Fusion Long ride to a successful Fusion

[Jamie]

Wanttoride.....I think you do need to slow yourself down a bit. You are not going to have resolution to any of this immediately. Recovery just doesn't work that way.

It may be likely that no one will tell you that THIS is absolutely what you should do. Most doctors give you options, their opinion, and advice but YOU must decide what is best for you to do once you gather information. It's a personal thing.

You seem so worked up that you are making yourself more stressed. Please try to be calm and go at this process methodically, over some time....not now, now, now.

You obtained your surgery notes and are going to get an appointment for a second opinion. This is good. Your current surgeon says he manipulated your knee well under anesthetic. That is a good thing. He's right that it is a good sign to obtain that much movement. It means you have the potential over time to obtain a similar ROM on your own. But you MUST allow yourself and your stressed body time to heal. You cannot rush it....as much as you would like to.

Are you still taking your pain medications on a schedule throughout the day and night? Are you icing and elevating your knee VERY, VERY frequently through the day and night? These are things that will help you if you keep them up. You have swelling (fluid) in your knee. Your body's lymph system takes days, weeks, maybe longer to absorb and remove that fluid. It's a slow process.

Please understand that I care about you. I'm not trying to minimize any of your feelings, but I am worried that you are stressing yourself out unnecessarily. Keeping yourself in this state of worry cannot possibly help with your nerve issues.

You may not be able to control the things going on within your body, but you CAN control your reaction to them. Be proud of the positive steps you are taking toward getting to the bottom of all this. Be happy you have people who care about you and are willing to help. Please try to focus on the good things you have going for you and the rest of this will sort itself out.

 

[wanttoride]

Thank you, Jamie! You said exactly what my OS has been saying...."this is going to take time". Do you think that PT is trying to rush things and maybe they are the ones that are causing me stress? A family member thinks this is so....

I really like my PT person, and all the effort she and the company she works for has done for me. However....it is (them) that keep pushing for more ROM, and pushing to get the fluid out of the knee. I really think my OS gave the ok for them to do "whatever it takes", without aggravating the knee in order to passify them.

A month ago, he said only to work on ROM and not to worry about the muscles. He didn't care if they "went to noodles". Just concentrate on ROM. Therapy did not agree, and wanted to do both ROM and strengthening. It was at my Dec. 22nd appt. that we went over everything PT was saying about how this (not doing strengthening alongside ROM) wasn't working. So.....that's when he gave the "go ahead" to do "whatever". As of today, I don't have any more ROM with these knee mobs than I did before. All I'm getting is more stressed out because we aren't getting anywhere as quickly as PT is hoping. Your thoughts and feedback are wanted, needed and gratefully taken!

 

[calling_all_angels]

Hi Want,
Glad to hear you got you OP notes to send on to the other OS And if you are worried about what he may think about your OS being able to get your knee to 130 rom when he did the MUA then make sure to also send your PT records that show that your knee turns blue and they can not get near the rom your OS did. It will be OK. I for one of many will be here for you every step of the way. We will help you all that we can. Even if it is just to listen.

 

[Jamie]

Wanttoride....I do think it might be a good idea to take it easier in therapy to see what happens. It's not like you MUST get all your ROM right away. Many people gain it slowly in time. It's for sure you won't be making progress if you have swelling.

However, I don't agree that you should completely ignore your muscles. To do so will allow them to atrophy and that can happen fairly quickly. What exercises has your therapist shown you for strengthening your quads?

Here are some gentle ones I would recommend:

SQUATS: Stand in front of a sturdy chair (like a wooden kitchen or dining room chair). If you need support, use a walker....it's okay to hold on to it loosely. Then bend your knees like you are going to sit down, but don't go all the way to the chair. Go just until you feel your quads "working" and hold it to the count of 5 and stand back up. Repeat this 10 times to start. Gradually work up to 3 sets of 15 squats at a time. As you continue to do this exercise, you'll be able to squat closer and closer to the chair. It's okay to let your bottom tough the seat, but don't sit down. Be sure to just use your quad muscles and not arms if you are using a walker to steady yourself. Once you no longer need the walker, you can extend your arms out in front of you for balance or bend them at your side.

