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View Full Version : I feel crackling, andI have itching inside now in my spine



leannebr
03-31-2011, 11:46 PM
I seem to have the worst and oddest pains and problems on this forum, and I still dont have answers from my Drs---- yet(?). I am so thankful for this forum, because without you I would be so alone. Even if you arent Dr's, all of the input, advice and experiences from everyone helps alot, and it is comforting for me. So thank you for being there, and I am sorry I am always complaining about my pain and problems.. I feel different..I feel really alone with my pain and problems. I am just looking for answers and want so much to get my health back and to feel GOOD.

Since last sat night, my sharp stabbing pain has now also turned into itching inside along my spine. The chest pain is gone. Its this itch i cant scratch and it has me awake all night and in the day time I just flutter around here unrelaxed and hiper because of it. Benadryl didnt help, got that from the ER Dr I finally drove to see because Id been up all night Sunday. I called my surgeons office yesterday and the 1st PA said itching inside my spine "would not be related to the spine surgery." The next PA that I spoke to said she had "never heard of this after this surgery." I dont have a fever. My white blood count is low 3.4 according to an allergy Dr I saw Monday for the small rash that I seem to be the only one to see very close to my incision. I am on a chemo drug since the surgery called Methotrexate, due to the severe intii-nflamatory arthritis and bursitis I developed shortly after the surgery. This drug initially causes low white blood cell counts in the first week, and then it is supposed to resume to normal after 21-28 days on the med. I have now been on it 2 months. I was reading the Medtronic website about the CD Horizon implants I beleive are what I have, ( my report says Medtronic Legacy and that is the model I guess ) and one of the things listed as a possible complication from them is auto-immune diseases and bursitis,( what I developed right after the surgeryand have now, and it mentions also an allergy to the titanium. It also says the hardware is only temporary and should not be left in if normal fusion occurs and that it will not last without fusion either. It mentions ( on the list ) that people without enough soft tissue coverage should not be candidates for these implants. EVERY Dr I see for pain ( Family Dr, my surgeon, the U of M surgeon I saw recently, 2 ER Dr's, Allergy Dr, and RA Dr ) all say the same thing when they see me now. "You are so thin, the hardware screws etc could be irritating your muscles, skin " etc etc..The hardware is very predominant on my back. Several lumps where the screws and hooks are . But the Dr saw my weight and stature before the surgery and I am not a Dr, I didnt know this problem exsisted or was a possibility before the surgery.

I am starting to feel crackling in my spine lately with certain movements where I have hardware ( where all my pain is usually ) and also when I turn my head, in my neck. looking for anyone out there who can relate or just has input to help.

JenniferG
04-01-2011, 12:12 AM
Don't apologise for complaining about pain and wanting answers Leanne, anybody in the same same boat would be the same. I wish I could help.

leannebr
04-01-2011, 12:49 AM
You have been alot of help to me. Thank you.

JDM555
04-01-2011, 01:47 AM
I don't know much about the itch, but the cracking is my specialty. I get at least 50 cracks a day. Don't know if it's the muscle ligaments sliding over the hardware or the bone or even the hardware itself. But it hurts and it's not a good feeling. Muscle relaxant and ibuprofen is probably only thing that meds can help you with. Don't get addicted on that crap though, it's not good for you. It's hard to describe the cracking, I use to just get small crack, but not I feel a severe crack/shift/snapping of something in my back. Not a good sign.

LindaRacine
04-01-2011, 10:26 AM
Hi...

After my first surgery, I had some of the internal itch that can't be scratched feeling for awhile. I think it was just part of the healing process. It was, however, quite distracting. Hope it goes away quickly.

Regards,
Linda

Elisa
04-01-2011, 10:37 AM
Leanne, you have every right to complain b/c you are obviously very uncomfortable, frustrated and no doubt worried and add lack of sleep to that... it's completely to be expected. I have not had spine surgery so I can't help you but am following along and hoping you get your answers ASAP.

