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Shocked about my MRI....

notsonnotso Posts: 56
edited 06/11/2012 - 8:58 AM in Neck Pain: Cervical
I'm new to this site...glad to find it. I would appreciate any opinions or comments...my saga: 57 y.o. female, very healthy and active except for some surgeries over the years like gallbladder, hyster..Had some low back muscle strain issues for years but overcame with exercise, stretching, yoga, OTC meds, etc...Started running again two years ago but do a very slow plod/jog. Two weeks after a 10K run in October where I had experienced lots of low back pain I started to experience pain, numbness, tingling, burning in first one foot, then both, then legs, then arms and hands, and with pins and needles all over. Very painful. These symptoms have since decreased very slowly. On low back MRI have two bulging discs and osteoarthritis of back with some spurring so I figured it would heal and the symptoms would go away. Went to a neurosurgeon to get checked out and he said my MRI didn't warrant the symptoms I was having. He ordered a c-spine MRI and it came back with severe critical stenosis at C5-6, with the spinal canal measuring 3-4 mm. and complete loss of cerebrospinal fluid. Moderate to severe stenosis at C4-5 and C6-7. I am so shocked and have never had any neck issues at all and no neck pain. NS is recommending a C4 to C7 ACDF with plate. I've been really freaked out about this outcome, only have occasional pain in feet and numbness and tingling in both legs and arms and hands but the pins and needles and pretty much the burning feeling has gone away. I was going to get a 2nd opinion but would have to wait until February to get in with a good NS in my area so I scheduled my surgery for 1-9. Sorry to go on so long but would appreciate any similar situations that anyone might have had. Most everyone I've noted after reading posts seems to have had pain issues before their surgeries and I'm not having any pain really but I'm so worried that if I put off this surgery I'll have permanent nerve damage. Thanks for any input.


  • dilaurodilauro ConnecticutPosts: 9,841
    Spinal conditions can be very frightening.
    MRI reports can be very difficult to understand and comprehend.

    Your situation sounds difficult in the fact that you went from one situation to a whole new one very quickly. You started to deal with herniated lumbar discs and arthritis. (Osteoarthritis for so many of us, especially as we approach our golden years is so normal . for more details look at: Arthritis

    I would look at a second opinion. Anytime surgery is being discussed, it is very important to get another pair of eyes to look at your situation and come up with action plans.

    Surgery is a major step. Before that is considered, many times conservative treatments need to be used.
    But that is something only your doctors can approve and recommend.
    Take a look at: Treatments

    You will find all different types there
    Ron DiLauro Spine-Health System Administrator
    I am not a medical professional. I comment on personal experiences
    You can email me at: rdilauro@veritashealth.com
  • MetalneckMetalneck Island of Misfit toysPosts: 1,364
    My MRI's both cervical and lumbar still shock me to this day .... this is after 5 surgeries on my neck! ...waiting as long as posssible on my ruptured lumbars!

    Good doctors and best wishes for you. Keep us posted!

    Spine-health Moderator
    Welcome to Spine-Health  Please read the linked guidelines!!

  • Thanks for the reply dilauro...Yes, I've had arthritis in my hands and joints for years and knew I had osteo also in my lower back...guess it makes sense that it's in my neck too...I know I should probably wait for a 2nd opinion, I'm talking again to my P.A. today to see what she says again. This is so new for me I'm probably panicking a little, it's so scary. The NS I'm going to has such a good reputation and we know people in our area who have had him do their neck surgeries and they had good outcomes, but I know a 2nd opinion is valuable too. It's just so hard as I'm finding out to maneuver thru the busy schedules of these neurosurgeons and not have it take so much time. This last weekend I had so much numbness, tingling and burning in my legs and then I felt some tingling in my face so I felt like I'd better get this surgery over with...probably not a good way to commit to something so huge. Again, thanks for your reply, it is much appreciated!
  • Thanks for the good thoughts!!
  • It is good to see that you are researching and being cautious before heading to surgery. This is a big deal. Your symptoms sound pretty serious, and given the results of your MRI, I think you are wise to be seeing a surgeon. A 2nd opinion is always important when it comes to spine surgery.

    I entered the world of spine surgery with a 3 level ACDF, C5 to T1. I didn't take it as serious as I should, although I did get a 2nd opinion.

