posted
I've read some posts here that say you should never have surgery unless it is life saving. It causes the lyme to worsen.
I've been treating with abx for four months now and found that the pain in my ankle is so much more than the rest of my joints that I went to see a podiatrist. Xrays show that the pain is probably from a piece of bone (actually two) that broke off in my foot sometime a while ago and now is in a position where it is irritating a nerve. (that's already irritated from the Lyme and the pain is unbearable) It won't get better on its own. It can't. It requires cutting some bone away to remove them.
Can a person continue to treat and defeat lyme with surgery like this. I've read that some people say don't have any surgery ever unless your close to death and some say that it can be done.
Need advice. Can't talk to my LLD until Tuesday and need to make a decision tomorrow. I don't think I have an option except when to do this because I am quickly losing my ability to function on this foot and I need it to keep working and providing for my family.
Any advice is greatly appreciated, especially from those who have gone through something like this.
Posts: 199 | From utah | Registered: Jan 2009
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posted
From your description it sounds like the surgery is a necessary evil. I've been cut open a few times, had various parts removed, and recovered. Expect recovery to take longer, and that inflammation (i.e. pain) to linger at the site.
Consult with your LLMD about continuing treatment while you are at the hospital, including any special needs (dietary, etc.), otherwise the hospital will be clueless about it. You need to do that in advance because you won't be in shape to tackle it immediately after surgery.
Best wishes for a good outcome with whatever path you choose.
Posts: 727 | From USA | Registered: Mar 2006
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posted
Do it. The worsening of the lyme is usually temporary... like a bad herx.
I had gallbladder surgery while in treatment and I didn't really get worse. I avoided the surgery for a yr and a half...finally had to do it.
Sounds like you really need the surgery.
Good luck and let us know when the surgery is scheduled.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96220 | From Texas | Registered: Feb 2001
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cottonbrain
Frequent Contributor (1K+ posts)
Member # 13769
posted
here's what happened to me:
before i knew i had Lyme, i had surgery on both feet for hammertoes. It was simple outpatient surgery.
For months the pain was every bit as bad as a migraine -- it was so intense i just wanted to shoot my feet!
that was three years ago and I am in horrible pain still -- much WORSE than before the surgery.
Two LLMDs told me it is because Lyme won't let my feet heel. My current LLMD advised me to have no more surgery until i get Lyme kicked.
Now i have developed painful neuromas in both feet but will i have surgery? Heck NO!!!!
I use lidoderm patches on my feet and wear two or three pairs of really thick socks. i had to buy shoes that are three sizes bigger than normal,and i never get to wear sandals.
so, my advice is, if you can do something to alleviate the pain without surgery, do that first. If I had known what pain i would be in now, i would NEVER have done the surgery.
you might try gelpads (are you gellin?) for your feet along with lidoderm patches, thorlo socks, and aspirin every three hours. it's no cure but it may take the edge off and allow you to keep working.
also, fish oil and other supplements may help relieve nerve pain.
oh yeah, one more really important thing: please do not allow a Podiatrist to perform surgery on you. They do not have medical degrees.
It seems like they police themselves, no oversight from outside (??). when i had problems my podiatrist got surly with me and would not help me.
Had i known that podiatrists don't have medical degrees, i would have gone to an orthopedic surgeon, several of whom i have seen since. They seem much more knowledgable than the podiatrist who operated on me.
Posts: 1173 | From USA | Registered: Nov 2007
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posted
Sorry your experience was so bad, cottonbrain! I did have lyme come to the forefront following my hysterectomy...but I managed to come around.
They put me on FLAGYL after my surgery and I didn't know i had Lyme!!!! I nearly died from depression that summer! GADS!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96220 | From Texas | Registered: Feb 2001
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cottonbrain
Frequent Contributor (1K+ posts)
Member # 13769
posted
ditto to you, tutu--i hate that you had such bad depression and had to go through herxing to boot.
i'm glad we have this board so we can all be aware of the risks and possible consequences we face.
Posts: 1173 | From USA | Registered: Nov 2007
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posted
Thanks cotton, I'm already wearing custom orthotics and have tried pain meds. but I'm at a certain point wherer something else has to be considered. It seems to me that if I can alleviate my foot problem, then I can handle the other things until the lyme is under control. I feel like I'm already making some progress even after four months, but I can't stand the pain in my foot any more.
