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Anyone been sent to a neurologist ...

jellyhalljjellyhall Posts: 4,372
edited 06/11/2012 - 8:02 AM in Neck Pain: Cervical
Has anyone been sent to a neurologist to determine what their various symptoms are due to?

I have seen 5 different neurosurgeons now (a consultant and 3 registrars in his clinic, and another consultant for a second opinion). Two have said it is time for surgery and two others (one a consultant) said we would wait, although they didn't say what we would wait for.

Yesterday I saw another registrar after waiting 6 months to see the progression, and she wasn't even sure that my symptoms are coming from my neck. She wants to get me referred to a neurologist to make sure it is not all due to some other problem. Seven weeks ago my second opinion consultant neurosurgeon said it was time for surgery due to the cord compression.

I am so confused and very fed up!!!
Here in the UK there will be a VERY long wait to see a neurologist.

Has anyone else seen a neurologist to determine what is causing their symptoms?

What tests did the neurologist do and was it worth seeing them.

I don't want to have surgery if it is not my neck causing the problems, but everyone else has said that the symptoms are due to the compression on my cord, the compression of my nerve roots and the facet problems due to degeneration (spondylosis).

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Comments

  • Well, have you had a MRI? That's really the only way to make a definitive diagnosis. I can't imagine a surgeon proceeding with surgery without seeing a MRI.
  • If a neurosurgen already did an mri and he was able to see what the issue is and confirmed his findings and thinks surgery is needed then if it has not got beter then more the likely its the same issue,

    If another dr said to wait with surgery i am sure he is just being concervative to see if symptoms might get beter in time, Thats the answer to your question what that ment and reason to wait,

    If the symltoms have got worse then i would go talk to the original dr who made the findings and posibly have another mri to see if its the same or worse now,

    Waiting game might be over with if surgery might be the only answer, Compression on the cord is more serious then just the compression on a nerve so it could be serious enough to look in to if its time for surgery or not,

    If you can get 2 neuro dr,s to agree on the findings then good chance thats the issue,
    Flexicore ADR 2004 resulting nerve damage l4l5 Fusion 2006 same level, 2009 hardware removal with lami !
    2012 scs implant ,
  • jellyhalljjellyhall Posts: 4,372
    edited 06/24/2012 - 7:52 AM
    Yes, I have had several MRIs of my full spine, and they show cord compression in my neck and thoracic spine. (My lumbar spine is now decompressed and fused.)

    It is the compression in my neck that they have been concerned about in the past. They have all said that my symptoms are from my neck apart from a tightening band and spasms around my abdomen, which they say is from my thoracic spine.

    This new registrar yesterday seemed to want to get a neurologist to check what is going on. She didn't say if there was something in particular that made her feel this was necessary, but she went and spoke to the consultant, who obviously agreed with her. He didn't come and see me. He has been overseeing me for over 18 months, but I have only seen him once. He has always said it is my neck before yesterday. I am very confused, but I guess it is better to be safe than sorry.

    Alex, I have been told that my symptoms won't improve because I have osteodiscal bars that are pushing my cord backwards into the back of the spinal canal and indenting the cord. I have no spinal fluid around the cord at these two levels. The last neurosurgeon who said it was time for a 2 level ACDF told me that an accident or even a fall could leave me with permanent cord damage.

    I really don't know what caused this latest registrar to doubt what is causing my symptoms. She did tell me that I should not do any sports and to take care because I have a lot of degeneration in my neck, and showed me where the cord is being compressed.

    A Pain Consultant did mention back in October, that I had a lot of symptoms and that if it wasn't conclusive that it is my spine causing them, then he would refer me to a neurologist to get to the bottom of things and rule out MS and some other very rare conditions that cause some of my symptoms.

    I suppose it is best to get things checked out to be on the safe side. I am interested to know exactly what the neurologist is likely to do. I have already had EMG and nerve conductions studies done, back last August. They showed compression from my neck.
  • Wow you poor thing. You have cervical and thoracic issues and they don't know where to start so they are making sure you don't have ms..... I was. Checked for ms at my request since my cervical headaches and eye pain was so bad. I had a brain MRI and my pcp said it was normal. I read the report it said I had lesions so I showed it to my NS and when we were doing a ct scan mylogram he had them draw my spinal fluid and send it in. It was negative.....

