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I would like some HONEST feedback

Started by maggs on 05/09/2010 5:30pm

I am schedule for a Posterior Spinal fusion with instrumentation and decompression laminotomy on May 17. I know this is going to hurt but I would like someone to honestly share with me how much it will hurt and for how long. I do better if I know the truth. Doc tells me that I will be in the hospital for 4-5 days and that I will hate him the first couple of those days. Sound a little daunting at this point. I am in a lot of pain now and hope this surgery will fix things.

Maggs

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Maggs, I won't lie to you, it was NO walk in the park!!!! I had a posterior fusion surgery with instrumentation done along with several other procedures at l5/s1 on feb 22nd of this year and the first FOUR weeks were pure hell!!!! The time spent in the hopsital (3 days) was really bad, thankfully I was so doped up on meds to be pretty loopy!! It hurt so bad to be log rolled in bed (2 nurses had to do it for me) I thought my hrdware was going to break. Then to get up to walk the first time the day after my surgery, WOW!!!!! It hurt my back and legs so bad, I thought I was going to puke, got real nauseous, my legs shook, was hrrible but I knew walking was the best thing. My surgery was 6 hours long, have a 5-6 inch incision...do u know if ur surgery is to be "invasive" or "open back"? Mine was open back and more invasive. It hurt to move for the first several weeks. I still have to wear my back brace but in the beginning, my incision would burn where it rubbed against my brace. This was 3 weeks post op and beyond. Are you going to have to wear a back brace for the first 3 months like I am? I couldn't bathe the first 3 1/2 weeks, had to take showers which was painful. I would suggest getting a shower chair seat thing, wish I would have, it would have helped!! Also, invest in a grabber tool thingy if ur not released with one. It save u from bending to pick things up. Plan on having someone there with u for at leastthe first 4 weeks. I wish u the best and if u have anymore questions, don't hesitate to ask. Keep me posted on how u do after surgery!!

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Hi Maggs, The average time in hospital is 4 - 5 days depending on how the wound heals. Yes you are definately going to hate your doctor, I was fortunate to have had an epidural for the first 4 days following my surgery, however whne it wore off there was a lot of pain. The pain in my legs from the accident were definately gone, but recovery time is long and yes very painful. You will soon learn what your limits are and just how far you can go. The excercises that the physio gives you definately help, so do them as painful as it is. Dont expect to be pain free for at least a year post surgery, no matter what your doctor says, I have done a lot of research due to my prolonged pain and I was astounded to find out that I am not alone, there are hundreds if not thousands of people out there suffering from post operative pain. Some already in severe stages of depression. However there is a light at the end of the tunnel and you will eventually be very happy that you had the surgery. I had mine in November 2009 and am still in the early days of recovery.

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Hi Maggs, The average time in hospital is 4 - 5 days depending on how the wound heals. Yes you are definately going to hate your doctor, I was fortunate to have had an epidural for the first 4 days following my surgery, however whne it wore off there was a lot of pain. The pain in my legs from the accident were definately gone, but recovery time is long and yes very painful. You will soon learn what your limits are and just how far you can go. The excercises that the physio gives you definately help, so do them as painful as it is. Dont expect to be pain free for at least a year post surgery, no matter what your doctor says, I have done a lot of research due to my prolonged pain and I was astounded to find out that I am not alone, there are hundreds if not thousands of people out there suffering from post operative pain. Some already in severe stages of depression. However there is a light at the end of the tunnel and you will eventually be very happy that you had the surgery. I had mine in November 2009 and am still in the early days of recovery.

