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Old 11-12-2006, 05:44 PM   #1
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Suzy-Q Report- Some Good, Some ...Not So Good

Hello To All-
I have been posting less often for some time but I come to check up on you every day. Even as I sit and read I benefit from the knowledge, experience (hard won), and wisdom of you good people. Many thanks.
My roller coaster ride continues. I have been busy of late with my new cardiologist. Since early September my heart has gone nuts with crazy PVCs. They have become constant and are a real drag on my energy levels. Tomorrow I will be having my first nuclear stress test (medically induced to protect my back). The cause for this sudden onset of arrhythmeia is as yet undetermined. So far the meds given have not done anything ....good. My bllod pressure has tanked a few times and that is decidedly unhealthy for someone on a cane as I was then. But I am here to discuss my back.
Revision lumar fusion done in June for L4-5 spondy. I no longer limp! That is a definite and seemingly permanent improvement. I feel more stabile in the lumbar area. I swim 3-4 days a week, walk at least 2 hours a day, and I do regular PT everyday as well. I am tolerating sitting more and more. And for 3 weeks I was almost pain free. But that is gone -my pain levels are on the rise again. About 10 days ago, I began to have a return of the left bum sciatic pain that was so very intense pre-surgery. Now, my entire pelvic area is very sore and any attempt to bend causes shooting pains down to the outsides of my knees (L5-S1?). My sleep is disturbed with positional pain. Driving has been a real bear of a problem, too.
I had been completely off of Oxy Cr and I have gotten through these last 10 days with no more than 3 Vicodan. But I am very miserable and I won't keep going like this for very long. Part of the problem is likely our attempt to reduce my dose of Neurontin. We have put it back up to 2700 mg/day and the worst pain is letting up.
So, all in all, I am happy with the progress I have made. I stand straighter, walk taller, and I don't limp. I can swim, really swim for 50 minutes and I love that. But my back still will not work for me and I may not even think about bending or else! I had been walking a very small dog at the kennel where I volunteer. Wee Nellie is not more than 15 pounds! But the littlest bit of pulling is murder so I had to give the lead back to Kelly. That is a heart-break for me though I know I must bide my time.
At this point I would not venture a guess as to the status of my fusion. Some days I am sure I must be fusing and other days I am equally convinced that I am not. At my last surgeon visit I did ask what would be the next option if I failed to fuse: total anterior with plates. I don't even have an opinion on that yet.
Well, I should get off this back and in to bed. I do hope you are well. Thank you all for being here. Suzy-Q

 
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Old 11-13-2006, 01:10 PM   #2
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webdude HB User
Re: Suzy-Q Report- Some Good, Some ...Not So Good

Glad to hear that you limp is gone! Back pain goes up and down, at least for me, on the way to recovery... So your pain being back may seem discouraging, but just hang in there.. Keep swimming and moving, and doing your PT... you will come back and then some...... It has taken me almost a year and I still have my good days and bad days, but overall, am doing much better...

God Bless,

Maurizio

 
Old 11-13-2006, 04:43 PM   #3
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Re: Suzy-Q Report- Some Good, Some ...Not So Good

Hi Suzy,
I would guess that you are fusing because you feel more stable, stand and sit straighter. Those were all things that I noticed. I was fusing at 12 weeks post op with bmp and my spacers were bone dowels. I also noticed that when I would sneeze or cough, the grinding was gone. When I would turn in bed, everything started turning as one instead of following seconds later. I have hope for you.
Sheri
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L4-S1 TLIF FEB 06
TRYING TO MAKE IT THROUGH RECOVERY

 
Old 11-13-2006, 06:07 PM   #4
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Re: Suzy-Q Report- Some Good, Some ...Not So Good

Hello Maurizio, Hi Sheri-
Thanks for the encouraging words. I am trying to become a bit more patient but it is hard. I still have this head set that I am supposed to be fixed - completely. I know it takes a long time and I am beginning to accept that my outcome may not be a 100 % return to the previous me. Likely not, in fact. Also, I know that my first fusion failure has cast its shadow over this recovery. I can't let myself get too excited because I just know any good days won't last.... Now that is really terrible but it is where I am at AND, so far, it has proved correct. But I do need to spend more time focusing on a brighter future.

