Back again after 5 years! HELP!

[twinsmom]

I used this forum and got great help five years ago with one of my twin daughters. We are back with the other twin who also turned out to be infected by the same bacteria. She went to several docs with fever, sweats, chills, and more and more back pain. No one listened to her and her sister's fears. They discovered the sinus tract infection on her back this summer and she almost wasn't seen by doc due to the secretary not believing she needed to really be seen. She actively had to push for an appt. Labs were high for inflammation they had been up previously but docs said no problem no worries.. This was same doc she and her sister had. Had surgery. Hardware removed. Had to be readmitted for blood transfusion. Operating Notes according to other department heads showed little blood loss. Hard to say what actually happened. Since the transfusion she has been better but back is worse than before. The incision site is suppossedly okay but has had yellow green drainage lots of little opening like holes, crysts alongside incision, scabs that open and close. Family relatives with med background says at least looks like topical infection. Ortho docs says no. Lab work looks really good they want her off the antibiotics. She and sister are concerned that there still is lingering infection. They both eat healthy and live healthy. What to do with their concerns and fears?

[Pooka1]

Hi Twinsmom,

I did see your post but wasn't sure what to say. But I have an idea now! I think the situation is complex enough that Mayo would take your girls. Mayo takes complex cases that have stumped other doctors who aren't listening any more because they can't help. Please write out a detailed history with the dates of all operations, doctor visits, symptoms, treatments, etc. Obviously your girls need help. I hope Mayo takes them and can solve this.

I am going to post this to the group to see if someone will comment on my comment. Don't give up. I am so sorry your girls and you are going through this. How you write about this makes it obvious you are doing a great job and will find the answer. I admire your efforts and what you have done to date.

Best regards,
Sharon

[jackieg412]

I agree. Go to a major hospital. You say you are from the Midwest. The university of Chicago was able to find my problem. And they have a children's hospital. There is also the Ann and Laurie Children's hospital in Chicago

[titaniumed]

I also saw your post and didn’t know what to say, but I do agree with Sharon and Jackie....

I can understand them being concerned about lingering infection.....

I don’t know what the answer is. Maybe buy a UV light and lay under it????

Some links you might be interested in....

http://www.eurekalert.org/pub_releas...-sse101212.php

http://www.infectioncontroltoday.com...let-light.aspx

http://www.healthcareitnews.com/news...ection-control

Stay strong because there is an answer.

Ed

[LindaRacine]

Like the others, I also saw your post. Unfortunately, I found it difficult to follow (probably has a lot to do with it being twins and the insertion of some facts that aren't part of the problem), and not sure I have any knowledge to help.

If the labs are good, it seems to me that it's unlikely that infection is the cause of pain. Do both twins still have their original implants?

[twinsmom]

yes it was confusing but the last two years have been confusing! M. had her surgery to remove a screw and was fine then had infection with four impacted wisdom teeth that ID Docs said was probably caused by p acnes. After that I pushed to have her seen by a Heme person who was the nicest and dismissed her night sweats. She continued to have problems and I would call ortho just to keep him advised. Girls had a love hate issue going on with him. Then they had joint pain and face rash so M went to Rheum where eleveated cpr and sed rate were found with a postive antibody that is rare except for those with lupus. Again we mentioned the sister's surgery and issues with p acnes. Went to see ortho in april he said the problem was she was too skinny and rec PT and back massage. Bad if you have infection.
Meg has worked on visit to HHS with ortho. I was pushing for Mayo too - Doc would give referral.Hard with HIPPA and girls away at school. Dicey. All my research has not shown anything about p acnes infection after instrumentation removal. Big fight over whether she had osteo. ID and HEme yes Ortho has changed according who is doing the talking. My worry and theirs is that there is a bone infection due to osteo p acnes can cause it if rarely. I am sorry I am asking for help so late. Didn't want to burden you and was hoping for good outcome. Maddie had her instrumentation removed and put back in due to back collapse. She still has pain issues and went through physcial withdrawal freshman year with meds. She searched and found paper strips for meds so she could titrate.
Thanks for the support. This is hard to even tell traumatic in and of itself. Chicago is good idea too.Will pass it along. Girls are reading this!Thanks again sorry for traumatizing but what are you going to do!

[twinsmom]

I used this forum and got great help five years ago with one of my twin daughters. We are back with the other twin who also turned out to be infected by the same bacteria. She went to several docs with fever, sweats, chills, and more and more back pain. No one listened to her and her sister's fears. They discovered the sinus tract infection on her back this summer and she almost wasn't seen by doc due to the secretary not believing she needed to really be seen. She actively had to push for an appt. Labs were high for inflammation they had been up previously but docs said no problem no worries.. This was same doc she and her sister had. Had surgery. Hardware removed. Had to be readmitted for blood transfusion. Operating Notes according to other department heads showed little blood loss. Hard to say what actually happened. Since the transfusion she has been better but back is worse than before. The incision site is suppossedly okay but has had yellow green drainage lots of little opening like holes, crysts alongside incision, scabs that open and close. Family relatives with med background says at least looks like topical infection. Ortho docs says no. Lab work looks really good they want her off the antibiotics. She and sister are concerned that there still is lingering infection. They both eat healthy and live healthy. What to do with their concerns and fears?

Thanks this has been a very unbelievable journey. I hope it ends well! Thanks for your support! Mary

[Pooka1]

Hi Twinsmom,

It is really hard to follow what you are saying. Can you speak of each girl separately (one had the instrumentation out and the other didn't yes?). Can you post a list with dates of what symptoms happened starting with the surgeries?

I think they had surgery on the same date if I recall, yes? Is that correct? You are going to need this for the application to Mayo if you go this route.

