Possible Problems?

[Lyndsay]

As I'm sure many of you know, I've not had a straight forward recovery, more so regards pain etc. A couple of weeks ago I had a really bad flare up of pain & spasms which isn't really settling. I was due to start Hydro but the PT advised consulting with my Dr & getting my ESR bloods run. As my GP was away, I had a quick phone consult with one of his coleagues who gave me a script for some more meds & I then made an appointment to see my PM. Last Tuesday I saw my PM, he picked up on a fair bit including pain & altered sensations from L3 down. I decided to let him give me some anaesthetic/steroid mix injections in the hope they would help the spams so then lessen my pain. I rested up again after but only felt a slight benefit but thought anything was better than nothing.

This past weekend I've been a bit more mobile & went out for the day yesterday where by lunchtime things seemed to start going from bad to worse. We came home, I asked my partner if he's give me a gentle back rub to see if that would help, his immediate reaction was that my lower back area felt like it was on fire! The top & middle were normal temp but the lumber area was very hot. Anyway, I just took some more painkillers & went to bed which is pretty much where I've stayed since. The pain & spasms aren't really subsiding much & I'm wondering if maybe it would be a good idea to call my GP but then again I think why bother as apart from painkillers I can't see what else can be done?

What I'm really wondering is if anyone else has had this burning (not distraction) heat coming away from the painful area of their back, especially post-op? In general I feel cr*p & am so tired especially with the pain & spasms.

Any ideas?

Thanks in advance

[Alastair]

Hi Lyndsay,
I would have thought going for the "Icepack " might have helped if your back was "Hot" over the surgery.

Your Fibro simply is flaring up at the moment - - -- Mmmm!!!
Best
Alastair

PS Tried to ring you but your line was busy

[Lyndsay]

Hi Alastair

Sorry just been on the phone with a friend.

Trust me, I know my body, something isn't right right now & this isn't just the fibro flaring. I should have added that even though I can't normally tolerate ice, I did, out of desperation try an ice pack (we have a medical one kept permanently in the freezer on stand-by) but it just did it's usual which was to send the spasms into orbit

On another list someone has suggested maybe steroid injection's weren't the best thing, at the time I was desperate but in hindsight (wonderful thing that it is) I maybe shouldn't have them, who knows now!?!

I think I may try calling the PM & see if it's common that sometimes these injections can make things worse before they improve? All I've been doing is pacing, resting, pacing etc, go out for a bit & bang I'm back in a heap

Right, off to see if I can get through to my Dr.

Thanks for your reply though

[KL Aguilar]

I had a steroid shot years ago for an ankle injury. A few hours later, the area was hot and inflamed and the pain was significantly worse. I called my doctor and he told me that a small percentage of the population gets a similar reaction. You should probably discuss this with your doctor to see if this is what you are experiencing. If nothing else, find out what was the name of the steroid and have your reaction entered into your medical record.

[Lyndsay]

Thanks for your reply. I will try again tomorrow to get hold of my PM to ask if me getting worse again along with the heat & swelling could be a reaction to the steroid. I'm also hopefully going to see my GP & get my bloods taken & checked. Thanks again.

[Lyndsay]

Update ~ I saw my lovely GP today & he has ordered full bloods plus ESR on the off-chance an infection has crept in & is causing the heat, swelling & variations in my temperature over the last 2 days. In addition he has decided that rather than waiting 4 weeks for the PM to start me on Lyrica, he has started it now. I have to start on 150mg twice a day for a few days increasing to 3 times a day then returning in 2 weeks for a check up or before if I'm concerned or things get worse. I am nervous about starting the Lyrica but feel I'm about out of options now.

Oh, I did manage to get through to the Neurosurgeons office today & have an appointment with him on the 17 July. I just hope he lives upto his reputation!

Thanks again for everyone's replies

[Lyndsay]

Thought I'd post another update. I've been on the Lyrica 150mg x 2 day for a week now & it is definitely helping with the nerve pain, I only wish I'd been given this months ago!! By no means has all the nerve pain gone but my it has settled so much it's now bareable at least. Interestingly, where my jaw has also been affected by what the Dentist describes as a knot of angry nerves, this too has settled quite a bit although I still can't open my mouth fully. Also where I've been back & forth with some confusing pain next to a tooth that has had root canal, that too has settled quite a bit

I'm still waiting on my blood results, I expect I won't get them now until I go back to see my GP next week.

My feet are still driving me up the wall My friend who is currently undergoing chemo recommended I try rubbing Ibuprofen gel into them & anywhere else that is hurting so when I go to the pharmacy shortly I'll get some & give it a try.

