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View Full Version : Terrible neck , shoulder and upper thoracic pain!



babyboomer16
05-02-2015, 11:33 AM
Hi all, greetings to all my friends! I am directing this toward Linda R.. But it also would be good to hear from anyone that may have had any of the same problems . I am having an awful time with my neck. As you can see from my signature, I am fused up to T/4. Then from that spot on up to under my occipital bone in the back of my neck it is very painful. I can't lean my head back to look up anymore. The pain also radiates over to my shoulders. There's also a big bump at the top of my spine above T/4 about four inches. Has anyone had to go back in and have surgery to fuse farther up. I don't feel like I can hold my neck up anymore. It feels like it wants to fall forward. I have pain in my lower back too. But I know that's the iliac bolts! I hate this feeling that my chin is hitting my chest. It isn't really a feeling. When I lean my head back
sitting in a chair, it happens. I accepted that after five major back surgeries,I will be living with chronic pain. Just need some opinions and feedback on this neck thing. One more thing that bothers me
at T/4, it feels like the screw is way to far in. There is a big dent there. It's uncomfortable. I just want to loosen the screw for relief! Linda, if you see this, I would love your input. I am grateful to be standing up, but like I said, pain will always be an issue. Bye for now! Linda

LindaRacine
05-02-2015, 11:58 AM
Hi Linda...

I'm not sure what I can tell you. It sounds like proximal junctional failure, but I can't tell without seeing xrays. And, even then, please remember I have no medical training. I think you need to see Dr. Lenke.

There are a few people here who have had to have their long fusions extended up to the top of their cervical spine. Melissa, unfortunately, comes to mind.

There's an industry study group (ISSG) that is looking at this issue. I'll see if I can get any info.

--Linda

jackieg412
05-02-2015, 01:21 PM
hi Linda, I am fused t2 -pelvis. And c4-7. When I had the cervical fused it took care of a lot of the issues you are having. I am not fused c7 to t2. I can turn my head well. Maybe not as far as before but functional.

babyboomer16
05-03-2015, 09:10 AM
Hi Linda...

I'm not sure what I can tell you. It sounds like proximal junctional failure, but I can't tell without seeing xrays. And, even then, please remember I have no medical training. I think you need to see Dr. Lenke.

There are a few people here who have had to have their long fusions extended up to the top of their cervical spine. Melissa, unfortunately, comes to mind.

There's an industry study group (ISSG) that is looking at this issue. I'll see if I can get any info.

--Linda Thanks Linda for your input. I do see Dr. Lenke the 20th of May. (2yr. Checkup)As you know he leaves in June. But I just wanted to throw this out here on the forum to hear what you had to say and others on here as well. I value your opinion very much, although I know you can't tell anything unless you have an X-ray to see. But I did think of PJF as something it could be. I just know it is very uncomfortable. I would appreciate it if you send any info at all! Thanks again and hope you are doing well with your fusion. Sincerely, Linda

leahdragonfly
05-03-2015, 09:58 AM
Hi Linda,

I remember there was a younger woman here about 5 years ago who had a similar problem as yours…she had surgery with Boachie as I recall, but I don't remember her name. She couldn't hold her chin up off her chest at her worst. Everything checked out with her back, so she was sent to PT, which did give her quite an improvement. I think as it turned out her problem was due to some type of muscle atrophy.

I will try to search for her posts to see if they help you at all. You definitely deserve a break by this point!

leahdragonfly
05-03-2015, 10:12 AM
This is who I was thinking of:

http://www.scoliosis.org/forum/showthread.php?10956-Has-anyone-been-to-a-chiropractor-for-their-neck-after-their-back-surgery&highlight=

http://www.scoliosis.org/forum/showthread.php?11034-quot-Girafee-like-quot-neck-can-anyone-relate-post-op&highlight=

Does this sound at all like what you are experiencing?

LindaRacine
05-03-2015, 12:47 PM
Hi...

We see the occasional patient with what we "chin on chest" disease. Linda, I don't recall your original issue (before your first spine surgery). Did you have a relatively sudden onset of coronal and/or sagittal imbalance?

--Linda

babyboomer16
05-04-2015, 12:11 AM
Hi...

We see the occasional patient with what we "chin on chest" disease. Linda, I don't recall your original issue (before your first spine surgery). Did you have a relatively sudden onset of coronal and/or sagittal imbalance?

--Linda After my surgery in 2006 that was a double fusion (L3/4 L4/5) for lower back, left leg pain, I slowly developed Sagittal imbalance(flat back syndrome). They said I had adult onset scoliosis. But Dr. Lenke said he thinks I always had scoliosis from birth. (It wasn't till 2010 that it became a serious situation. So I guess the answer is "no"it wasn't sudden. I was told that the 2006 surgery was the onset of all my problems. It won't be too long before I go to St. Louis to see Dr. Lenke. I'm hoping all this is something that can be helped with some non invasive techniques. I will let you know. Thank So Much~

golfnut
05-11-2015, 08:34 PM
Linda,
I have not checked in with the forum for a while and was sorry to read that you are having problems. I am thankful that you will be seeing Dr. Lenke soon. Hopefully, he will have a recommendation that will give you relief. I know you've been through a lot already. Be sure to give us an update after the 20th.