    I have heard that health care across the pond is a whole different game. I wish you luck.

    Julie
  • j.howiejj.howie Brentwood, Ca., USAPosts: 1,732
    I had a chiro send me to a neurologist way back in the late 70,s or early 80,s.
    That's a long time ago and it's hard to remember, but I think they prescribed a tens unit and some kind of a non narcotic med. Everything was to avoid surgery. And all a temporary fix. I don't think I had a MRI at that time.
    One pill masked the pain so well, that I injured myself more. 'cause I felt so good.
    Because of that I've refused to see one ever again. It was a work comp deal and I'm in the U.S. so I figure things are quite a bit different here.
    good luck,Jim
    Click my name to see my Medical history
    You get what you get, not what you deserve......I stole that from Susan (rip)
    Today is yours to embrace........ for tomorrow, who knows what might be starring you in the face!
  • I had a suspected TIA 6 weeks after my lumbar fusion, when I had vision disturbance and lost the ability to read. After that, I had various tests while I spent a day in hospital. They did a brain CT scan, cartoid artery ultrasound and various other tests including blood tests. Everything was normal so they told me that it must have been a migraine.

    This may be one of the things that is concerning this registrar, but I suspect there are some other things that she is not happy with.

    I hope that I don't have to have my spinal fluid checked. I hate needles!!

  • Jellyhall,

    I had alot of symptoms from my cord compression, balance problems, atypical reflexes in all four extremities, poor concentration etc.

    My NS said it was from something called "Cenral cord syndrome"(google it), that explained alot of what was happening and why, and helped me understand the need for immediate surgery. Mine was a traumatic injury and a fracture piece was compressing the cord.

    5/10/2010 will be the 2 year anniversary, it has tkaen me long while, but have had multiple surgeries for the other injuries.

    I did also fx T5, L345 at the same time, no surgeries there, but the thoracic one does cause alot of problems that were tough to sort out as to whether it was cervical, thoracic or my left shoulder, which was crushed.

    I am glad I had the ACDF45, it resolved alot of symptoms immediately for me. I still have other issues, but I don't worry about losing my ability to walk now.

    I take a gentle yoga class, swim, and take walks 4-6x a week, what a blessing. Even off the major narcs now.

    I hope you can come to a decision that will be all you need it to be. Good luck at your next appt.

    Been there,
    Dee

  • for your kind reply and sharing some of your story.

    I saw my physiotherapist today who was amazed that after all this time, and after so many neuro appointmentsss, they are now thinking that they should check to see what is causing the symptoms. Up until now, everyone has said it is from my neck.

    I also got a letter today with a follow-up appointment with my second opinion neurosurgeon who said that it is now time for surgery to deal with the cord compression. This appointment is to ask him all the questions that I was too stunned to think of 7 weeks ago at my last appointment.

    Before my spine problems, I only used to go and see my doctor about once in three years. Now I have so many medical appointments for so many different problems. I feel like a hyperchondriac!

    I'll let you know when I make a decision.

  • Jellyhall, I haven't been on lately...8 wks. post op now and few steps back and few forward but I'm getting through my recovery okay. I thought you were scheduled to have your surgery so I must have misunderstood. I don't understand why you're having to see so many doctors. When I got my two neuro opinions and was still in shock about my neck situation I thought to myself how I could just keep going to doctors and getting more opinions and I don't think any of them would be the same opinion. I remember thinking that going to endless doctors for opinions would drive me crazy. My 1st neuro wanted to do 3 levels and the 2nd neuro (who I decided to have do the surgery and who I had much more confidence in) said he would do only 2 levels and be less aggressive than the 1st neuro. What they did agree on was my MRI and the condition of my neck. Your case is much more complex than mine with your additional back situation and your stroke history, but our neck symptoms are very similar. Both of the neuros I saw agreed that my foot, leg and upper body symptoms were due to my cervical myelopathy, and both warned me like you, that if I were in a serious auto accident or took a bad fall I could have permanent paralysis so I felt like I had no other choice but to have the surgery, so I just jumped in. They told me I had no alternative treatments available and would just get worse. Is that what your neuros are telling you? I wish you could find a good spinal clinic where you have confidence in your doctor's opinion now that you have many other opinions too. It can be so confusing for a patient if there are too many opinions and your course of treatment should be consistent. It just sounds like so many doctors are involved in your case and your frustration must be through the roof. Stay in touch and I hope you can come to a decision soon. I feel for you that you're being run through the ringer like this. Big hugs,
    xoxox
    Meg
  • Hi Jelly!

