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View Full Version : how long to wait for fusion..



leannebr
07-14-2011, 11:47 AM
I had delayed fusion at 5 1/2 months. I am 8 months now and having had 4 cts within a month back in march and April I cant have anymore to check fusion for awhile. ( not sure how long ). I was told an x ray doesnt show fusion so how do I know if and when I have fusion, and how long do you wait for this? I had an x ray recently and asked the dr if there was fusion and he didnt answer me.. I sat there with no reply. Did he not answer because its too late ? he also told me to go ahead and take NSAIDS all I want now for the pain.Is there a point where it won't fuse anymore or can it take a year or even more so you wait and hope?
I have a alot of burning and stinging in the hardware all the time. Each day is really a struggle and I think I'm addicted to Oxycodone. I move certain ways and my body sweats and I turn into an oven yet I feel clammy with no fever. I have degeneration at the top of the rod ( neck ) T-2 and the bottom of the rods at T-11 and both areas cause alot of odd pressure and weakness pushing me forward.
I havent found a new surgeon interested in helping me in MN. They all tell me to go back to my surgeon and wont acknowelege my stinging and burning pain even in their medical reports. One said he was my surgeons partner for years.Too late for fusion or still keep hoping ? I would like the implants removed.

JenniferG
07-14-2011, 05:47 PM
I've been wondering how you've been doing. Has there been any improvement at all? I have read that fusion can continue up to 12 months or more. I think the avoidance of anti-inflammatories is only in the early months, but am not positive of that.

If I was you, I'd be looking to see someone out of your area, one of the top surgeons often mentioned here. I know, it's difficult. The distance, the costs involved. But you're not getting anywhere with your surgeon or surgeons in your area. And there's obviously something wrong. And you have a lot of life to live.

My surgeon looked at my x-rays at 6 months and said he could see fusion but I don't think it's good enough to tell that full fusion has taken place.

Let us know how you go, good news or bad, it's important that it's recorded here for those thinking about fusion. Wishing you the best Leanne.

leannebr
07-14-2011, 08:54 PM
Hi Jennifer,
I still have terrible burning pain along the hardware all the time. Knees are weaker now, like theyre going fall out from under me ( its a very odd feeling) , a little fluid still in knees with tendor elbows still ( had fluid sacs in elbows at 1st ).I have been "treated" for Shingles 4 times, but never have a blister rash. The Methotrexate and cortecosteroid injections lower immunities ( slow healing and cause Osteoperosis etc as Ive mentioned ) so treatment with the anti viral if within 72 hrs is important but didnt get that at first. Have a little dermititis type rash along the incision and near but barely noticeable. Ive been to the ER 4xs when the pain was completley unmanageable. The 1st time I had it I knew it was Shingles and it was excruciating because it was along my spine.The last few times it felt the same coming on the burning intensly across the shoulder blade inside, but still no full out rash. I believe its Shingles I keep getting.But wonder still if its a reaction to the metal as Ive also mentioned before too. I have terrible sweats with movement, I turn into an oven and get soaked, but no fever. The sweats make me feel just sick. No help from any Drs. They no everything when I walk in, they offer no help, and they wont acknowlege the burning pain. Not even in their medical reports. I want to go out of state but cant afford it, I cant get any help here. I have almost given up. Recently treated for BPPV. Had terrible vertigo for a week. I was told it could have come from Vestibular Neuritis which I think she said was nerve damage from shingles. I have been doing therapy for my neck. I think Im addicted to Oxycodone, been on it since Nov. I feel very odd in the afternoon, the time I susally take it.
Thanks for asking how Im doing. I have been on a very long road. I pray every day that God is going to change the course here and help me out and take away some pain and the weakness in my legs. Wake up one morning and be pain free. :)) I know there are many many people in far worse condition out there, so please forgive me for talking so openly about my problems. I just get down and pain makes you feel so lonely and isolated. I missed my daughers wedding reception last Sat.Mom wasnt there.. :(
I had intense pain like the Shingles in my back and felt so ill that day. Went to Now care and put back on the Valacyclovir. I took 2 Oxycodone and did my nails and my hair etc tried to go, then went to bed in pain awake all night and very sad.. I am 8 months post op. When does this burning stinging pain end.. Would a dr in another state even help me if it is a reaction to the metal ? Is there a test to tell if it is ? I asked for the implant material from my surgeon and they wrote down "all implant material is titanium". The hospital records show "SS" next to the cross links listed. I had a reaction to stainless steel before so I was so disappointed to see that...