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Hi Maggs,
I had a post-anterior lumbar fusion (L5, S1) back in August of 2004. The comments about your stay in the hospital are correct, your mobility depends on each individual person. I was one month shy of my 30 birthday and thought the recovery period was not bad. I felt good for almost three years after my surgery which is about the time your healing and tissues start to close around the screws and plates. I was not told that there would be a possibility that the scar tissue may grow near or on your nerves which cause nerve damage and the tingling and numbness and sciatic pain that I previously had before surgery to come back. Unfortunately I did not have a case because it was 3 years after surgery. Over 2 years ago I was diagnosed with Peripheral neuropathy, I am currently taking 6 medications for pain, depression/anxiety.
I am not discouraging you but hope this information will provide you with questions to ask your surgeon. I wish my much luck.

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Thank you all for telling your stories. I am so sorry "mamadks" that things haven' t turned out more positive for you. I have heard your type of story before and life can be very challenging living with pain. The thing is I am already depressed from the pain I have now. my symptoms have been going on for at least a year. I have spondylolesthesis, an almost non existent disk L5, S1, a complete fracture of the right petacle and stenosis on the right nerve root. Sometimes I feel like someone has beaten my legs and bottom of my feet with a broom. I can not walk any major distance, can't do any of the hobbies that I enjoy and feel like I just exist, waiting day to day for something to change. I am trying not to jump into surgery but my doc says that surgery is the only way to relieve my leg pain. So, I am going forward with the surgery and hope for a positive outcome.

maggs

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HI MAGGS
ON 4/6/10 I HAD LAMINECTOMIES ON L2-5 AND FUSION ON L3-4 WITH BONE CELLS (MY OWN) TAKEN FROM MY HIP. FIRST THING TO REMEMBER IS EVERYONE IS DIFFERENT. WHEN I WOKE UP IN RECOVERY, 9 HOURS AFTER I WENT UNDER, THE PAIN WAS UNBEARABLE. BUT, i HAVE BEEN ON PERCOCETS FOR 10 YEARS. SO I THINK THAT MIGHT BE THE REASON FOR THE FOLLOWING. IT TOOK 2 DAYS TO GET MY PAIN UNDER CONTROL. 4 DAYS IN THE HOSPITAL. FIRST TIME I SAW MY DOCTOR THERE I SAID "IFYOU COME ANY CLOSER I AM GOING TO RIP YOUR EYES OUT" HE STAYED BY THE DOOR. THEN 8 DAYS IN REHAB, WALKER, THEN THE CANE. MAKE SURE ENOUGH MEDS ARE COMING YOUR WAY. DO NOT BE A TROUPER. THIS IS SERIOUS STUFF. LIKE YOU MY PAIN WAS BAD B4 THE OPERATION, I COULD ONLY WALK A FEW FEET B4 BACK/LEG PAIN AND WEAKNESS SET IN. I HAD SEVERE SPINAL STENOSIS, SOUNDS LIKE THE SAME FOR YOU. IT HAS BEEN 5 WEEKS NOW. MEDS GONE, LEG AND MOST BACK PAIN GONE. DO IT.

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Thank You Candyk. You bring up a good point. I have been on Vicodine for 2 years now. I am going to make sure to tell my surgeon that I will need something strong to control pain in the beginning. Just to make matters worse, I am starting to get panic attacks because of this whole situation. It is time to take the bill by the horns and get this baby fixed.

Maggs

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Maggs, I too suffer from the same ailment. I have bilateral pars fractures which caused spondylolisthesis which resulted n bilateral foraminal stenosis that ended in significant bilateral l5/s1 root nerve compression. I know well the nerve pain in the legs u speak of for it far surpasses any back pain I experienced. Its common for ppl with spondylolisthesis to have foraminal stenosis and rootnerve compression when it goes sypmtommatic!!! Your suergery is comming up next week...just wanted to know, ur in my thoughts hun:) *hugs*

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Thanks squirt! You are good people, as my grandfather use to say. I will post to this site when I get home after surgery. I hope I don't swear too much...lol

Maggs

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Mags,

First of all good luck with your surgery! I just wanted to say that everyone is really different so it's hard to tell you how you are going to feel after surgery. The question that was asked which was a good one is are you having the minimally invasive procedure?