    I saw a neurologist when I presented with obvious cervical myelopathy symptoms. He performed a nerve conduction study on my right arm, which supposedly would tell if my nerves were impinged or if I had carpal tunnel syndrome. The results were negative (I had an MRI a month later showing a myriad of things such as bulging discs and severe stenosis). Additionally, even though I was unable to lift more than 5 lbs and was pretty much disabled for over 6 months while trying to be diagnosed, he saw no need to recommend me for disability despite knowing I needed a surgery that has a long recovery period. My surgeon that operated on me last month couldn't believe I was even able to walk around after seeing the damage inside. Thus, I would not recommend the neurologist. I hope this all gets resolved for you >:D<

    Cheers,
    Robin

  • for your compassion.

    I have not scheduled surgery yet. The reason that I have had so many appointments, is because my neurosurgeon has been 'watching and waiting' every 6 months, for the last 18 months. They have never fully explained exactly what it is that they are waiting for! They have said that I will need surgery at some point, but that we should wait for the time being.

    I have been getting some very strange neurological symptoms, and one that I have been worrying about is the spasticity or stiffening spasms that I get in both legs and feet as I wake in the morning. Some days my abdoment also stiffens up, causing my back to arch right up off the bed. I am now getting this when I get up from a chair after sitting for a long time. My right foot, in particular, turns inwards when I get this, with my big toe sticking up. Now, in a relaxed position, my right foot turns inwards slightly. I have been worried that if this continues, I will start to have trouble walking on that foot.

    Because of this, my GP, who is also concerned, referred me for a second opinion. That neursurgeon has suggested a 2 level ACDF, but we haven't scheduled the surgery yet. I was waiting for the 6 month follow up appointment, which was last week. This is when they said that they aren't sure that my symptoms are coming from my neck and want to refer me to a neurologist. I feel very confused. I can't go ahead with surgery, when there is this doubt about what is causing my symptoms. I hope I don't have to wait for too long to have this appointment. I don't know if there are any particular symptoms that she is thinking of, she hasn't said, but I feel that she musst suspect some other condition.

    Emotionally, this is such a roller-coaster. I was getting my head round the idea of another spinal surgery, and now I am back to waiting. Up to this point, everyone I have seen has said that this is my neck causing the problems, apart from a few that are from my throacic problems.

    I am grateful that I am not in anything like the pain that led me to a lumbar spinal fusion. I do get a lot of severe occipital headaches that last for days, but even those can usually be managed by taking and layering a couple of different over the counter meds that the Pain clinic told me to use.

    I'll let you know when I know something! :S

  • I have had EMG and nerve conductions studies done back in August, and they showed that I have compression in my neck, but NOT carpel tunnel nor compression in my elbow. They did not test my legs, which I was surprised about as I have all sorts of symptoms in my legs and feet.

    My MRI scan showed lots of spondylosis throughout my neck, with compression of the cord at C3/4 and C4/5 where the cord is being pushed backwards and indented with no spinal fluid around it at those levels. There is not any high signal on the MRI scan.

    I have hyperreflexia in my legs and arms but I don't have Babinski reflex, clonus or Hoffman reflex. I wonder if this is why they are waiting to do surgery. No-one has really explained their thinking, which leaves me wondering and guessing what it is that they are waiting for.
    This second opinion neurosurgeon was far more communicative and spent time explaining why my cord would be at risk if I had a fall or accident.

    I am still working, although there are some duties that my surgeon has said I must avoid.

