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Gonna be long wait for me & others sagas as well - help??

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Josephine
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Josephine

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my left knee, the one that keeps trying to have its patella come out laterally, has a big bony like thing sticking laterally out there, i have never noticed before? In the past there was always fatty tissue and swollen like sitting there, now is unnatural feeling and looking bony structure sticking out.
I think what you are describing is an osteophyte which is an outgrowth of bone caused by arthritis. It might look something like this - this is my knee before it was replaced and you can see the osteophyte pointed out by the yellow line. And it won't be loose - it's very firmly attached to the bone! My opinion? You need a new knee!

knee 5-03-09.jpg
 

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sheryl7
You are dealing with so much! I have a question for you. Did you ever try nitroglycerin ointment. I have been prescribed this by my colorectal dr. I am worried it will cause havoc with my IC.
I am also curious, can you pin the nerve problems you are having to any specific incident, infection? I am also experiencing numbness in arms and feet.
 
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sheryl7

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Thank you Josephine. I am at a loss on this one. I have never felt this before. I always had the stone in the shoe feeling you describe and have gotten used to that.

As soon as my divorce is final I can straight away get some financial aid from my actual insurance to help me with co-pays and meds. At that time I will get into OS asap.
As in the past this area was a swollen area of fatty tissue. Now its replaced with what I best describe as a marble-size jagged like bony structure sticking out. At rest it fine, walking its aggravated, but up or down stairs it out-and-out hurts. And it just looks and feels so unnatural, it gives me the willies every time I see or feel it. Thanks again for your insight.

Hi Barbie j. I have never heard of nitroglycerin ointment?? What is it prescribed for??
I do know how you feel about anything upsetting the IC. I am going to Google that ointment and see what its for.

Oddly enough I have found since January when my pain management Dr prescribed nuerotin for my back, instead of helping the sciatica, it has actually instead helped the bladder greatly. This indicates to me, in my humble opinion that my IC is somewhat nerve related, seeing on how the nuerotin helps it greatly. The nuerotin is doing nothing for the sciatica though. But i will take the help in the bladder that its helping with.

I really cannot pin point a specific injury to blame for any of my nerve issues. I mean I have fallen so many times in my life, had a few auto accidents (nothing severe though).
My best educated guess, and this is going by my pediatrician when I was 12, I distinctly remember him saying to me "you likely will not be walking by the time your 35." Well I am 44, still walk, not great, but I walk.

So again I think most of my issues are congenital in nature, perhaps being aggravated by environmental surroundings, like falling, or stress, and so on. So to answer your question, no I do not believe my issues with nerves are due to any single incident to pin down. I believe mine is congenital, just being worsened with age. But I might add, that anything that is of an autoimmune disorder could definitely contribute to to nerve issues. Diabetes can very much contribute to nerve issues as well.

I bet there all kinds of issues that can contribute to nerve issues. So it is really hard for anyone to be able to really pinpoint any specific reason for it, unless like you asked, if there were a specific accident involved. Sorry I could not have been more help on that question.

I do think that all the stuff you have going on, brought on my your hip replacement could be a contributing factor for you, since you say, before replacement all was well, except of course your hip.

Good luck with your IC, and I hope new med doesn't flare up your IC. I know you have enough to deal with already with the hip, gastroparesis, etc., that you do not need an IC flare.

I do not know if you have been prescribed nuerotin in the past, but it may be worth a shot. It's generally for nerve issues, like sciatica, radiculpathy (spelling?), but like I said oddly enough seems to help the bladder.

So my guess with all the autoimmune issues you have going on, that it can definitely be a contributing factor of the nerves. But your best best is too see a neurologist and get his medical opinion and expertise as to why you are having numbness in your hands and feet.
I also for me anyway, believe even stress in and of its self can bring on that numb like feeling in your limbs too.

So, in conclusion I really can't pinpoint any one specific thing to have activated it for me. I believe its a whole host of things going on.

Good luck with the ointment that you have been prescribed. I hope it helps your problem and does not aggravate the IC for you.
Hang in there, we will survive this together...Sheryl :flwrysmile:
 
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sheryl7

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Hey Barbie J, I just checked what it's for and think if can be real careful to keep away from the IC area you may be ok.

But I did read the side effects and am hoping the benefits for you outweigh the risks.
But there are risks with any medicine we use.