susancook
05-18-2015, 09:56 PM
Bummer, Linda. Hoping that the resolution comes with PT. Us frequent flyers" to surgery deserve a break!
Hugs, Susan

JenniferG
05-19-2015, 04:59 AM
All the best for your appointment with Dr. Lenke in a couple of days. Please let us know what he says. Thinking of you on the 20th.

babyboomer16
05-26-2015, 09:22 AM
Hi all, I just want to update you on my two year checkup with Dr.Lenke. He said that the metal looks good
and all looks in place. He thought my films look better than a yr. ago. However, above T/4 is a total disaster. My cervical discs are all collapsed and arthretic. And believe me, I can feel the pain. Dr. Lenke offered to set me up with the cervical surgeon there at Washington University. But I declined as I want to try some more conservative approaches first. If I can stand it that long. Dr. Lenke will be leaving Washington University in June and going to New York to run his own hospital. (What I was told) a Dr. Gupta , from California, was asked to take his place , and he accepted the position. So I will see him at my three
Yr. checkup. Unless I go to New York to see Lenke. I live in central So. Dak. Ugh!
For those that have gone on to have their necks fused, could you chime in here and let me know
what to expect, if I would decide to do it. I am actually having terrible pain radiating from T/4 up to my neck down through my shoulders and under my left shoulder blade. Sound familiar anyone? It wasn't as bad when I saw Lenke. Isn't that the way it goes. I don't know if I did something between then and now or what happened.??? It was hurting always, but notto this extent! The good news is the rest of my body is fused. The bolts in my sacrum are painful a lot of the time. but he doesn't think it wise to remove them. Well, that my story and I'm sticking to it!
May God Bless all of you! Linda

mabeckoff
05-26-2015, 05:15 PM
How high up are they talking about fusing your neck? Are you talking about fusing your neck to the spine , as Dr Bederman did for me?

Melissa

babyboomer16
05-26-2015, 05:33 PM
How high up are they talking about fusing your neck? Are you talking about fusing your neck to the spine , as Dr Bederman did for me?

MelissaMelissa, I havn't got that far yet to talk about surgery. I called Dr. Lenke's medical assistant today and told her about the terrible pain in my neck and shoulders , behind my left shoulder blade and down my arms. Also there's deep a sharp pain right where the rods stop at T/4. That radiates up to my neck, clear under the occipital bone under the skull. Ugh! I'll let you know what I hear. Did it make a big difference after they fused you on up and thru the neck? (Pain wise)? I would imagine that's a dumb question on my part!! It had to feel better! Hope you are getting thru things and doing well. Linda

golfnut
05-26-2015, 08:24 PM
Linda,
Since you have to drive so far to get to St. Louis, it sure would have been nice if you could have seen a cervical surgeon while you were there on the 20th. Maybe a Cervical Specialist could recommend something less invasive than surgery, such as physical therapy, steroid injections, etc. It sounds like you are in terrible pain today and I truly feel for you. Everyone fears more surgery and you have already had more than your share, however, if that's your only chance at relieving the pain, it may be the best choice. I obviously do not know. Maybe you will get some positive comments from those who have been fused in the cervical spine. Thinking of you . . .

jackieg412
05-27-2015, 07:02 AM
Hi Linda, it does seem if there is a treatment order. Such as steroids, PT,etc. However, I think that works for awhile but the spines we have sure suffer a lot. I have t2-pelvis and C-4-7 fusion. The cervical fusion did help with the issues you are having. I am able to turn my neck but not put it to the shoulder. My same surgeon did all of the surgeries.

golfnut
05-29-2015, 08:31 AM
Linda,
I keep thinking about you and the pains you are having. Have you thought more about seeing a cervical surgeon? Did Dr. Lenke feel that fusing more vertebrae above your fusion would be the best option?

babyboomer16
06-04-2015, 11:54 AM
Linda,
I keep thinking about you and the pains you are having. Have you thought more about seeing a cervical surgeon? Did Dr. Lenke feel that fusing more vertebrae above your fusion would be the best option?
Hi ~ thanks for your thoughtfulness! I think of you often. When you ask if Dr. Lenke was willing to refer me to a cervicle specialist, the answer is "yes"! But at that moment I thought I wanted to try some less invasive treatment. He said I need a collar, and physical therapy. I also go in for a steroid shot the 10th of this month. But with the bad osteoporosis I have, I don't like to use steroids too often. I have lost 6 inches in the past six years. I take "prolia" for strengthening my bones. I'm a peace of work!(smiles) I still am thankful to Dr. Lenke for finally helping me to walk again. It is a blessing every day.! I also have an appt. with a physical therapist a week from today. I will keep trying some of these things before I speak with a surgeon. But when And if I do, I want Dr. Lenke's opinion on who he thinks can do a good job.(in St.Louis) Even if he will be in New York. Will you still see him for checkups Karen? Or are you done? I was thinking you are going on your fifth year. Time goes by too fast! Best regards to you! Linda

golfnut
06-04-2015, 08:37 PM
Linda,
I saw Dr. Lenke in April and everything looked fine. I am in a study at Washington U. and will see Dr. Kelly or Dr. Bridwell in Jan. in St. Louis for my 5 year check up. My left hip is starting to "pop" with every step, so I may call Dr. Lenke for a recommendation for a hip surgeon. It doesn't hurt, but I'm thinking down the road. Naturally, it didn't bother me when I saw Dr. Lenke in April. If I would need something major, I think I'd go to New York to see Dr. Lenke.

