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Old 03-07-2009, 01:13 PM   #1
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Lelly85 HB User
Question My Story - Advice Please?

Hi guys, My name is Lelly and I'm from Scotland and I've been suffering from TMJ problems since I was about 17/18. I've been lurking on the forums here for ages, but I need some advice now so I thought I'd wade in! I'll give you the shortened version of my story, so I don't bore you all to tears.

Initially I had moderate pain, and clicking, and locking etc, so I went to see my GP and he referred me to the local dental hospital. They looked at my teeth and said "yep, you're a clencher!" and made me a mouth guard to wear at night. They also took an MRI scan. When I went in to get the results they said they'd called the radiologist three times to check they'd sent the right scans as they couldn't believe there could be such marked degeneration in someone so young. They made the decision to refer me to the Maxillo Facial Surgeon at Ninewells Hospital here in Dundee.

From what I've read on these forums, surgeons in America seem to just want to do surgery, and I'm gathering this is because it makes them money? Anyway, it doesn't really work like that here. Because of the NHS, doctors here are more likely to actually have the patients best interests at heart, and in fact, they usually try every conservative treatment possible before surgery because it's cheaper.

Initially the surgeon prescribed me some Prothiaden. Didn't help one bit. By this time I was managing the pain with Ibuprofen and the strongest dose of Co-codamol. So after that didn't work, he tried a higher dose of Prothiaden, which again didn't work.

He then decided to send me off for a CT scan so he could get a better look. The CT scan showed marked Osteo Arthitis in both sides. At this point he decided to do an Arthroscopy on the right side (for some reason, although both sides are as bad, the right side hurts more). He said he was hoping he would go in and see something other than the arthritis, as that would be easier to fix. He went into the joint and said he was shocked by how much worse it looked, so he just flushed it out and closed me up.

I then had a few follow up appointments where we tried different pain meds and even some alternative therapies. Nothing was working particularly well. He basically told me then that I would need joint replacements but that he would do all he could to hold off on doing them for as long as was possible (even saying, he hoped he'd retired by the time it was needed).

In December, I had more surgery on the right side. He used a cryoprobe to freeze the joint capsule with liquid nitrogen. The idea being that it would freeze the nerves and thus the pain. Obviously this would also only be short term as the joints are still degenerating at a remarkable rate.

Basically, this hasn't helped at all. My last appointment was a few weeks ago. He said that unfortunately the joints were so bad they would need replaced soon. Probably this summer (I told him I didn't want anymore surgery until then as I'm in my final year of uni and can't take anymore right now!).

I have an appointment with him in April where he's going to inject steroids into the joints to relieve the pain and inflammation. Steroids will however speed up the bone degeneration, so this is always a last ditch pain relief procedure they only do in patients who they know are getting joint replacements in the near future.


So! Thing is, as I've mentioned, I'm a final year student (Biology, so feel free to talk science to me!), and I've been accepted onto a post graduate course to become a teacher. Very very competitive course, and I'm so proud of myself and happy to have gotten in, but it starts in August and the earliest I can have surgery is the end of May. Is that going to be enough time to recover? In April, he should be able to give me an idea of what his lists are like and roughly when he can fit me in, so it could be later than that. If it's any later than July, I'm obviously going to have to defer the course for a year, but am I kidding myself for even thinking it's possible to have joint replacements in the summer and start an intensive course in teaching in August?

I would absolutely hate to start the course, realise I wasn't ready and have to withdraw. As I mentioned it's a really competitive course so I want to be realistic and if I have to defer then at least someone can take the place, which isn't the case if I just drop out.


Oh dear. This is the short version? Sorry! So yeah, advice on recovery times, advice about the surgery in general (bearing in mind that my surgeon isn't a money grabbing tool and is genuinely out for my best interests), and about even if I have recovered, should I not be on a stressful course? I just want to be fair to the uni and make a decision as soon as possible so if they have to they can offer the place to someone else. Obviously though, I DO want to do the course, but I want to do my best at it!

Once again, sorry for the novel!

 
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Old 03-07-2009, 04:21 PM   #2
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Join Date: Feb 2007
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bethsheba HB Userbethsheba HB Userbethsheba HB Userbethsheba HB Userbethsheba HB User
Re: My Story - Advice Please?