    Do you know whether your surgeon is proposing using your own bone, versus cadaver bone? My research has led me to believe that your own bone is much more effective when having a multi-level, as there is more risk of non-union. I didn't fuse the first time around, and I used cadaver bone. 2nd time was with my own bone, and there no problems with fusion. With my second surgery they did use a product called BMP (bone morphogenic protien) in the back side. I am told they should never use it from the anterior (front) approach.

    Also, my surgeon told me I could return to work within 2 weeks after the 3 level. That didn't happen! I know my sister was able to go back to work after her 1 level rather quickly, but I know of no one with a 3 level that returned that soon. The recovery involved sleeping in a recliner for a while because it was too uncomfortable to lay in bed. I wore a collar for several weeks post op. What is your doctor proposing?

    Some people have rather sore throats post op. I didn't struggle much with that, although soft foods did feel good on my throat: yogurt, puddings, shakes, etc. Mashed potatoes were too thick and made me gag at first. But I did eat a full meal with meat the first or second day. I can't remember all the details, as it has been 5 years.

    I hope this gives you some things to discuss with your doctor. Ask your doctor what to realistically expect during your recovery. Keep asking questions here. We members of spine-health love to help others going through the same things we have been through.
    Surviving chronic pain one day at a time, praying for a reprieve because living another 40 years like this doesn't sound too fun!
  • MetalneckMetalneck Island of Misfit toysPosts: 1,364
    About using your own bone (harvested most typically from your illiac crest) v.s. cadaver implant.

    Just like Cindy I suffered through a failed surgery when they used donor bone. (non-union after 1.5 years) v.s. fully fused at 6 weeks with my own bone.

    IMHO anyone who says that the harvest site hurt more than the surgery ... must have not had very serious neck pain to begin with. A number of people are put off of harvesting their own live bone due to comments about pain or complications from the harvest site. - For the doctor .... its one less surgery for them to do .... but if they are as serious about a positive outcome .... harvesting is a no-brainer.

    Of course as always .... do your own research and follow the advice of your physician - but at least be knowlegable about the difference and other peoples experiences.

    Regarding the multiple plates .... I would prefer to get it all locked down in one surgery .... than have to have another surgery within a couple of years.

    Read up on adjacent disk disease/syndrome post fusion. And keep comming back to let us know how you are feeling what the plan of attack will be!!

    Warmest Regards and prayers for your health and stability!!

    Spine-health Moderator
    Welcome to Spine-Health  Please read the linked guidelines!!

  • Thanks Cindy and Metalneck for the info. I'm beginning to realize that I know very little about neck issues and this ACDF procedure mainly because this is all so new. I'm ambarassed to say that I don't know if the NS is planning to use donor bone or my own...I only got to spend about 15 minutes with him regarding my MRI results and that's when he told me he wanted to do this surgery. He didn't have time to let me go and get my husband from the waiting room so we would have two of us listening and he never mentioned the fusion material. And I'm having such difficulty getting any answers from his 'busy' office, his receptionist told me it would be two months before I could see him again and yet he wanted me to schedule the surgery within weeks. His office told me I could schedule an appt. with his nurse if I had more questions and I have yet to hear back from her office person who schedules her appts! I am starting to feel foolish for scheduling the surgery because I have so many questions that I don't feel like I'm going to get answers to before the surgery and I'm getting a little mad. How can the NS expect me to be comfortable with the surgery if I can't talk to him at least one more time with my questions? I was told this morning by one of his receptionists that his nurse's scheduler (for her appts.) was very busy. I'm about ready to cancel the surgery and go see the 2nd opinion NS I was going to go to, if only for the fact that his office staff was so much nicer when I scheduled that appt. that I cancelled yesterday. I'm feeling a little lost...the 2nd opinion NS had read my referral papers from my PCP and had read the c-spine MRI and instructed his staff to call me and get me in as soon as possible so I took that as a signal that I had better go ahead and get this surgery scheduled quickly because the 2nd opinion NS thought my problem was severe also. I'm tired of second guessing everybody. Sorry to rant...I'm a nurse and I hope during my nursing career I never treated anyone like this...
  • I think I am reading this correctly, that the surgeon who will be operating saw you only for 15 minutes and is not planning to see you again prior to surgery. Did he go over an informed consent with you, explain the details of the surgery, tell you what kind of hardware he will be using, etc? This is something the doctor should be doing, not his nurse (in my opinion). So if he hasn't discussed these things with you, and won't see you again before surgery, I'd be freaking out. From what you write it sounds as if this surgeon doesn't have time for his patients pre-op, so I wonder what will happen post-op. Will he pass you off to someone else to take care of you?