mabeckoff
07-14-2011, 09:12 PM
My new surgeon has said that , from my cat scans and Xrays , he cannot tell if I am fully fused or not. I am 14 months out . Until he goes in on Monday, he cannot tell

Melissa

golfnut
07-14-2011, 09:23 PM
Leanne,
I feel so badly about what you are going through. I can't imagine how hard it was to miss your daughter's wedding. I had an x-ray at 6 months but was not shown any fusion by the surgeon. I know some people have had the beginning of fusion pointed out to them at six months, but I've also been told that you can't tell if you're fused unless you have a CT scan. Maybe Linda knows of a good SRS surgeon near you. I hope you can get some answers and relief from pain.

jeneemohler
07-14-2011, 09:49 PM
Can we have some input from others on the fusion being seen? I imagine that there are much clearer ways to see fusion than xray, but I saw the ghostly image of new bone growth all around my spine and hardware on my latest xrays. My doc isn't well known by you guys, but she trained under the best at Twin Cities Spine and has hospitals and universities sending her patients. So I trust her. Yet others have been told they can't see them on xrays. So I'm confused.... What have all of you been told??

titaniumed
07-14-2011, 10:15 PM
If you look at my sagittal (side) view x-ray in my signature and zoom it in all the way, you will see vertical white lines. I was told that was evidence, it is only from L1-Sacrum, where I had the BMP used. The x-ray was shot at 6 weeks post. You can also see them in my coronal view.

No BMP was used anywhere else, I also had NO bone used at all.

I had ďpeekĒ spacers installed from the front in this area. You cannot see peek on x-rays.
Ed

JenniferG
07-14-2011, 10:28 PM
I feel terrible that you're suffering like this Leanne. You're right, pain is very isolating. I'm so sorry you couldn't make it to your daughter's reception.

I wonder if Linda can recommend someone and whether there is an organisation who might sponsor you to visit the surgeon. I'm clutching at straws, but there are organisations like that here in Australia.

I suppose your Insurance company don't want to know about it? (Sorry I'm pretty clueless about your health insurance system.)

I didn't have the burning but I've read that some people do. I suppose you've tried doing a search on the forum? You've probably tried everything. I'm glad some of the fluid problems are easing.

I wonder, if you have an allergic reaction to the titanium/ss(?) if your body might eventually become used to it.

I'm hoping you can somehow get to see someone well recommended. You definitely need an expert right now.

Thinking of you.

titaniumed
07-14-2011, 10:44 PM
Leanne

Have you been to Twin Cities Scoliosis center?

Please remember that my prior post shows evidence in the BMP areas only. Usually the surgeons use Ctís and can still have trouble seeing evidence.

Here is a thread on SSO and Rachel had a bunch of surgeries and her rods removed. She found a new pain management doc.... Maybe a pain mgmt doc would be worth it?

http://www.scoliosis-support.org/showthread.php?t=12729

Iím so sorry about all this pain.
Ed

mabeckoff
07-15-2011, 12:18 AM
According to David Wolpert , in his book Scoliosis Surgery, on page 63 he states that there is no reliable way to verify whether a fusion is solid or has failed. Xrays and CAT scans and MRIs may not reveal the state of the fusion. That is exactly what my surgeon said yesterday to me