I had my posterior spinal fusion with insturmentation and the decopression laminotomy done this past November. However, I had the minimally invasive procedure, and I heard it is a quicker healing time. I was actually released from the hospital the following day, and I had someone stay with me for about 4 days. After that I was pretty independent but just had someone come over and help with cleaning that I wasn't allowed to do.

It hurt really bad to sneeze, change positions in bed, and getting dress was a chore. Also walking was not that much fun in the beginning, but each time you push yourself the easier it got. They had me up and walking as soon as I woke up and got in my room. I was also on vicodin before the surgery, but they put me on percocets for after. They made me really nauseous and I was not too thrilled to be on them..but at least they took the edge off the pain.

Personally the worst pain for me was one of my incisions got infected and came open. That was horrible, and I had trouble sitting down because of it.

The best thing also about the surgery is that my legs felt awesome! My nerves were also being pinched, and I was having trouble walking. After the surgery my legs did not throb anymore, and I could walk as much as I wanted.

Hope this helps!

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I have the same condition Spondylolysis, my body is immuned to percs & hydrocodine and now am on Fentanyl 50mg and countless others meds.
Hal123 that is a new procedure that may work out better than the one I had over 5 years ago.
I wish all of you much success & luck in your recovery process and listen to your doctor DON'T OVERDUE URSELF ur body needs the recovery time. Also try to have someone with you for at least 7 days after ur surgery, minimize using stairs for about a week or so after surgery. I also had a PT come to my home and help me walk around inside and outside.
For your depression I would look for meditation suggestions such as breathing.

Below is one technique that helps my body to relax.
Sit/lay somewhere you feel relaxed.
say out loud 5 things that u hear
say out loud 5 things that u see
say out loud 5 things that u feel (for example ur leg touching the bedsheets, my head on my pillow)
Then continue the above but work your way down, 4, 3, 2 & 1, this has helped in times that I have been depressed.

Mamadks

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Thank You hal123 and again to mamadks. I like that stress release exercise mama. I will use that one with and without surgery! Unfortunately, I am having the invasive type of surgery. I asked my surgeon and he said he has to repair too many things to use the mim-invasive procedure. For example they have to widen the neuroforamen and somehow mend by fractured peticle if possible plus doing the fusion and decompression. I am really learning a great deal from all your communication. I am already feeling much more prepared for Monday. Please make sure to check back about a week after (May 24) and I will let you all know how things are going and maybe ask for your advice again.

Maggs

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Hi Maggs,

I just underwent surgery three weeks ago today for l4-l5 and l5-s1 spinal fusion with instrumentation. I think your recovery time will depend on your fitness level prior to surgery and also your use of pain meds prior to surgery. I maintained a level of fitness, although, I had to increasingly modify my exercise regimen over time to where the only exercise I could do was walk daily. I tried PT and then steroid shots into my spine to aleve the pain. That worked for about three months and then the pain came back. Being on the cusp of 50, I decided to have the surgery and scheduled it for May 6th. on April 11th, I was puttering about the house when all of a sudden something did not feel right with my back. I laid down and that was it.. I was in excruciating pain and needed pain pills and anything else I could get just to relax enough to fall asleep for a few minutes. Two days later my right thigh went numb. Although it was numb, it also hurt unbelievably. The next day I went to see my surgeon and we moved the surgery up to April 22nd. I was on percocets and muscle relaxers managing the pain but bedridden, Finally the day came for the surgery. Although I was scared to death of going "under the knife" I figured it could not be worse than the pain I was currently in. When I first awoke after the surgery, I was still pretty drugged and just had this lump under my back, which was mostly bandages. The morning of the second day, I was up and walking with a walker and going to the bathroom. I was on a morphine pump but had the comment that I really wasn't using that much am I in pain? Well, I have to tell you, the pain from the surgery was nothing compared to the pain i was in prior to the surgery. On the third day, I was given a less bulky bandage, released to go home and given a prescription for a 100 oxycodone. Luckily, I had my husband and son available to take care of me because you really need assistance for the first week or until you are off the pain pills.. My husband had to help me shower and change the bandage daily. My son was my gopher - reach high and low and just meet my needs.
i had not been able to sit since my back first went out. I am now able to sit for 30 minutes at a time. I was off the oxycodone a week after i was given them. Getting off of the drugs actually made me feel better physically than when I was taking them. I just needed a couple of Tylenol at night and I was fine. Each day the incision pain is less and less and I find I can do more than the day before. Now at 3 weeks, the staples are out, the bandages are gone, I am showering by myself and driving a car.

