, but there is some weakness. And now I'm having this weak feeling in my left leg as well. Today I went out to meet a friend for lunch and to enjoy the beautiful day, but my leg felt so darn weak and weird, I had to cut it short and come home.

    A lot of this is playing on my anxiety and that is probably making me feel worse.

    Thanks for the feedback. I know I need to have the surgery and will get it done as soon as possible because this whole episode has just worn my out emotionally and physically. I want to get back to feeling normal - or as close to it as possible.

     
    Old 10-11-2009, 07:58 PM   #4
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    Re: Anxious and looking for feedback

    hi again, robin,

    i just wanted to let you know that i understand your need to get a bunch of opinions. this is such a difficult experience, and you just want to make sure that you're going to make the right decision about an irreversible procedure.

    i also TOTALLY get the feeling of isolation and inevitable depression that your injury has brought about. i have been dealing with mine since january and i am climbing the walls!

    it sounds like you have resigned yourself to having surgery and i wish you the very best with that. please keep us posted as to how things continue to unfold for you. i know yours will be one of the success stories that the rest of us need to hear about.

    best wishes,
    binx

     
    Old 10-12-2009, 04:29 PM   #5
    p313rk
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    Re: Anxious and looking for feedback

    Thanks Binx - it has been an emotional experience at times and yesterday was a really bad day. I think that once I hear a definitive response from a few doctors, I will have that comfort level to move forward. If I was in agonizing pain, I wouldn't even think twice about having surgery. But since my symptoms seem to come and go it makes it more difficult to commit to it.

    Because of you and other people on this board, I've found strength and comfort from people going through similiar issues and it really helps.

    Thanks again and I'll keep you all posted. I'm seeing a surgeon tomoroow affiliated with the Hospital for Special surgery in NYC and getting my questions ready - although I tihnk I know them all by heart now...

     
    Old 10-12-2009, 05:55 PM   #6
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    Re: Anxious and looking for feedback

    Hi Robin...who are you seeing at ***? I saw Sama. Ended up having my surgery with Woodard at New England Baptist in Boston(Sama agreed he was best for me)but I needed the extra encouragement to do it.

    Neckpatient was wrong about the severe pain from severe foraminal compression....I had that too and had very little pain. You get to a point where the pain goes away as the nerve is too badly damaged....not a good sign. As I've said elsewhere, lack of pain is the problem, not the pain itself. Woodard doesn't even like to operate for pain. He waits for function loss or pain diminishing. He's also the doc that does the laminoplasty for relief of spinal stenosis and cord compression without fusion.

    I had 3 opinions and don't regret any of them. Gave me the options I needed to make a good decision. The wave of the future is spine surgery with no fusion so I went that way. Never regretted it even though I later broke my neck(no relation to the surgery). But even the long fusion Woodard did has been great. I'm fused from C3 to T1 and, although it's taken a long time, I am finally off all muscle relaxers and pain meds...even ibuprofen. That's what happens in the hands of a master spine surgeon.

    Let us know what happens at ***.

    And thank you for the kind thoughts you've sent my way...still fighting to keep the arm going even with the dislocations.

    gentle hugs..............Jenny

     
    Old 10-12-2009, 08:07 PM   #7
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    Re: Anxious and looking for feedback

    I have to reply because actually I am not wrong and was correct in the statement that I made. Your statement is correct for your situation. Forminal narrowing can cause pain and no pain. I am including a quote from the American Neurosurgery Board here:

    "Foraminal Stenosis Symptoms
    The symptoms of this condition depend greatly on the extent of the nerve compression and the location of the constricted nerve root. Typically, nerve pain is one of the first frightening symptoms, but tingling, weakness and numbness are also common effects in the bodily region served by the affected nerve. Sometimes, there are other effects enacted by a seriously compressed spinal nerve, which might affect motor ability of a body part or even the some of the autonomic functions of a particular anatomical system. These effects can be very serious, especially when they occur in the upper cervical region, since these autonomic processes are vital to sustain life and health. "

    Personally I was speaking from direct experience. I had significantly severe forminal narrowing where it was 100% occluded and I did have severe pain plus mylopathy from central canal stenosis. In addition I have permament nerve damage - several branches do not innervate the muscles any longer, yet they continue to record noise activity from the nerve sending pain impulses. So I stand by my original statements.