Sheri- I have never had a grinding noise when I sneeze but I do have terrible pain. Did you? I still have a rough time whenever I try to move in bed. To try to scout my bum over on the mattress about kills me. If I bear down and really tighten my abdominals first, it helps some. Oh well, time will help maybe.

Thanks again for chatting - Suzy-Q

 
Old 11-13-2006, 07:37 PM   #5
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Re: Suzy-Q Report- Some Good, Some ...Not So Good

Hello again,
I never had a grinding noise just grinding pain that would almost drop me when I sneezed or coughed. I do still have a tough time scooting accross the bed and I am fused. I have followed you since you arrived here and am very hopeful for you. If it is really true that Ibuprofen halts bone growth like they say. I think that is what played a huge factor in your case.

I read here everday and watch for your post and I know that your not 100% but I really think that I hear fusion in your post. I would think that your recovery would be almost twice as long as the rest of us because you had a revision. Everything was still in the healing process and then you had extensive surgery again.

I am no expert by any means, just a fellow spondy and it seems that when someone doesnt fuse they have progressive problems from shortly after surgery. Seems that yours are the typical wax and wane. I am still hopeful for you. take Care
Sheri
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L4-S1 TLIF FEB 06
TRYING TO MAKE IT THROUGH RECOVERY

 
Old 11-13-2006, 08:12 PM   #6
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BlueAtlas HB UserBlueAtlas HB UserBlueAtlas HB UserBlueAtlas HB UserBlueAtlas HB UserBlueAtlas HB UserBlueAtlas HB User
Re: Suzy-Q Report- Some Good, Some ...Not So Good

Hey Suzy and Sheri,
I got satin sheets and slippery PJ's to help me move more easily in bed. I ended up leaving on only the bottom sheet and putting the regular cotton top sheet back on because the satin top sheet slipped out of being tucked in too easily, and I can't lift the bottom of the mattress to put it back. The satin bottom sheet and PJ's have made a HUGE difference. It's so easy to slide and turn.

Hope your pain gets to a more tolerable level soon!

Take care,
Emily

 
Old 11-13-2006, 08:36 PM   #7
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Re: Suzy-Q Report- Some Good, Some ...Not So Good

Hey Suzy. I am wondering how your stress test went and if they have determined anything. My boyfriend suffers from A-fib and stress is a major inducer for his heart going out of rythm. He is one of the lucky ones that can feel it when it happens. They have no idea why people have this, and otherwise.. he's extremely healthy. I hope they get a handle on that for you. That is a complication you do not need.

I think it's wonderful that you can actually swim! Wow.. I would love to be able to do that. I hope I can get there at some point. I do have a normal gate and have for some time now. My back felt really stiff and strong until this last flare up, then not so secure. They say the hardware is intact, but the CT scan did say lucency irregularities at the facet at l4/l5. Doc said he had no idea what the radiologist meant by that, but that the CT Scan looked great.. a good and solid fusion. So time will only tell.

Is your mattress too firm perhaps? We bought an insanly expensive one and besides manufactured defects, the thing is too hard for us both. So we keep adding toppers to it. (We are beginning to feel like the "princess and the pea"! lol) I dont normally have too much problem in bed back pain wise. It still wakes me during the night, but I am so used to that, that I just ever so slowly change positions and nod back off. But I do have to be careful with leg positions more than anything. With this flare up, I seem to be prone to muscle spasms in my hamstring, mainly left side and if I move my legs too fast.. GRIP!!. And it's bad when it happens. I drink gobs of water daily, am taking calcium magnesium, try and to get the protein and postassium in. The steroids made this issue worse, but those are done and gone with.. so hopefully will get that back in control. It does help to tummy tuck when turning. Helps to keep things taut.

I too have increased pain driving my long distance lately. It's not too bad but I am happy to get out of the car after 1 hr 15 minute min drive one way. You still have pain when you sneeze? I have managed to control that pretty well and a light cough is okay also. But I do look a bit odd when I sneeze, cuz I get myself into the darnedest position to prepare for it. Hell let's be honest.. I dont look odd, I look like a tard! But it keeps my back happy most of the time.

You keep the faith that you are fusing. Many second goes at fusion.. work very well. You are such a bright light..and it's very apparent in your sweet disposition you always share on here!

