Title: 9 months post op C5/C6 ADR
BHPenfold - September 5, 2009 10:09 AM (GMT)
Well Hi all,
As many as you know I had a C5/C6 ACDR on 19 Dec 09 as a result of a trauma accident sustained in Aug 08.
It's now one year on since the accident, and nearly nine months since the operation, and I thought that I'd update you on progress.
Overall I think that the operation has been a sucsess. Unfortunately I am still in pain, but this has been diagnosed as neuropathec pain possiobly eminating for the spinal chord/nerve branch adjacent to C5/C6. I've had a numerous scans etc in attempt to pinpoint the actual source, and I'm seeing a neurosurgeon next week. I've been ramping up on pregabalin at the moment on the recomendation of the pain consultant , and I must say it really is having the desired effect. The odd catching pain, and ache during the day, especially when extended/compressed neck position - but I am impressed, and although there are some side effects the work/life/pain balance is at the moment about right. I have JUST returned to flying in an attempt to revalidate my license before I lose currency, with a three hour flight down to the Isle of Wight last weekend.
It does look like I am going to be on the pregabalin for the foreseeable future - but we will have to wait for the neuro reports.
I'm going into Headley Court for a month in 2 weeks time - hopefully they will be able to get my fitness levels up as well.
Best regards to all,
Alastair - September 5, 2009 01:16 PM (GMT)
I bet the neurosurgeon will put his finger on things for you, please come back and tell us how you get on
sarahp - September 9, 2009 09:08 PM (GMT)
Wishing you all the luck in the world with pinning things down and getting further improvement, I really hope that that things go well with the neurosurgeon, do let us know.
BHPenfold - September 20, 2011 09:39 AM (GMT)
Hi again everyone.
Just though I'd give you an update, as I'm sat here convalescing having just had further surgery. I though it important to share my issues with you.
As many as you know I had a C5/C6 ACDR on 19 Dec 09 as a result of a trauma accident sustained in Aug 08.
The road following the ACDR was not, how shall I put this, trouble free by any stretch of the imagination. The end result has been that after 2 1/2 years of living with the ACDR – it was removed on Friday, and replaced with a full fusion with fusion cage and pedicle screws (through the previous surgery site).
Apart from failing to gain control over the level of pain that remained in my neck, nearly a year after the operation, and about the same time as I posted my last post on here, I began to experience strange skin rashes on both of shins. They initially put it down to the pregabalin, but Christmas 09 it had spread to most of my body. A strange pruritic rash, that was similar to eczema, but as I’d never suffered eczema, I was reluctant to accept this. It got to a stage where I even had full pomphlix on my hands, and could barely brush my own teeth because of the pain.
A massive dose of steroids seemed to clear it up, but the underlying rash on my shins, and around the boney areas (shins, ankles, elbows) etc remained.
2 things were going on simultaneously – trying to establish a pain management regime for my neck and trying to work out what was wrong with my skin…. I suspected that the two were related – perhaps I had an allergy to titanium, however convincing the dermatologist that this was the case was a nightmare, and despite 3 biopsies, all of which proved indeterminable as to a cause, was impossible.
I’ve had all sort of facets joint injections, nerve blocks etc,MRI’s and the pain has never really reduced. Nerve conduction tests confirm nerve damage at the C5/C6 level, which would equate for some of the loss of power, and maybe some of the pain.
In Apr 11, my consultant orthopaedic surgeon decided that he should remove the ACD as the latest MRI showed evidence that the disc was unstable. He scheduled in surgery for August. Over the summer my skin became worse, and I started to develop what can only be described as strange red spots over my body. I had noticed the odd one or two over the past year, but put them down to lifes mysteries. They looked like sore whiteheads, but without any fluid centre. They would come and go over about 2 weeks, but they would leave a sca, very much a vasulitus type spot or bruise.
By the April I was getting more breakouts of these, and began to suspect an allergic reaction or auto immune condition. By July, my wife and I got really bad colds, and took weeks to recover. My operation was delayed until Sep, and I developed rhinitis, then post nasal drip, then a chronic cough. By the beginning of Sep I also noticed that I was suffering from dermographisum – the lightest touches on my skin, such as drying after a shower, would leave bright red marks for about 20 minutes.
I convinced my medical officer to try to arrange for a dermatology ward referral while I was in hospital for revision. When I was admitted on Thursday, my skin was bad, and the dermatologist managed to visit me before the op, and saw how bad it was . She said that she needed to do an urgent biopsy of the really active pots, and she’d try to do that while I was in. She also arranged for a full blood work up and biochemistry to be undertaken.
