PDA

View Full Version : So much has happened!



the_baroness
10-06-2013, 11:42 AM
First of all, I am so glad the forum is back! I really felt at sea without it. While it was gone, I detoxed from Oxycontin, had my second post op visit, tried and failed to detox from Neurontin, and started physical therapy. What I have learned while trying to go it alone without my beloved forum:
(1) I would not recommend Oxycontin to my worst enemy.
(2) Dr. Errico is my hero.
(3) It only took 3 visits to PT thus far to learn that I actually do have far more movable parts in my spine and hips than I thought I did.

The neurontin has turned out to be a last little nuisance that I have been having a tough time getting rid of. I went from 1200 mg and tapered down on a schedule to 300 mg, but when I tried to go down to 0 mg, I got very sick. After being thoroughly weakened from the Oxy detox, I didn't have the strength reserves to handle it. So I went back on the 300 mg until Dr. Errico's nurse Oksoon (who is also awesome) could get me a prescription for small increments. So first I went to 200 mg / day for a week, then 100 per day. Next I'll go down to 100 every other day. Then off finally. Either the neurontin itself, or the lack thereof, I'm not sure which at this point, is still making me sick, so I can't wait to be done with it.

At my second post op visit with Dr. Errico, he seemed really pleased. All the screws and rods seem to be still exactly where he bolted them in the first place. I've lost 15 pounds since the surgery. He says my tailbone is probably hurting me when I sit since I don't have as much cushioning. Hmmm... I still have pain in my ribs, which he was unconcerned about and says will go away, and more distressing to me I have had a rough time since going off the Oxy because I am out of breath all the time. Does anyone think that could be because of swelling? Why would I have trouble taking a deep breath? I know I am fatigued and exhausted and all my muscles in my torso are weak. And my lungs are in the vicinity of my hardware. That could be the cause. My goal is to get to my tai chi class to work on my breath, but I haven't had the stamina to walk to the YMCA where the class is held. I can walk 3-4 if need be, and I usually am walking 1.5-2 miles per day since going off the Oxy (it was a struggle to regain my distance after the detox), but the Y is just far enough away that I don't have enough strength to walk there AND take the class. That is my goal though.

PT has been a revelation. I'm not quite sure the therapist fully understands what "fusion to pelvis" means, because she keeps trying to get me to do pelvic tilts to strengthen my core, but she accepts my word when I say I can't do them. I'm pretty sure she just thinks it's a mental block I have against doing it, even though I've shown her my Xrays, but whatever. I think she's only about 25 years old. At the wise old age of 41, and having gone through what I think is probably one of the most brutal surgeries in the world, I am trying to accept that the rest of the world are mere neophytes to pain and suffering compared to me! But anyhow, all that being said, just one week of PT and I feel like a brand new person. I had been holding myself so still trying to protect my fusion, especially after going off the Oxy when I had so much pain in my ribs, that I didn't realize that there actually are muscles in my back and stomach that I can still engage and call upon. Holy Toledo! I had sort of fallen into the thought pattern that I would be a weakened invalid for the rest of my life. I'm still pretty weak. But I am amazed to know that there's definitely some potential there that I can strengthen.

I went out to see a band last night at a club for the first time in 4 months. I can count on one hand the number of times I've been into Manhattan since the surgery so this was pretty major! I did fairly well sitting on a barstool for an hour, all things considered. I'm looking forward to attempting to dance. I'm going to put that on my list of goals for my PT, along with:

1. Taking off my socks. (I can put them on, and I can take off short socks, but taking off long socks is pretty rough.)
2. Sleeping on my side. (Still very painful)
3. Being able to open heavy shop doors.
4. Returning to martial arts training. (With the exception of tai chi, I think this might be a 2015 goal.)

Anyhow, definite signs of improvement in my life. Some stupid young twenty-somethings taunted me in the east village last night for walking slow and stiff. That was pretty embarrassing. My husband tells me I need to bring my cane so people realize I have an injury and give me some leaway. Otherwise the foot traffic in Manhattan still goes way too fast for poor little me. But I've come a long way, baby! I'm on schedule to go back to work Nov. 4.