Please keep me posted on the heart issues. All the best and a big hug to you! Tammy
__________________
"believe in the beauty of your dreams"- E. Roosevelt

L5/S1 bulging @ 18, now 46; still there (but no pain)
Fusion at L4/L5 Apr -2006
Solidly Fused Nov-2006
A Success, but still improving!

Last edited by Justoneofus; 11-13-2006 at 08:39 PM.

 
Old 11-14-2006, 05:55 AM   #8
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Re: Suzy-Q Report- Some Good, Some ...Not So Good

Hey Suzy.. I know it takes time, but positive attitude is very important to your recovery... It seems to be working for me, although at times, I too feel that I am being too optimistic... But besides hard work and commitment, I also tried this.. Mind over body (nope, Im not crazy.. yet :-)

It started with a herniated T11-T12 which hurt like crazy for almost a year, but thank God, is doing great, but my lower back has been hurting ever since too. My Neurosurgeon told me that I did not have anything major with my lumbar other than some minor DDD and said that most of my pain was "in my head". So he asked me to read a book by Dr. Sarno called TMS.... I also read a book by Sensei Rostocki about phsycological pain and after reading that book, my lower pain almost STOPPED.. I am still afraid, and a bit skeptical that it could just be a coincident and that it may return eventually, but all that I know is that I feel better than ever all of a sudden after reading the book and applying its concepts!!

So, positive attitude and mind over body are just ONE more tool in your arsenal to get yourself back to normal!

Maurizio

 
Old 11-14-2006, 06:12 PM   #9
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Re: Suzy-Q Report- Some Good, Some ...Not So Good

A Good evening To You All - and thanks for all of the very kind words and helpful advice.

Let's see - my medically -induced nuclear stress test was a hoot. There I was with the over 70 crowd and me about the most beat up of all at 44! They all decided they'd rather keep their own problems than have mine. LOL! We laughed and joked and emitted radiation together for about 4 hours . I hung around for the extra half-hour and we all made it through and none of us had our tests stopped and got rolled into the OR for by-pass surgery. I count that a success and it shows you how high I've raised the flippin bar.

But no results yet. That's good. They told me if I didn't hear from them in 48 hours it was a good sign. But today brings a new ... issue. I am having mild vertigo ... again. Some 3 weeks ago I almost broke my neck when I got up during the night. I crashed into the wall but caught myself before going down. That began a 3 day episode of vertigo that gradually let up with time. I was backed off of my BP med and the assumption was that my BP had tanked but by the time I saw my GP my BP was normal again. But today I am unsteady though not nearly as bad as before. Low BP again? Inner ear infection? Very odd and not something I have ever had before. Any ideas?

I do think ya'll are right: This second recovery of mine has been a doozey and my patience is short just when it needs to be long. I do have much to be happy about just because I am not limping anymore. And the fact that I can walk for hours with the dogs and SWIM is beyond wonderful. And Maurizio, I will look for those books and also I have just begun a nightly 10- minute visualization technique to try to focus positive energy on my healing. It seems that every week brings me some weird complication so I have become very focused on these negatives. It ain't healthy and I know it. Like with this vertigo, I am loathe to seek out my GP or anyone else. I want to stay away from all things medical and spend some time refocusing. I begin to think that medical problems beget medical problems! Something like that anyway.

Emily - I can't think why I didn't take your excellent advice about the satin months ago! I will do that ASAP. Tammy - Princess and the Pea! That's great, I loved the play. I know just what you mean about leg postion being important in bed. I get the worst sort of electrical stabs or jolts of pain that wake me up and always because my legs are off-kilter. If I roll onto my side, which I do half-asleep and knowing it is a mistake, I will be woken in short order with leg pain. My bed might be too hard BUT too much softness makes my lumbar throb with pain so I think this is the best I can do. I am so glad I was wrong, Sheri, and you don't have grinding NOISE when you sneeze. Just thinking about that made my stomach roll over! Grinding pain - now that is perfectly normal, eh? Nothing wrong with grinding pain, is there?