I went down for surgery at 2.30pm and woke up post recovery at 10.45pm. Recovery was not pleasant, and they had to administer huge amounts of morphine to control my pain. My 7pm the next evening I was feeling a lot better – and so was my skin….
The physio came to see me the following morning and gave me by surgical physio discharge notes. They read “ Old incision extended…….. standard anterior approach R side. Disc replacement identified and removed. Disc shows sign of metalosis and granulation of surrounding tissue – sent for histology…… I won’t bore you with the rest, but he also removed a piece of the old natural disc, that had been left behind.
I couldn’t believe what I was reading. The ACD was effectively breaking down inside me, and leaving microscopic pieces of both polythene and titanium (or metallic components) around my body. While I’ve still got to see the results of the blood test and have the biopsy, 4 days post op and my skin is clearing up, the dermagraphisum has all but gone, my rhinitis has just about cleared up, my cough has gone and my skin feels a lot better. Too much of a coincidence to think that my skin problems and the ACD are not connected.
My neck feels fantastic, albeit a little sore, and I feel really great. I’ll await the follow up etc, but I’m still in a state of shock to think that I was effectively being poisoned from inside. My take on this, is that my autoimmune systems was overloaded by the small particles, and the spots were the bodies mechanisms for trying to get rid of them through my skin……
I’ll keep you posted…
Just though i'd add the disc was replaced by a TM-S Trabecular Metal Cervical Interbody Fusion Device with an 18mm unipltae fastned by 2 x 16mm screws
Lynda - September 20, 2011 11:05 AM (GMT)
:o Wow Brian! Thank you for sharing your progress with us and very best wishes for your recovery. I've read reports of metal allergies and loosening of the prostheses with interest, not sure if I posted them here. I'll try and dig them uo and send you the links. It will be interesting to see what the results of the biopsies and allergy testings show.
I am pleased your revision disc to fusion sounds successful and to have such relief already is very good news.
We have another member, Lorna who had revision to fusion and her revision surgery was successful too.
I look forward to your updates, hoping everything continues to improve from here on for you and thanks again for sharing.
Lynda - September 20, 2011 11:17 AM (GMT)
Alastair - September 20, 2011 01:36 PM (GMT)
Well you are a little "hothouse plant", it's very very unusual to be sensitive to Titanium which your implant was made of, and more unusual for your plastic disc to start and disintegrate. The plastic disc is made of industrial high impact plastic, and usually any problems with that starting to chip or fragment I have always associated I think quite rightly with the prosthesis being implanted badly.
I've had my implant now for over nine years, and it was checked over last year when I had a major surgery and there is no fragmenting at all on that, it sounds to me as if you've just been VERY very unlucky. I hope things cheer up for you soon
BHPenfold - September 20, 2011 02:18 PM (GMT)
very many thank for those links. I have a letter from a consultant dermatogist at Kings that says he can find no evidence of " allergy to a titanium implant".
Such a shame really, as I managed to find a whole wealth of information relating to it. Actually the implant is not pure titanium, but will be an alloy, possibly with vanadium and possibly with chromnium. It has a polyethylene frictional surface, and it may be that simply not enough study was done into the possibility that the ACD was in fact resulting in wear debris hypersensitivity.
Good to hear from you again. I'm not stating that I'm allergic to titanium - what I am suggesting, and hoping that further testing can verify, is that the metalosis and associated wear debris have resulted in my immune system becoming hypersensitive and causing dermatological effects. That’s slightly different to being allergic. The second link in Lynda's post) has a lot of very interesting facts about spinal implant debris.
Lynda - September 20, 2011 03:01 PM (GMT)
There is much published on metal sensitivities .... your consultant dermatologist musn't have looked in the right places! (Although admittedly sensitivity to titanium is rare.) Or was he meaning no evidence physically when he investigated/examined you??
Volume 3, Issue 4 , Pages 143-160, December 2009
A review of the biologic effects of spine implant debris: Fact from fiction
Nadim James Hallab
Metals known as sensitizers are beryllium, nickel, cobalt, and chromium, while occasional responses have been reported to tantalum, titanium, and vanadium. Nickel is the most common metal sensitizer in humans followed by cobalt and chromium.
I will be very interested to know the results of your investigations and histology and whether they confirm your suspicions Brian. Is your surgeon planning to write a paper on your case? Maybe you should suggest it. Out if interest, if you don't mind me asking, what make of prosthesis did you have explanted?