I've finally managed I hope to attach some photos of my X rays, before and after. Thanks, upgrade! I could never get that to work before. Welcome back, everyone! I've missed you!


151415151516

tae_tap
10-06-2013, 02:20 PM
Wow! You seem to be doing great! Just keep taking things slow and steady. Do not rush! But beautiful art work!

Tamena

titaniumed
10-06-2013, 02:27 PM
Congrats on conquering Oxy. Nasty stuff after a few weeks for sure.

I tried Gabapentin 100mg and didn’t like it. That was a short lived experiment....

It takes some effort pushing past the pain while weaning. Those days are long gone for me now, but those were times where I had to hold my head up and keep on the course.....Keep walking short amounts often through the day.

Yes, there are muscles up high...(smiley face) and in PT, the Arm bike was beneficial. That’s the machine where you pedal with your arms. Don’t overdo this, just a little bit every second day. You can emulate this motion holding 2 small soup cans. Weight and force needs to be light. Its all about the movement. 1 minute every second day. Don’t overdo, this is a gradual thing. After a week you can go to 90 seconds. You get the idea.

Remove your socks with the big toe of the other foot. You can also bend your leg back and reach with your hand to remove your sock.

I don’t think you should be lifting heavy doors. I still don’t do this and I’m almost 6 years post.....I mean, I can do this, but why bother? Its not worth it. I always get someone else (Young and tough) to do things like this for me.

Learn to ask.....learn to ask for help.

I replaced meds with nutrients. I was drinking Whey protein shakes. This chemical purge, with water dilution, and replacement with the good stuff really works....

Sitting on a bar stool for 1 hour is not an easy thing. Sitting on a Grand jury? Impossible. Simply submit your x-ray next time your selected. Ask if they think you can sit there long enough and keep a clear head?

Pelvic tilts are impossible.....we know that. It’s a nice thought anyway......you will teach these young things, that’s what we do.

Ed

Irina
10-06-2013, 03:02 PM
Glad to see you back, the_baroness!

Doesn't PT feel good? I loved it too. Just take it easy, like Ed said. I had a great therapist who was familiar with long fusions, but both her and I wanted to push me to my doable limits. I lost so much muscle after the surgery and my arms were getting flabby, so I asked for many exercises to tune up my arms and shoulders. Well, they look good and firm now and I am more fit than before the surgery, but I've got frozen shoulders! I think I was overusing my shoulders with all the log rolling, dumb bell exercises, push ups and planks. I am back to PT with a with a different therapist, who is a shoulder expert. It's always something, isn't it? But oh well, it's not a big deal and I'll get over it.

I agree with your husband about taking a cane. Traffic in Manhattan is crazy and I would be also scared to go out there. Good luck with weaning off neurotin. It's unfortunate that it's making you sick. Do you have good appetite or you get sick from eating? Can you eat some nice muffins, pastries and cakes to put a few pounds on your bones?

the_baroness
10-06-2013, 03:19 PM
Ha ha, the big toe sock removal method! I have tried that one. I think I need looser socks.

I am definitely having trouble eating and getting enough calories. I used this calorie counter thing on my phone, and it says I need about 2000 calories per day, although that seems a little high. I conducted an experiment one day and tried to eat as much as possible, and still only made it to 1600 calories. Eating upsets my stomach, and I'm having digestional problems, so I just eat small bits throughout the day. Some days I just eat mostly bread, which I'm sure is not giving me enough nutrients! I haven't been craving any sweet things like muffins, which is actually pretty unusual for me :) I have to say I certainly don't mind being skinny for the first time in decades! But I run out of steam so quickly that I'm sure lack of nutrients, or maybe lack of calories, I'm not sure which because I don't understand that stuff, but I'm sure that diet has something to do with it.

Ed, what are whey shakes? I remember reading on the forum about drinking Ensure or something like that. That was one of the things I missed about not having the forum for a month! I've been wanting to look that up!