    I also hope that at some point, in the not too distant future, I will know what is going on with me and that there will be a plan to deal with it.
    Thanks for your support.
    >:D< >:D< >:D<

    Robin, I have just noticed that you had a titanium cage with your ACDF.
    Did you have any other support of the cage, such as a plate?
    My neurosurgeon has said that he will do the surgery using titanium cages in place of the discs. I am pretty sure that he said he won't use any graft as the bone will grow through the holes in the cage, and that he won't use a plate and I won't need to wear a collar. This seems very minimalistic compared to things I read about ACDF. He says that it will be fine, but I would love to find someone else who has had an ACDF with only a titanium cage and had a successful fusion.

  • Hi again Jelly,

    Yes, my doctor used two plates and 8 screws. Additionally, the fusion material was my vertebrae that they ground up then placed inside the cage. Not sure if this has helped the fusion process as I didn't see any bone growth in my xray, but I am not a doctor ;-) I have to wear a Miami J hard collar at all times (except a shower) for 3 months. That is strange that your doctor says you will not need to wear a collar. As much as I hate mine, if I didn't have it I know I would hurt worse. My neck hardly has the strength or the stamina to hold my head up for more than 10 minutes without assistance from a pillow or something. I hope you feel better! Time for me to rest, not having a good day, pain-wise.

    Cheers,
    Robin

  • It sounds like your neurosurgeon has you covered on multiple fronts.

    I am seeing mine next month, and I will check then that he really did mean no graft, no plate, no collar. I don't want him to think that I don't trust him, but I would love to hear from someone else who has had a successful ACDF surgery with only a titanium cage in place of the removed discs.
  • Well I had my neurosurgeon appointment, but he had to do an emergency surgery after a car accident, so I saw his registrar. He said that we should do a 2 level surgery, but that same morning I had seen the neurologist. We decided that we would wait and see what the neurologist decided was causing my symptoms. It sounds like whatever is causing my symptoms, the 2 level ACDF is being recommended to stop the compression on my cord and the risk of permanent damage, especially is I was in an accident or fell.

    Meanwhile, I am still waiting! I have an appointment to see the neurosurgeon in November, but I hope to get some answers before then!!

  • welshladywwelshlady Posts: 121
    edited 06/17/2012 - 6:16 AM
    Hi Jellyhall, isnt it frustrating when others have such control of us without the urgency that we feel? (or is that just me :-() . so you have one answer, no matter what you need the ACDF it seems, but i guess it makes sense to get a full picture before irrevicable decisions are made... but that just seems to leave you waiting. how are you at playing patience? i hope you can get in before then, are you on the cancellation list with the neurologist? wishing you well and thinking of you!

  • I am not on the cancellation list to see the neurologist, but he did say that he thought that I would hear from him before the end of June. He also said that he may want me to have some nerve testing first, so time is running out. This will not be the first time that I have had to wait a VERY long time to get some answers.

    I think I am getting better at patience. Or is it patients? I am trying hard to just get on with things and pretend that all is fine. Not easy when you get lots of strange symptoms every day!

    My hubby is having some health issues and I think he will need to have surgery before I do. His problems are proving a distraction to my problems.

  • Hi Jellyhall,

    I was sent to see a Neurologist by my Spinal Surgeon as after my ACDF in September 2010 I developed a very bad tremor in my right hand and some loss of balance. The Neurologist examined me and sent me for a brain scan which fortunately was clear. He told me that I did not have Parkinsons but did have some of the symptons. He felt that all my problems were being caused by severe nerve damage as a result of my ACDF and that it would take a long time for them to heal. Some nerves he said might never heal. Hope this can be of some help to you. I live in UK. Take care and warmest regards from across the pond.
  • jellyhalljjellyhall Posts: 4,372
    edited 06/21/2012 - 11:18 PM
    Hi Wonderboytwice,
    We are both on the same side of the pond.
    I have had a brain mri scan but don't know what it showed yet. The neurologist had it there at my appointment with him but said he liked to talk about medical history and do a neurological examination with an open mind. I thought we would look at it together after that, but my appointment ended. I am still waiting, a month later, to find out what he thinks is going on with me. I have been told that they want to rule out MS and some other rare conditions that cause my symptoms. They didn't name the other conditions.
    Some of the neurosurgeons, and particularly the second opinion surgeon, who talked openly and explained things very thoroughly to me, did say that he felt that all my symptoms could be caused by the high cervical cord compression that I have. He suggested a 2 level ACDF to get the compression off my cord to stop the progression of damage to it and reduce the risk of cord damage if I was in an accident or had a fall. He said I may well be left with at least some of my symptoms. I wonder what he will think of me being sent to a neurologist to rule out MS. They have copied him in to the letters, so he will know. I do feel that there is no harm, in fact it makes sense, to rule out other possibilities of what is causing my symptoms. They have said that some of them are coming from my neck compression, but that there are so many that there may be something else going on at the same time.