Are you wearing a neck collar? It might relieve some of the pain. I sure hope that physical therapy will work for you, but don't be too reluctant to see a cervical surgeon. I know you have been through so much, but it might make a world of difference to your quality of life if that is your only option after you've tried less invasive methods. Please continue to post with your progress. I am hoping and praying for you!

babyboomer16
10-20-2015, 10:09 AM
I'm back and having an awful time. I have posted about my awful neck~ shoulder~and arm pain. I also started having terrible pain in my lower back. But all that aside about a month ago I went to an orthopedic foot surgeon cause I need bunion surgery. But my feet are numb and burn all the time. So he said he would not do it till I had an MRI of the neck and lower back and send it to Dr. Gupta. I did and Dr. Gupta's nurse called me back to say that Dr. Gupta is seeing some serious stenosis in my neck. So she set me up to see him on 11/18/15 I also have been having terrible pain in my lower back and he will address that too.
I have taken a couple of falls in the past six months, so don't know if that has made things worse or not. My feet are so bad that my left foot turns in , causing me to be off balance . This is causing some issues with falling. I just can't get out of this medical Merry go round. Has anyone had issues with numb, burning feet two years out? It goes up my legs into the ankle and a little above into the calf of my legs.
Well, wishing all of you the best~~~ and those still having issues ~~ praying for better days for all of us! Linda

golfnut
10-20-2015, 03:22 PM
Linda,
I am sorry to hear you are having so much pain. I will send prayers your way. Let us know what Dr. Gupta says.

babyboomer16
10-28-2015, 09:46 AM
Linda,
I am sorry to hear you are having so much pain. I will send prayers your way. Let us know what Dr. Gupta says.
Karen,
Thanks for your prayers.!! I think I wouldn't have so many issues if I would have found Dr. Lenke first.
Instead I had three unsuccessful spine surgeries in So. Dak. The surgeons in So. Dak. didn't know enough about saggital imbalance. Hind sight is 20/20~ but it comlicated things more for Dr. Lenke.
Hope you are getting along good!! It is starting to get chilly here already!!! I suppose it is there too!! Hope you are still golfing up a storm!!!!! Warm thoughts of you, Linda

susancook
10-29-2015, 12:10 PM
Linda, You and I drew the short straw of backs. I also have burning in my leg and foot which is probably nerve pain. My anterior leg pain follows the dermatome of L4 and 5.

There will be better times for us in the future. Sorry about your falls. Can you figure out why you fall? I fell 2 days ago, but it was from a wet rubber bottom on a crutch that slipped on the floor. I came in from outside and need to remember to wipe the bottoms of my crutches off now that summer is over and it has started to rain agsin here.
Susan

babyboomer16
10-31-2015, 01:05 PM
Linda, You and I drew the short straw of backs. I also have burning in my leg and foot which is probably nerve pain. My anterior leg pain follows the dermatome of L4 and 5.

There will be better times for us in the future. Sorry about your falls. Can you figure out why you fall? I fell 2 days ago, but it was from a wet rubber bottom on a crutch that slipped on the floor. I came in from outside and need to remember to wipe the bottoms of my crutches off now that summer is over and it has started to rain agsin here.
Susan
Susan, you ask what was causing me to fall~~ my feet are crippled from super bunions! My left foot's big toe is flipped over te top of the toe next to it. Both feet are bad , but left more than right. I walk on te inside of my foot. But the numbness doesn't help either. The numbness burns constantlly. Wondering if it's fron the stenosis in my lower back or neck. We'll see the 18th of Nov. I think it's that (and not my toes) causing it, because of what I'v read about it.
I sure hope you're right about times will be better for us later. But I can walk~~although I am off balanced a lot of the time. Yikes! But you my dear, have to get to to point you can throw away the crutches,so you can live out your passion!!! Keep on keepin on! Keep us up to date on what's going on. Thanks for giving me a boost ~~ I know if you are looking forward to better things~~ I better quit feeling sorry for me,. You are so inspiring and brave Susan, in spite of the crap that you have had to deal with. Thanks for being a good sport and example to all of us. Sending you a very gentle HUG,!! Linda

susancook
10-31-2015, 06:19 PM
Susan, you ask what was causing me to fall~~ my feet are crippled from super bunions! My left foot's big toe is flipped over te top of the toe next to it. Both feet are bad , but left more than right. I walk on te inside of my foot. But the numbness doesn't help either. The numbness burns constantlly. Wondering if it's fron the stenosis in my lower back or neck. We'll see the 18th of Nov. I think it's that (and not my toes) causing it, because of what I'v read about it.
I sure hope you're right about times will be better for us later. But I can walk~~although I am off balanced a lot of the time. Yikes! But you my dear, have to get to to point you can throw away the crutches,so you can live out your passion!!! Keep on keepin on! Keep us up to date on what's going on. Thanks for giving me a boost ~~ I know if you are looking forward to better things~~ I better quit feeling sorry for me,. You are so inspiring and brave Susan, in spite of the crap that you have had to deal with. Thanks for being a good sport and example to all of us. Sending you a very gentle HUG,!! Linda