ARodsMom
04-01-2011, 11:00 AM
I don't know if you're experiencing the same thing my son has but this is what he has experienced. Some popping in his back which freaks him out more than anything, but doc told us it was scar tissue and to be expected.

He gets tingling spots on his back and starts to itch and has scratched himself raw but doc said it's the nerves waking up.

jeneemohler
04-02-2011, 01:15 PM
I have both cracking/creaking and itching. The itching is along my spine and in random muscles. It is deep, and with my back being numb, no amount of scratching will help it. I might as well be scratching someone else. It can drive you crazy!!!
I am finally getting a little feeling in spots on my back. I can imagine there will be lots of weird sensations with the nerves healing. I know it's normal, and I'm still trying to be patient!

My popping/cracking/creaking has been going on since my surgery. Some popping, but mostly creaking. It sounds squeaky. It seems to be happening more often as I've become more active. It creaks so loud that my husband can hear it if it is quiet. It gives him the heebie jeebies! It feels strange, but there is no pain. I go back for another checkup in 10 days. I can make it creak any time I move, it even creaks when I'm laying in bed and deep breathing, trying to relax and go to sleep. I will let her actually listen to it and see if she still thinks it is ligaments or muscles sliding over the hardware. I could see snapping or popping, but creaking??? At least it doesn't hurt!

I didn't answer any questions for you, but I do believe you have a lot of company with itching and crackling!

LindaRacine
04-02-2011, 02:29 PM
Over the years, I've occasionally read posts about popping and creaking, but as far as I know, no one has ever posted a long-term follow-up. Is there anyone out there who had popping and/or creaking in the short-term, and who is at least 5-10 years postoperative?

Linda

leannebr
04-02-2011, 07:25 PM
I'm learning so much here. I need to say, I finally got results on blood work that I begged for from my family dr, who I had seen previously for the pain and thinking I had Shingles back on March 14th. I have a Positive result for Shingles. I KNEW I had it. It was identical and is identical to the symptoms but without a real bad rash, blistering on my skin or any fever. Saw 5 Drs and all said they didnt believe it was Shingles. I am CRAWLING with stinging itching pain along my spine INSIDE and to the left on my shoulder blade and down. Its all INSIDE and that scares me. So I have internal Shingles or what? I never even thought to ask my Dr when she called personally to tell me the results. She said it was to late for the antiviral med so told me to get Capsaicin ( similar to Zosterix I think ) lotion which is made up of red chili peppers or something. She said it tricks the brain ..(?) I have used it 3 times and it burns and stings and itches so bad after a while I can hardly stand it. Tube says this will go away eventually. I think I may have a combination of the nerves waking up along with the Shingles and I am miserable and just very UNLUCKY I think. I had alot of pain before this...Now my low mid back area feels like the rod is ready to snap or has, as if someone has kicked me in the back. I have this sandy crackling feeling in my upper back and neck when I move it certain ways. It doesnt pop or creak, it feels crackly..like crushed bones..:( Sorry but thats how it feels.
My fusion was t-2 to t-11 and I have pain now where the rod ends or near the end.Like someone has kicked me hard there. Besides all of this, every dr I have seen including my original surgeon says "you are so thin" "the hardware is irritating you", and as I mentioned the screws and hooks etc do protrude on my skin quite a bit. So why would my surgeon not have explained this as a posibility and or rule me out as a candidate for these implants ? Each movement I make I feel the the screws and hooks grind my skin inside effecting nerves and muscles. It feels like an open wound inside. it feels like its just raw.. The Medtronic Legacy information specifically states patients without enough soft tissue coverage should not have these implants. All that I know right now is with everything thats happened and happening to me, I want this hardware out of my body as soon as possible..The inflamatory arthritis I got right after the surgery is an autoimmune disease and this is mentioned can result from the implants as well ( or sutures unabsorbed remaining as well ). Titanium allergy ? For me possible. I had a bunionectomy years ago and had severe pain from the pin used that was left in my foot and I had to have surgery to remove it. This report was faxed to my surgeon before the surgery and they called me to say it wouldnt effect my having the surgery, but they would not use vycril sutures as a result of what happened. ( But as Ive mentioned before they did anyway and I had one not absorb and pop out and then removed )...I have a stinging aching pain where my bone graft is and they used a vycril suture there as well. ( They said they didnt use ANY Vycril sutures, and they changed the surgery report later to reflect this statement, but the paragraph regarding my bone graft still says Vycril was used there-OOps ) Yes I am extremely frustrated and afraid as I know I come across as. I see my surgeon Monday.The one who gives me like all of 5 mins at office visits and doesnt listen to anything you say.