STAIR STEPS: Stand on one of the steps on a stairway. Steady yourself by holding on to the rail or wall. Bending your operated leg, extend your good leg down to the step below as if you were going to step down backwards. Go just until you feel your quad muscle engaging, hold the count of 3 and then bring the good leg back up on the step. Repeat this 10 times. Work up to 3 sets of 15 times. As you get better, you can let your toe touch the step.

Do this same exercise sideways...where you bend the operated leg and extend the good leg down to the step below, then back.

Do this same exercise going down the stairs...where you bend the operated knee and try to touch the step below with the toe of your good leg.

Make sure that you do not overdo any of these exercises. You don't have to have major hurt to get muscle strength workouts!

Let me know if any of this helps you. I hope it does. I want to see things improve for you and truly think you will feel better if you aren't so stressed and pushing things.

You didn't tell me what you're doing in the way of pain meds, icing and elevating these days....what is your schedule for that? It's critical to reducing swelling.

 

[wanttoride]

Thanks Jamie! Yes...my PT person has incorporated the "squats" for the last 2 weeks. I do those 2x daily, mid morning and mid afternoon along with some other strength exercises. They seem to have helped, as I FEEL a bit stronger. We've strengthened my calf muscle really well by doing "up on your toes" excercises. We were using thera-bands, but OS said no...not yet. I LOVE the stair exercise! I forgot about that one...THANK YOU....I'll start doing those tomorrow!

As you can imagine, being an equestrian, I (used to have) strong legs. I made sure I did a lot of quad exercises a month before surgery, AND lost 15 pounds. I currently weigh 140 @ 5' 7". My quads were rock hard and "ready" for surgery! When I went to the gym, I could press more with my legs than some men could...AND I had knee problems. Once I was told that a TKR was the only resort, I did what I wanted to with the knee, taking lots of Aleve or Advil to get me through. I even went on a 5 hour trail ride with my riding buddies...my last ride before surgery. I was sooo sore afterwards, but it was worth it. I rode with my daughter (she's 25), and 3 other close friends that I've known for years. I look at those pictures often from that day!

Whereas this is my 5th knee surgery, the first being in 1979 to tighten tendons and ligaments from a skiing accident, I'm no stranger to therapy exercises, routines and pain. I really felt I was "prepped and ready" for this TKR.

As far as icing, I talked with the Pain Specialist, and he is dead set against using ice because of the RSD. He says ice is the enemy for people with RSD. Great...and I live where??? MAINE! He says to elevate, elevate, elevate. That's what my OS said too. Therapist were the ones that said to ice. Which, if I didn't have this crappy RSD, I would. "Been there, done that" before! The Pain Specialist asked if my pain increased 1. When the sun went down 2. When I went outside in the cold 3. When I used ice "Yes" to all 3 questions. I did tell him the ice made the swelling go down, and he said "Ok...but does your leg turn purple when you ice"? Yup.....

I think I wrote in an earlier post what I was on for meds. If not, let me know, and I'll post them.

Oh...I spoke with my Primary Care Physician today also. She is wonderful, as has been my PCP for almost 20 years. She knows me well. She has upped my Lexapro from 20mg daily to 30mg daily. She also read through the OS notes, and agrees with the PM Dr. No ice. I have an appt. to see her next Tuesday. It will be the first time I've seen her since the surgery. I'm very interested in what she has to say also. :wub: Thanks everybody! (I like this "smiley"!)

 

[Jamie]

Thanks for the details. That makes sense about the ice. We can't have your leg turning purple!! Since you can't use ice to help the swelling - at least for now - it will be VERY important for you to exercise and elevate right after. The exercise helps move the fluid around and elevation to get it out of your limbs so it can be processed out of your body. You'll get there. It will probably just take a little longer because of not using the ice.

The five previous surgeries on your knee can impact the speed of healing also, so be sure and mentally factor that in when you are frustrated with a slower-than-expected recovery.

Congratulations on the exercises. You are doing good ones! Just stick with them for a while and don't try to add much more in terms of strenuous or painful activity. You can just do more reps or sets of what you're doing if that gets to be too easy for you.