Alastair - September 20, 2011 03:06 PM (GMT)
Well please let us know how you get on Brian if they do any sensitivity tests on you and if the dermatological people come up with anything.
It's very unusual for plastics to be breaking up because the plastics have a very low coefficient of friction on hard metals like titania or titanium alloys. I have now seen and recorded almost 1800 implants, and I can tell you that it's very unusual for this to occur, you have been most unlucky.
If you don't want to post on the board, then please click on my name and e-mail me if you do get any results, I'm always keeping records of problems which patients have either during or after surgery and hope to be publishing some papers and statistics within the medical profession later on next year.
Lynda - September 20, 2011 03:37 PM (GMT)
Thess papers may be of interest too Brian:-
Volume 3, Issue 4 , Pages 161-177, December 2009Retrieval anaysis of motion preserving spinal devices and periprosthetic tissues
andAdverse inflammatory reaction in disc athroplastyThe etiology of adverse inflammatory reactions is unknown. Excessive wear with production of bioactive particles is thought to play an important role in some cases despite the absence of wear debris on many pathologic specimens. This may be the result of the inability to visualize submicron or smaller metal ions. Pathologically, large areas of necrosis are present suggesting cellular toxicity, secondary to high concentrations of metal ions. Finally, metal hypersensitivity reactions to metal ions may be another explanation. Immunologic studies have identified a type IV T-cell mediated hypersensitivity reaction.
BHPenfold - September 21, 2011 11:28 AM (GMT)
Thanks All for your information.
I'm off to see the dermatologist again this afternoon. I would reitterate the point, that I'm not sure it is a 'allergy' to the implant - but the bodies resonse to the metalosis and debris circulating around the system.
I'll keep you folks posted,
BHPenfold - September 21, 2011 11:44 AM (GMT)
Missed a bit - the disc was a DISCOVER™ Artificial Cervical Disc, by DePuy Spine. Fitted by Mark Thomas, Frimley Park Hospital 19 Dec 2008.
DePuy artificial hips are also the subject of a significant law suite in the US as a result of including loosening of the hip implant within the body and "metallosis"....
Lynda - September 21, 2011 12:28 PM (GMT)
Thanks for that info, I'd looked back through your earlier posts and found it was a Discover.
There is lots published about biological reactions to wear debris in total joint replacement and yes it is very interesting. I've referred before on here to the artificial hip replacements which were recalled a year or so ago because many were failing and needing revision after only a few years. (I was trying to get across that newer doesn't always mean better.)
I look forward to hearing what your dermatologist has to say about your case and thanks again for sharing your experiences on here.
Lynda - September 23, 2011 12:39 PM (GMT)
I remembered who else had been through similar and thought you might like the link to compare Surgery-failed-advice-needed-carrief
(You may need to register with the particular forum to read the post), she did well once her artificial disc (Charite in lumbar spine) was removed too.
Please do let us know if the blood tests your dermatologist requested showed anything positive, as someone with a skin sensitivity to nickel myself I do find all this interesting. Info on metal allergy testingMetal Sensitivity in Patients with Orthopaedic Implants
(Nadim Hallab, PhD; Katharine Merritt, PhD; Joshua J. Jacobs, MD
J Bone Joint Surg Am. 2001; 83:428-428 )
BHPenfold - October 12, 2011 10:46 AM (GMT)
Nearly 4 weeks post op, and I thought I'd post an update. As far as the fusion is concerned, I've never been happier! Apart from the odd twinge, I have no pain in my neck, no pins and needles in my arms, a very occasional twinge of referred pain over my shoulders, and that is about it. My rotational range of movement is as good as with the ACDR, but vertical range is limited.
The stitch free incision is healing really well. No bruising at all and no infection. They obviously severed a dermal nerve in the process as I have no feeling above the incision line to about my chin (bit like haveing been to the dentist), but that doesn't worry me. I just need to be careful about shaving!
As far as the skin /autoimmune reaction is concerned, that is a different story, which is now turning out to be more like something from an episode of House!
I've just had a call from the Dermatologist. She has had to call a case conference with a complete list of specialists in order to try to establish the cause of my ongoing skin conditions, as quite simply put - they haven't been able to fully pin the cause down, although there are some anomolous readings in both the bloodwork and biopsy that would seem to indicate a significant alleric reaction to something. More work and tests required, although she does seems to think that it is very much related to the ACD. Bloods are showing a high eosinophils count which is in keeping with an allergic response.