Welcome ot the boards, Lelly!

Since you are a biology student you may be interested in knowing that there is a bacteria/spirochete that causes many of the symptoms you are experiencing...if you have this bacteria/spirochete in your system, the steroids may very well make your condition worse (and you may develop different symptoms.) We have no test that can definitively diagnose this, but if you do some reading, given your background, you'll have an understanding of "why". The bacteria I'm talking about is the Lyme B. burgdorferi which has been identified in many, many areas of the UK...but your docs aren't apparently keeping up with their medical literature (don't get me wrong here, our docs aren't either). Lyme can present itself as "arthritis" but the 4th most common "joint" it attacks is the jaw bone. Antibiotics, not surgery, are often used to treat this condition.

A Lyme Literate Medical Doctor would be the specialist to see for the diagnosis and treatment of Lyme.

Last edited by bethsheba; 03-07-2009 at 04:24 PM.

 
Old 03-07-2009, 07:35 PM   #3
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Location: Central NJ
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StillHope HB User
Re: My Story - Advice Please?

Hi Lelly,

So sorry to hear that you are so young and with such jaw problems already.
I can't comment on surgeries b/c I had none but while I was reading your post I was questioning what can be the reason for the rapid jaw deterioration. My idea was to suggest to you to check about the ph of the body (e.g. ph-ion site-- are we allowed now to post sites??). The proper ph of the body can help with arthritis and maybe even from the bacteria mentioned by bethsheba.
In any case if you keep your body alkaline as it should be, this can help you better deal with the symptoms you have and make you feel better and stronger.
Sorry, don't know what else to suggest in regards to the jaw.
Keep us posted on how you are doing.

 
Old 03-08-2009, 10:15 AM   #4
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Join Date: Mar 2009
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Lelly85 HB User
Re: My Story - Advice Please?

Thanks for the welcomes.

I'll most definitely look into the bacteria thing before I get the steroid injections. I'll discuss it with my surgeon when I see him as well.

I've never heard anything about pH but that's something else I'll do some research on.

Most of my docs are fairly stumped as to why my joints are deteriorating so fast. I am a pretty bad clencher, but my surgeon also has a theory that the orthodontics I had when I was a teenager may have changed the shape of my jaw and put it into a pressurised position.


Could anybody who may have had bilateral replacements in the past few years chime in and tell me their stories and how long their recoveries took?


Thanks for all the welcomes anyway guys!

 
Old 03-08-2009, 05:06 PM   #5
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Thelma-Louise HB UserThelma-Louise HB UserThelma-Louise HB User
Re: My Story - Advice Please?

Welcome Lelly - I have been on the HBs for several yrs now - to be honest those that have had successful surgery seldom post anymore and those in which surgery made it worse will post occasionally to try help others contemplating surgery or dealing with the adverse consequences of it. At best - I have seen posts indicating that it takes several weeks to months for recovery - a lot has to do with if the jaws are wired closed during the recovery period. I would suggest you speak with someone at your surgeons office to see if they can provide realistic recovery timeframes and what to expect after surgery and ask if they could provide you names with other patients that have undergone joint replacement so you maybe can contact them to discuss their experience - keeping in mind each case may be different and we all heal at different rates. Also see if you can find out the name of the joint replacement or its mftr and contact them as I am sure they have data on this based on studies and followups, etc. Lastly - if you are questioing whether surgery is your only option or not, you may want to see if you can obtain digital images of your CT scan and send tham to various surgeons in yoru area - even in the US just to see what their recommendation would be.

Sorry you are going through all of this - but it does sound like your joints have degenerated behond repair - I would likely agree it is more likely due to othodontia - many studies suggest it to be the number 2 or 3 most common cause of tmj - and even if it your degeneration is possibly due to lyme or some other bacteria, treating the lyme or bacteria will not restore your joint - but it will prevent other joints within the body from being destroyed going forward, should that indeed be the cause.

 
Old 03-09-2009, 05:57 AM   #6
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Lelly85 HB User
Re: My Story - Advice Please?

Several weeks to months is what I've mainly been seeing when I've been trying to read up on the subject. I suppose it is a silly questions because I'm seeing that it's all very dependent on the type of replacements etc.