I wish that I could throw away the crutches. I do not have the strength in my legs. It would not be pretty without crutches.
Susan

dixiesmommie
10-31-2015, 06:33 PM
We were just talking about neck and thoracic pain on the Facebook group today. Hope to see you there and share our experiences.

babyboomer16
11-01-2015, 01:16 PM
I wish that I could throw away the crutches. I do not have the strength in my legs. It would not be pretty without crutches.
Susan
Susan, I still can't believe it yet, that this happened to you. But it did~~ and because it did ,it makes my problems seem so minimal in comparison. It's wonderful that you write requests for grants, and in doing so ,hopefully helping others. Plus it helps keep your mind busy for that amount of time.. Keeping you in my prayers~~~Linda

babyboomer16
11-02-2015, 07:22 PM
We were just talking about neck and thoracic pain on the Facebook group today. Hope to see you there and share our experiences.
Dixiemommies~~ what's the Facebook page called where this discussion takes place? Linda

dixiesmommie
11-03-2015, 12:13 AM
Baby boomer, I don't post on this forum anymore but read your post as you wanted to get in on the FB page. I know exactly what you are speaking of. My mom and sister both have that bump between their shoulder blades I am having lots of pain in the same area. I just started a post about it. I recently fell and it feels like all the impact went right to that area. I can hardly look up anymore. Shoulders are so sore too.

babyboomer16
11-19-2015, 10:52 PM
Hi, I am back from my appt. with Dr. Gupta at the Washington University. I am going to try to explained what he told me about my neck first and then my lower back. He showed me a picture of my neck from the MRI that I sent him. It showed the disc in my neck squeezing my spinal cord together really bad. But I can't tell you the exact discs that are pressing on it yet.Then he surprised me by showing me that on my right lower side, where Dr. Lenke had put double rods,they are both broke into. I guess I kind of knew something was wrong with the lower back, but I was in denial!! I have felt like things were loose when I walk. Anyway, he wants a mylogram for to see my bones better. He said he could see the neck better to get a better picture as to how to proceed with surgery on the neck. Also the mylogram can show if I am fused in my lower back. That can tell him if that may be a reason for the broken rods( if I'n not fused). I hope I am fused. I walk kind of off balance and have been for a while. My feet are numb a lot. He thinks that's from my lower back. The pain is not good. Anyway, they woul have done the mylogram the same day, but I had taken an asprin and so because it is a blood thinner they couldn't do it. It takes three days to get out of your system. Anyway, I go back Jan. 5th for the mylogram and some more pre op stuff, and then he will do surgery on my neck six weeks later. It is more important than the broken rods. He put it this way'" the broken rods won't kill you, but the neck could. Well, sorry this is so long, but this is all of it in a hand bag!!!
I am so stressed about more surgery~~ but I guess I have to do what I have to do! Darn!!! I just want this nightmare to go away!! But like Susan says" It is what it is" !! I am going to bed now!! Long trip!! Thirteen hours!! Goodnight to all~~ Linda

golfnut
11-20-2015, 08:11 AM
Oh, I hate to hear that you have another surgery in your future. I will send you an email.

Doreen1
11-30-2015, 06:55 PM
SO sorry to hear about another surgery, Linda. Dr. Lenke referred me to Dr. Daniel Riew (pronounced Ru) for cervical issues and I meet him almost 2 years ago. Dr. Riew moved to NYC with Dr. Lenke. While a local cervial doc had me terrified that my cervial was in horrible shape, Dr. Riew assured me that I was not at the surgical stage yet. Perhaps you can get Dr. Riew's opinion too? I know travel is not easy, but a second opinion is crucial with major surgeries. Prayers!

babyboomer16
01-11-2016, 10:54 PM
Hi everyone,
I got back from seeing Dr. Gupta. He looked at the mylogram and told me he would have
to do two surgeries . First on my neck and then on my back. When he's done I will be fused from my sacrum (S3) to C4. I will have some move meant in my neck. ( 50%). He will go through the front and then the back of my neck for the first surgery. He said it will take approx. 8 hrs. I was surprised so long. And I was told this is a very painful surgery. ( aren't they all?)
But anyway, afterI recover from my neck surgery, he will go in and fix the brokenn rods in my back. That will be a big surgery too. But he is going to have his assistant call me with a date and explain more to me about the surgeries.
All in all I am looking at a couple years recovery. There isn't any way around it if I don't want to end up in a wheel chair and my neck will keep on collapsing till my chin is on my chest completely. I can't lift my head up now. So it's time.And like I said earlier in a post, the discs in my neck are punching off my spinal cord plus the blood flow. So I'm a mess! Not to mention painful. I think I'm probably looking at middle of March for surgery..
I really would like any input from you fine people. Any help and support would be great!!! I will keep you posted on the date and information about this surgery. Hope you are all getting along alright. I know there's a few struggling pretty bad out there. I'll keep you in my prayers! Sending my best to a bunch of very strong people on this forum. Truly, Linda

jackieg412
01-11-2016, 11:30 PM
You will be ok. You can function with all of those levels fused. Actually the cervical surgery isn't as painful as the spine. Once you are off of the nerves, you actually feel better.Keep yourself strong.