    I think it is important to have someone who will be there to provide the after care. I was surprised to find that my surgeon's assistant was the one who took care of me post-op (first surgery). I had severe complications, and even with that, it was still the PA, not the surgeon who was trained to deal with those complications. I honestly feel that if I had better care in the critical time period following my problems, that I may have had a better outcome long term. Please make sure whomever you choose for surgery is going to be there, both pre- and post-op. You deserve to have good care.

    My advice: go get that second opinion. Maybe you'll like that surgeon better. Don't let anyone cut on your spine without being totally confident in him.

    Surviving chronic pain one day at a time, praying for a reprieve because living another 40 years like this doesn't sound too fun!
  • Cindy, No!! The NS only spent about 15 min. with me and only mentioned that the surgery is done thru the neck, I would be in a neck brace for six weeks, no driving and he went over possible risks of the surgery such as blood clots and the usual risks of surgery. He showed me what he was seeing on my films which was jibberish to me at that point (and I'm pretty good with medical jargon) I was never even told the name of the procedure and had to ask the surgery scheduler what he was planning to do. No talk of consents tho I'm sure that would have been taken care of in the hospital I guess. He never mentioned hardware, or donor bone vs. my own. I've only found out about those things from this site since my appt. I felt a little blindsided because my PCP had said my c-spine MRI was pretty normal so it was hard to absorb everything the NS was telling me. When I asked him if I could get my husband out of the waiting room to come and listen he said no he was too far behind in his schedule. As I was leaving his office the surgery scheduler wanted me to schedule the surgery that very moment and I told her I needed some time to talk to my husband and would probably make another appt. with the doctor to ask more questions. She said fine and then she called the next week to yet again schedule the surgery and I told her I didn't even know what the name of the procedure was that he wanted to do so she told me and I told her I needed a little more time and that I really wanted to see him again before I scheduled it. When I called to make that appt. his receptionist told me it would be two months until I could get back in with him, she said she was going by the doctor's notes which said that I should go back to my PCP and follow up with him (the NS) in two months, I told her that was if I had decided NOT to have the surgery, not if I had decided to have it. She argued with me and was so abrupt and transferred me to the surgery scheduler. I gave in and scheduled the surgery. Again, I asked if I would be seeing the NS before the surgery to ask him questions and she said probably not. I feel like the questions I have are important and at the point where I'm being wheeled into the O.R. it would be a little late to be asking questions anyway but she sounded like I probably wouldn't even see him then! Yesterday I was told that I could talk to the receptionist if I had questions. I couldn't believe it. I've decided to cancel the surgery and make an appt. with the 2nd neuro, and will use him for the surgery, he also has a very good reputation. Like your situation he also uses PA's but they want to get me in in the next couple of weeks and my appt. will be when he is there so he can see me briefly along with the P.A. I'll take that over asking my questions to the receptionist or the surgery scheduler. I've had several surgeries with specialty doctors (OB/GYN, G.I.)and I have never had this kind of experience with an office staff or a doctor that is so busy he doesn't have time for his patients. This has been unbelievably frustrating for me. Is this something that is particular to neurosurgeons?? I'm very frustrated...so I'm going to take a deep breath, take my time (I'm lucky that I'm not in any pain) and relax. I'm learning more and more from this site and everyone's posts. I was so shocked two weeks ago when this surgery talk all came about and I felt panicky but I'm going to do this the way I want to and not be rushed. Again thanks for your response and I'll keep you posted. I hope I have a better experience with the 2nd NS.
  • I agree with the others that you need at least another opinion.

    I am particularly shocked to hear that the neurosurgeon wouldn't allow you to go and and your husband. How long would that take? He must realise that you need support to get your head around this and that another pair of ears to remember what was said would be helpful. That isn't taking into account that your husband would like to hear what he has to say about your condition and how he plans to treat it.

