Just over 1 year Post OP

Low Back is doing well. I often forget I had a problem. I no longer awake in pain. It will get sore if I do too much housework or lifting or walking but its manageable and liveable. At this point I'd call the surgery a Success and would do it again.


Neck is still a disaster. Its been deja vu of the low back.

Anonymous - please no more comments, they aren't helping and I don't know who you are. Your replies are nonsense to me. This is meant for family, friends and helping others.

6.5 months post op

My low back is good - it really only hurts with weather changes so this hurricane season has been tough or too much activity. Its not a constant pain anymore. I continue to core strenghten which is helping. Its going to rain tomorrow so I do feel it a bit now but nothing like pre-surgery. In fact this weekend was great weather and I never felt it at all. Maybe we should relocate somewhere that has no pressure changes.

My neck pain has continued to be terrible. I am having an awful time with the doctors. I had a facet block injection which did not work and in fact caused me to have severe spasms down my right shoulder. At the follow up appt the doctor said he was "at a loss" and offered my nothing but drugs. I refused to accept that option, ended up in a fight with him and am now seeing another doctor in the practice. I am in the process of dealing with the politics of that. New doc wants to do another set of injections which I don't want since the first ones actually caused me to be worse off. But in order to get to the next set of testing one must be a compliant patient and follow protocol. So we'll see where I get with this - no answers yet.

I had the German doctor look at my films and he agrees that they don't inherently look bad enough to perform surgery. However, he understands that given my history my pain is real. I need a cervical discogram done which could confirm my pain level. However, due the somewhat unreliable nature of the test and more to the risk of becoming quadripalegic with this test (2 in 1000 according to one doc) it is tough to get a doctor to perform this test without going through the above protocol.

So in the meantime I continue to be in awe that this has become my life......

6 month post op - status quo - low back good, neck terrible

I saw the doctor this week. The lumbar x-rays look great. The low back is really great - its only sore at times no pain!!! I do feel a lot more popping in my hips, shoulder and wrists than I did presurgery. My arm is still sporadically numb and tingling. My left ankle is sore. So, although my back feels good things are still out of whack for me. But when I wake up in the morning now I often forget I had a low back problem!!!!! Awesome feeling!

However, my neck still hurts at a pain level of 7 most days with no improvement whatsoever. I will have a cortizone injection in the facet joints on Wednesday this week. Let's home that provides some relief. He's the 4th doctor who feels that this neck pain is just coincidence, bad luck, bad genes and bad timing - the neck pain is not a result of the surgery. That is somewhat reassuring if I should need surgery on my neck in the future that it won't necessarily throw off another part of my spine. But I'm not even considering that option at this point.

I am still having severe anxiety as well as a result of all this pain and terrible fear for my future and the future of my family. I had the doctor look at every level of my spine and tell me that no more discs were degenerating. Its so out of my control and logically I know that but its hard to deal with.

But, I'm here, I'm able to enjoy a lot of life and trying to work this all out.

5 month post op - low back good, neck terrible still

I've been doing PT twice a day and only missed one session on the 4th of July. My low back is beginning to show signs of recovery. It's really only sore now, not painful. I can walk from 3-5 miles without pain. My neck still continues to be the main source of my pain. I am at a pain level 6-7 all day particularly on the right side where there is a herniation.
My physical therapist has discharged me. He is a compassionate man who was obviously sad that my neck pain is still so severe. He recommends continuing my therapy at home but feels further medical attention could be necessary. It feels a bit like deja vu on my low back but I'm hoping not to go down that road.

My left leg and foot did get numb and tingling during my walk today but subsided by the end. My ankle has been bothering me but that does not seem related to this more like an overuse feeling. These types of feelings cause a cycle of anxiety in my mind about what problems might be coming.

Despite the severe neck pain, I'm feeling overall positive that this will somehow work itself out. I am thankful that I am here, trying to enjoy as much as I can. Although, I do have pretty severe anxiety I recognize it and am hopeful that its temporary. A great friend of mine is moving away this week which I know is contributing to my uneasy feelings.

My mom has Mandi up north and they seem to be having fun. Even being down one child really helps me.

I appreciate the continued support and prayers. I still need it.