I still have a lot of heat & some swelling around my lumber spine but no where near as much as 10 days ago so hopefully what ever is going on is calming down. I just wish I could say the same about the "glass spasms" I just wish they'd let up as they're so darn painful & almost constant & then I suddenly get an extra burst of an electric shock when I least expect it ~ a couple of my poor friends have suddenly have me yell down the phone!!

Well I think that's all for now!! I'm now off to the pharmacy to get some of the Ibuprofen gel & my antibiotics for getting my teeth cleaned at the Dentist this afternoon

All the best

[mmglobal]

did blood work shed light on potential infection status?

I'm very interested in what they say about heat...

please describe swelling... you didn't mention it in original post.

[Lyndsay]

Hello Mark & thank you for taking the time to reply

At the moment I'm still waiting for the blood results, I expect now it will be next week when I go back to see my GP before I get them. As it's the NHS they don't call you

My GP didn't know really what to make of the heat & swelling & because of being stuck at home on my own, he didn't see it until it had settled quite considerably. When I spoke with my Physio she thought it sounded like Discitis which I mentioned to my GP & he then agreed it sounded possible except for in the obvious area which would be the worry.

The swelling is like a puffiness all around the L3-S1 along the spine & then the muscles either side also appear inflammed. The heat is coming from the spine area more than the muscles. It's now down about half of what it was.

My GP did suggest that maybe I had a bit of a reaction to the steroid injections but what puzzled him was that where the problem is, is not where I had the injections.

I'm seeing the Neurosurgeon on the 17th & after a call to his office today, I was assured that an xray will be taken.

If you have any further questions then please feel free to ask

[mmglobal]

I've been through discitis with a client. Not where you want to be. Very serious and very fast-moving. (It can spread rapidly to the bone... osteomyelitis.) So, I hope that if your doc suspects discitis, that he'll manage to get the results from the blood tests ASAP.

Mark

[Lyndsay]

Thanks Mark. I did have a read up on Discitis so understand the concerns. The problem I have is the very slow NHS service though my GP did put "Post Op Infection" on the blood request form. Also, until I see the new surgeon in just under 2 weeks I'm without a consultant.

I can't say that I feel any better than I did when this first started except thanks to the Lyrica, the nerve pain has calmed down quite a bit. I find with the heat & swelling, as long as I stay resting up it stays at this lower level but as soon as I start to do anything it flares back up again so not sure if that tells anything?

A question if you or anyone knows it about the ESR, if it is only slightly up or the high end of normal, I know that the Dr's will say it's normal (it happened with something else a few years ago) but I read that sometimes in Discitis etc, it only needs to be slightly up & actual sometimes you can get false negatives with a high normal result. Any thoughts? Once I have the blood results next week I'll of course update.

Can I ask, even though you've had a patient with Discitis before, have you come across my symptoms before? Did your patient make a good recovery? I do feel a bit out on my own with it all at the moment. I spoke with Alastair the other night but he's not sure either.

Thanks for your time

[Lyndsay]

A quick update as have been to see my GP again this week. Thankfully my blood results were normal so it now reverts back to whether or not some of the problem is just the L4? At the moment I have no explanation for the swelling/inflammation & burning heat that keeps flaring & coming out of my lumber area.

As I'm going to see the new Consultant next week my GP has given me some copies of the letters written by my surgeon & I've picked up on a couple of things;

Pre-op he writes I had a flattened lordosis? (Remember at 3 months the Radiographer reported exaggerated lordosis);

On looking at my 05 MRI it showed a Grade II L5/S1 disc degeneration with a High Intensity Zone posterially likely representing an annular tear. Additionally a Grade II multifidus wasting with possible end stage facet arthosis at L5/S1.

He finishes that letter by saying he has booked me in for a single segment stabilisation procedure at L5/S1, most likely a fusion as he suspected the segment to maybe be quite stiff.

My question now is, what is, Grade II multifidus wasting with possible end stage facet arthosis at L5/S1? I will of course try to look for myself but would be interested in what anyone here has to say. Could this be a contributor in my ongoing pain & that maybe I should have had a fusion?

My surgeon does confirm that my Fibro & CPS really don't help matters which helps me a little.

I look forward to some replies please

[mmglobal]

I am not understanding how it is possible to have Pro-Disc L5-S1 in Nov 06, and then have end stage facets in July 07. It's hard to imagine them progressing from "OK for ADR" to "end stage" in less than a year. What was the condition of the L5-S1 facets pre-ADR?

I believe that he's referring to visible changes to the multifidus muscle. Bertagnoli once pointed it out to me on the MRI of someone who'd been bedridden for over a year.

[Lyndsay]

Mark, the End Stage Facets were pre-ADR!! The comments were made on at that time, an 18 month old MRI scan (25.02.05). I did have another MRI & xrays last September but these films are missing & I have no report on them either. I really don't understand it I went in & had ADR not knowing about having End Stage Facet's or what they are (still don't really know?), the only thing I'd been told in Feb 05 was the info about an annular tear in my L5/S1 with degeneration & "some" facet arthritis.