Well friends, I need to wrap this up though I hate to cuz I enjoy the chance to chat with my fellow soldiers at-arms. This back business is not for the faint of heart, is it? When I think of what I expected from my first surgery and where this road has led me, I have to shake my head. But the road led me here and so life's essential complexety is revealed again and again. I am thinking of you all and hoping I may be a help to you in turn - Suzy-Q

 
Old 11-22-2006, 10:40 AM   #10
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webdude HB User
Re: Suzy-Q Report- Some Good, Some ...Not So Good

SUzy.. I totally agree that you need to focus on some good things and not just your back... I have been feeling pretty good lately thanks to God, and I know that positive thinking has had alot to do with it..

Have a great Thanksgiving..

Maurizio

 
Old 11-22-2006, 06:31 PM   #11
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Re: Suzy-Q Report- Some Good, Some ...Not So Good

[QUOTE=Suzy-Q]A. But today brings a new ... issue. I am having mild vertigo ... again. Some 3 weeks ago I almost broke my neck when I got up during the night. I crashed into the wall but caught myself before going down. That began a 3 day episode of vertigo that gradually let up with time. I was backed off of my BP med and the assumption was that my BP had tanked but by the time I saw my GP my BP was normal again. But today I am unsteady though not nearly as bad as before. Low BP again? Inner ear infection? Very odd and not something I have ever had before. Any ideas?

I Suzy-Q[/QUOTE]


I read somewhere a while ago that you can get this after a fall. It said something about dislodging otoliths or something like that. The type of vertigo is called BVP but I don't know what it stands for.

 
Old 11-22-2006, 06:50 PM   #12
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Re: Suzy-Q Report- Some Good, Some ...Not So Good

Hey Bobi-
You're right on the money. I have had this vertigo for more than a week now. it is easing up slowly. I was finally seen by my GP who thinks it may be just what you said - BPV Benign Positional Vertigo. The most popular theory is that small crystals or rocks (otoliths) in some part of the inner ear get dislodged and sit on the tiny hairs in there. When those hairs move, our sense of position ...moves. Funny thing is the treatment is a type of physical therapy! I'm waiting on a referral now. I'll be in three PT treatments once it goes through!!
The docs don't think any of my meds are the cause. I am unsure. I was put on Cymbalta (about 8 weeks ago) for nerve pain, joint aches, and for help dealing with this whole recovery thing. I have done a lot of web research and found several forums of users who report vertigo as a frequent side-effect. Docs pooh-pooh it but I am not so sure. My experience with health forums speaks to the validity of patient reporting. My first vertigo episode happened within 7 days of my dose increasing to 60 mg. Can't explain why I got better for a month. Anyway, I am tapering slowly (the withdrawal off of this med is brutal, I'm told) off of Cymbalta. I do not think I am in drastic need of an anti-deppressant right now. Plus, I very much want to reduce my meds to a bare minimum. I have had nothing but reactions, side effects, rare adverse reactions, and so on for a year now. I've had enough. I want to reduce the variables.
Vertigo! What fun. But I have great news to report on my stress test - all clear. That leaves me with Idopathic Premature Ventricular Complex. Also a lot of fun! But my back has been pretty good the last two days. Go figure.
Hi Maurizio - I'm keeping the ole chin up. Here's to a grand holiday weekend for us all. Gobble, Gobble - Suzy-Q

 
Old 11-24-2006, 08:11 PM   #13
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Re: Suzy-Q Report- Some Good, Some ...Not So Good

Hi Suzy,

Glad to hear that that your stress test came back clear! Also, glad that you've had a couple of good days with the back. You certainly deserve it and many more of them.

Always a pleasure to read your posts and to know that your doing ok. How's work going for you?

Take care of yourself,
Bernie

 
Old 11-25-2006, 07:19 PM   #14
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Suzy-Q HB User
Re: Suzy-Q Report- Some Good, Some ...Not So Good

Hey Bernie -
Great to hear from you! I follow your posts too so I know the road has been a bit rocky for you as well. Work? Pretty good. I am still on half days andf that has been a very good thing. It is hard to really get projects off the ground at this rate. However, I have been able to deal with all these crazy health issues so much better. Also I have been able to swim and do PT only because of the half-days. I've said it a hundred times but I am so very lucky to work for the state and to have such great benefits.
I am having a pretty good holiday weekend. The vertigo is gone and the heart has been good. My back is ...OK. Not as good as yesterday but withing the norm for me. How about you Bernie?

 
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