The incidence of vascultus has reduced since the operation and I am down to just one lession, and my skin in noticably softer - although it still exhibits dermographia or instant pressure urticaria. The dermotologist said that she has been able to find other recorded cases of a similar autoimmune reaction in both ADR and Hip replacement surgery - but does need to confirm the diagnosis conclusively.
I do feel better, and I'm sure it will take some time for whatever is happening to work its way out of the system.
I have been told to look out for two articles, so if anyone has access to them I'd be really grateful:
Delayed hyper-reactivity to metal ions after cervical disc arthroplasty: a case report and literature review.
Cavanaugh DA, Nunley PD, Kerr EJ 3rd, Werner DJ, Jawahar A.
Spine (Phila Pa 1976). 2009 Apr 1;34(7):E262-5. Review.
Early failure of metal-on-metal artificial disc prostheses associated with lymphocytic reaction: diagnosis and treatment experience in four cases.
Guyer RD, Shellock J, MacLennan B, Hanscom D, Knight RQ, McCombe P, Jacobs JJ, Urban RM, Bradford D, Ohnmeiss DD.
Spine (Phila Pa 1976). 2011 Apr 1;36(7):E492-7.
I hope everyone else is keeping well. :D
Lynda - October 12, 2011 12:42 PM (GMT)
I am very happy you are feeling better and recovering well from the surgery. I have emailed the articles you mentioned, let me know if they don't get through to you. (I have added the abstracts to Interesting Articles but have sent you the full papers although it may only be the text....ie no pictures. If you want paper copies let me know and I'll print them off and post them to you)
Alastair - October 12, 2011 01:07 PM (GMT)
Sounds nearly all good Brian
BHPenfold - October 12, 2011 01:13 PM (GMT)
Lynda - you are an absolute star! :D :D :D Thank you.
Alastair - As far as the neck pain is concerned, you are correct - it has gone really well, and the stitchless surgery is quite spectacular. The ongoing skin condition is getting me down a bit, but hopefully the dermotologist will soon have a handle on that soon.
What I'd really like is to be able to get up in the morning and not have to take another damn pill for one thing or another!!
ajj1001 - October 12, 2011 01:15 PM (GMT)
have you shown any signs of previous allergies? i have recently read of another cervical patient whose ADR is causing problems, they had previous issues but did not know that the implant would contain elements that would bother them.
BHPenfold - October 12, 2011 01:39 PM (GMT)
|have you shown any signs of previous allergies? i have recently read of another cervical patient whose ADR is causing problems, they had previous issues but did not know that the implant would contain elements that would bother them. |
No, not really.
At 51(next week) I would have thought that I would have found out by now if there was anything I was allergic to. I know I am allergic to penicillin, amitriptyline and bees, but thats about it. I've worn a titanium watch before, with no problem. My own gut feeling is that this is the bodies autoimmune response to circulating wear debris and the nano particles released as a result of the metalosis. I suspect the initial symptons (from 6 month post op were caused by a gentle release and build up of wear debris; the significant skin issue (dermographia, pressure urticaria and rhinitis since Jun, are all a result of metalosis.
As a Chartered Engineer I'm used to developing hypothesis about various engineering issues; The disc replacement/fusion are all simple bio-mechanical engineering issues for me, so I have no problem with those; I feel totally useless when it comes to my own body (immune system etc) not doing what it is supposed to!
Actually, perhaps it is doing exactly that, but there is no way of me to know until the 'experts' determine what is going on.
BHPenfold - March 22, 2013 10:18 PM (GMT)
Long time no speak - well over a year now and my neck is just about normal. Unfortunately I'm not. When they took the ADR out, they found that my eosinophil levels were through the roof. Very long story short, 8 months later I was diagnosed with hypereosinophilic syndrome (HES) which was later reclassified as FIP1L1-PDGFRa chronic eosinophilic leukemia. This particular illness is caused by a somantic mutation on chromosone 4; that is to say, it was caused by something aquired during life (rather than being born with it). There is some literature around regarding chromosomal abnormalities following metalosis ( which the ADR had when removed) and there is some evidence to suggest that dePuy hip M-o-M implants have caused problems.
I'm convinced that the ADR and subsequent illness are related - not sure how I'd prove it.
Lynda - March 23, 2013 01:03 AM (GMT)
Oh Brian, I am so sorry to read of your diagnosis and am at a loss for words, what a shock to learn of your blood disorder. I hope other organs are not affected and that any treatment given is effective.
I don't know how you would prove a connection between the leukaemia and the prosthesis either but if I do come across anything that may help I will send it on to you.
Thank you for sharing, it is very interesting indeed albeit a lot for you to come to terms with.
Wishing you permanent remission.