Posts: 199 | From utah | Registered: Jan 2009
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cottonbrain
Frequent Contributor (1K+ posts)
Member # 13769
posted
bwillis, i edited my post after you read it, i think.
see my comments about podiatrists, above.
Posts: 1173 | From USA | Registered: Nov 2007
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posted
There must be others who can help?
Posts: 199 | From utah | Registered: Jan 2009
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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You said: "Can't talk to my LLD until Tuesday and need to make a decision tomorrow."
I don't know why you would have a deadline to decide. But, then, make your decision. Talk to your LLMD on Tuesday and then you can change your decision if you have to do so.
===========
To counter set a comment above, I have had EXCELLENT results from surgery by two different Podiatrists.
They have medical degrees - specialty training with more hours on the feet than any other doctor - and those who do surgery are certified for that - you can easily verify their credentials and their education.
Check with your state agencies (start with the Medical board and they will direct to the licensing board for podiatrists) and also check with national boards regarding membership and certification.
However, you still might do well with a second opinion from an orthopedist.
First, be sure to also talk to your LLMD about this, especially about the steroids and anesthesia choices.
Could you possibly use a wheel chair until the lyme treatment is further along? You'll have to use one for at least a month after surgery, anyway.
Is there any kind of gentle osteopathic manipulation (as with UPLEDGER approach) or ultrasound therapy that can help reduce the pressure points and inflammation? Any kind of a brace?
As I recall, you have just begun your treatment in the past couple of months.
Still, I put off one on of my surgeries for years. I should not have done that. The pain relief was fantastic and I would have been far better off to have done the surgery when I first injured my foot. You have to weigh the benefits and just protect against the risks.
================
Since steroids are often given prior to, during and after surgery, be sure to have your LLMD consult with your podiatrist for how to safely do that with the right dose of certain abx.
It is possible, even desirable to reduce swelling around surgery and steroids can be a huge help. You just have to be protected.
More severe illness also results from other causes of weakened defenses, such as from severe stress, immunosuppressant medications, and severe intercurrent illnesses.
This is why steroids and other immunosuppressive medications are absolutely contraindicated in Lyme. This also includes intraarticular steroids.
. . . .
From page 12:
Excerpt:
. . .
More evidence has accumulated indicating the severe detrimental effects of the concurrent use of immunosuppressants including steroids in the patient with active B. burgdorferi infection.
Never give steroids or any other immunosuppressant to any patient who may even remotely be suffering from Lyme, or serious, permanent damage may result, especially if given for anything greater than a short course.
If immunosuppressive therapy is absolutely necessary, then potent antibiotic treatment should begin at least 48 hours prior to the immunosuppressants.
. . . .
Page 20:
. . . and absolutely no immunosuppressants, even local doses of steroids (intra-articular injections, for example).
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[ 04-26-2009, 04:36 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
Thanks Keebler, a wheel chair is not an option for various reasons, mainly because the way the bones sit, walking gives the only relief, sitting causes excruciating pain. My podiatrist says he'll have me up walking after the surgery in a very short time, some kind of a boot cast thing.
I did verify my podiatrist's credentials and I do know about steroids. I didn't exactly express myself correctly, I certainly can change my mind about the surgery at any time but due to some time commitments in June, I either have do it now or what till later in the summer. I'm just not sure I can stand the pain that long.
I'm wearing a brace and I already had some other kinds of therapy to no avail. The bone is in the wrong place solidly and has to be removed, or it will just get worse.
Thank you for your input I'm scared but knowing others have had success really helps.
I hope others will comment today.
Posts: 199 | From utah | Registered: Jan 2009
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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Ohhh . . . a boot cast is not what it seems. I am concerned about that.
I, too, was given a "walking cast" and did walk some to the bathroom but my cuts all broke open and bleed right through the cast.
I had not listened to my doctor when he said they called it a walking cast but I should not have walked on it for 3 weeks.
A boot, too, I've had but had the same instructions of no real walking on that foot for 3 weeks.
I don't know how in the world stitches will hold the skin together enough for you to be up and walking around on that right away - unless they will do orthroscopic surgery but, even then . . . .