Again, I do think your recovery and pain tolerance will depend on your fitness prior to surgery and how you manage pain with medication.

My only misgiving is that my right thigh is still sort of numb. The pain is not as bad, but after three weeks it is still numb. They keep telling me, that the nerves have not figured out they don't hurt and it will calm down. I hope they are right. I will keep you posted on that one.

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Maggs, this is the exact procedures I had step by step done. 1.) Application of cranial tongs for intraoperative positioning. I never knew about this, and when I awoke, I had scabs behind my ears, it hurt to put my glasses on, and I had this massive headache. I reaearched this and found out why. 2.) Transforaminal lumbar interbody fusion at l5/s1 with application of a peek interbody cage, inFUSE and local bone autograft. 3.) Posterior spinal internal fixation at l5/s1. 4.) Posterior decompression of neural elements for spondylolisthesis with laminectomy, complete removal of abnormal pars defects and foraminotomies at l5/s1. 5.) Posterior spinal fusion l5/s1 with inFUSE, locally harvested bone autograft and morselized allograft. I hope this helps give u an example of what ur surgery may entail. I too had to have "open back" surgery, probably becuz of what u said, so much being done. However, I went into my surgery believing I was going to have like 4 small, 1 inch incisions and awoke with one 6 inch incision. I'm glad ur properly informed!!!! It can take awhile longer to recover from invasive surgery like this. I hope ur not unbearable pain afterward, although u more than likely will be!! I'll be thinking of you a lot that day hun:) *hugs*

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Thanks Bonnie and Squirt. I have had this back problem for well over a year now so I have not been able to exercise, not even walk. So, I am not very fit but my muscles have always seemed to respond quickly to exercise in the past. I hope they will come around quickly for this surgery as well. As a matter of fact, fittness is one of my goals after this surgery is complete. I need to lose lots of weight because the disk above the fusion already has arthritis and the less weight the better. Eight years ago I had a cervical fusion C3-7. I felt awesome the minute I woke from surgery and have never had a problem since. I hope this lumbar surgery will follow the same pattern. I am to young to settle on doing nothing for the rest of my life (53)

Maggs

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I wish you the best of luck and a speedy recovery. You just have to think long term, there is a light at the end of the tunnel.

I focused on getting through the first two weeks. I was told after that, everything seems to feel better daily, they were so right.

You are right, you are too young to not do this for yourself!

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Oh my goodness! Everyone on here seems a bit negative! I am currently 11 weeks post op for an anterior lumbar fusion at L5/S1.

The day of the op, I was up and walking on my own to the loo! (after getting the nurses to disconnect my morphiene pump). I was allowed to do that because by the time my consultant came to see me the evening of the op I was overwelhmed by the fact I no longer had leg pain. I hadnt been able to walk properly for about 6 months because of the pain.

Pre op I was on 5 different drugs, taking about 20 pills a day. Now I am only on over the counter painkillers during the day and dhydrocodiene for night time.

I am now back at work on a phased return and have been for 3 weeks. Its not easy but its all relative. The amount of pain I was in before was hideous!! I would quite happily have let someone chop my leg off without blinking!