    As for you p313rk I do hope that you get the help you need.

     
    Old 10-13-2009, 04:59 AM   #8
    p313rk
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    Re: Anxious and looking for feedback

    Hi Jenny - Thanks for your encouraging words as always I'm seeing Dr Rawlins. When I looked at the Directory, I didn't see a Dr Sama in the Orthopedic department. Dr Rawlins was one of two Orthopedic Spinal Surgeons that accepts my insurance.

    And exactly what you said, it's the nerve damage that has me concerned and the additional symptoms I seem to have. My left left feels weak, with a restless feeling. I'm off to my appointment in a few mins - I'll reportds back as always. Looking for the day when I talk about something else besides my medical condition.

    All the best to you - please keep us updated on how you are doing.

    Robin

     
    Old 10-13-2009, 03:55 PM   #9
    p313rk
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    Re: Anxious and looking for feedback

    Hello all,
    Back here after my appointment with the Orthopedic Spinal Surgeon affiliated with the Hospital for Special Surgery in NYC.

    After asking me questions about my symptoms, reviewing my MRI's and conducting a physical exam he indicated he did not think I need immediate surgery. He observed the broad disc herniation from the one MRI view, but noted the contrast in the other views was not sharp. When I asked him whether I would eventually need the surgery, he couldn't answer that question, but said that if he thought I needed surgery he would certainly recommend it. I explained my leg weakness but he coould not coorelated it to the MRI results. He did indicate there could have been changes since my MRI (July).

    Overall he gave me the impression of a competent professional who listened to all my questions and concerns and did not talk down to me. Ay one point, my anxiety over this whole ordeal overcame me and I got teary eyed and he wanted to understand why I was so upset. Part of it is that I just don't like the way I'm feeling (and I know so many of you have gone through much more than I have and handled it better). In the end he recommended me to a Neurologist to get to the bottom of the leg weakness. He also suggested I get another MRI with better contrast.

    I'm happy I do not have to rush into surgery and I have to conclude that after 3 doctors have told me. Just want to feel better (like we all do). Guess I need to give my body more time to heal and try to not get over anxious over every symptom I get.

    Thanks all for listening and your good advice.

    Robin

    Last edited by p313rk; 10-13-2009 at 03:57 PM.

     
    Old 10-14-2009, 09:37 AM   #10
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    Re: Anxious and looking for feedback

    Glad you seem to be happy with what you were told. It's so hard when we want relief and can't get it. And any problem with the spine is super scary. Your anxiety and fear is pretty normal. I'm far more worried about folks who don't get concerned...it's like they have blinders on.

    It's actually good that he recommended waiting as there are so many new surgeries being developed. Overseas, there is a big push to develop non-fusion surgeries but we are so careful here, we are the last to get these new techniques. Perhaps by the time you do need surgery, there will be a new and non-fusion surgery available.

    big gentle hugs................Jenny

     
    Old 10-14-2009, 05:46 PM   #11
    p313rk
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    Re: Anxious and looking for feedback

    Thanks again Jenny,
    As usual your comments make me feel better. I'm going to try and focus on other things for now, while I follow-up with the neurologist. Best of all to you. Take care,
    Robin

     
    Old 10-14-2009, 07:58 PM   #12
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    Re: Anxious and looking for feedback

    Hey Robin...hang around with us...we like nice folks here. And you do have a spinal problem so you are part of the group. We need you here for support...to give it and receive it.

    gentle hugs............Jenny

     
    Old 10-15-2009, 04:30 PM   #13
    p313rk
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    Re: Anxious and looking for feedback

    Hey Jenny,
    I'm not going anywhere and I love talking with the rest of you. I hope I can provide as much support here as you have for me... Even if I don't have all the medical know how, I'll try to help people through their crisis.
    Robin

     
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