As for a wheelchair not being an option, well . . . I really have to advise your renting one for a month after your surgery. I can't tell you how much that can help the incisions heal.
You should be aware that total healing will take about a year, although with new custom orthotics that will be made after your surgery, that will help tremendously within a month.
posted
Thanks again, I will discuss all of this before we go any further. I have to be able to get around fairly decently between June 2 and June 12 (long story, commitment I made last fall before I became ill). If that is not possible I'll have to figure out how to survive like this until after that.
We live on a farm. I couldn't get a wheel chair from where we park to our steps, much less up the steps, but I'm getting lots of got advice to discuss with the surgeon.
You guys are great.
Posts: 199 | From utah | Registered: Jan 2009
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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You can also rent a motor scooter. Or a golf cart. See if any of the golf courses have an old one you could borrow. And a wheel chair for indoor use.
My guess is your doctor will insist on crutches, even with a boot. But, I could never uses crutches and my guess is that many lyme patients would also have problems due to carpel tunnel and other nerve pain that goes with lyme. You reallly need to be able to use your wrists to hold your weight on crutches. You might want to practice some of that now.
Crutches can be helpful for transfer but you may or may be able to use them for very far.
Your feet have to get you through the rest of your life. If you nurture them after surgery, they have a better chance of being there for you down the road.
There are also some vibrational sound devices that are said to help bones heal.
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- This is not the article I had in mind (my files are not organized) but it's a start if you wanted to research vibration therapy either before or after surgery.
The Felid Purr: A bio-mechanical healing mechanism
Will be presented, and published in the proceedings from the 12th International Conference on Low Frequency Noise and Vibration and its Control held in Bristol, UK, 18th to 20th September 2006.
Excerpts:
. . .
Lake in 1992, found that biomechanical stimulation prevents a decrease in muscle strength and muscle mass and the oxidative capacity of thigh muscles, following knee immobilization after sports injuries. The use of low frequency therapy also applies to tendon healing.
It can increase the mobility of upper ankle joints by 16- 19 %, Klysczt et. al, 1997, Biomechanical stimulation therapy as physical treatment of arthrogenic venous insufficiency, Hautarzt.
Exposure to frequencies between 2-100 Hz results in in the reduction of muscle spasms and more pronounced reduction of the spasms occurs the longer the treatment is applied, (D. Ardic, A. Buljina, 2000).
After ten days of short periods of biomechanical stimulation, upper mobility of ankle joints improved by 16 and 19 degrees and was accompanied by the healing of venous ulcerations after skin flap transplantation, (Klysch, T. et al., 1997).
It is interesting to note that Biomechanical stimulation is also used in public gyms and work-out centers to increase muscle mass. A web search will bring up many manufactures of such equipment.
. . . .
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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Sorry for so many random thoughts. Be sure to ask your LLMD about how, after surgery, to increase your liver support and antioxidants to get out some of the anesthesia as that can be very hard on your liver (and other tissue in your body) as it can contribute to fatigue, and even a dip in mood, for a long time after surgery if not addressed.
Perhaps a glutathione IV right after the surgery would serve you well.
i told 1 or 2 of you i'd find this; now i can't remember WHO i told this too! so posting this hoping those of you having surgery soon will print off the info and give to your surgeon and anesthesioligist!
i always had LONG RECOVERY PERIODS too. Betty
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posted
I had major surgery twice and minor surgery 4 times without any lyme related problems. I wouldn't give it another thought as long as your pre. OP work is normal and you have a good surgeon.
Posts: 789 | From CT, | Registered: Jun 2006
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bettyg
Unregistered
posted
willis, thanks for your really nice compliments in support on my vacation post and why lymenet needs me; very touching!
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
I would like to add a thing about anesthesia
here. Drugs for surgery are very important. There
are some better than others. I would
recommend your anesthetist use ones for people
with allergies, a lot tamer on the system but I
would go with what my LLMD suggests on this very
important piece of the Lyme puzzle which will
help you in your outcome. And be sure your
anesthetist knows you have Lyme which can effect
the nerves which is what he is working with. And
trying to control without depressing the system.
Those drugs cost more but are worth it long term.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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