Sincerely,
FRUSTRATED, sad and with SHINGLES...

Doodles
04-02-2011, 09:31 PM
This is so awful for you. I truly don't understand the use of Caspcian lotion. I have used it off and on for years pre and post surgery when I have a spot that aches so bad it's my best recourse. It burns on the outside and often then later when you shower. And don't get it on your hands or in your eyes. It burns like crazy--can't put in contacts for a couple days after no matter how much you wash your hands. So...I'm kind of confused about this really helping since you already are having burning, itching, etc. etc. I hope you have a list of good questions for this surgeon. If he won't give you time or answers, I think you need to check with someone else. This just doesn't make sense. Maybe that's used for shingles but it seems weird to me. jI would think your surgeon would be pretty concerned about shingles along the incision. Janet

naptown78
04-02-2011, 09:46 PM
Leanne,
Ask you physician for a script for Valtrex. This is a commonly used drug to decrease pain and itching associated with shingles. So sorry to hear of your troubles...

JenniferG
04-03-2011, 12:20 AM
I'm not surprised, your description certainly *sounded* like Shingles. It took a long while to get your results Leanne. I hope you get some relief now that you know for sure what it is.

I tend also to agree with your take on possibly having an allergic reaction to the hardware or the sutures and the possibility it could cause an auto-immune disease. I'm hoping it's just the sutures. You will need that hardware for a few more months to ensure proper fusion.

If it's just the sutures, and you already knew you shouldn't have had that particular type, your surgeon has made an error causing you a great deal of pain and anxiety. I presume the sutures can be removed?

leannebr
04-03-2011, 01:44 AM
Just reading the resposes and looked at my post ..I am sorry for carrying on with my woahs. Boy did I vent on that one-yikes.
Yes it is comforting to KNOW it's Shingles. I felt better when I learned actually. Pain then turned more to an itch. :) I sure dont understand the Capsaicin cream as a fix for the pain, but I did read somewhere online it can help with long term permanent nerve pain from this. How, is strange because it does burn like...-- bad.
I am a little concerned about the other stuff I read about internal organ damage etc since it's all inside and on or very near my spine and fusion. With being on the chemo drug Methotrexate for the arthritis now its scary. Seems like every disease you read about can be caused by and is dangerous for people on these auto-immune suppressive drugs.All the warnings say if you are and you have this or that or symptoms see your dr right away. Well, I did. I saw 5.
We all know our bodies the best. I knew. I also feel my bodies reacting to the implants or something else. And I believe in positive thoughts will heal, so my negative thoughts have not helped me !!
I have quite the list of questions and concerns for my surgeon Monday. He will probably run. Thanks for the well wishes and help. It is so good to hear from others. It helps boost the spirit.

leannebr
04-03-2011, 01:48 AM
By the way, Jennifer your pictures are absolutely amazing and incredible and you look so great in your final after surgery pic. You are very blessed and I am just so happy to see that. You had an amazing Dr and also God watching over you. It just really inspired me to see your pictures. Yay!!! :)))))))))))))))

JenniferG
04-03-2011, 02:33 AM
I just went and had another look at that after-surgery pic, not that I need reminding how lucky I have been, I feel very lucky and thankful towards my surgeon. But looking at that pic, I thought, "Hmmm I'm overdue for a mole scan, best get those little blighters seen to." Wouldn't want a mole to become my undoing after spinal fusion surgery.