4 months Post Op - Intensive Physical Therapy Continues

I have been religiously following a very targeted Physical Therapy routing for a month now with the new therapist. He is head and shoulders above any others I've seen. I have some minimal improvement in both neck and low back but not nearly where either of us hoped I'd be at this point. I have an hour of neck and core strengthening to work on twice a day and a walk. Some days I can walk 2-3 miles at a decent pace but it usually means the next day I am much slower due to the low back. The therapist is saying I just have to keep working on the strengthening work that he is giving me to increase my endurance. The only reason I am able to stick to this strict regime is due to my mom and her husband who have taken my two little girls with them. If it were not for them, I think I would be stuck in the viscious cycle of daily life getting in the way of this rehabilitation.

We walked all day at Carowinds on Friday and I used a whole tube of Ben Gay to get through it. My left arm went numb that day but I realized that was the first time that had had happened in over a week so that was good news. The neck pain is constant at level 6 all day and gets to an 8 by the night time. Again that is some improvement over my being at painful, crying level pain by mid afternoon.

My low back is averaging a 4-5 but I actually had a day this week where I didn't notice it at all until 3:00 pm which was something that hasn't happend in 3 years so that is pretty great.

The therapist encourages me to stay as active as possible without increasing pain level. He's also helped me through some of the psychological aspects of this too because I'm getting pretty pissed off that I am working so hard and not feeling great results. He understands the whole aspect of looking good yet walking around at a pain level of 7 and feeling so bad and tells me its just a "cross that spinal patients alike have to bear". Put that energy into rehab and it should all fall into place.

Again the only reason I can do any of this is because of my mom, her husband and my husband's support. Thank you all so much!

At this point two spine doctors have read my MRI and neither believe surgery is necessary (thank god) so time will tell where this goes.

Just typing this post hurts the neck so I've got to sign off.

In the meantime my mom and I will be off to the beach with the girls for a few weeks which is always relaxing and a great place to walk.

14 Weeks Post Op - Worse than pre surgery

I just forced myself to walk around the block. My low back is about as bad as it was presurgery -severe pain on the left side. My low back feels like its gone downhill in the past few weeks. I can't say its because I've overdone it because I haven't done much due to my neck pain. So that is really discouraging. My neck is horrible and continues to burn.

I made a macaroni salad for a cookout we are going to later and it took everything I had to do that. I was out of breath , my neck was burning. And yes, we could go to the store to buy it but my girls have been asking for the kind that I make it and I enjoy making it. Its as if I want to prove to myself that I can do something, anything small. But the sad part is that I really can't.

Its also awful because I look absolutely fine. I think its hard for anyone to understand especially if they didn't know me before this all began. I don't want sympathy, I just wish it was more understandable.

My mom is going to take the two littlest girls for the next several weeks. I had to tell my job that I cannot work. These are not decisions that I made lightly - these are horrible choices to have to make. Accepting that I cannot do my job at home with the kids or at work.

This is as much a journal for myself now so that I can chronicle the pain and hopefully look back at this and read that I've made improvements.

Results of Cervical MRI 5-22-08

Well, I had a cervical MRI on Tuesday and we met with the doctor for the results today. I'm not sure what I expected or wanted to hear but MORE PHYSICAL THERAPY was not it.

I have a small bulge at c5-c6. He thinks that is typical for my age and is not the cause of my neck pain. Another reason he doesn't think its this bulge is the fact that it is on the right and my numbness, tingling is on the left. Of course, I can remember the first results of my lumbar MRI and the doctors saying that degeneration at my age is normal. Well that pain was not normal among anyone else my age that I know. So, although I want to believe that I think the jury is still out.

So, he insists that I now see his highly experienced PT for more aggressive treatement. He says this therapist will know in a few weeks if he can fix me. I'm aggravated because I've gone to another PT for several weeks now with no relief and just wish that the doctor had started me with this one to begin with. Now, my kids are out of preschool so I have to hire a sitter and drive to downtown to go to these appointments.

He prescribed Arthrotec and said I should know in a week if that is working.My husband came with me to the appointment. He's normally quiet but this time he explained how this is affecting (ruining) our lives. He's had to stay home from work because I can't take care of the kids. My mom is searching for plane tickets to take the girls up North with her for a long stay to give me relief. We told him I'm crying in pain every night but the doctor just says that its going to take "a lot longer than I would like" to get better.