Good luck in getting some relief

Melisssa

leannebr
07-15-2011, 03:36 PM
First thanks each of you for sharing the input. I wasnt able to see the fusion you mentioned Ed, its so hard online to see that. I know one thing, I need the implants out, they are making me sick. I think each person is different and most their bodies accept it but mine isnt. My legs even ache and burn all night still. My back is in a constant stinging pain. I cant take most meds, I have had terrible reactions to nearly all I have tried. Anticonvulsants, and now new allergies to meds I never had before like Ibuprphen and Acetiminophen/Tylonal. Trying to stop the Oxycod but have withdrawel ( I think thats what it is in the afternoon and eve ). I lay on ice packs ( frozen vegs ) off and on all night but am awake all night too, wake up in pain and in a pool of sweat. Probably addicted to Ambien, so didnttake that last night so awake. Saw a neurologist who said he had never heard of the sweats, doubted I ever had Shingles, and had no answers on the stinging pain. He said its just probably Complex Regional Pain Syndrom-something I GUESS drs blame everything on becuse it is broad and no reason for it. I think whats happened is, I was misdiagnosed and treated with some bad meds and injections that may have delayed fusion, caused some Shingles, and camoflauged the other problem for months. Now that they are maybe wearing out of my system, the probem is physicallay showing itself again. Each dr I see knows information about everything when I walk in so they wont help me. My daiughter has been there and said its like they have been notified by the RA dr and my surgeon. Drs do bond and if they THINK there could ever even possibly be cause for a lawsuit they look away and the door is slammed and its hard to get healthcare. Same with the possible metal sensitivity, my surgeon has sent out a red flag, so each dr I have seen knows me already when I walk in and they refuse to listen to where I have pain and they tell me to go back to my surgeon. I have not filed any kind of a lawsuit. For me, I need to find answers and a dr who cares and get my health back. One sspine dr said he used to be partners with my surgeon and continued to tell me that he would NOT have done my surgery, because he felt it is immoral and he would not have done it. he was carful not to point the finger at my surgeon but looked disturbed when i told him the reasons my surgeon gave me to have the surgery. I asked about removal of the hardware and he said he would not do it, it is complicated and again immoral and not to come back to him for 3, 5 or even 10 years. And if I did my apt would be "10 mins". he said move forward and deal with the pain. Asked if I had fusion and he didnt answer. I sat up and nealy fell off the table spinning ( had the BPPV vertigo at that time but sisnt yet know what it was ) The dr and his PA and my fiance were hanging onto me to keep me on the table. The dr said " Oh my, you ARE all sweaty". No concern. I saw that dr the very end of June and recently requested my medical records. I was told the dr still hadnt dictated it.
I just want my health back. I have a friend my age with MS in the nursing home. her 1st symptoms in her legs were similar to what I have been experiencing. I believe if your body reacts to something foreign things can develop. But again I dont know whats happening to me. The Neurologist spent most of my apt trying to contradict everything I said, did no tests and handed a presc for Carbamazepine-sustained release ( Tegretol) and said it was ok to take with everything, and no problems stopping it whenever. I asked about the burning and stinging and he shook his head and said he never heard of it. (?) Ive read Shingles can cause burning in the extremeties, but i really dont know whats happening to me. If I cant find out if I have fusion how can I ever have removal of the hardware..If I sold my home and traveled to get an outside opinion, outside of this circle here, would they help me..?

kennedy
07-15-2011, 11:08 PM
My surgeon at uc davis it takes 1 year to fused

titaniumed
07-16-2011, 11:53 AM
Leanne

Since you are in Minnesota, I think you should visit TCSC or go to the Mayo clinic. Twin Cities and Mayo are specialty centers with many many experts.....People travel half way around the world to visit these centers.

Removing all your hardware is a critical decision.....

I hope you can get this resolved.
Ed

lray
07-16-2011, 04:22 PM
So sorry to hear of all you post op problems. It must be very difficult to have issues such as yours and not getting any good answers from your surgeon.

I saw my postop xrays at 7 months and my surgeon was able to see new bone growth. He seemed very pleased.

I hope that you find relief soon.

SusanS
07-16-2011, 04:47 PM
Leanne,

I am so sorry to hear of the misery you are going through, particularly missing your daughter's wedding. It is scary when your surgeon seems to want to back away and no other doctors are willing to take the case on. I hope you can go to Twin Cities or the Mayo clinic and receive competent care.

It is not acceptable to leave you suffering and without proper medical supervision. I don't know if there are any patient advocates in your state government. I did a quick search and you can file a complaint about a doctor

http://www.state.mn.us/portal/mn/jsp/content.do?subchannel=-536882719&programid=536899143&id=-536882718&agency=BMP&sp2=y

but it would be great if they could help you by advocating for you with your doctor so you can get some sort of treatment plan going and at least have him work with you to address the problems. However, you may not want to keep dealing with him as your complications may be more than a match for his abilities. At the very least he should put you in touch with another doctor who can help if he doesn't feel he can.