I have another question then (I'm getting needy!). I usually go into my appointments with my surgeon with vague ideas of what questions I should ask, and then end up all tongue tied and coming away without the info I wanted. What kind of things should I be asking about the replacements? So far I can think of type of replacements, usual recovery time, success rate, side effects. Is there anything else, and anything more specific I should be asking?

Thanks again.

 
Old 03-09-2009, 06:47 AM   #7
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temera2 HB User
Re: My Story - Advice Please?

hey sweety Lelly ,

How are you??

My name is Temera.. remember no question you ask if ever silly sweetheart! We are all here for you!

When you wrote i'm getting needy i was thinking aww i know how you feel. Let me congratulate you on studying gorgeous girl ..thats what i call willpower and i have great admiration for you!!! hi -five!!

Okay to add to your questions maybe ask this :
> Tell the surgeon what you expect from the surgery and then match it with his response
> Ask him what procedure would be taken if the surgery didn't work (I'm not saying it wont work because ill be praying and we all will pray this heals you precious but still make sure you ask this one.. his response must be calm)
> Ask could the surgery do more damage then good

Well im not sure if i answered properly but i helped somewhat . You are in my thoughts !!!!!

Much Love , Temera!

 
Old 03-09-2009, 03:31 PM   #8
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StillHope HB User
Re: My Story - Advice Please?

Hi Lelly,
I'd really ask carefully on the options if the surgery will go wrong. It's better to be prepared than to close your eyes and hope.

Write down your q's when you see the surgeon and ask him all you want. Make notes of his answers. It's our right to know all the details.

What can go wrong and what can happen after that? What is his statistics in this type of surgeries? How many did he do and how many were successful? What happened with those which were not successful?
Can you talk to those people?

As I learned from my experience and from this Board, things can always go worse with tmj, so it's better to be prepared.
All the best wishes to you!!

Yes, check the ph issue b/c it will be very helpful in recovering from a surgery. Actually it's better if you start beforehand so that your body will be already in a better state for adapting to any stress.

 
Old 03-09-2009, 08:55 PM   #9
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Thelma-Louise HB UserThelma-Louise HB UserThelma-Louise HB User
Re: My Story - Advice Please?

You may want to review some previous posts by Meditation and Goodthings - I am pretty sure one or both have had joint replacements or do an advanced search on this forum using joint replacement or jaw surgery to see if you can find them. One of them once posted what one should know or ask about surgery to be better informed.

I would find out the manufacturer - who they are made by and the type or replacement the dentist will be using and then contact them for some basic info - find out what they are made of (what type of metal) and their success/failure rate and any anomalies regarding their usage or unusual occurrences. Ask them about the various types they make and what makes one type more appropriate for you than others, etc. From what I can recall one member here once sent her images to the mftr for them to advise what would be best given her condtion to ensure the dentist was correct in his choice of replacement.

I would want to know what type of anesthesia is being used, where the incisions will be and how long you will be sedated and if it requires hospitalization and for how long, etc. I would also want to know what to expect during the post surgery period, will your jaws be wired,if so for how long, will you be able to eat or will you be limited to liquids only, etc.

Ask if any tests for metal allergies will be done prior to surgery and any other blood workups that are standard for most surgeries. Also, if you are currently taking any vitamins or natural supplements or regularly using any type of pain meds or meds for other conditions, you may want to ask if you need to stop using them and how long before surgery to do so.

Also either ask the dentist or the mftr of the joint replacement for referrals of patients that you may contact or that might contact you - I know this may seem awkward and due to patient privacy laws and guidelines, may be prohibited, but sometime patients do give permission to their drs for this purpose only - they won't give out their contact info but will instead provide them with your contact info for them to call you.

I hope that helps some - i am probably overlooking the more basic issues - as you know all surgeries pose some risks but having a good dr often minimizes that - so maybe find out how many of these has your surgeon done to date.

 
Old 03-11-2009, 05:58 AM   #10
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Lelly85 HB User
Re: My Story - Advice Please?

Thanks for all the advice. I'll take a list of questions with me to my appointment.

I've already done a search on the forums for joint replacements and found a few interesting threads. Thanks for th tip!

 
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