So now what I see the new Neurosurgeon on Tuesday so will ask his opinion but from what I can make of it, I was never a candidate for ADR!! I was lead to believe I was & in one of the letters here the surgeon states I'm an excellent candidate!?!

Talk about confused!! Maybe this is another reason for me being in the 5% of being worse post-op & not being able to get in touch with the surgeon any more? I told my GP today that I feel that because I'm not good for his statistics that is why I have been forgotten

[dshobbies]

Lyndsay,

What can be said about an inept diagnosis? I understand your heath care system is different and just as confusing as ours but there are some surgeons that are simply interesting in operating and not so much in you as a patient.

I know you're in pain and just want a normal life and I do hope it's in your very near future, perhaps at the hands of your new ns.

My thoughts are with you, Dale

[Lyndsay]

Thank you Dale I actually had my surgery carried out privately, if I had been an NHS patient I would have had a fusion or similar due to the cost. I too will now be interested in what the NS has to say. I will be honest & say that if I were to be told that it would be better for me to go through a major surgery to remove the Prodisc & do revision surgery, I would be straight in!! I know I'll always have certain health problems to deal with but I had this surgery hoping that if nothing else, my back pain would be at least halved (I was given odds that the surgeon was 80% sure he could halve my pain), maybe I put too much onus on that?

I know I can't change what has happened but have to admit that for probably the first time tonight, I feel real mixed emotions from upset to angry. I know all surgeries carry their risks & that I'm luckier than many but I can't help feeling let down.

Anyway, I'm waffling as usual!! Thanks again for your reply

[mmglobal]

I still think that there is a communication problem here. End stage means severe... means grade IV... worst possible... not a candidate for ADR. The requirement for reasonable facet condition for ADR is not a new development. We knew that back in the day when ADR's were made out of wood.

I don't get it. I think there is something about this that I am missing.

[Lyndsay]

Mark, you think you're confused & missing something ~ imagine how I now feel!! It's only because I'm going to see the new NS on Tuesday that my GP printed the letters from my surgeon off for me to take along with my GP referral that I found this info, it's all there in black & white & is really so contradictory as he's said that my 05 MRI shows this End Stage Facet Arthrosis, that I need stabilsation & I'm a candidate for either ADR or fusion but due to the conditions most likely fusion There are only a couple of follow up letters, one to say he carried out ADR on me at L5/S1 without complication though they had problems sorting out my pain control (tell me something I don't know!) & that I had been discharged. The next letter saying I'd had my 3 month xray, the disc still looked good & I was progressing well. That last letter is almost total bull as even though I was then in PT Rehab with a Spine Therapist, the radiographer reported exaggerated lumber lordosis (which he omitted to tell me) but also, I wasn't & am still not, progressing well!! As for the disc, I have had someone look at all of my post-op xrays, they feel that my disc has actually slipped 2mm, I haven't been able to contact my surgeon about this (or anything else) so will ask the NS on Tuesday what his opinion is on that.

My GP will agree with me & also tell anyone that wants to know that I am now in far worse shape than I ever was pre-op

So, I'm now beginning to go with my PT who calls my surgeon a maverick egomaniac My surgeon is known of at the hospitals I deal with as he did a lot of his training up this way.

All in all I feel that doing an ADR on me was just another notch on the surgeons number of discs he'd implanted without regard to whether it really was right!?! I feel that one way or another a disc was going to be squeezed into my spine even though it obviously wasn't the correct procedure! It was explained to me about a possible anterior fusion & I was happy that should it be that a fusion would be better then to go ahead.

With the way my spine is regressing, I can honestly say I just want the darn thing taken out but admit that I'm scared of what I expect will be a bigger op.

Thanks for your reply If you want any further info either here or privately then please feel free to PM me.

All the best

[Alastair]

Hopefully I meet up with Lyndsey on Tuesday, I will just check she's not doing handsprings -- -- -- lol

It's difficult to know how much of the pain is generated by her fibromyalgia and how much by her surgery. She will be seeing the neurosurgeon who saved the life of the "motor trials" presenter who crashed his jet powered car at 250 miles an hour. He is up and about and back on TV with no ill effects so I'm hoping for "great things" for Lyndsey
best,
Alastair

[Lyndsay]

Well I didn't know that!! I knew he worked at the other hospitals in Leeds as well as teaching as I've obviously looked up his credentials but I hadn't realised that he was the surgeon that fixed "the hamster"!!

I seriously hope he is as good as he reads on paper & without being arrogant.

I will admit I'm pretty angry about things right now

I hope we get to meet on Tuesday Alastair, I'll take the auto-route & see how I feel when I come out of the hospital but fingers crossed

[mmglobal]

don't take the jet car!