I tried the arm bicycle, and I absolutely love it! I will try the soup cans too. Of course I am totally overdoing the PT at home, and pushing myself probably too far, because that's my way, but I feel like I've come back from the dead and I'm happy to be alive. My body always stops my when I've had too much, so I can't really truly overdo it.

If anyone has any suggestions about this shake business, I'm all ears. I'm not looking to regain the weight, but I've got another week and a half or so of tapering off the neurontin, and I need something to help settle my stomach.

the_baroness
10-06-2013, 03:24 PM
And what's hilarious is I just got a jury duty qualification notice yesterday! I think I WILL send them copies of my X rays.

Irina, do you still walk with a cane? I think I need to just swallow my pride and use my cane. Because you know what they say, pride goeth right before a fall!

Irina
10-06-2013, 04:10 PM
And what's hilarious is I just got a jury duty qualification notice yesterday! I think I WILL send them copies of my X rays.

Irina, do you still walk with a cane? I think I need to just swallow my pride and use my cane. Because you know what they say, pride goeth right before a fall!

No, I don't use a cane. I stopped using it at about 2 months, but I don't live in NYC! Silicon Valley, where I live, is a very sleepy area comparing to Manhattan. I also had my brace and I took advantage of it when I was going places where people could bump into me. My brace would always clear ways for me (I wore it over the t-shirt and didn't have anything over the brace so that people could see it).

Speaking of a jury duty, I also got a notice when I was 3 months post-op. They want a doctor's certification that you can't do it (at least here, in CA). I went to my primary care physician and she wrote on the form that I had a spinal surgery and can't sit for more than half-an-hour, put her stamp on it and I mailed it off. I got excused. I am not sure that a court clerk would care for your x-rays - they want an MD's sign-off. If it's too much trouble getting an appointment for that with your surgeon, your GP will do it for you.

titaniumed
10-06-2013, 04:50 PM
Classic! I thought I would mention the jury duty thing....I guess my timing was perfect. I wouldn’t want to have to sit in court 3 months post, that would be a killer, especially on meds. Once you tell them about the surgery, the meds, and add an x-ray, they should let you off. Just mail in and wait. I hand delivered this information to the court and set the security alarms off and they wanded me. I lifted up my shirt and showed them the copy of my x-ray and all they could say was “wow”. I never had this happen at an airport.

Whey protein powder is used by body builders.....it will put weight on without the fat. Its sold at the grocery store, just ask.

In a blender, I would blend
1/2 cup whey powder (high in protein, you need this in recovery)
1 banana
1 organic yogurt
20 blueberries
10 raspberries
10 strawberries
20 almonds
1 cup soy milk

Store in fridge, re-blend when you want more. Buy berries frozen, its easier.

I eliminated most dairy from my diet, milk is almost impossible to digest.....Get calcium from veggies.

Keep walking and sip water all day long. Add lemon juice to your water to build your immune system. Water is the most important thing.....

I would also eat granola dry to settle my stomach.....better than taking a chemical. If need be, I found Zantac to work the best for heartburn while on meds and it lasts 12 hours. Heartburn would be guaranteed upon eating fats......Fats are hard to deal with especially without a gall bladder.

My appetite really kicked into gear when I was around 6 months post. Meds really affect appetite, and it takes some time after weaning completely for everything to re-adjust back to normal....My body was screaming “feed me” and do it now and in large volume. We need to heal some things here. It was like I was 30 years old again.(Digestive dumpster) My digestive tract was saying “What are you doing?” We cant handle all of this, are you nuts? Sorry, but the brain is calling the shots here. Muscles are healing, the spine is healing, and they need the nutrients. Your just going to have to put up with it.

Ed

Irina
10-06-2013, 05:07 PM
Classic! I thought I would mention the jury duty thing....I guess my timing was perfect. I wouldn’t want to have to sit in court 3 months post, that would be a killer, especially on meds. Once you tell them about the surgery, the meds, and add an x-ray, they should let you off. Just mail in and wait. I hand delivered this information to the court and set the security alarms off and they wanded me. I lifted up my shirt and showed them the copy of my x-ray and all they could say was “wow”. I never had this happen at an airport.