golfnut
01-12-2016, 09:30 AM
Linda,
I am so sorry for the pain you have and the fact that you will need two more surgeries. It doesn't sound like you have a choice so focus on the long term results of getting back to a normal life with less pain. Stay strong! You have my prayers and support.

susancook
01-14-2016, 03:52 AM
Linda, I guess that the bright side of all of this is that there is a competent surgeon who will do his best to fix you. My biggest fear with my first surgery was that my surgeon would say, "there is nothing that I can do". I wish you the best. Sending good thoughts your way. Susan

babyboomer16
01-14-2016, 09:04 PM
Linda,
I am so sorry for the pain you have and the fact that you will need two more surgeries. It doesn't sound like you have a choice so focus on the long term results of getting back to a normal life with less pain. Stay strong! You have my prayers and support.
I want to say thanks Karen for all your replying. You have been here through a lot with me since we met in that X-ray room in (I believe in 2012). I will keep you updated and also good luck on your 5 yr. check up
with Dr. Gupta. I'v seen him twice and he seems very competent. I still don't have a surgery date as he is still studying my case. Take good care~~Linda

babyboomer16
01-14-2016, 09:19 PM
Linda, I guess that the bright side of all of this is that there is a competent surgeon who will do his best to fix you. My biggest fear with my first surgery was that my surgeon would say, "there is nothing that I can do". I wish you the best. Sending good thoughts your way. Susan
Hey Susan, I appreciate your post ,as I know if anyone knows how it is to keep having set backs, you do! I
truly can't explain it, but I am more nervous about these surgeries coming up than I was of the first one.
Could be that I'm aware of what's going to happen and that is pretty scary!! But I'll get through it, as you did! I just need to remember all your things you've been through, and then I need to toughen up and get strong like you . Hope things are doing well with rehab. Warm thoughts of you~~ Linda

susancook
01-15-2016, 12:35 AM
Hey Susan, I appreciate your post ,as I know if anyone knows how it is to keep having set backs, you do! I
truly can't explain it, but I am more nervous about these surgeries coming up than I was of the first one.
Could be that I'm aware of what's going to happen and that is pretty scary!! But I'll get through it, as you did! I just need to remember all your things you've been through, and then I need to toughen up and get strong like you . Hope things are doing well with rehab. Warm thoughts of you~~ Linda

Linda, there is a part of me that is pessimistic because I figure, so-o-o-o much has gone wrong! Every time I think that I am "fixed", I am not. My biggest problem is my spinal cord injury, and my recovery from it. So much physical therapy!

Sure, surgery is scary. But, then, what's the alternative? Live like we are? Or place your faith in an experienced surgeon?

Hoping that you find relief from your pain and neck problems.

Susan

Carol56
01-15-2016, 07:08 AM
Hello........I am new to this forum and website.........and I apologize but i did not read all the replies here......but your heading last May made me want to ask.......Linda, could you be 'allergic' to the implants in you??? I have two very long stainless steel rods in my back and i have SEVERE pain day/night. In two weeks i am having the rods replaced with titanium because i am indeed 'allergic' to the stainless steel (of which, I did not know my doctor was going to use) (I would have told him not to because i knew I was allergic, but they never asked).
I hope things look up for you soon!

sincerely

Carol

JenniferG
01-17-2016, 02:46 AM
Good luck Carol.

Linda, you've been through the mill but you're not yet crushed. Perhaps in a way it's good that there's no choice about this surgery, otherwise you'd be sleepless going backwards and forwards. There is the probability of a better life to come once you're healed from this surgery so this gives you something to look forward to. Keep thinking past the surgery, to the better life to come. I hope you have plenty of loving family and friends to support you through this. Thinking of you and best of luck!

babyboomer16
02-02-2016, 08:44 PM
Good luck Carol.

Linda, you've been through the mill but you're not yet crushed. Perhaps in a way it's good that there's no choice about this surgery, otherwise you'd be sleepless going backwards and forwards. There is the probability of a better life to come once you're healed from this surgery so this gives you something to look forward to. Keep thinking past the surgery, to the better life to come. I hope you have plenty of loving family and friends to support you through this. Thinking of you and best of luck!
Jennifer, I want to thank you for your post of encouragement. I felt much better after I read it. I do know I will,hopefully, feel better than I do now. I just need to try to get rid of this panicky feeling when I think about two more huge surgeries. I'm not a wimp, but after many surgeries, I am hoping my getting through them,with no big complications, holds out.!! Anyway, I will keep you posted. Sincerely,Linda

babyboomer16
02-02-2016, 09:35 PM
Hi all,
I finally got my surgery date for my Neck Surgery first. It's May 9th, at Washington University, by Dr. Gupta. He will go through the front of my neck first to replace a couple discs and then go through the back of my neck and fuse C1 thru C7. All this will take around eight hours. Then after six months , if it has fused, he will fix my broken rods in my back. I just pray I survive all this,again,with no complications.
Thanks to all of you for being the great people you are. You know what these big surgeries are all about, and you all make me feel much better. God Bless! Linda

kennedy
02-03-2016, 11:50 PM
Good luck linda

titaniumed
02-04-2016, 07:50 PM
Wow Linda, I don’t know what to say other than that I have read your post around 10 times now....