[nopain]

There is a very simple an completely painless diagnostic test called Thermography. Almost no Doctors know about it or use it. Even though the primary company that promotes the equipment is run my USA MD's.

It's just a camera that takes a picture of you from several feet away. It measures the temperature coming off your body. The temperature is converted to a color map. The colors representing the areas with the most intense heat.

While this test does not isolate a specific part three dimensionally it does create a pattern the is very good at showing the spots where the most heat is coming from. They actually use this technology for Breat exams as an adjunct for mamography. It can sometimes detect things the mamography can not.

Here is how it's used in Breast Cancer Screening.

http://www.breastthermography.com/br...ography_mf.htm

It has many applications. I suggest this because it could be helpful in determining the area that is creating the problem in the least invasive way.

I had this done on my neck (which is a heat pump) and it was just bright red and orange... they had to really change the settings on the camera to get a decent picture. And when they did they brightness corrolated very well with the area of my herniation.

You may also want to look into an Enzyme product called Wobenzym. It is NOT a cure but it really does help with healing and inflammation and can be taken right along with meds. It's the most tested Systemic Enzyme in the world and comes from a German Company called Mucos Pharma.

I eat them daily as they are one of the few things that help. I have had no known side effects. They don't help my balance at all, but they do help my pain and I feel better when I take them than when I don't.

I tried Auqa Physical Therapy in the pool and it made me so Nauseas that I could hardly get out. Resting in a tub of bathwater however is wonderful, as is a dip in the hot tub.

Keep this in mind when using water to release some of your pain. Never sit in water warmer than 104 degrees f, for more than 20 minutes as that is the temperature that you begin to "cook" so to speak and you can get really ill. I prefer a bath drawn at 102 for 20 minutes. By the time I finish it's at about 98 degrees. I purchased a hot tub thermometer at a local pool place for about 6 bucks. Everyone should have one of these so they can find the temperature that is just right for their body.

Also keep a diet journal. Certain foods can trigger more pain in susceptible individuals. I find that red meat doesn't work for me, and neither does Grapefruit. For some it's nuts or eggs or ? There are advocates that both support and disdain the theory that foods can regulate pain. For me I believe. But you have to track what you eat. Then the days you feel really bad (Hopefully not every day!) or better see if it has any corrolation to what you ate.

[Lyndsay]

8 month post ADR Update

Well it's not looking good I've met with the new Neurosurgeon who was absolutely lovely & very reassuring in what is not the best of situations.

First of all on examination it was picked up that I have some neuro deficits in my legs, my right more so than the left. Certainly my reflexes aren't at all good.

One thing that the NS picked up in my original notes to my GP from my surgeon (copies I took with me) is that L4 WAS a confirmed pain generator in my Discogram as I thought it was! (I still remember & could point to you where those needles went & that's with sedation!!) Also it had been noted & written about End Stage Facet Arthrosis around the L5/S1.

Due to recent problems & new symptoms over the last week, the NS wants to first do a CT with Myleogram to see what shows up. An MRI is out of the question because he wants to look at the L4 disc & the Prodisc at L5 will interfere in getting a clear enough picture. I'm not looking forward to this as he's told me I will be in pain afterwards, I assume because of the dye & the table tilting? I also have to have some Facet Injections & another Discogram at L4 to see if it is still a positive pain generator.

Once all the tests are finished then I'm looking at either a fusion over the Prodisc at L5/S1 or the fusion plus a disc replacement at L4 (or even a double fusion). What ever is done will have to be done posterially & through the side which of course means even bigger surgery than the original ADR

Also in the meantime, if some of my certain new symptoms & problems persist & depending on the CT results, I may, to tied me over, have to have a decompression at L4 as there is concern that I may have the start of, or already have, some mild Cauda Equina. If my symptoms get any worse then the NS advised I contact him straight away for immediate investigation/treatment as he said with my ADR it will be a waste of time just going to A&E. Fingers crossed it may just be a blip or just a small nerve impingement.

All of the above is written down on the Patient Info Sheet for me & to also copy to my GP.

The NS has also given me the go ahead to return to the Chiropractor to see if it will help with my neck & also to check the alignement in my back. It was also recommended that I try some deep tissue massage to try as he said the muscles in my back are quite locked in spasm which of course explains a lot of the pain in my muscles.

We did discuss whether or not to inform my original surgeon of what is happening & although he will be informed, we decided that for the time being we won't say anything.

I have very mixed feelings right now which I'm sure is understandable given the circumstances.

Oh, to finish, we did get to call in & meet Alastair & his wife where the hospitality was lovely & it was good to finally meet the man on the other end of the telephone

If anyone wants to know anymore about my new problems then please PM me otherwise any input on my forthcoming treatment is welcome