Ed

Yeah, you can go to a court house with x-rays, but it was just easier for me to go to the doctor and have her sign off the form. After mailing it in, I received a letter from the court that I was excused and didn't have to show up.

jrnyc
10-06-2013, 10:02 PM
glad you are doing better...

i think a lot of the problems with medically supervised oxycontin
tx depends on the dose.
i am on one pill a day of 30 mg...i do not take more than that, even though my pain could use two pills a day, rather than one.
i cannot imagine being on 300 mg a day...i have alot of pain, but
am more afraid of oxy than i am of the pain...
i worked in drug and alcohol rehab nites and wkends, as a licensed
social worker...and i know about drugs and detox, etc...

i do not do jury duty, as there is no way i could sit in a chair for hours...
have never had a problem...just get a doctor's letter...it doesn't even have
to be very detailed...when a doctor states that a patient cannot serve, it
is sufficient for the court to accept.

hope you continue to feel better every day.

jess...and Sparky

susancook
10-07-2013, 02:48 AM
Hi there baroness! I am 6.5 months and everything just keeps getting easier! I would suggest using a cane if only to suggest to others to be careful. My surgeon is one of the MDs that uses a brace which has an advantage as people know to give you space. I like that as I have a paranoia of people bumping into me. The first time that I went to the supermarket without my brace and a kid ran into me with a cart lightly was traumatic. I sometimes carry a walking stick which signals that I might need some assistance. I am never above politely asking strangers for help.

I ran off the road on Gabapentin. I know that it can be very helpful for some. It put me to sleep!

Best of luck with your recovery and I am glad that you are doing so well. It seemed to me that recovery early on was by small leaps and then little steps. After that, the progress continues and the best part is that it can be surprising and can sneak up on you. Today, I sat down in a chair that I had not been in for 2 weeks and was pleasantly surprised when I got up out f the chair without pain. Totally awesome!

Keep one foot in front of the other and keep going forward.
Susan

leahdragonfly
10-07-2013, 08:51 AM
Hi there,

I have a similar fusion to yours (mine is T8-sacrum) and I was surprised to have the same type of rib pain you mention. It felt like my ribs and lower back had been beaten with a baseball bat, and this pain continued for a really long time, over a year definitely. It does gradually lessen in time. I still have a mild amount of lower rib tenderness. I get deep-tissue massages when I can, and the lower rib area, especially on the right, is still tender and very tight, and I am about 20 months out from my lumbar revision. It has improved tremendously though.

I know what you mean about the clueless PT's. It is staggering to me how a PT can not understand that fusion to the sacrum means you are not physically capable of doing a pelvic tilt. I had one ask me to do them too and he acted like I was trying to be difficult when I explained I couldn't. He also poo-poo'ed my bending restrictions and tried to insist I could do exercises that involved bending. I never went back to see him and was mad that I had wasted my time and money.

Glad to hear you are doing so well overall. 4 months is still very early in the big picture and you can look forward to a huge amount of improvement in the next 8 months and beyond. The stamina and energy definitely take a while to return.

Doreen1
10-07-2013, 06:30 PM
So happy to hear your updates! I found the Oxy drugs to be a necessary evil.

Take care! :)

golfnut
10-07-2013, 09:04 PM
Glad you are doing well. Just be careful and don't try to do too much too soon. I know it's hard to be patient but you don't want to jeopardize the fusion. I had severe tailbone and rib pain for a year or more. I am happy to report that neither are an issue now. I don't remember when the pain subsided exactly but it is gone!

Confusedmom
10-12-2013, 11:44 PM
Glad to hear you are doing well!! The shortness of breath can happen as part of withdrawal when you are weaning medications. However, if it becomes painful or does not get better, you should get it checked. A couple of people on the forum have had fluid around the lungs after surgery that caused shortness of breath. You're probably fine, but I just thought you should be aware.