Once you get some strength, a good exercise is to balance on one foot and then the other. I'm guessing that is not possible for you at this point.....later for that one. Just be sure if you try it that you are standing by a counter to grab on to for balance when you need it. This exercise works your entire leg as you maintain balance....it's a goodie.

 

[Josephine]

He also said that IF there were a problem with the knee, it would not have bent that easily. Would this be so?

It would. Because when you have an anaesthetic, your muscles are paralysed so they can't spasm which is what they are doing because of the RSD.

If I seem to be doing an about turn on the knee, I am and it's because the more I read about RSD and knowing how it's affected my sister, I can see that this is more likely your problem, not a bad replacement.

My PT - when she is done with the joint mobs, my knee is purple. I have to elevate it for a couple of hours afterwards. As soon as I put my foot on the floor and start "crutching it" around....bang! The knee swells up, turns purple again and I'm popping another pain pill for "break-through" pain.

Is therapy doing my any good at this point? I'm thinking not...I can do everything other than joint mobs on my own, and I really don't think my OS is thinking this is working either.

Then I'm going to be bold and say, fire the PT and see to your own exercises. With the RSD, you are never going to improve with her bashing away at your leg. From what I've read, that's the very kind of thing that exacerbates it. She may even be causing that fluid she is so keen to get rid of! She's certainly causing the colour change which is a product of the RSD.

You know you do have the ROM, your surgeon has confirmed it. What is obstructing you is the muscles spasm from the RSD.

But all you need to do you can do on your own. Walking, gentle squats, heel slides, straight leg raises, cycling if you have an exercise bike. Nice and easy does it. You can get improvement with that in the long term whilst accommodating the RSD and not making yourself miserable the meantime.

As far as icing, I talked with the Pain Specialist, and he is dead set against using ice because of the RSD. He says ice is the enemy for people with RSD

Yes, ice is the enemy. It's said that in almost every website I have visited. Heat is too.

So, as Jamie has said, just step back, take a deep breath and try to bring your speed down from 200mph to a gentle crawl! Stress, anxiety and desperation all increase the symptoms of RSD.

 

[wanttoride]

Thanks again, Jo!

Shooting straight from the hip! I like that!!! :thmb:

I am doing much better today, mentally wise. My best riding buddy came over and spent the entire morning with me and stayed till mid afternoon. We baked banana muffins, too! She needed a shoulder to lean on, so it was nice not to have to talk about my problems.

I can't thank you enough for doing RSD research. Not only for me, but for your sister as well. I would like to know more about your sister's situation if you would like to share it.

I'm slowing it down....I promise! :flwr:

 

[calling_all_angels]

Want,
I found this info on this website:

broken link removed: https://www.georgetownuniversityhospital.org/blank.cfm?id=555795
I hope that you find it interesting. I just want you feel that we are all looking for info for you. This way you can just relax. And as I have said before "Jo" knows

Reflex Sympathetic Dystrophy

Reflex sympathetic dystrophy is an abnormal pain reflex that can occur after surgery on the upper or lower extremities. It is more common after total knee replacement than after total hip. This process can result in a significantly protracted pain in the knee. It is also commonly accompanied by significant stiffness in the knee. The skin will change to a very thin frail appearing skin that can be of varying colors; from purple to reddish to pink. In addition, it is frequently noted that there will be no hair growth in the area affected by a reflex sympathetic dystrophy. The skin will be exquisitely sensitive and painful to even light touch. There may be some remaining warmth within the leg. The diagnosis of this condition can be extremely difficult. It is most commonly a diagnosis of exclusion. A patient must be evaluated for the possibility of loosening of the components, infection, or other mechanical problem with the replacement prior to being diagnosed with reflex sympathetic dystrophy. Occasionally, a three phase bone scan can be helpful in determining the diagnosis of a reflex sympathetic dystrophy. When a patient is diagnosed with a reflex sympathetic dystrophy it is important to note that additional surgery on the leg will most commonly result in worsening of the condition.
Occasionally, the condition can be benefited from a sympathetic blockade which is usually carried out by an interventional neuroradiologist. In this procedure, a long-acting local anesthetic or nerve blocking agent is placed near the lower lumbar spine where the sympathetic
nerves originate. These nerves control the pain reflex and control blood flow through the skin of the lower extremities. The injection may result in a blush of color in the area involved with the reflex sympatheti dystrophy, and frequently can result in significant
relief of the pain of a reflex sympathetic dystrophy. If the injection is successful, a more permanent blockage may be necessary to maintain long term relief for the patient.