I can't say much more except that this really SUCKS!!!!

MRI was this morning

I had a cervical MRI this morning. I won't have any results until the doctors appt next Thursday.

I had a Toradol shot last week and started the medrol dosepack this week. The shot helped my low back but not my neck. The medrol hasn't made any difference.

Severe neck pain continues. Its actually a burning now at the back of my neck. And it has moved into the sides and front of my neck which I would describe as a strain. I have a lot of "popping" in my shoulder and hips whenever I move.

Will update after dr. appt next week.

Doctor says its bad genes

I saw the doctor this morning. He xrayd my neck which shows some degeneration at C5-C6 but he doesn't think that is the source of the pain. He feels that is consistent for my age. I'll have an MRI on May 27th which may or may not give us some more insight. If that is inconclusive then he'll order an EMG. He firmly believes that the low back surgery had NOTHING to do with my neck problem. He says its purely coincidental. The bottom line is that he says I have bad back genes.
I am trying so hard to keep positive that this will go away but actually hearing that its unrelated to the surgery has made it harder to believe that.

I follow up with him on June 5th so we'll see where that gets us.

11 weeks post op - Dr. appt in the AM

I have been going to Physical Therapy three times a week for my NECK!!!! Its so ironic. We do some small core strengthening after we've worked my neck but not much. The terrible spasms have subsided but I cannot sleep without muscle relaxers. I am just in shock that this has happened. Surgery on lumbar spine and now I have neck problems which I never had before.

I go to the doctor tomorrow morning and am requesting (demanding if needed) an MRI on my neck. I need to know if there is degeneration there. If it shows nothing then I will have patience that this is going to work itself out over time.

I can barely comment on my low spine because it seems better, sore but not as painful as prior to surgery. However, I have remained so limited in my activity levels its hard to tell where its really at right now.

I will update after the doctor tomorrow. I have to miss Muffins for Mom at my daughters preschool because these appts are so hard to comeby. Luckily I have a dear friend taking her but I do hate how much this has interfered with my family life.

I will finally return to my part time customer service job in June which although I am looking forward to it, will be quite a challenge to sit at the computer as long as may be required.


More tomorrow.

Two months Post Op Update

Well I am on my own and back to life as best as I can. My mom has gone home. The neck continues to be the main source of my pain. Everyone asks but hows the low back - well it feels okay but because of my neck pain I can't really do enough to figure out where my low back stands. I walked on the treadmil today for an hour which equaled 2 miles. My left arm has been numb ever since and I have tingling in my left leg and foot. I am going to Physical Therapy three times a week which is mainly focusing on my neck at this point. I do some minor core strengthening and stretching but I can't do much until we get the neck figured out. I just cannot believe this has happened.

I still have all the same fears and concerns as my last posting, I'm just not as negative right now.

My friends have jumped in where my mom left off and are taking my kids for playdates a lot so I can rest. I accept the help but hate being in this position.

I hoped I'd be better by now but time will tell.

Week 7 - Rollercoaster Ride continues with increase neck pain

Well its been almost 7 weeks and as you read last week I was feeling real positive about my recovery and future outlook. This week - not so much. I've had neck pain for about a month now. My neck first began hurting about a week after I was home from Germany. I thought it was too much lying down and watching TV at eye level (I was dying to watch all the shows I had TIVO'd while I was gone - all they had in English over there was CNN) so we moved the TV up high like you'd see in a hospital. As the pain continued, I attributed it to the fact that I was walking and doing more so my muscles were overcompensating for my weak low back. As time progresses, this pain is becoming reminiscent of my initial low back pain years ago. It feels discogenic in nature now not muscular. The doctor last week thought it might be nerve related because my arms and hands are still feeling tingling and was too early for MRI which would be the only real diagnostic tool. I start PT on Monday and will continue that until I see the doctor again in exactly a month from now. I am EXTREMELY worried that my neck may have had "bad" discs just "waiting" to "go out". And that the added pressure on my neck has caused that to happen. Last week I talked to my girls about planting a vegetable garden next year, they want a dog which we haven't promised but its in our plans when I feel better, Disney World etc. etc. Now I'm back to thinking that I am going to have to go through this whole process with my neck? Is my life just going to be a long battle with back pain. If so, how am I going to get through it. Although this is not a life threatening condition it is certainly life altering and it REALLY SUCKS.