    If he treats his patients like that before surgery, it makes me question what he would be like after surgery, once he feels that his work is done. There are surgeons who are very difficult to get hold of after surgery, which is horrible when the patient is worried or in pain. Other surgeons make themselves available and will answer questions or concerns about the recovery. I know which type I would prefer!

    You will not be the first patient that he has met who needs time to get their head around having spinal surgery and has questions and uncertaintities about it. Perhaps this is how he treats them all.

    I am in the UK and it is normal here to have long waits to see spinal surgeons but I can't imagine any surgeon not allowing a patient the time to go and get their husband so that they could be present and ask their questions too.

    Please do let us know how you get on.
    You have lots of people here who will support you through all of this.

  • MetalneckMetalneck Island of Misfit toysPosts: 1,364
    In my case and in my experience - I had a wham bam thank you 2 level ACDF done by a surgeon who reminds me of your first NS.

    The procedure was an anterior plate only with cadaver implants. In my case I spent one and a half years of post surgical progressive complications.

    I finally said the heck with this and made an appointment with an orthopedic surgeon. He put my MRI up on the viewing screen and said "we will have to redo the whole shabang". Believe it or not it was music to my ears. He proceded to explain that I have two levels of psudo-arthrosis (non-union) and that my cadaver implant had not only not fuse ... but they had actually impacted down into the vertabrae. (thus the pain - trouble swallowing etc.)

    I had also blown another disc from the added stress and pressure. THis brought me to my current status of a three level anterior - posterior with 2 levels of corpectomies (cage) as my picture shows. 8 days in the hospital ... 3 days in ICU ... 5 surgeries over a three day period to "fix" everything that went south from my first 2 level overnight ACDF by a Neurosurgeon. Which brings me to my point.

    I am a firm believer that I have orthopedic problems causing neurological symptoms - not the other way around. I feel that I was (and am) best served by an Orthopedic Surgeon who specializes in complex SPINE surgery. Not the efforts of a Neurosurgeon.

    Bottom line is that you may want to consider a second or third opinion fron an Orthopedic Surgeon who specializes in spinal surgery.

    I am not a doctor nor have I ever even played one on T.V. .... My comments or inferances are based on my experience only, and you should continue to do your own research and make your own decisions. Kudos to you for not accepting the treatment (or lack there of) of the doctors staff or the doctor himself.

    I can tell you are not one to be pushed around!!


    Warm Winter Regards,

    Spine-health Moderator
    Welcome to Spine-Health  Please read the linked guidelines!!

  • Jellyhall, thanks so much for your input and you've brought up some great points..including about aftercare. This morning I cancelled my surgery and have an appt. with the new NS, and I'm feeling much better prepared going into this appt. believe me. You appear from your history that you are waiting for surgery, or trying to wait until you feel like you absolutely have to have it, being the 6 months? That is another question I want to ask, what if I just wait a while and see what happens since I'm not having any further pain, at least for right now. I have to wait a few weeks for this next appt. and will spend that time getting all of the knowledge I can get about my condition.
  • Dave, You've brought up an important consideration regarding orthopedic surgeon vs. neurosurgeon. I've checked out the neurosurgeon I'll be seeing for this next appt. and I think I'm happy with his background. He's the founder of the Nevada Spine Center, as a neurosurgeon he specializes in complex spine surgeries and other facets of spine issues, including rehab. He has such good training with spinal issues. One of his P.A.s I will also be seeing specializes in spine problems. Not only that but the woman who I talked to this morning and who had called me on Monday (she's their 'new patient coordinator and patient/doctor laison') was very nice about my change of mind and more than happy to reschedule my appt. She had given me her direct line to reach her if I changed my mind and wanted to reschedule when I cancelled my appt. the other day. That's more like it, what a difference. I just didn't feel like I was talking to the receptionist about my concerns. What is sad is that I've heard the original NS I've been dealing with is so good at what he does but I think there a huge disconnect with his staff and patients and I think he has gotten so busy he's lost touch with why he's doing what he does and the human side of it. So I'm hopeful that this new plan will have a good outcome now and am so much more at ease than I was. Thanks so much for your input and opinion, I really appreciate it.
  • MetalneckMetalneck Island of Misfit toysPosts: 1,364
    very positive attributes - physician(s) and staff alike.