 

[Linda2]

I've been reading your posts, and I agree with all our experts here on Bonesmart. Since you can't use ice, which is the gold standard for the rest of us, it actually makes some sense to me that it would take you longer than most of us to achieve good ROM. When your knee is swollen, it doesn't bend well. When you can't ice it, it's harder to get the swelling down. I think patience is really important (which is much easier for me to recommend than to exercise!). I have never heard of a "joint mop", but if it hurts you and causes swelling, it can't be all that helpful. Tell your PT that you don't think it is helping, or that it causes too many problems. My PT always listened and changed tactics if something wasn't sitting well with me.

I also agree with the others--why not try the nerve block? Maybe it will be a huge success for you. You must, of course, find a doctor you trust with a good reputation, but if you can get a handle on the pain, you will be able to achieve your ROM sooner.

Good luck, and I will be praying for you.

 

[Josephine]

That's a good site, calling. Not seen that one before - or maybe I did but didn't scroll down far enough to spot it!

Two things stood out to me

1. [FONT=&quot]It is also commonly accompanied by significant stiffness in the knee.

2. Occasionally, the condition can be benefited from a sympathetic blockade which is usually carried out by an interventional neuroradiologist. In this procedure, a long-acting local anesthetic or nerve blocking agent is placed near the lower lumbar spine where the sympathetic nerves originate. These nerves control the pain reflex and control blood flow through the skin of the lower extremities. The injection may result in a blush of color in the area involved with the reflex sympathetic dystrophy, and frequently can result in significant relief of the pain of a reflex sympathetic dystrophy. If the injection is successful, a more permanent blockage may be necessary to maintain long term relief for the patient.


IOW, one of those treatments you'll never know if it will work until you try it. What else have you got to try?
[/FONT]

 

[wanttoride]

What is IOW???
I have visited this site before. Thank you for finding it again for me, and taking the time to type/cut&paste the information into the forum.

One of the reasons that I am not "thrilled" to have this nerve block is that the Dr. uses contrast dye, which I am HIGHLY allergic to. He says he can give me something beforehand to counter-act the allergic reaction, but again..."cannot guarantee that this "something" will control the reaction. I had contrast dye when I was being diagnosed with kidney stones 8 years ago. My throat swelled up, I could not breathe, and I got severe hives. All this while I was battling pain from a yet to be found kidney stone. People came rushing into the room and I don't remember much after that. Apparently, contrast dye has to be used in this nerve block in order to make sure the needle is in the correct spot... while they take multiple xrays as the needle travels to the correct site.

My fear having this nerve block is very, VERY real. Needles going near or into the spinal area are not something I take lightly. I had a friend that had an epideral during labor and it went terribly wrong. She lost feeling in her lower extemities for almost a month. She also had SEVERE headaches right afterward and continues to have headaches to this day....10 years later! She wasn't able to take care of her baby. I also have a friend who recently had needles put into his back to measure nerve responses (to diagnose his back pain). He said it was extremely painful, and the results came back inconclusive. He also had a nerve block, which lasted 3 hours, but the pain for the nerve block lasted 4 days. He does not have insurance, and the procedure was very expensive..for something that did not work. He is feeling pressured to have another one as I write this...and is being told the same thing..."well, this one MIGHT work"....

The success rate for nerve blocks for RSD patients is not high. Most people (from what I have read on different sites and blogs regarding RSD/nerve blocks) that have had one, would not go back for a second, and for the majority, the blocks worked for an average of 1 week. It is not a cure...only a bandaid to eleviate pain...temporarily.