I would suggest to at least at first use a tiny tiny bit to make sure your body can actually tolerate it. I was kinda freaked when I read to wear gloves or wash your hands straight away as it absorbed through the skin.

I read in its oral form it is for angina of the heart.

So approach with caution and report anything unusual to your Dr asap. And good luck with it. Hope it helps and does not aggravate the IC..Take care...Sheryl :friends:
 

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My Urologist gave me a handout which lists preservatives and foods to stay away from if you have IC.
Foods that contain nitrites or nitrates is listed. Nitroglycerin is composed of that. So even though I started using a tiny amount and have only been using it for a few days, last night was a bad one for me with burning and getting up several times.
How disappointing to have the medications used for the fissure be ones I cannot tolerate.
Also my general intern wants me to start taking neurontin for my nerve pain. So I guess I will start that now. Glad to hear you are managing ok on that.
My colo rectal surgeon wants to do Botox injections since I am not able to do the medications. I have read that they are sometimes used for Bladder pain. I will need to discuss this with my OS to check if it is safe for my hip replacement.
These artificial knees and hips make treatment for other problems so much more complicated and risky.
Great if you never have other health or dental problems. I thought I was the person on no medications and no health Issues. Wow, has that changed entirely for me.
 
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sheryl7

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(((HUG)) BarbieJ, I know how it feels going trough the ringer with meds, I for one cannot tolerate any nsaids, which makes it very difficult to treat inflammation.
I have heard the botox injections does help with the bladder, at least for some people. If its covered by your insurance, it may be worth a shot, but if u got to come out of pocket for it, I may be a little leary, as I am sure botox injections are not cheap.
Please do let me know how the nuerotin works for you, give it some time to be in your system, all I know is since Jan when i was put on it, I have not had a flare at all, and that in itself is a miracle, and the only thing I can think of is the nuerotin as i was already on the Loratab did nothing, diet, nothing, but i stick with the diet as it does help the gastroparesis greatly, so worth staying on the diet for me.
Hang in there, as my late mil used to always say, this too shall pass... :friends:
 

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Thanks Sheryl. Be grateful that you still have both your knees and you can focus on your other health issues right now. I wish my problems had not waited until right after my surgery to flare.
 
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sheryl7

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Hi Barbie j, I'm sorry every thing is hitting you all at once.
I know the feeling. .
My hand is almost 100 percent after one month.
Unfortunately though, as financial aid becomes available, I Will have to see an os am having a bony growth on the outside of left knee that deg needs to be tended to. It is greatly affecting my life.
So need to see os.
So I may need sooner then r expected.
Just took my med.
So a little loopy, as well as sad.
This divorce, and not having custody of my 14 year old daughter is really taking a huge toll on me. Monday I cried out liud for over 10 hrs. I KNOW that's not helping issues.
Hope you get some respite with your issues as well, we will have to hang in there together.....:)
 
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Ah I so frustrated typed a big ole post and lost it.
Basically update on my knee.
The bony growth is seriously getting the way of living period.
I have an os appt May 23rd, hoping soon to be ex will give me 40.00 for the co-pay.
I just hope this os has a clue, the rest have said, lose weight ,pt , take nsaids your not suppose to take, nsaids gel which did nothing, cort shots, lased less then a week.
I am tired of all the above, and weight is most def not a factor any more, and if they are not blind they can see the large growth with out an ex ray,. They had better not say live with it, I cant dang walk with it.
Josephine, what do think an OS would say to me about the at least marble size growth, do u think they will pt me again, and again. it blasted hurts I cant even attempt pt.
I guess worse case secnairo they open up knee and cut it out of there, but with out a tkr, wont it just grow back?
I move permanently tomorrow, very sad, been in this house 15.5 years, our kids grew up here, ex is renting place out. So many emotions going on, i just want to crawl under a rock.
Anyways any ones experience or advice please post back would be greatful
 

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They had better not say live with it, I cant dang walk with it.
Why are you sticking with these people? There are plenty of surgeons out there with more compassion than this.
I guess worse case scenario they open up knee and cut it out of there, but with out a tkr, wont it just grow back?
Well, since it's called an osteophyte which means it's an outgrowth caused by arthritis, just cutting it out would be a heinous dereliction of professional care. And they're not usually on their own - you probably have many other mini ones. They're just like mushrooms, just one or two get bigger than all the others!