    Like I said ... you don't sound like someone who will be pushed around!!

    You (as we all do) deserve the best care our insurance (or endless money supplies) can provide!!

    Keep us posted!!?

    Spine-health Moderator
    Welcome to Spine-Health  Please read the linked guidelines!!

  • It sounds like you are on a sharp learning curve. Going from knowing practically nothing about spinal problems and their treatment to finding out a whole lot in a few days!

    This will mean that you have a much better idea of what questions to ask at your next appointment. I suggest that you do lots of reading, particularly on the Spine Health 'conditions' and 'treatment' sections (at the top of the page) There is a thread of questions to ask your surgeon, which I believe is in the FAQ section. If you can't find it, let me know and I will send you a link. :-)

    While doing your reading, I suggest that you have a notebook handy and write down your questions as you think of them. If you are anything like me, you will think of a question and as soon as you read something else, the question will vanish!

    It is not my decision to wait for surgery. In fact I had an appointment in October with a neurosurgeon who said he was recommending a two-level ACDF on C3/4 and C4/5. He talked about the surgery, risks and percentages of success. He also said that the sooner it was done, the higher the chance of a successful outcome. Then he went to speak to the Lead Consultant for about 15 minutes and came back and said that there was a change of plan. That the other surgeon was far more experienced and that he had said we should wait, so that is what we would do.
    Talk about an emotional roller coaster.

    My physiotherapist spoke to someone at the Neurological hospital about this appointment and the change of plan, and he was told that they thought that as my whole neck had so much spondylosis (degeneration) that they were waiting as long as possible because of the risk of the other levels going. (Read about adjacent disc disease after a fusion.) Also the fact that there was very little change since the MRI that was done a year before, means that things are not progressing quickly.

    I must say that I have been told to be careful and not to take part in any contact sports. I know that there is a risk to me if I was to be in a car accident or had a fall. I have been told that almost certainly, I will need to have surgery at some point.

    Just because you are not in pain doesn't mean that things in your neck are not serious. A friend of mine had surgery and didn't have any pain. His only symptom was numbness in his hands.

    I am sure that this time waiting for another opinion will help you to get your head around the idea of needing surgery. Perhaps you could look into finding another surgeon in case you want another opinion as well.

    I'll be interested to hear how things go and what you decide.

    Good luck :D
  • Thanks for the point about pain with your friend...the first few weeks after onset of my sudden symptoms I did have pain with the numbness and everything else, still having some pain in my feet...but I wondered so if I'm not having horrible pain could it be that bad? I've found out that yes it can, so I'm proceeding cautiously and my PCP told me I WILL end up having surgery, just have to find the right surgeon. It's so easy to be in denial...I'm so sorry you've had such a difficult time, how stressful your situation must be for you, especially playing a waiting game. Thank you for the information and advice on research, so helpful! I too have been so physically active and I'm used to exercise so I've been just walking these days but I can imagine that you've been advised not to take part in contact sports!! I'm afraid to even look behind me when I'm driving!
    Best wishes and I'll keep posting and update my situation...again, thanks.
  • Many of us seem to have differing opinions regarding whether to use an ortho or a neuro. In Dave's situation, the ortho was best for him. In mine, the neuro was best for me.

    My first surgeon was an orthopedic spine surgeon. The surgery was not successful.

    2nd surgeon was neurosurgeon, who used to do only brains. He and his partner found that most of the brain surgery patients were ones who were living a partying lifestyle, crashing on bikes with no helmets, etc. Not all, but many. He said that most of those patients had a difficult time paying for the doctor's services. So they made the decision to switch to doing solely spines, which has been successful for them. I think that by beginning as a neurosurgeon working on brains, he learned to be very meticulous with tiny nerves and pay extreme detail to everything going on. This doctor has quickly become the best spine doctor in the area. I think it is very important to have a neurosurgeon operating on the neck, because the spaces are much tighter than in the lumbar area. The spinal cord is more susceptible to damage (been there/done that) I was advised to use a neurosurgeon for the neck, but that for doing lumbar surgery, it didn't matter so much if you have an ortho or neuro. Don't know if everyone agrees, but on my 2nd surgery, I used the neuro and it sure worked for me.
    Surviving chronic pain one day at a time, praying for a reprieve because living another 40 years like this doesn't sound too fun!
  • MetalneckMetalneck Island of Misfit toysPosts: 1,364
    we had that difference .... and yet both of our long term outlooks have been "less than" optimal either way!