I DO have something to lose. My sanity. If I were at a pain scale of 8 every day, I would have a procedure that was more "permanent"...whatever that would be. Why would I want to go through a procedure, knowing that the outcome would be 100% temporary? I am not made of money, and if you read the RSD sites in depth, many will tell you that a lot of patients end up going through bankruptcy because of so many procedures that just don't do any good. Once you have one, and get some relief (if you are lucky), you end up going back, and back, and back...hoping that the next one will last a little longer. Nope....sorry....not for me. I'd be writing you from a padded cell if that were to happen. So...I will do more research and find another option that is right for me....right now, the Lyrica is doing very well!!!

 

[wanttoride]

I am posting some information and blog postings that I have found on different sites regarding "nerve blocks" and what they do for the more permanent procedures: First, the procedure:

Technique

• The block is performed using X-ray screening, intravenous sedation javascript:;, local anaesthetic infiltration of the superficial layers, with the patient in the prone position (face down).
• Using X-ray screening, the needle is inserted about 10 - 12 cm from the midline, and advanced so that initially touches the side of L2 vertebral body. It is then withdrawn slightly and readvanced until it slips past the anterolateral border of the vertebral body https://bonesmart.org/forum/i-cache/nerve-lumbarsympatheticblock.JPG.
• Radio-opaque dye https://bonesmart.org/forum/i-cache/nerve-lumbarsympatheticxray.JPG is injected to confirm correct needle position.
• For diagnostic blocks (CRPS I and CRPS II), 5 - 10 ml 0.5% chirocaine is injected.
• For neurolytic blocks (arterial insufficiency) 3 - 5 ml 6% aqueous phenol is injected.
• The same is done for the L3 and L4 levels. Some practitioners treat only L2 and L3 by using a single needle.

Complications

• Genitofemoral Neuralgia occurs in 5% of all blocks. This causes pain in the L1 groin area https://bonesmart.org/forum/i-cache/dermatomes.jpg and is thought to be due to bruising of the L1 nerve root by the needle passing by it. More than 90% of cases recover spontaneously after 6 weeks. Treatment with amitriptyline and gabapentin / pregabalin can help greatly.
• Bleeding due to aorta and inferior vena cava injury by the needle.
• Intravascular injection (should be prevented by checking the needle position with radio-opaque dye).
• Upper abdominal organ puncture with abscess / cyst formation.
• Paraplegia from injecting phenol into the arteries that supply the spinal cord (should be prevented by checking the needle position with radio-opaque dye). https://bonesmart.org/forum/#top

Below are excerpts from websites and blogs:

...."My back hurts for a couple of days and the leg acts like it is angry with redness and swelling but the symptoms level out and I felt half way normal for a couple of days but the RSD starts to creep back into my leg and the symptoms progressively get worse and I end up in pain again which really sucks so that is why I am getting the implant. The 2nd and 3rd were less effective so I am getting ready to have a spinal cord stimulator implanted."...

..."The pain Dr. said the block can be used as a "diagnostic tool" to see if my problem is a nerve issue or if something mechanical is wrong with my knee. From reading posts on this board, some pain Dr.'s tell you that at least 3 blocks are needed to see results, if any. At a cost of $2,000 to $4,000 per block, that's pretty high."

I am checking into "three-phase bone scans" to see if this is an option for me. Since my OS wants to do this nerve block for "diagnostic purposes only", this is a non-invasive way to get results. Jo...are you familiar with these? In my profession, there are most often other ways to obtain information and different ways to treat conditions. It seems that having a nerve block is a "walk in the park" for some that wouldn't bat an eye at the possible side effects. Please remember...getting nerve damage was a minimal risk/complication in my TKR and "fluffed off" before surgery. I won't be "fluffed off" again...for any procedure. Even those with minimal risks. Nope...not me.

 

[Josephine]

IOW = in other words! Text speak!

Apparently, contrast dye has to be used in this nerve block in order to make sure the needle is in the correct spot... while they take multiple xrays as the needle travels to the correct site.

Well, quite apart from what was said in the bit you c/p, I don't think that's entirely true. The nerve blocks I saw done in theatre (OR) were done under image intensifier (live xrays). They seemed to work tolerably well.

I had a friend that had an epideral during labor and it went terribly wrong. She lost feeling in her lower extemities for almost a month. She also had SEVERE headaches right afterward and continues to have headaches to this day....10 years later!