I don't know anything about Capsaicin cream, and I'm sorry it hurts so much. I really hope that somehow, it helps with your pain and itch. At least you now know the reason for the pain and itching in that area.

I'm glad you're seeing your surgeon on Monday. I hope you can pin him down for answers to all your questions. Perhaps a list would be a good idea, two copies, one to hand to him and keep one for yourself to take notes? Let us know how you go Leanne.

golfnut
04-03-2011, 08:12 AM
Leanne,
I really feel for you. I hope you can get rid of the Shingles. Sharimsu on the forum also had shingles after her surgery. Prior to that, she had an infection. She certainly had some bad luck too, but is doing well now.

Pooka1
04-03-2011, 08:42 AM
Just reading the resposes and looked at my post ..I am sorry for carrying on with my woahs. Boy did I vent on that one-yikes.

No actually I think people who are having post op issues really appreciate detailed testimonials and outcomes like you have posted to help them figure out their issues.

It's generous of you to bother to post these details when you are not feeling well. Amazing actually.

So thank you.

jrnyc
04-03-2011, 10:22 AM
i agree with Sharon...
and...this is the place to vent...you are not just venting, either...
you are sharing information that can help other patients, while maybe receiving some feedback that might help you
this is the place people will understand, sympathize, and listen!
the forum is, in a way, "your people"

i appreciate the info about very thin people not being recommended for this fusion surgery...my surgeon told me that such patients "often need the screws at the hips removed" after the spine has fused," but never said a word about the Medtronics statement that you quoted....i dropped to 87 pounds last year, on a 5'3" frame (5'5" before my spine started collapsing on itself)...but the surgeon never mentioned anything the company had to say...he said he could operate on me, as long as my nutritional health was OK'd by a nutritionist...so thank you for mentioning what the company said!

you are in my thoughts and prayers
i so hope you can find a top surgeon who does revision, and is both able and willing to help you, when you are ready to consider such a course of action...

jess

Elisa
04-03-2011, 11:16 AM
So you DO have shingles after all. Well, good for you for figuring it out and I do hope you get this all sorted out as I can only imagine how uncomfortable you feel. My sister had shingles right after one of her cancer treatments and she said it felt absolutely awful. She was prescribed the cream that starts with a 'Z' but can't remember the name anymore.

gardener
04-03-2011, 04:18 PM
Leanne,

I use Lidoderm patches for pain across my sacrum. I appreciate every non-narcotic that provides some relief. Interestingly, they are specifically labeled for shingles pain. Each patch is about 4"x6" and has a sticky layer with lidocaine on one side. I can use 3 at a time for up to 12 hours. I am also thin and find that the medicine helps on my thinnest areas as it doesn't go too deep. They're not cheap but my insurance covers the prescription cost. It might be worth asking about them.

debbei
04-03-2011, 07:53 PM
I had that deep itching for about 1.5 years. I hardly have any of it at all at this point, but when I did, it was very deep, very strong and I wanted t scratch myself raw!!

Lilysaidwhat
04-04-2011, 09:12 AM
good luck today with your appt! If he tries to leave before all your questions are answered say,"I'm not finished, wait."!