Thinking of you...

Ed

mabeckoff
02-11-2016, 01:16 AM
Thinking of you
Melissa

babyboomer16
04-26-2016, 05:01 PM
Hi, I am not too far from my May 9th date of surgery on my neck. While waiting for this surgery to happen , Im was walking along minding my own business, and I heard a loud pop, and a larg amount of excruciating pain on my right lower back. If you can remember, I already have pain on m y left side from two double fractured rods on that side. Well, I went to my pre op last week with Dr. Gupta and after xraying my spine he found two more fractures on my right side ( double rods ). But he still wants to go forward with the neck surgery first. He said that it is more serious. Although it isn't as painful as my lower back right now. I'm kinda of confused about his discussions, as he told me at my first appt. last Jan. that we had to do the neck first. So I went home waiting for an appt. date. Then his nurse called and told me Dr. Gupta wanted to know what hurt the most, and which one did I feel like I wanted done first. Well, at that point I had a steroid shot and couldn't tell which one to do first as the pain was under control. . But after having a telephone call on speaker phone from Dr. Gupta, we decided on the "neck" first. I was a little confused as to why all of a sudden they were leaving it up to me, as the I was told how dangerous the neck is. But I went along with it until the rods broke on my right side and the pain was really bad. I called right away and told him I thought I needed the rods fixed first because of the pain. His nurse called me back and said that the way he would have to lay me on the table to fix my back could make my neck even worse and more dangerous. I was confused again because of the earlier choice he left up to me. And of course then at the pre op, as I told you, he saw the new fractures, but still said neck first. I just wonder why at one point he was leaving it up to me if the neck was so dangerous. I was told, as I said, at the first appt. how dangerous my neck was because it was pinching off my spinal cord. Anyway, it is what it is, and no matter how much pain those rods are causing, we're going on with the neck. What could have happened,at what point, that he was leaving it up to me? Any opinions on this? I know the neck surgery is eight hrs.long and very painful from what I'v been told. So with the painful rods, I'm going to go bonkers. He won't do my back till I'm completely healed from the neck surgery. Months!!!! Anyway, that's my story, and I am not looking forward to all this at all. But I have no choice. Hope you all are hanging in there. At some point I will let ya all know how it's going? Any prayers are welcome!! So glad I have this group to vent to. You're the only people that know how scared all this stuff can be. God Bless each and every one of you!!!! Hugs to all, Linda

jackieg412
04-26-2016, 05:33 PM
The fusion surgery for the cervical isn't as bad as the spine. I am sure it can be tricky but the neck only holds up the head as compared to the whole body. I have a c4-7 fusion and I found out it helped so much that I was in less pain.
I would also ask if the neck was in such a bad condition-- why did he let you wait so long. My surgeon allowed me to choose which first but at no time did he say that he couldn't accommodate the different conditions.

golfnut
04-26-2016, 05:35 PM
Linda,
I am so sorry you are in so much pain and have to go through two more surgeries. Maybe someone can answer your question. I just want you to know that I'm thinking of you and that you have my thoughts and prayers.

babyboomer16
04-26-2016, 06:41 PM
The fusion surgery for the cervical isn't as h as the spine. I am sure it can be tricky but the neck only holds up the head as compared to the whole body. I have a c4-7 fusion and I found out it helped so much that I was in less pain.
I would also ask if the neck was in such a bad condition -- why did he let you wait so long. My surgeon allowed me to choose which first but at no time did he say that he couldn't accommodate the different conditions.
Jackie, thanks for responding. You can see why I'm a bit overwhelmed. By the way, I edited some typos in my post.(smiles). Anyway, that's how I feel about this whole thing. He totally had me confused
Going from "I have to do your neck first because it could kill you" to " which one do you feel you want done first?" And like I said that was after a steroid shot and before my rods broke on my right side.So I went with neck. After the shot wore off and the rods broke, I assumed he would still want my opinion. And I agree with you, why did he wait so long if it could be so dangerous as he told me. Ugh!!!
I will just have to go along with this. You just made me feel good knowing you had relief from you neck surgery. I so hope you are recovering well from the muscle transplant.Hoping you can get off the surgery merri-go-round!!!!!! We need a break~~~ good luck and thanks for posting.