osteophytes.JPG
 
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sheryl7

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Tanks for your insight Josephine.
I dont have much choice where i can go for an OS had appt tomorrow had to cancel, no money, no co-pay, and they are only a kaiser(my insurance for now, which is awesome BTW, but not their affiliates).
Kaiser is billing me for my co-pays, and one time free med as my lung disorder is acting up again. kaiser has a financial aid program, that i will prob be approved next week, until I get approved for SSDI and SSI.
Sorry so long to reply, have been moving, divorce is finally final and i can file for government and state help.
Now live on farm with hay is killing my lungs, my poor kitties now have to be indoors, so litter cleaning the dust is also killing lungs. But not around ex who would smoke, so that's a plus.
i cant totally knock him, he is paying my rent til i can get government help, and he buys me everything i need until again have money from help from the government.
I do have on longstanding friend for about 8.5 years, of whom i initially met on a interstitial cystitis forum for my bladder.
She is actually originally from Michigan and as luck would have it, she met a man online who lives in GA, where i live, so i have had opportunity to see her several times, she not close by though.
Last time i saw her was at Myrtle Beach last year, as we were both by chance on vacation there at the same time, but we chat online daily, we support each other, so next to God, she is my only real emotional support system.
Oh my the left knee looks like a deformed something from a sci fi movie.
the marble size spur now looks golf ball sized , very red and swollen and painful. but until i get assistance i cant do anything??
So any prayers out there for government assistance would be very welcome.
Also sorry I haven't been on to encourage other with their surgeries, just been busy moving.
I am going to kaiser(my insurance) today for the lungs, and i get a one time freebie on the meds til they approve me for financial aid, going to try and get all i can, new script for fioricet migraines, Zofran= nausea,antibiotic= lungs, albuterol liquid= lungs, imitrix = migraines, medrol shot and medrol pack= my body is beaten to death from illness could stand a medrol pack, havent had in 14 years, so should help some with weakness.
I have come to the conclusion hand prob was not nerve related as never numbness or tingling like u get with sciatica.
It just lost strength, after 5 weeks of self pt i have it at 90 percent. but now other arm and hand are losing strength too, this is a muscle issue not nerve, i am losing strength, as i can feel the limbs (arms) perfectly well, no numbness tingling etc.
Have neuro appt on July 1st, gastro appt in June as i vomit almost daily.
And hopefully new PCP since I moved will provide some knee braces as when my hand went dead they braced me, and they were not a OS just PCP so hopefully they can better brace me til i can see OS.
I am positive that at the very least left knee needs tkr asap!!!
I hope the new PCP with kaiser is as through as old one, need lung x-ray marked stat, so i can having breathing treatment while waiting for technician to give results on lung x-ray.
I will keep posted. and hopefully one day sooner than later i will get my poor knees(s) taken care of.
Righty not looking so hot these days either, but far better than left.
God Bless everyone, I hope u all with upcoming surgeries do well....Sheryl :flwrysmile:
 

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I'm sorry you're in such dire straits, Sheryl. If there was something I could suggest, I would. Wish there was.
 

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sheryl7 oh, sweetie, my heart aches when I read about all your health issues. I wish there was something I could suggest too. Please know we're thinking of you, and I'll pray you get the financial help you deserve sooner rather than later dear.

Big ((((((((( HUG ))))))))) for you.
 
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sheryl7

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Thanks Josephine, it does help a lot knowing thee is at least people out there who care, u may be not able to do anything, but the support helps greatly.
Good news, lungs looked better, she gave me liquid albuterol, i had to beg for it, puffers dont work, liquid opens my airways immediately, i will have to take it for life, keep me off tank, but i can handle that, so that was a great bit of news.
As i said i got my hand to 90 percent, so i am pleased with that.
See neuro on 7-1. so will see what he says. Prob MRI me to rule out MS, or rule in possibly, i have ever symptom of it, the internet is a dangerous thing.
Got psychiatrist next week.
Also good news, is kaiser has approved me for financial aid for 6 months allowing me time to get get state and government help. so no co-pays, no pay for meds, not pay for procedures.
I accidently gave a lawyer on line my number, thought i was filling out SSI, but it was a lawyer, he will call tomorrow, he said its a myth u have to wait to be denied before getting a lawyer to take u on as a retainer, if he dont think i win he wont take me on, but he thinks i will win within 2 months. so why not?he just gets my back pay, i can deal with that.
But its the poor knees who have to suffer, kaiser dont have their own OS's.
Plus i dont bat a 1000, when it comes to OS's , keep shoving me on nsaids, that i cant take down my throat, and pt me to death.
So all in all, not a bad visit yesterday, but doing laundry at the ex's was a night mare, dont think will ever grace my presence there again, dont know how i will see my daughter.
truth be known he was too stupid to change the documents, and according to the law, i still full legal custody of her, but she hates where i live on a farm.
so when i move, she may want to live me, i cant provide dirt bikes and 4-wheelers for her, or a brand new
cabin.
But God has got my back so to say.
Thanks again for everyone's support and caring... :flwrysmile:Just saw your post Titan Lady, thank you for the prayers, so i see u are getting ready for knee 2?
BTW i just used the auto draft saver, really came in handy!! :thumb:
 