    Oh Boy !!!


    Spine-health Moderator
    Welcome to Spine-Health  Please read the linked guidelines!!

  • Dave and Cindy...I'm finding out in the last couple of weeks that this is a journey which has many pathways and choices with no guarantees of which is the best choice. In my past surgeries on other parts of my body it was very cut and dry and the outcome was pretty definite, take it out and the problem will go away. I'm so thankful for this site and all of the great information I'm getting from those of you who have already had to make these choices. Thank you for taking the time to post so others can benefit from your experiences. I feel so much better about scheduling a second opinion and searching for a doctor that I will feel comfortable with and I would probably not have done that had I not found this site. I'm going to keep my fingers crossed that my outcome will be a good one and whatever comes will come. I appreciate everyone's help so much.
  • It's great you found the site. Lots of very caring and helpful people. A second opinion is a good idea, and following your instincts about the first doctor (and his staff) is probably smart.

    I wanted to make sure you know that in addition to your bone or cadaver bone to be used to surgery, there is another option. My surgeon used an artificial material. By 3 months after my surgery I was showing a good amount of fusion.

    Good luck in your journey.


    4 level ACDF C4-C7 5-2-11, laminectomy & discectomy L4-L5 1/26/12, ALIF L4-5, L5-S1 12/10/12.
  • notso,

    please pm me or reply because i am from nevada and am a former nurse and have had neck surgery in nv 4 years ago. i have researched a lot of docs here and i may be able to help u.

  • notso,

    please pm me or reply because i am from nevada and am a former nurse and have had neck surgery in nv 4 years ago. i have researched a lot of docs here and i may be able to help u.

  • I have been in the hospital since sunday. If i sneeze i get extreme pain going from nrck to both arms and legs, It also hurts in my chest and makes my stomache area feel hot. it normally lasts for around half an hour. when i cough it is not as severe. they have tested me for cardiac issues with all results being no problem. my MRI of the neck shows nothing major. anyone heard of anything similar? my blood pressure went from 117 to 190 on the high number last time i sneezed due to the pain.
  • Hi Lisa and thanks for the response. I just now got back home and saw your post. I'm happy right now with the neuro I have my appointment with in a few weeks and will go to him and see what he has to say, he comes highly recommended and patients like his patient manner also. After my experience with the first neuro and his office staff I'm looking forward to a better experience. I'll keep posting!
  • Thanks Karen! I'll add that question to my list that I'm compiling for my neuro appt. in a few weeks, thanks for the good wishes,
  • notso,

    Can u answer these questions about the neuro you are going to see?

    How long has he/she been practicing?
    Is he fellowship trained? the more the better!!
    Has he been involved in recent research?
    Has he been in the area a long time so he is well established?
    Does he limit his neuro practice to spines only?

    If you don't know the answers you should google him.

    It is really hard to select a surgeon and we do rely on recommendations, but sometimes that is not enough.

    When you get to the office, there are many questions you should ask him too. Write them all down beforehand. I could think of a lot...
    And of course just meeting the doc, you can get some feelings too.

    Again, my offer is still open. I have lived in las vegas for over 20 years and have been in health care for that amount of time too. And I have had a cervical fusion here in town.
  • Hi Starshine...Yes, I've checked out this new neuro and Googled him..and my P.A. goes to him..the neuro I saw a few weeks ago also comes highly recommended but I just didn't like how he rushed me and was inaccessible for more questions...The neuro I'm seeing in a few weeks has three fellowships in spine surgery, he specializes in complex spine surgeries. I'm looking forward to his evaluation and feel confident that he's a good neurosurgeon. I'm in the Reno area. There are always patients who aren't happy with doctors for whatever reason..and on the flipside I've talked to two acquaintances who swear by the neuro I'm not going back to...I wasn't happy with him or his staff. I appreciate your input!
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