Dave my husband who has remained postivie thoughout and still continues to believe that I do not have neck degeneration says that he will eat meat during lent next year if my neck has been compromised. We don't attend church or follow any organized religion so now he may lose what little faith he has been holding onto since childhood.

The other thing that is really pissing me off and adding to my misery right now is the insurance process. We spent over $50K to pay for all of this and it is extremely unlikely any of it will be covered. So, on top of recovering and being in pain I have to deal with mounds of red tape, letters to be written, codes to be found, receipts to be sorted through - may of which are in Euros, appeals to make. It is a full time job in itself which my mom is helping with but things are falling through the cracks with both of us working on it. We feel the need to go through the whole, hideous process even though most of my predecessors have not been successful. I probably should delete this post because God Forbid the powers that be at the Insurance Company read anything negative - they'll probably include it in their next denial letter.

On a more positive note, my low back feels pretty good. I sorted through some closets this week and my neck hurt more than my low back. It was sore but not awful.

Week Six Update - Turning a Corner

Its been almost six weeks since surgery and I'm doing really well. I can walk nearly two miles and sitting tolerance is increasing. I haven't had any painkillers since the leg issues. I've had about 5 nights of muscle relaxers because my neck is bothering me. The neck muscles are tense and one vertabrae hurts. I have occassional numbness in my left arm all the way to my fingers. I had my appt with Dr. Murray at OrthoCarolina on Wedesday. He took new xrays which he said look excellent. He thinks I am moving around very well. He believes the neck is still related to the nerve changes and should subside. He thought the egg sized lump at my abdomen looked worse in pictures and believes it may go down after several months. He has seen it before and believes it to be a result of the "sewing up" after surgery. If it doesn't go away, he'll send me to his vascular surgeon. He's referred me for PT which I'll start next week. And he'll willingly follow up with me in six weeks. He is by far the best, most compassionate spine doctor I have seen. With his credentials he certainly has the right to have the "god complex" that I've had to endure with so many surgeons but its just not his nature. Dave left the appointment saying he just wanted to hug him. It's great to know that there are still doctors out there like him. The whole experience has lifted my spirits. Thanks again to Mark Mintzer of Global Patient Network for arranging this.

I've been able to stay up and about for the full days, drive myself around now, clean up a bit. I still have soreness most of the day but nothing unbearable. Ice and heat are relieving it. One friend saw me in Target on Saturday and couldn't believe how well I was moving around. However, on Sunday I sneezed in Walmart and my left side really hurt. My back lets me know when I've done too much so I don't think I will overdo it.

I have been saying for the past 3 years that our move here to Charlotte hasn't ever felt like home (Boston) for me but at a time like this its getting close. The support that I have received from friends, neighbors, coworkers and acquaintances has been unbelievable! They are bringing meals, joining me for walks, and going out of their way to provide moral support. I am so thankful to my family and friends - near, far and online for all they have done.

My mom will be returning next week with the two little girls and I told her that I am ready to take back my duties. We'll do it slowly but I am finally feeling like I can take care of my family again which is nice.

I am turning a corner, haven't made it all the way around that corner yet but I feel optimistic that its coming.

Week 4 Post Op Update - Walking and Sitting Tolerance is increasing

It's 4 weeks from surgery today and I continue to recover. I can walk about 45 minutes before I feel pain. I can sit 20-30 depending on how much I've done in the day. I've only needed two painkillers this week which was for the leg issues at night. I haven't had the leg pain in two nights now so hopefully that is on the upswing as well. I am getting up and out a bit more. We went to WalMart yesterday - I had to leave the store and go to the car before my husband checked out though due to pain after 50 minutes.

I am still not better than pre-surgery and that is a milestone I look forward to hitting.