So it would be:

Kid #1: Surgery date - , symptoms X, Y, Z how many months later.

Kid #2: Surgery date - , symptoms X, Y, Z how many months later.

[twinsmom]

Same surgery day 2009
oh yes both no no menses!!!! for over a year!
twin 1

Winter 2010 clean out and removal of screw

Spring 2010 sinus tract infection burst with drainage instrumentation removal screws were loose!

two weeks later back collapse 6 inches

oral antibiotics - my choice now deceased sister almost died getting medport put in for chemo total blood volume loss
Fall 2010 re-instrumentation

2013 gut issues stopped gluten changed to healthy eating sister soon followed most gut issues resolved

pain management issues told pain management doc meds come on strip and weaned herself from pain drugs that way still on one for sleep issues.

twin 2

virulent Mono and strep experiences post surgery life

fall 2013 removal of screw due to pain and ROM issues

fall 2014 four wisdom teeth impacted removed dry pockets and three infections -oral cavities had to cleaned out of infection dead tissue - oral antibiotic which works well with p acnes

fall 2014 night sweats, tiredness, chills, some fever low grade tested positive for Epstein Barr

spring 2015 more of the same including joint pain for both and red rash on face for both rheum visit tested positive for ANA and had elevated cpr and sed rate

ortho doc notified -
specific secretary was supposed to relay message of the medical visits, the info and my concerns to doc and cnp
no follow up from office ever happened

summer per ortho doc back massages and Pt since pain was result of body weight ROM worse!

late summer bad and first and only case of acne all over back cysts and face and chest
then soft spot warm to touch

doc office called same secretary gave her hard time in getting an appt. Surgery scheduled at office visit asap

surgery no blood loss noted in
ER visit re low grade fever and pain and some discharge. didn;t want to go or be there cpr and sed elevated left

very anemic and put back in hosp by peds service full round of evals
nothing specific found
blood transfusion
drainage from incision soiled pillow at hospital off and on green and yellow and clear changing amount and color

after dc hole opened up at top cysts formed along side incision scab at top open and closes gets dry then damp again.
suture for open hole - others pop up pin pricks
sed and cpr rates down

lab work great now
suture removed
pain management ref.
pain worse than before surgery ROM issues which had been good just after surgery back
has to walk not sit!! ortho had said this was typical with infection!!!!!!!!!!!!!!!!!!!!!!!!!
does not want to become dependent on pain meds saw what happened to sister
pain interfering with daily llife school and work!!!!!!!!!!!!!!!!!!!!!!!!!! to the max

I hope this clarifies things!!!!!!!!!!!!!!!!!!!

Let me know!

I have seen surgical incision from other twin after infection nothing like this in any way shape or form!!!!!!!!!
If it wasn't for the incision looking so yucky and the doc saying being unable to sit and having to walk is classic sign of SSI
I would say pain is from fear ,anxiety or healing issues.
This makes me very worried. Does not make sense with this strange scenario!!!!!!!!!!!!!!1

[Pooka1]

Twin 2: doc office called same secretary gave her hard time in getting an appt. Surgery scheduled at office visit asap

surgery no blood loss noted in

Was the instrumentation removed in this second surgery?

Also what is SSI?

Just a general remark... I am not a doctor but it seems like some of the issues you are including in this history are not related to the scoliosis and back surgery but I don't know that. While you have to have a complete medical history so that the doctors can decide what is related and what isn't, you shouldn't necessarily assume things are related.

I think you are doing a great job keeping track of everything! This is going to matter.

[twinsmom]

Hi again,

i agree some symptoms may not play role with scoliosis but they may - and who am I to say -play a role with a bloodstream infection which p acnes can be as well as if osteomyletis which affects the whole body. So not for the ortho back issue but for infection - i have no idea and have not been given a good solid answer to my questions. My mind wants to wrap a syndrome or something that ties everything together!!!!!!!!!!!!

Yes the instrumentation for twin 2 was taken out this summer. First twin was given instrumentation, second twin was given her hardware 2013 after her second surgery, nothing was given to twin on most recent surgery said there was a rule to give to pathology!!!!So Mayo? Chicago? HHS? What would be the most intelligent choice?

[LindaRacine]

Has she been seen by an Infectious Disease specialist? If not, that's the first place I would turn. I don't know about elsewhere, but it's difficult to get accepted into the ID practice at UCSF. There's way more demand than supply.

--Linda

[Pooka1]

Hi again,

i agree some symptoms may not play role with scoliosis but they may - and who am I to say -play a role with a bloodstream infection which p acnes can be as well as if osteomyletis which affects the whole body. So not for the ortho back issue but for infection - i have no idea and have not been given a good solid answer to my questions. My mind wants to wrap a syndrome or something that ties everything together!!!!!!!!!!!!

Yes the instrumentation for twin 2 was taken out this summer. First twin was given instrumentation, second twin was given her hardware 2013 after her second surgery, nothing was given to twin on most recent surgery said there was a rule to give to pathology!!!!So Mayo? Chicago? HHS? What would be the most intelligent choice?

Okay so Twin 1 had hardware removed and then placed again and Twin 2 had hardware removed and not replaced, yes?

[twinsmom]

yes! one has the stuff in the other just recently had it out.

[susancook]

I agree with Linda about your seeing an ID specialist, preferably one in the same hospital/network or city as your scoliosis doc. I also have a P. Acnes spinal hardware infection. There are various perspectives on how long to stay on antibiotics. I have IV Picline antibiotics for 6 weeks and am on oral antibiotics now for at least 1 year, but probably for the remainder of my life.

Hope that you find some help for your daughter.

Hang in there and be the best advocate that you can be.

Susan