leannebr
04-05-2011, 05:30 PM
Thanks Lily ~ :))
Had my apt yesterday and after he learned I had been to the U of M for a 2nd opinion and a CT because he hadnt been addressing my issues/ pain, I got the red carpet treatment. Well, I just mean I got some attention. He is telling me ( as he has before after the surgery and every dr I have seen since the surgery) that the hardware is ittirtating me inside proabably because I dont have any tissue, am too thin they say. He said the "bump" is probably a screw under my skin. My problem with this is, the I was not a good candidate for the surgery then if I'm too thin and dont have enough tissue coverage for the implants. His answer was, "I have done this surgery on 12 year old children". I will say, that in every movement it rips my insides a little more whatever it is and with the shingles its been out of control pain. Had some blood drawn and will know tomorrow on that. He put a request in for a Bone growth stimulator to my insurance. Was with him about 45 mins and felt like he listened this time. I dont have much for answers still to the pain. Still alot of "probablys"..And a prescription I guess I HAVE to try for Lirica. Similar to Nurontin, and unfortunately after terrible side effects from Nurontin when I tried it, I'm not too anxious to try anymore anti-siezure/anti-convulstant drugs that may help with pain.

leannebr
04-05-2011, 05:34 PM
I did have a LIST, omg you should have seen it when I went in yesterday. It was too long tho. I tried to get as much answers as I could. But kind of left in the dark a bit I felt. hardware needs to come out at some point is all I feel now..

leannebr
04-05-2011, 05:41 PM
I have tried the Lidoderm patches. They dont help with this pain, and weird as it seems, they make it burn.I end up ripping them off after an hour. I think Shingles pain may be different. The Capsaicin cream is the same as Zosterix and it is WAYYYYY too painful to use. Used it for the last time the other day and it burned me so bad inside (near my spine where the shingles have been ) that i felt the pain would make me puke. i was sick with the pain. Close to going to the ER but washed it a few times, then aloe vera tylonal and after about 1 1/2 hours the pain subsided enough to manage. This cream is supposed to "trick the brain" too help with nerve damage I guess. I would say it really just kills you with another pain (like a severe burn feeling ) and that "trick" makes you forget the other pain you had before it. I have live and learn I guess...

leannebr
04-05-2011, 05:46 PM
I Have you had the surgery or are you thinking about it ? To anyone considering it, I recommend the Medtronic website for information on the implants. I googled the CD Horizon" Legacy" for the implants I have...but I did this unfortunately after my surgery.If I had read it before ( the contraidictions etc ) I may have decided not to do the surgery, or at least pressed the question on my being a candidate for the surgery.

leannebr
04-05-2011, 05:48 PM
Hi,
Can you tell me Sharimsu"s screename or something so I can ask her/ him questions? Or ask them if its ok for me to? I would like to discuss their issues they had as they sound like they maybe could help.

leannebr
04-05-2011, 05:57 PM
Thanks for sharing with me anyway, because it helps!

jrnyc
04-05-2011, 06:33 PM
sending a private message, leanne

jess

golfnut
04-05-2011, 06:53 PM
Leanne,
Shari's name on the forum is: ShariMSU You might be able to send her a personal message.
Her web page is: www.scoliosisthejourney.com
She has organized meetings for people with scoliosis from Michigan. I know she would be interested in talking with you.

leannebr
04-05-2011, 07:18 PM
Thank you!!!!!!!!!

jrnyc
04-06-2011, 08:35 AM
i am so glad the surgeon finally listened...
but i hope you find another surgeon who will discuss hardware removal with you...
someone who doesn't need to feel defensive, and who does lots of revision surgeries...

hope you feel better
jess

jeneemohler
04-06-2011, 05:27 PM
Leannebr, thanks for answering us all!! It takes a lot of time. Maybe it takes your mind off other things...

Man oh man do I sure hope you get some relief. I feel so badly for those of you with issues after surgery. It is hard enough to decide to go forward with surgery, and then so difficult second guessing if you made the right decision. I hope you find someone who is sympathetic, or at least somewhat understanding; and one with some answers or at least options. There seems to be a lot of successful revisions on here, when they find the right doc. I hope you will be one of them!

And I just cringe thinking about you having shingles on top of the surgery complications. For those of you that don't know, they are extremely painful just by themselves... People explain it as one of the most painful things they've ever had. My hubby tries to talk all the older folks he can into giving them the vaccination, with what he has seen with it. Hang in there, girl.

