I feel crackling, andI have itching inside now in my spine

[golfnut]

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]

golfnut

Thank you!!!!!!!!!

[jrnyc]

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]

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]

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]

Jenee & Peach

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]

jrnyc

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]

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]

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]

jenee and jrnyh

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]

jess and others interested

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/gro...prod027751.pdf

[jrnyc]

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]

jess

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]

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]

Dr. Lenke

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