Apart from the fact that I am no longer in constant hideous pain, I also have my brain back! As someone who would happily describe themselves as a bookworm, I couldnt concentrate and was unabe to read for 6 months or so...and I couldnt concentrate at work. I had to stop driving cos I wasnt safe!

I started back at pilates at 9 weeks post op and have been told by my physio today that I can start gentle excercise...only a stairmaster but its a start! Baby steps and all that!

For me, not having the op wasnt an option because I could barely function once the last epidural had worn off..work wasnt really happening and I had no life.

I'm NOT saying its plain sailing and it does hurt but at least your on the way to recovery!

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Tjs01 I'm very glad ur surgery was such an immediate success!!! Its great to hear stories like yours to help others like myself to remain positive!! *hugs*

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I think that at the very lease, this discussion shows that their are a lot of different experiences out there. Thank you all for your honesty...tick, tick,tick...2 days 17 hours until the nerve pain is gone.

Maggs

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I really do hope it goes well, and you'll have differant pain, but they give you the proper good drugs in hospital :-)

Its not something they do lightly, and they are doing it to alleviate your current levels of pain..Lets be honest, I doubt anyone here really appreciated the term chronic back pain until they suffered it. The way I viewed the surgery is that they would be "fixing" me.

Someone mentioned scars earlier, I have 5 now, and I dont really care, cos I am "fixed", ergo, not in the levels of pain I was!

I actually think the most hideous part of the whole thing was the discogram...that still makes me shudder..I would rather have the surgery than have one of them again!!

This thread got me thinking this afternoon, about how crap my life had become because of the aforementioned pain and I would do it all again in a heartbeat..remember try and keep a positive mental attitude and all that..it may sound twee but surely its best to try and think positively about it because ultimately the only person that will suffer if you dont, is you!

Oh and make sure you have a good physio!

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Hello Maggs , just a question for you and ALL members that have responded to your post. My doctor and I are at the point of seriously considering/doing surgery (l4/5 disk replacement and l5/s1 fusion/replacement and I am just wanting to know if this was an option for ALL of you?

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No, I was never approached with the disk replacement option. Quiet frankly, I didn't know there was a such thing. Sounds like a good idea though.
I too, have been thinking how long it has been since I could remember not having pain. I have avoided invites to do things and have found myself having become very reclusive. Well, hopefully things are about to change. I want my life back so here goes...

Maggs

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HI again, yes it is out there but very new worth a bit of a read. From a post I found on this site about an American Dr. check out this web sitewww.centerforspinecare.com and read it from !!!!start to finish!!!! very very informative for both fusion and disk replacement and he is in the top 50 spinal specialists in America. I was ready to just dive in with both feet a week ago but have MANY questions to ask my Dr. now after reading through his web site.I live in Australia and there are only a handful of people who have had it done and we still are using older technology so it is hard to find info here because of this. Another site to check out is stenum hospital in germany one stop shop. Just some more views and ideas for you I hope this does not add to the stress I know your allready having.

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No I was never given the option of disk replacement, however my injuries were quite severe and I eventually had fusion L1 through to L5 + S1, so my lower back is pretty much now rigged. tjs01, if you have been so pain free since your operation, you are one in very few and good luck to you, you are really one of the most fortunate that I have heard of.
Maggs, good luck, your nerves must be on end by now, all the waiting. I hope it goes well and that you are one of the fortunate few. Please keep us posted on your recovery. For those who have emailed me with regards to the plans for the beds, I am almost finished with the revised drawing and will mail it to you as soon as I can.

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Hi all again,

When I was first referred to my surgeon it was suggested that I only needed a the discectomy...however after a half hour chat with the surgeon he said at the least that I needed a disc replacement. Below is the link he said to look at.

However after the disocgram, it was discovered my back was too knackered, the disc was pretty much non existent, and that the facet joints had started to compensate and chrsytalise (recollection here of what was said exactly a bit hazy).