    Thanks for sharing your experience with me. What lelvel did you have your ACDF? I think that severe nerve damage can be caused either by a neurological condition or from compression damage, which is why the symptoms are the same. The puzzle is to find out what it is that is causing the nerve/cord damage.

    I hope one day to know what is going on with me!
  • Hello

    I'm also in neuro-limbo. I definitely have some C-spine issues but my GP is more convinced that it's more of a neurological concern and has ordered an MRI scan. He gave me the choice of a referral to a neurologist who would then decide whether I need a scan, or just go directly for an MRI scan and then see whether to go to a neurologist based on what the scan might show. I decided I'd have the scan as I didn't want any more delay waiting for appointments in the hospital system.

    Like you, I have some conditions that need to be investigated/ruled out and maybe the cervical spine issues are a coincidence in my case. MS is notoriously difficult to diagnose unless it follows the classic pattern and signs and plenty of people have inconclusive MRIs. I'm a bit scared of having the MRI in case there is something sinister but I know I have to have it. I dont think the GP is ordering a neck MRI though I think I should have one. My neck and upper back is giving me grief right now plus the ever present cervicogenic headache on my 'bad' side. Perhaps my symptoms may turn out to be something else but for now I'm back in the system, waiting for my scan appointment. This limbo land isn't a good place to be hanging around!
  • jellyhalljjellyhall Posts: 4,372
    edited 06/22/2012 - 9:49 AM
    It sounds like we are in similar situations. I suppose I was lucky that my Pain Consultant felt that I had been waiting long enough for a definate reason for ALL my symptoms, so he made an urgent referral for me to a neurologist and then to save time, he also ordered a brain mri scan. That meant that it all happened quite quickly, but here I am, a month later, still waiting to hear what is going on.

    Have you had a cervical mri done at all? I hope you don't have to wait too long before you get some answers. We'll have to stick together as we travel through this limboland!
  • Janee, your symptoms are similar to mine and I think that you need to get a cervical MRI. It's better to know what you are dealing with. I had no idea of my condition until it was severe. Don't wait too long if you can control it.
    2011 ACDF C5-6 for Spondylosis with Myleopathy
    2012 L4-5 herniated disc and hernated disc at C4/5 2013 Taking Amitriptyline for headaches
  • bookcatbbookcat United States Posts: 66
    I have a neurologist who is committed to helping me get the best care possible. That being said, after 4 NS/OS opinions and my decision to move ahead w/surgery as a result, the neuro has come up w/a new approach to use before going to surgery. The hope is a better surgical result.

    In general here in my area (So Cal in California, US), the neurologists are very conservative about doing surgery and will try anything that seems appropriate first. The hardest part for me has been the waiting, worrying about what to do, and hanging on for the next appointment. Your situation is so much more out of your control. The stress must be incredible and I will send impatient thoughts in the direction of your neurologist's decision schedule.

    You can google to see what other diseases in addition to MS need to be ruled out.

    However, the neuro is working closely w/my surgeon. Both agree on the dx: cervical spondylotic myelopathy. I see the surgeon this week and will ask for a surgery date (2-level ACDF C5-7). The neuro is leaving it up to the surgeon to decide if I should continue to try the alternative or go directly to surgery.

    Best of luck; I hope you hear from your neuro soonest.

    Catherine
    3 PLIFs (L2-5): 2003, 2005, 2008
    Catherine
    PLIF L1-3 6/13
    ACDF (C5-7) 8/12
    PLIF (L2-5) 2003/05/08
  • Hi Catherine,
    It sounds like we are in very similar situations. You are right about all this waiting being very stressful. I try to get on with my life and forget about it all until I hear something, but that is impossible when I have so many symptoms that occur daily.