I have nothing at all going on like you have, but I am also very slender, and I do have pain where the rods end up at T3. It is getting more painful the more active I become. Not in the spine, but just on either side of it. It is so tender and burns like a son of a gun sometimes. My hips are still sore, too. But I may be overdoing it, also. I'm up and running around all day, and never find time to sit or lay down for a bit to get some pressure off the spine. If I do sit, I end up sitting TOO long at the computer with a project and that doesn't help either. I need to change it up throughout the day... I get to start PT next week, and also have a Dr. appt, so I will ask about it. I'm thinking it still just needs time to get used to it and "wear in". It seems like it has been forever already, then I stop and think I'm not even quite 3 months. Still early in the grand scheme of things!

Sure hope you feel better soon....

peachrush7
04-06-2011, 09:31 PM
I have nothing at all going on like you have, but I am also very slender, and I do have pain where the rods end up at T3. It is getting more painful the more active I become. Not in the spine, but just on either side of it. It is so tender and burns like a son of a gun sometimes. My hips are still sore, too. But I may be overdoing it, also. I'm up and running around all day, and never find time to sit or lay down for a bit to get some pressure off the spine. If I do sit, I end up sitting TOO long at the computer with a project and that doesn't help either. I need to change it up throughout the day... I get to start PT next week, and also have a Dr. appt, so I will ask about it. I'm thinking it still just needs time to get used to it and "wear in". It seems like it has been forever already, then I stop and think I'm not even quite 3 months. Still early in the grand scheme of things!

Me too! I have that pressure where my fusion ends at L4. I also have pain that goes over my right hip when I'm super active, or sitting too long. I realized that my hips, stance, walking, and sitting are all being done differently now that my back is straight. I have to consciously remind myself to take breaks or else I pay for it big time later. At first I was worried about the hip pain, but I can feel it's the muscles all pulling, I think they are just super tight, and slightly confused lol. The "baby-steps" physical therapy I'm doing does seem to help. And by baby-steps I mean babies could do the stuff I'm doing =)

Leanne, I really hope you get some relief. I have also been seeing a massage therapist who is an angel. I lay on my back (don't know about laying on my stomach ever again?) and she gets my neck and shoulders to relax, doesn't go near my fusion. She also massages my legs, especially my left one with the bad residual pain. I highly recommend it if you can go, or maybe your skin is too irritated? Also, I still take at least one very hot shower every day, to keep those muscles nice and loose.

This surgery is so tough to recover from, and you seem to have so many things making it even harder. Way to keep fighting for yourself! 5 doctors? Whew, I would have been in tears after the 2nd one, I do NOT enjoy sitting in waiting rooms or on exam tables right now!!! But it goes to show how we MUST advocate for ourselves. Only we know our bodies, and if we feel like something is off, we have to listen to it even if "experts" are telling us otherwise.

I had 8 different scoliosis surgeons, neurosurgeons, and orthopedic surgeons all look at the same MRI and tell me nothing was wrong, even though I was loosing function in my left leg at the age of 25. It took the 9th dr I saw to suggest doing a discogram, and ta-da, there was a herniated disc that was so bad it was cutting off the function of the L2-3 nerve root. I remember just getting so angry and frustrated when these dr's took 2 mins to look at that MRI and then shrug their shoulders and push me out the door.

anyway, sending you some prayers and some encouragement! I try to remind myself that we'll never have "fixed" spines. We are just choosing one problem over the worse problem of the progression of the curves. It does get tiring though, all the work we have to do!