Without a doubt, the experiences of your friends would understandably put you off - heck, they'd put me off!

However, as regards the obstetric epi, I would suggest that was quite probably due to the drug being put in the wrong place - meaning wrong by about 1 or 2mm. My niece had such an experience. In fact, in her case, the drug was injected into the spinal fluid (bad mistake!) and she not only collapsed but also arrested. The doctors told her she'd had a reaction to the drug which she took to mean an allergic reaction. For years she lived in dread of any injections on the grounds of "if I was allergic to that, what else am I allergic to?". It was years before she discovered that that wasn't the case at all but that the epidural had been botched. She went on to have two more children.

I tell this story to illustrate that often these cases are due to the procedure not being done correctly and not because the procedure is inherently dangerous of itself. However, it is totally natural to feel put off by them and fearful that it happens frequently, which actually isn't the case.

The success rate for nerve blocks for RSD patients is not high.

So...I will do more research and find another option that is right for me....right now, the Lyrica is doing very well!!!

This is true and whilst I, too, shall be researching, I am pretty sure that in existing medicine there just aren't options yet. That's the tragedy. It's like a lot of conditions like MS and Parkinsons - there is palliative care but not curative treatment. Not yet. God willing, there is research under way. I can't say I'm too thrilled with the "well, let's try this and see if if helps" approach either.

so that is why I am getting the implant.

What implant is that?

In my profession,

Now I'm intrigued! What profession would that be?

 

[wanttoride]

The implant is a "spinal cord stimulator".

The Pain Specialists in my area (the one I am now seeing, and I've asked at another office) use the technique that I mentioned...contrast dye with multiple xrays to see where the needle is going.

I am a dental assistant and dental radiographer with specialization in interpersonal communication and stress management. (yeah, I know...that's a good one!...practice what I preach, right?) :lvros:

Going to the dentist is very traumatic for lots of people. Many are very afraid to even have their teeth cleaned. We have several options for patients who are scared. We can use nitrice to get them sleepy, we can give them a pill to relax them and make them "sleepy" or we can just simply hold their hand. We give the patient options for treatment. Not everybody is a fan of a needle going into their mouth....especially kids. I specialize in young children under the age of 8 (they all come to me when they need restorations, xrays, etc.....I make it FUN!) and elderly patients. They tell me I have a "special way" with young kids and the elderly, which makes me VERY happy! :D

It's been almost 3.5 months since I've been able to work...I miss my co-workers, and my patients. They keep asking where I am...and when I'm coming back.

Thanks for your reply, Jo...I was beginning to think I was being pressured into this nerve block and feeling stupid and looked at as "being difficult" because I don't want it. I just don't want it...I don't.....!!!!!!!!!!!

 

[calling_all_angels]

Want,
You must do what you think is right for you. No one can tell you what to do. You must feel whats right. And by checking out everything that you can never hurts.
Hope today is a good day for you.

 

[wanttoride]

Thanks, "angel". I'm hoping to get up to the barn today to see my horse and pony. Hubby has the 4-wheeler ready....my "chariot" awaits!

 

[Jamie]

There you go! Where there is a will, there is a way!!! Have a nice visit with the ponies....I'm sure they will be thrilled to see you. Take carrots!!!

 

[Linda2]

Is acupuncture ever used for this condition? (And of course you shouldn't have the nerve block if you don't want it!)

 

[Josephine]

Going to the dentist is very traumatic for lots of people.

Oh tell me about it! I have been a serious dental phobic for around 25 years! I used to be fine but then something happened that freaked me out and I didn't go for ages. In the end, I found a dentist who specialises in 'difficult' patients including learning disability children and such. She was/is wonderful and I am completely at ease with her. We have this arrangement where she will stop every so often and let me swallow (part of my phobia) and even gives me a running commentary with estimated times of how much longer she will be doing this bit.

Having now moved house, I travel 250 miles to see her and, though I used to do it there and back in a day, now have to put up in a hotel overnight! Plus she's not NHS any more so I have to pay for my treatment. Though I do know she cuts loads off my bill before she hands it to the secretary as I've seen the bill before she's had a chance to edit it and it was about 3 times what I paid! She is a sweetheart and an angel, for sure.