I would at least contact this agency and tell them what is going on and ask them for advice on how to get help and an appropriate level of care from your doctors.

I am so sorry you are going through this.

Sue

leannebr
07-17-2011, 06:07 PM
Thank you. I am just wanting to focus on getting well, and filing a complaint against a dr hasnt been a priority. Its been suggested but I dont need the stress. I need help with the pain. and symptoms.
I did actually see a TC Spine Center dr and was really disappointed there. The dr was top of the ladder and didnt help me with any of my symptoms or pain, told me to hang in there, take whatever meds helped, and deal with the pain, and that my surgeon had been his "partner" for a while. After my apt at the TC Spine Center I lost any faith I had left in the medical system here in MN.

djkinkead
07-17-2011, 06:30 PM
I agree with the others about going to the Mayo clinic. You have too many untreated symptoms and need a really good doctor to work with you.

I grew up in the Twin Cities--isn't Spring Lake Park just an outer suburb of the TC? Rochester is two hours away: for everything you are dealing with--certainly this would be worth setting up an appointment and talking to one of the doctors there.

backissues
07-17-2011, 09:14 PM
I am so sorry to hear about your problems.

My understanding is that drs can see fusion from a CT scan and not an X-ray. Also, I won't be having a CT scan for 9-12 months post-op to check for fusion. However, there are times when I feel like I have a baseball bat in my back and other times when I don't feel anything.

I know of a person whose implants broke. She lived in Colorado and needed to find someone to fix this. She didn't want to go back to the original surgeon. The only person who would touch her was Dr. Boachie in NY. This was about 10 years ago. Now, she is fine. She is fused from T2 to the sacrum.

Good luck! You are in my thoughts and prayers that you find a solution and feel better.

leannebr
07-18-2011, 09:11 PM
I would love to go to the Mayo Clinic. Unfortunately my insurance doesnt cover them.T Also, the Mayo Clinic requires a referral from your specialty dr ( ex surgeon or other ) to get in. They decide if they will take you, and I have heard it is a year long wait too. Each time its suggested I get a little sad. I will be able to change my insurance end of the year.
I too, besides all the other symptoms, have this pressure like pushing feeling at the end of my rod at t-11 or 12. Very painful. It clicks when I move. It feels like there is actually bone missing when I run my fingers across it theres a dip. I have a deep area now at the top of the rod as well, just above it thats developed. Above t-2 where the rod begins, its changed and there is a very deep area there. Also feel movement like a click in that area.

paula
07-19-2011, 07:41 PM
My surgeon recommended a bone growth stimulator, beginning two weeks after the surgery. Here's the one that I have:http://www.orthofix.com/patients/bio_spinal_stim.asp

Here are details of how it works:
http://www.bonestimulation.com/spinal/electrical_qualities.html

If you click on the clinical success link, it discusses the use in failed fusion, a bit. I don't know more about it all than what the surgeon's told me and what I've read there.

leannebr
07-19-2011, 08:33 PM
I used a bone growth stimulator for a month. april 2- to may 20. It was really painful wearing it but I never missed a day 4 hrs a day . I dont think thats normal for it to increase pain, but things havent been normal for me. Pain was so bad couldnt wear it anymore. I look at it and wish I could wear it now, but pains just too much to put it on. Mine is sort of heavy, and is hung over the body and held with 2 straps over the shoulders because my fusion is all thoracic.

How would a person go about requesting mayo to look at my case? Would I need to send all my medical records and write a letter ? I wouldnt know where to even begin.. I called May a while back and they said a letter request needs to come from your dr, and they decide if they approve the request. Right now I dont have a regular family dr, am seeing a PA who is just coordinating my care and helping with pain management. Ive seen many drs without answers though..

leannebr
07-21-2011, 07:21 PM
I did talk to someone at mayo Clinic intake line and thats what they said. A physicians referral letter, and for me I would need a pproval from my insurance through a letter from a dr as well. I did see that self referral on their website too before. I wondered about it. Not sure if you can actually get right in doing that or not. Thank you for your suggestions!