Blessings!!!

leannebr
04-06-2011, 10:16 PM
You 2 have been through far more than I have with the surgerys youve had compared to mine I think. I really, just get emothional, all choked up fight fight the tears when i look at your pictures. Because it touches me to the heart, we are connected. We have so much in common, and its comforting to have you out there even far way in touch. As I'm typing this I cant hardly see the keys from the tears. I must be tired, I need to go to bed.:)
Everything you both mention I can so relate to all of it. I have such odd pain. It changes by the week. But I am so thankful the Shingles pain is subsided lately. it turned into an intense itch inside along my spine for days and that has gotten better now. Each day, week is something different and so intense I feel like I broke something.
Probably is nerves waking up finally? So now I feel EVERYTHING. lately its the, I call it the bandaid coming off inside sticky feeling. Each movement feels like a bandaid sticking and pulling but moving. Weird? Well I AM !
I have been told by my surgeon several times and all other Drs Ive seen that the hardware is irritating my insides near my skin and muscles because I'm "so thin". I dont agree that I'm all that "thin". I have these bumps in a few places that stick out on my back tho and it gives me the willys to feel the hardware there. Unless its more unabsorbed sutures(?) If they are, my surgeon isnt going to tell me. My surgeon Monday carried on and on about how he has done 12 yr old kids etc when I asked if maybe I wasnt a good candidate for the surgery. he got kind of defensive. I am eating like a sow, and believe me if I put on weight it wont be over my over my upper back or anywhere else I WANT it. :)

To my new found friends, thank you for being there, for this circle here that you all have created with eachother. Its kind of like sisters. Well kind of anyway. :)

leannebr
04-06-2011, 10:37 PM
My surgeon didnt seem to want to remove the hardware. He seemd to feel it should always stay. Yet the Medtronics website seems to say it shouldnt stay in permenantly. My Dr said he usually wont even consider it IF he does, until a year post op. I am getting a bone growth stimulator and OH I PRAY that it speeds up my fusion or makes me FUSE. :)
I saw my "ex" Rheumatologist today for the last time. She put me on the chemo drug and did prednisone injections and after I learned they reduce healing, lower immunity ( look at Shingles causes-one is chemo/atuimmune drugs ) and they cause bone calcium loss etc. She kept telling me ( literally having staff call me back after I'd call regarding the chemo drug side effects i have ) to tell me to see another dr without any explaination as to why. She was washing her hands of me. I asked for a referal letter for Mayo but she was a very odd cold dr and she acted like it was ridiculous.

jrnyc
04-07-2011, 05:00 AM
hi leanne
please be really careful...any doctor who would prescribe what did, then quit on you, sounds like a doctor you do not want to have!

i think if you can get the opinion of a top surgeon or two about the possibility of hardware removal after you have fully fused, that would be the best thing to do...someone who really knows their stuff, like Lenke, Boachie, one of those guys!

i searched the Medtronic site today to look for what they say about rods in thin people, but couldn't find anything...so i wrote an e mail to them....will see if they respond...

hope you feel better
jess

jeneemohler
04-07-2011, 01:21 PM
Leannebr, I agree with Jess 100%. It may be time for the big guns. Only the doctors who know their stuff, who deal exclusively with scoliosis, will understand your issues. It would sure be worth a shot, if you could find some relief. You see the names of the great docs over and over here on the site. I hope you get in to see one of them.

As far as my surgery being worse, I don't think so. Pain of a 16 level vs. a 9 level fusion is still pain, no matter how many levels!!! I may not be as mobile or flexible, but I didn't have shingles...

And yes, we are all connected by this crazy condition. Thank goodness we can be here for each other on this forum! Information and just downright understanding and compassion are so necessary sometimes. Vent any time you need to!!!!

leannebr
04-07-2011, 09:40 PM
Who are thee BEST surgeons from what you see hear and know? I havent been on here very long so I dont know. The closest to Mn I guess.
I asked the Rheumatologist for a referral letter to Mayo Clinic in Rochester Mn. She will actually hurt my chances of getting in she was so mean when I asked questions about the drugs she put me on after my surgery. She got very defensive and snobby and when I asked her for a letter referral I could tell she wasnt going to help.
But for Mayo Clinic you have to have a letter from a Dr asking them to see you for a very good reason. Mayo has a year long wait and wont accept new patients right now unless Dr reviewed and approved threw your Drs request letter. Ive heard they are the best in the world for some things but dont know about spine. They are about 2 hours approx from me.
My insurance will require the same letter and have to aprove as well, any Dr or clinic outside of my insurance "network".
On the website, I typed/ googled Medtronics Legacy I think and the CD Horizon came up. Let me know if you dont find the information I mentioned about tissue coverage.