    My original diagnosis was cervical spondylotic myelopathy, although I only have some symptoms that indicate myelopathy. I have brisk reflexes throughout but I don't have Babinski or Hoffman's signs and I don't have clonus. My cord compression is at C3/4 and C4/5, so those are the levels that they are proposing to fuse.

    I see you have had lumbar spine fusions too. I was warned that I would always have problems with my back, even after my lumbar fusion, due to lots of degeneration throughout my spine, but I hadn't bargained on needed more surgery.

    I'll think of you this week for your appointment with the surgeon. I would imagine that in the USA, you won't have to wait as long as we do here in the UK.
    What day is your appointment?
    I'll look out for how you get on.

  • Hi Jellyhall

    My ACDF was at levels 3/4/5 and my Posterior Operation was at levels 5/6/7 plus plates put into my facet joints to help my balance. Hope this helps you. Where did you go to see a Neurologist? I live in Herts. I next see my Spinal Surgeon on 27/7/12 and my Neurologist on 18/9/12.
  • I am in Sussex. The levels they are saying they will fuse on me are C3/4/5.
    I have a regular follow-up appointment in November with the neurosurgeon, but am hoping to get some feedback from the neurologist well before then.
    It is frustrating to think that they probably know what they are going to tell me, but I have to just wait until they get back to me.
  • bookcatbbookcat United States Posts: 66
    I don't have to wait as long here in the US as you do in Sussex. My surgeoapp't is Wed 25/6/12 and I will keep you posted. Thank you for your kind support in the middle of a tough situation. Please keep all of us posted. I'm channeling decision thoughts to your neurologist right now.

    Catherine
    Catherine
    PLIF L1-3 6/13
    ACDF (C5-7) 8/12
    PLIF (L2-5) 2003/05/08
  • Hi Jellyhall

    Sorry but my name is Ally not Nick! Worst problem after getting the above levels fused was swallowing and I am still suffering neck pain due to my recent Posterior operation on C5/6/7 and Facet joints. The operations have also given me a bad tremor in my left hand but fortunately I am right handed. Why are you seeing a Neurologist and not a Spinal Surgeon? I have a world renowned Surgeon at Stanmore. Warmest regards. Ally.
  • Thank you for sending your kind thoughts this way. I hope they will remind my neurologist that I am still waiting to hear from him!
    We can support each other through these difficult days.

    xx
  • I am very sorry, I was so sure that you were Nick! Whoops!

    I have heard that it is likely that you will suffer more with swallowing problems with the higher level cervical fusions.
    So you have had just about your whole neck fused! How is your range of movement now?

    I have seen lots of neurosurgeons! 2 different consultants, and 4 neurosurgeon registrars. Some have said sugery now and some have said that we should wait. Now I am seeing a neurologist to rule out MS as they seem to think that at least some of my symptoms may be coming from something else.

    My second opinion neurosurgeon (who I think I will use) did say that all my symptoms could be coming from my high level compression of the cord. He was very frank with us and did say that he may need to do another surgery from the back afterwards, but that he would do an anterior fusion first to see how much relief that gave me. He said if the surgery doesn't relieve my headaches then we could try ES injections. He also said that the other levels in my neck could go later, needing more fusion surgery, because I have a very degenerated neck. He said I was very young to have so much degeneration! I wish! I have also lost my lordosis in my neck at the worst levels.

    I was nearly sent to STanmore for the second opinion, but it was decided to send me to a neurosurgeon in the same hospital as all my scans and records were there. Hospitals in different hospital trusts don't seem to share the information.

    How have you found the recovery from both these fusions?
    I dread the thought of needing even more surgery at a later date.
    It was bad enough being told that I now need a cervical fusion after having a lumbar fusion.
    I even have two protruding discs in my thoracic spine, but the surgeon has said that he doesn't propose surgery at those levels (very tough recovery) but that we could try ES injections.

    How did my spine get into such a mess?!!
    I hope that you will have relief of your neck pain soon.
    Take care,
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