I sent the pictures of the egg sized lump at my incision site to Dr. B's office. They believe it to be muscle hernia which will require further surgery to correct though primarily cosmetic. My family doctor has looked at it and also feels its a cosmetic issue. I am going to see a new spine surgeon next week to confirm this diagnosis. I have to thank Mark Mintzer of Global Patient Network and ispine.org for connecting me with a spine surgeon in my area. My own spine doctor had rejected me once I made the decision to go to Germany. I left for surgery concerned but given my limted options, I decided to just hoped for the best and that I wouldn't need a spine surgeon upon my return. Mark contacted a top doctor here who he has worked with in the past to ask if he'd be willing to follow up with me. The doctors office called me the next day to set up my appt. This is amazing because most doctors are unwilling to take on other doctors follow up care. The doctor trained in Straubing with Dr. B so I feel confident he will be best suited to care for me. I'll let you know the results next week.

I should also point out that I am not a client of Mark's or GPN. He has so kindly and compassionately helped me out. THANK YOU MARK!!!!

Week 3 Post Op Update

Today is three weeks exactly from surgery. I've been home for a week. The pain is getting better. It's more sore in the low back area than pain for now. I've walked about 15 minutes at a time without much pain just muscle soreness. My back does feel that if I did too much it would hurt again quickly though I haven't tested that theory. About 3 nights ago I did start getting what I call "weird leg shit". I believe the technical term is Distraction Pain :) Its not so much pain as it is something taking over my legs - much like what Restless Leg Syndrome must feel like. Its tingling, wanting to move and a general feeling that something large is inside my legs wanting to crawl out. My hands also have numbness on and off. The pain meds relieved it the first two nights but not last night. Overall though I can say that I've made progress on the low back pain front which is a good step because I wasn't so sure that was ever going to happen. I can sit for 10 minutes or so now without pain. That's alot longer than the nothing that I could do back at the hotel.

Went to doctor today

I went to my family physician today for a follow up check up. I have had floaters in my eyes ever since the surgery. He checked that out and didn't find anything wrong with my retina. He recommended seeing an eye doctor if they are still there in a few weeks. I also had him look at my incision because when I stand up there is an egg sized lump at the top of it. He called it weakening of the muscle inside the abdominal wall. He didn't think it was a hernia or anything to worry about but he doesn't think it will go away completely . This lump has been there all along but its only noticeable when I stand up and look down or from the side view. And since the swelling from the incision is gone I think its more prominent now. I'll send a picture along to ProSpine tomorrow.

I spoke with both Chuck and David today - we all agreed that my perceived lack of progress is due to the fact that my disks were so degenerated and collapsed that my recovery will take time. I know its true but its hard to watch my family going on around me.

Geoff and Family - please see my response to your comment yesterday on the comment board.


Also, I may not be posting everyday now if there is nothing new. Don't want to bore you all!!!

Maybe the plane caught up with me

Well its raining (really heavily) today or maybe it was a delay from the plane but its not been a good one. I've been in bed most of the day. I walked to the bus stop but that was it.

Hopefully with all the rest I had today tomorrow will be better.

Back Home Safe and Sound 2 weeks post op

We made it home safely last night. The flight was not a whole lot of fun but I got through it. Unfortunately we were on an older US Air plane that did not have the upgraded first class seats which fully recline. We had seen those seats on our flight to Germany so I expected thats what I'd have on the way back and it would've made a huge difference in my comfort level. I had that new seat on the short flight from philly to charlotte and it was great.

The girls waited up for me and it was great to see them.

I don't feel much worse for the wear today given that yeserday was so long. Dave took the day off and walked around the block with me. I got another one of those left groin pains so I had to lean on him to fininsh the walk. I sat on ice when I got home and feel okay. The weather is beautiful here today so I have been able to sit outside and relax.

Thanks everyone for all of your support. Thanks Chuck and David and Mark for holding my hand through this.

We are at Munich Airport Day 13

The past few days have been uneventful and restful. We are at the airport now and all is well. Peter did get me a wheelchair and Jean is pushing me around. I am up and walking around the 1st class lounge now to move around before the long flight. I feel pretty good going into this. Sore and a little pain but not terrible.

Time to get a german beer. Jeans is learning how to pour them from the tap from fellow German passengers seems there is a skill to this.

Will post from the states tomorrow.

Internet is down

Hi, We are fine here status quo. The internet is down in the hotel and will likely be until Monday. I am using the receptionists dial up line now so do not plan to hear from me until we get to the airport in Philly. We cannot phone out of our romms but we can receive calls in if you need to reach us.