leannebr
04-07-2011, 10:12 PM
Here is the link to the information i read on the Medtronic implants I believe I have. My surgery report says its a Legacy which I was told by medtronics is a "model" of the CD Horizon.
Let me know if this link works ok. The info I found re our discussion is under Contraindictions ( inadequate tissue coverage and titanium metal allergy etc ), and Potential Adverse Events is where I saw the bursitis and auto-immune disease listed both which I got and have now since the surgery. :(

http://manuals.medtronic.com/wcm/groups/mdtcom_sg/@emanuals/@era/@spinal/documents/documents/wcm_prod027751.pdf

jrnyc
04-08-2011, 03:09 PM
thank you for posting the "manual," leanne

does the reference to "inadequate tissue" mean thin patients?
since i am not a pediatric or adolescent patient, i was not sure if that is where they are stating that thin patient shouldn't have the rods...?

can you get yourself on the list to see Dr Lenke, no matter how long the wait?
no harm in being on a list...you could always cancel if you needed to
people seem to always be hoping for him to have a cancellation anyway, so they can see him sooner...

jess

leannebr
04-09-2011, 01:48 AM
Should I ? Where is Dr Lenke located? Was he your surgeon ? My insurance probably wouldnt cover going there, outside of state. I'm sure he's not in my insurance "network". I am hoping for approval to go to Mayo Clinic for the auto-immune disiease I have since my surgery, and Mayo and my insurance both need a letter from a Dr in which they will REVIEW and decide if they will give approval. Has to be neccessary and referred etc. Iwish...

jrnyc
04-09-2011, 06:06 AM
i have not had spinal surgery, leanne

Dr Lenke is in St Louis...he is one of the best and has done many many revision surgeries...
you wont know what your insurance company will do for you unless you tell them what you need
also...have you looked at the SRS list on this website and looked up the surgeons in your state??.... there are several listed...i do not know which are best, but maybe someone on forum does...
have you already asked your insurance company to send you to Mayo clinic...??

i am wondering if you can find a patient advocate to help you...
i think finding a social worker at a community center or asking thru such an organization would be helpful....not necessarily patient support thru insurance, as they have the insurance company to answer to...
if you have a local church or community center, you could call and see what services they have to offer....

jess

golfnut
04-09-2011, 01:37 PM
Leanne,
My surgery was Jan. 5th with Dr. Lenke. I am out of state, but only 35 miles, so my entire hospital stay and surgery cost me $250 out of pocket. When I was having doubts about surgery, several of his patients from this forum contacted me with reassurances that I had one of the best surgeons. My recovery has been so much better than I ever hoped (so far, anyway) I just think his patients seldom have complications because of his skills and experience. I also know he takes the most complicated cases( now that's he's president of the SRS which takes some of his time) which you would probably qualify for.

Here is a link to his web site:

http://www.spinal-deformity-surgeon.com/

There are patient stories, before and after pictures, and videos. I realize it depends on the type of insurance you have, but most of the gals who contacted me were out of state. If the link doesn't work, I'm sure you can just do a google search: Dr. Lawrence Lenke

leannebr
04-09-2011, 04:27 PM
Thanks alot. I will look into seeing Dr Lenke. I have a referral to Mayo Clinic from my RA dr ( whos washed her hands of me tho ) and havent heard on that. I really need to see the best drs out there for the auto-immune disease I got after the surgery. I am having a hard time with it. Was started on chemo drug Methorexate months ago, and given Prednisone injections all of which are very bad for healing and fusing. I will talk to my insurance on Dr Lenke.