Also, just my opinion, but I don't think you should worry about socks yet. I used the sock device for probably a year.

Glad you are out and about! Going to a concert & sitting on a bar stool are big steps!!

I am 18-months post-op and also 41. We just got a kitten, and I have been sitting on the floor and playing with her. Never thought I would do that again!! Also, I just bought 10 carving-size pumpkins, lifted them out of a bin, loaded them into the car, then placed them around our neighborhood signs. That was Friday day. That night I went camping with my kids and layed on an air mattress in a tent for about an hour. Would have slept through, but my seven-year-old got scare and wanted me to take her home.

All I'm saying is, it does get better!!

:-),
Evelyn

Nancy Joy
10-15-2013, 07:58 PM
I just have to add my 2 bits about the socks. I was bound and determined to get panty hose on once. Now THAT was a trip! I did it but could have killed myself in the process. That has become a goal to never be seen again!!!! Thank goodness for knee highs and thigh highs aren't too bad if you get a really good top on them. Kind of glad the trend has gone to forgetting them altogether! Keep up the good work and take it slow..

loves to skate
10-17-2013, 08:14 PM
I am fused to the sacrum and just had total hip surgery in July, so my range of motion was extremely limited. We had a wedding to go to three weeks ago and I was able to get panty hose on easily by using my sock aid. I was prepared to go without, but was surprised how easy it went.

the_baroness
10-18-2013, 08:38 AM
I wasn't able to get panty hose on without tearing them BEFORE my surgery! I generally wear tights with dresses, but I have not yet tested out my ability to put them on. However, I return to work on Nov. 4, so I'm very soon going to get a chance. I think my trusty sock tool should work fine to put them. My problem is getting socks OFF! However, as the days go by and I continue PT, I've gotten more flexible, and I can usually reach my foot behind me to pull a sock off, or use the big toe method.

My shortness of breath continues to plague me. I'm coming around to the opinion that it's the Gabapentin withdrawal. But every day I practice taking deep breaths and expanding my rib cage. So I hope that's helping. My physical therapist had me do an exercise where I sat on the big ball, and raised my arms up and down while deep breathing. I really think that one will help. I sure hope it's not fluid in the lungs, because I read on the forum about people who had to go back to the hospital for that, and the fix sounds very painful. At my 2nd post op visit I told Dr. Errico about it, and he seemed unconcerned. I trust him, so I'm going to try to be unconcerned also, even though I find it incredibly annoying.

Thank you, everyone, for all your great messages. They are very inspiring. Evelyn, I'm so happy to hear that you were able to sit on the floor with the kitten! I really aspire to sitting on the floor again someday! Just to do some gardening, or play with the cats or whatever. I can kneel on the floor, per Dr. Errico's advice, and even sit back on my heals, but it takes a lot out of me, so I try not to do it very often.

Golfnut and Leahdragonfly, it's also nice to know that the rib pain is normal. I guess it comes from them having moved my torso a couple inches to the left! And Susan, thank you for saying everything keeps getting easier. When days go by and I see no improvement, I start to get discouraged. I have to learn to practice the art of patience.

And don't get me started and that horrible Oxycontin! And the Gabapentin. I have already posted elsewhere about it so I will refrain. But I don't feel like my drug withdrawals have been more traumatic than the surgery itself. The Gabapentin did definitely help with the pain, and the needles in my feet have returned without it, but now that I'm off my vision has improved, so that's good. And people tell me I look less "drugged." So I guess that's good too!

Well, onward. PT again today. I think my therapist actually went home later and read up on my surgery, and called a friend of hers from college who had a scoliosis fusion surgery, so she is more understanding now about my limitations. No, my pelvis will never tilt again! And she eliminated the side stepping exercise where I was supposed to keep my torso straight up and down because she "didn't like how I looked while I was doing it." So I guess she has realized that I really am bolted into place down there.

Ok, ok. I will start taking my cane into the city when I go. Boo. I hate the cane. Talk about a necessary evil.

Thank you everyone for your inspiration! You all keep me going each and every day!