babyboomer16
04-27-2016, 01:05 PM
Linda,
I am so sorry you are in so much pain and have to go through two more surgeries. Maybe someone can answer your question. I just want you to know that I'm thinking of you and that you have my thoughts and prayers.
Thanks Karen, you always have my back(literally)! I appreciate your thoughtfulness and prayers. Hope you are doing well and getting ready for warm weather and golfing(smiles)!!!! It is cool here today and raining like crazy!Take care ~ I'll keep you posted on the outcome of my never ending sauga. Linda

babyboomer16
04-30-2016, 05:45 PM
Hi all,
I read through my last post and actually wondered if I typed it! Just want you all to know Dr. Gupta is such a nice man with a warm personality and he has a very subtle sense of humor. I sounded so negative in that last post, and I didn't want anyone to get the wrong idea about his credentials!
I am very comfortable knowing he will be doing my surgery. Sometimes there may Be mix ups in
which patient is to do this or that, Being a medical assistant to these high ranking surgeons has to rank high as far as stressful jobs!!!!!!! I am very positive he is going to Do everything possible to give me a comfortable life. Very warmly yours, Linda

jackieg412
05-01-2016, 04:31 PM
Good luck Linda. I think your surgery is soon

babyboomer16
05-02-2016, 08:46 PM
Good luck Linda. I think your surgery is soon
Thanks Jackie,
I appreciate your message~~ I know you had your neck fused and so you know what lies ahead. Hope all is moving forward well for you. I 'll let you know how things go after May 9th!! Take good care of you!
Best wishes, Linda

mabeckoff
05-02-2016, 11:51 PM
Good luck. Hope all goes well

Melissa

jackieg412
05-03-2016, 07:31 AM
Go into it with positive feeling. This will help! After healing you will be able to move better then you think. You just can't put your head to your shoulder. But turning is just a little compromised.

golfnut
05-08-2016, 01:41 PM
Linda,
I'm sending prayers your way for a successful surgery tomorrow. Please post when you are able.

babyboomer16
05-31-2016, 08:18 AM
Wow!!! That was a tough surgery! I felt like someone hit me in the back of my neck with a baseball bat!!!
I feel a little better now but it is still painful. They cut an incision in front , right side of my neck, removed two dics(c5 c6) and put a cage in filled withBMP and bone shavings. Then they put a halo on me and flipped me over fusing me from T1 up to C2 doing a laminectomy from c2 thru c5. Is that clear as mud!!! I use tried to copy this from online records.Whatever the case it was an eight hour surgery. And I was in ICU FOR A DAY AND A HALF. I'v had a lot of surgeries,and have never got sick from the anesthesia, but not this time. I got the dry heaves as I had no food in my stomach. It was awful. But after all is said and done I am a couple inches taller. I have lost six inches in the past ten years, so I was glad to get some back!!!! After six months if I'm fused enough, Dr. Gupta will go in and fix all the fractured rods in my back.
Well, that's my update so far. Each day is a little better. But some days I feel crappy!!!! If you know what I
mean. Hope this finds those of you on here feeling well in body and mind. Sincerely, boomer(Linda)

golfnut
05-31-2016, 02:45 PM
Linda,
I have been thinking about you! I know you are still in pain, but it sounds like you have the worst behind you. I hope each day you feel a little better than the previous one.

titaniumed
05-31-2016, 06:35 PM
Linda, I have stared at your post now a few times with jaw agape.....I cant imagine what this feels like....

I believe that Melissa is fused up to C2....

I hope you feel better soon.....

Ed

babyboomer16
05-31-2016, 09:50 PM
I forgot to say that I have to wear a hard cover neck brace for three months.(at least)They shaved all my hair off half way up my head.(looks pretty stylin!!!). It doesn't show with the brace on. I have to sleep with it on. Not very good for my beauty sleep.(smiles). I can take it off for a shower. Well, I just had to add this . Warmly, Linda

jackieg412
06-01-2016, 07:27 AM
Linda I am glad you are through this. Hopefully you will start feeling better soon. Fixing your rods may be easy after this.

mabeckoff
06-01-2016, 09:58 PM
I am glad that you are through the surgery

Hope each day gets better.

Your recuperation sounds like mine

Yes I am fused from C2

Melissa

babyboomer16
06-03-2016, 10:01 PM
I am glad that you are through the surgery

Hope each day gets better.

Your recuperation sounds like mine

Yes I am fused from C2
Melissa Thanks Melissa ~~ I thought of you in the hospital. You've also had a lot of surgeries. I am doing alright ~~ if it's fused in six months they will go in and fix the fractured rods in my lower back.
Hope this finds you doing well Linda

babyboomer16
06-03-2016, 10:13 PM
Linda I am glad you are through this. Hopefully you will start feeling better soon. Fixing your rods may be easy after this.
Thanks Jackie. I am doing alright. My lower back is giving me more problems than anything. I have to walk with a cane at this point. It keeps me stable as I lean to the left and forward pretty bad. Hey, I hope you are coming along alright iin your recovery. You had quite a surgery!!! Well, wishing you the best!! Linda

babyboomer16
06-03-2016, 10:29 PM
[QUOTE=golfnut;166350]Linda,
I have been thinking about you! I know you are still in pain, but it sounds like you have the worst behind you. I hope each day you feel a little better than the previous one.[/QUOTE.]
Thanks Karen!! I am doing better everyday. I already can tell my neck is much better in that I can look up instead of "not being able to move my neck" to look up. Hope you are enjoying the summer and are getting in a lot of golfing!!! Best wishes to you!!!Linda

babyboomer16
06-03-2016, 10:44 PM
Linda, I have stared at your post now a few times with jaw agape.....I cant imagine what this feels like....