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sheryl7. Yes, getting ready for knee two on June 14. Have everything ready exept the cooking for the freezer. Will do that the week before surgery.
 

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Sheryl,
I am still here and stopped in to look and see how you are doing. My IC has been unmanageable lately. Sounds like you have been dealing with more than anyone can possibly deal with. My heart goes out to you. I was at Mayo this week. Received two MRIs, an EMG and blood tests. All look normal. So the docs there are suggesting I move on to pain management.
I am praying that you can find happiness and normalcy. I hope you don't need a knee replacement. It sounds like you do. :thud:
 
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Hi Barbie J i didn't realize u had posted me til yesterday.
i had typed up a reply on my phone. and lost it all. and i guess the auto draft saver not there.
I am sorry to hear your IC is giving you so much trouble.
Mine is behaving at the moment.
Hand is still improved.
Have appt today for migraine help. I had to come off Elival rather abruptly. I was doing bizarre weird things at night the kids were telling me. And i hurt my self a few times. So Had to stop taking, but has brought on an onslaught of severe daily migraines, as it helping prevent migraines for me, as well as help with sleep, and depression.
So sleep not that well, and head is killing me.
My knee appears to have now two marble size bones sticking out the side of it.
They losing weight suppose to take pressure off your knees. Well hundred pounds lighter , they only feel worse, and look decrepit.
I must wear a brace on left knee at most times, i leave off in my apt. But going out anywhere is a must or the patella wants to slip out.
So yes it appears that I will indeed need tkr's if I want any quality of life.
Sucky party is now my hip is joining in on the action too.
I cannot not have the MRI's like you can because of the interstim in me. I would get electricuted so they say.
So late July I have to go in for a myelogram/ct to get better look at whats going on in my back, and go from there.
I am going to leave off for a few months and see if its really doing me any good, as I dont think it is, and when time comes have removed instead of replaced. Then i can have MRI's.
Thank you for thinking of me, and too shall keep you in my thoughts and prayers for some relief.
Take care... :flwrysmile:
 

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Sheryl,
This weekend I had to go to urgent care for a UTI. Have no idea how I could have gotten one. I use my own toilet paper and bring it with me always so I don't use something that could irritate, shower after my morning elimination, haven't been intimate with my SO in months, stand never sit on bathroom toilets other than my own, use soap recommended by my urologist, try to drink at least 36 ounces of water a day. I know they recommend 64, but I will spend all day in the bathroom at anything more than 48 ounces.
I follow my IC diet to the letter, no soda, juice, coffee, tea, alcohol, fruit, tomato, etc.

Sheryl, I am afraid that my inability to keep this condition of IC under control is going to wind up with me losing my hip. I am pretty scared.
The last UTI that I had was last year in May on a trip to see my family.
I have been to the doctors at least a half dozen other times to have my urine cultured thinking I had one but those turned out normal.
My pain of my hip replacement is far worse than it was before I had my THR.
It isn't just localized to my hip. It is now involving my entire pelvis and also my other hip. The pain is so sharp that I want tp pass out. Then it will subside and come back. I can't titrate up with my gabapentin because I get too nauseated. Am only on 200 mg a day which is not enough.
I feel better now that I have been on cipro for 5 days. When I am on antibiotics I feel better everywhere in m body. Even my meralgia subsides. Then the more weeks I am off of it the pain returns. It is debilitating pain. So much more than the pain of osteoarthritis.
I would never have had this THR if I knew I would be afflicted with IC, gastroparesis - acquired after taking atarax for my IC, and the risk of infection that comes with UTI and feeling like I have a UTI every day.
You and I are in dire situations. I am praying for you and want to know how you are doing. What other medication can you take oter than elavil?
 
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