Re the pain, I do still have a bit, but it is no where near comparable to what it was,I guess thats what my main point is and what I think Maggs should focus on...

I am getting stronger everyday...all of a sudden you realise that something doesnt bother you any more..I had residual nerve irritation and now it only flares up if i do something to aggravate it...I found a couple of weeks ago that I am still not ready to swim.

Remember...after monday, you'll be on your road to recovery!

Try http://www.adrsupportuk.com/ or
http://www.spinepatientsociety.org/forum/surgical-outcomes/new-member-new-post-op-fusion-two-level-lumbar-fusion-1119/

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Thanks again for your comments. There is one thing that seems to flow in some way through all these threads... Make a positive change. Yes, it is going to hurt, yes, it might take a long while to recover and yes there is risk. I now feel much more ready for surgery and believe the risk is worth it. Sometimes when I am in a lot of pain I tend not to look into the future but just sit and dwell on the seemingly impossible present. These conversations have helped me to look beyond the moment and focus on a better future with my eyes wide open.

Thank You All
Maggs

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My first surgery (I was still working) I went back a little too soon. I only had decompression at L4-5 and L2-3 without instrumentation (no fusion). I was never truly free from pain and am now scheduled for my 3rd lumbar surgery. This time it will be a fusion at L4-5 and another decompress at L2-3. I don't know if my outcome would have been better had I not gone back and it was really just a week or two early, doctor was concerned, I was not.(I work with nurses, PhD's I trusted) Actually I thought I worked with people who would have helped, not so.

I ended up complaining to HR about a boss that had no sympathy for me. Imagine I went back to work early and my boss and most counterparts thought I was cured and cut me no slack what so ever!

Worked in an office at a computer 8-9 hours a day, traveling carrying a 10 lb laptop in a 15 lb case with purse, suitcase through an airport. TAKE THE TIME THAT YOU AND YOUR DOCTOR AGREE UPON AND STICK WITH IT! And if it doesn't feel right don't do it and complain to your surgeon he can set limitations. Also, if surgeon has released you, talk it over with your general practitioner she/he can also continue to set the limitations for you.

I have to laugh here and hope some docs are reading this-It was noted on my paperwork that I could lift and carry 20 lbs or less. Have you ever lifted and carried 20 lbs? Really? Try carrying four 5lb. bags of sugar around with you, see how that feels. Because when you put that in writing you realize that someones boss can request they do this for 8 hours a day, 5 days a week. It is not so light, not so easy. And refusal can be all a boss needs for grounds to fire you if he so chooses.

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Tooyoungforthis
That is incredible that ur surgeon gave u no limitations after having surgery. My surgeon requested me to be out for 12 weeks and not to lift 5lbs or more also requested that I be given the ability to take breaks from sitting long periods of time. I had a fusion so that may have been the reason but each doctor needs to take into consideration each individual case, not everyone is the same. This round you should def take extra time to heal and never overdue urself. I can no longer work because of the commute, stress and extreme pain that I am. I wish u much luck.

Mamadks

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I am very lucky in that I have the perfect boss...IT'S ME. Yup, I am self employeed with an awesome forman so as long as I can be clear headed every 2 weeks I will be OK. The world is ruthless regarding healing time vs. profitability but I believe this is the doctor's issue. My doc also says no more than 5 lbs and I can not stay sitting for longer than 20 min at a time. You have to fight for your rights

Maggs

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Hello All.

As promised, I am responding to you all po. In many ways I feel like a member of the undead, or at least, brain dead. I am exhaused and in quite a lot of pain. The doctor upped my pain med to Percosit vs Vicodine 750/500. I really think the vidocine worked better. The vicodin seemed to last longer also. The surgery went as expected with no surprises. I have come across one problem that I didn't expect and that is I can't seem to take care of myself hygentically as much as I would like too be able to after a BM .Sounds funny...maybe but this could turn into a larger problem if not solved soon. My first followup appointment it June 1.

Maggs

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