I believe that Melissa is fuseder up to C2....

I hope you feel better soon.....
Ed
Thanks Ed!! I am doing better each day. It gets hard to not tear this neck brace off!!! But it's for my own good!!! I am feeling a lot stronger . So that's a good thing!! Hope you're doing well! Linda

rohrer01
06-04-2016, 03:47 PM
Wow!!! That was a tough surgery! I felt like someone hit me in the back of my neck with a baseball bat!!!
I feel a little better now but it is still painful. They cut an incision in front , right side of my neck, removed two dics(c5 c6) and put a cage in filled withBMP and bone shavings. Then they put a halo on me and flipped me over fusing me from T1 up to C2 doing a laminectomy from c2 thru c5. Is that clear as mud!!! I use tried to copy this from online records.Whatever the case it was an eight hour surgery. And I was in ICU FOR A DAY AND A HALF. I'v had a lot of surgeries,and have never got sick from the anesthesia, but not this time. I got the dry heaves as I had no food in my stomach. It was awful. But after all is said and done I am a couple inches taller. I have lost six inches in the past ten years, so I was glad to get some back!!!! After six months if I'm fused enough, Dr. Gupta will go in and fix all the fractured rods in my back.
Well, that's my update so far. Each day is a little better. But some days I feel crappy!!!! If you know what I
mean. Hope this finds those of you on here feeling well in body and mind. Sincerely, boomer(Linda)

So are you fused C2 - pelvis? That sounds about like Melissa. My neck hurts so bad now, it's probably nothing compared to what you are feeling! I'm glad that part is over with for you. I'm so sorry that you've had to have so many surgeries. I don't know how you guys do it, honestly. My neck is a mess and am having head of neurosurgery try to get me referred to Mayo in Rochester, MN. With C2 fused you can only nod "yes" to people, right? Be careful with that one!...just trying to keep it light.

I'm glad you're feeling a little better. I hope the pain completely goes away. It's just so hard to believe that you've been to the best surgeons and still had all these problems. I really do wish the best for you. You've been through enough!

(((HUGS)))
Rohrer01

susancook
06-06-2016, 04:51 PM
Linda, hang in there!

I wore a soft neck brace for 3 months after a thoracic redo. Not fun, but "keep your eyes on the prize".

Find out which anesthetics that were used in your surgery and look at previous records when your did not have dry heaves for what was used. Tell the anesthesiologist that you want meds for nausea early, often, and a lot.

Keep healing....thinking of you!

Susan

babyboomer16
06-08-2016, 10:29 PM
So are you fused C2 - pelvis? That sounds about like Melissa. My neck hurts so bad now, it's probably nothing compared to what you are feeling! I'm glad that part is over with for you. I'm so sorry that you've had to have so many surgeries. I don't know how you guys do it, honestly. My neck is a mess and am having head of neurosurgery try to get me referred to Mayo in Rochester, MN. With C2 fused you can only nod "yes" to people, right? Be careful with that one!...just trying to keep it light.

I'm glad you're feeling a little better. I hope the pain completely goes away. It's just so hard to believe that you've been to the best surgeons and still had all these problems. I really do wish the best for you. You've been through enough!

(((HUGS)))
Rohrer01
Roher, excuse me if I should know this,, have you had any spinal surgeries? Would this be your first? The Mayo Clinic is a teaching hospital, and from what I'v read and researched, they are the best when it comes to having a complex surgery. I think it has to do with all the students ~~it keeps the surgeons much more alert to all the questions and answers that go on.I guess what I mean, is they also just keep on learning.If that makes any sense. I had a huge surgery years ago at the Mayo Clinic on a bad break on my left wrist that got infection and after eight failed surgeries , I ended up at the Mayo clinic. The place is great. That was 1995. Lots of surgeons were involved in the surgery. Lots of very young Dugi Housers (if you remember that show) running around. What I mean is very young YOUNG Drs.They have to be very high IQ's running around that place. I'm sorry to hear you're in such pain. In my case, my lumbar just doesn't want to fuse. And what happens is my rods eventually break and then revision is required. Darn!
I wish you the best!!!!! This forum is so helpful and we are compassionate with each other because we all have similar situations and know what it's like. Keep us updated. Linda

babyboomer16
06-08-2016, 10:41 PM
Linda, hang in there!

I wore a soft neck brace for 3 months after a thoracic redo. Not fun, but "keep your eyes on the prize".

Find out which anesthetics that were used in your surgery and look at previous records when your did not have dry heaves for what was used. Tell the anesthesiologist that you want meds for nausea early, often, and a lot.

Keep healing....thinking of you!

Susan
Thanks Susan for that great advice for my next surgery. I also had trouble with them keeping my pain under control. I think if they would have done the same thing and looked at previous surgeries there, and what worked for me, we would have had a lot better outcome . You are a sweetheart and are very experienced with all this stuff ( unfortunately)!! Hope things are going alright for you. Thinking of you! Linda