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anne.brook

The journey has now begun

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Whoopeeeeeeeeeeeee :lol: :lol: :lol:

Good news today. Victoria has not had a single bleed for the first time since the amp. She was up and walking with her PPAMaid today, and she is probably going to be able to come home again for the weekend. She is so happy, and I guess you can tell that I am too.

Fantastic! We will keep praying.

JudyH

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Good news, Anne.

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Another excellent day with very little bleeding. If Victoria remains stable overnight, she can come home tomorrow afternoon, and will not have to return to the hospital until Sunday evening. :lol: :lol: :lol:

We see another consultant tomorrow to discuss her overall progress and will learn whre we go from here.

On the analgesia front. Victoria has already dropped from 600mg of Morphine sulphate per day to 200mg, and from tomorrow that will drop to 100mg. She is also pushing to come off of some of the other medication. Her paid specialist has suggested that she leaves her gabapentin (I think that's how you spell it) at the current level as it will help with her phantom pain, which is beginning to be a tiny problem for her.

One thing she hasn't had answered yet is that when she gets pain in her phantom foot, that pain seems to be getting nearer to her stump. Has anyone got any suggestions. Is that a good sign?

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Guest bearlover

I have had and still have much phantom pain. I feel like my toes are at the end of my stump. When my prosthetic is off and when I have my prosthetic on they feel whear they should be, if I had toes. :o I was told by my prosthetist that kind of phanton pain is called telascopic (Sp) pain. And that sometimes it goes away. I'm happy to hear Victoria had another good night. I'm sure many more are to come. I hope she has a excelllent time home over the weekend!! Thanks for the up date! ;)

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Anne, I can give you my experience, pain-wise, but as everyone will tell you, "we're all unique." Still, it might help Vicki to be aware of the range of responses out there.

In my case, the pain was never "horrible"... but it was noticeable. The first few months, especially, I had stump pain, phantom pain, muscle pain from learning to use the prosthesis, AND a phantom limb so "present" that I had a hard time realizing that my leg was actually gone.

As time passed, all of that began to subside. My phantom limb began to grow "shorter," until I felt that my foot was attached directly to the end of my stump. As the limb "grew shorter," my phantom pains came less frequently and were less intense. Eventually, the phantom limb disappeared and with it most of the pain.

Now, a year-and-a-half later, my pains of any sort are rare. I'm more likely to have stump pain, generally because of something "definite," like a socket that needs an adjustment. When I'm very tired or stressed, the phantom limb sometimes returns... and when it does, I'll have phantom pains... in my case, again, they're usually not too bad or too long-lasting.

Many people find that their phantom pain lessens as time passes and they get their prosthesis, but some continue to have problems (as Bear mentioned). Part of the "solution" is having a good pain management team working with you. It sounds like Vicki has that in her favor, and a fabulous attitude, so we can all hope she'll have a good outcome!

take care... cherylm

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As I am typing now with my leg off I feel phantom pain(toes, ankle, shin, calf, and knee). It is noticable but not a problem. Now 27 years later it is still there. Gone or much reduced are the electric jolts I used to get often. Once in a while I still experienc them. They could be intense like a leg cramp at night waking me and would last a few seconds to almost a minute. Then it would end as suddenly as it occured.

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Anne

I had the same problem as viccky. The phantom pains got shorter and shorter up my leg until seemed to meet my stump. Now almost a year and a half later the are only really like stinging pains when my pros leg is not on. When it is on I get pins and needles in my stump and the electric shots that make my leg jump.

Compared to the continual pain before the operation I count myself real lucky. Occasionally on a bad day I have to remind myslef that a 'bad' day now is only about half as bad as a bad day before my amutation.

Good luck Vicky.

Rachel

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Yet another good day. We saw the prosthetics man today to discuss the various types of leg available to Victoria.

She will be cast (if that's the right word) next Friday, and her first leg will be with us the Friday after.

Walking with the PPAM Aid is simply easy peasy for Victoria. The wound on her hip is not ozzing nearly so much and only needs dressing changes once a day now.

Her Morphine intake has now dropped from 600mg daily to 50mg per day.

Last but not least, she is home for the weekend, but still not supposed to tackle the stairs yet, even on her bottom.

So all in all we are mostly a happy home this weekend.

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Guest bearlover

Teriffic news! Sounds like she is on her way now! Keep up the fight and good work Victoira!! ;) :) :unsure:

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Anne/Victoria

As I said, One tough little lady!! She will do well, especially wanting to climb stairs at this time.

There will be "ups and downs" but it sounds as if Victoria is ready to deal with everything.

I am truly impressed!!

Gil Davis

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I'll "ditto" Gil, here... that is GREAT news! Sounds like the corner has been turned and Victoria is well on her way to a new life!

Anne, I'll give you a "heads up" now, to try and spare you future concern: This "healing from the inside out" process can be lengthy! If it seems to you that the wound is staying around "forever," that's very likely entirely true... and entirely FINE. The idea is that with every dressing change, any sign of infection is treated directly and at once, and any dead tissue, scabs, etc. is removed on the spot. This allows the healthy tissue to grow back unimpeded and gives you a nice, solid, healthy site where the wound once was.

I really, REALLY like the procedure in the UK of getting new amps up, walking, and cast (yes, it's the correct term!) and fitted as soon as possible. In the US, a lot depends on the restrictions imposed by your insurance carrier and the depth of your pocketbook. In my case, I started physical therapy the day following my surgery... but my first measurements for a leg weren't even taken until two months later, and receiving my leg was another month after that. (Granted, part of my delay was caused by the extent of my post-op swelling... but it sounds like, in the UK, I would have just been recast on a more frequent schedule than my insurance allowed here.)

I hope you ALL have a lovely weekend at home!

take care... cherylm

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Guest SuzyQ

Anne,

I continue to read your reports and am very happy for your daughter. It is very exciting that they are going to cast her already and have a leg in another week. I like Cherylm will be 2 months post op before they even take measurements and schedule the casting and it will take another 6-8 weeks before I get a prostethic leg. So I hope to have one by October. Your daughter will be off and running before I get my first step! Guess we are slow in the US. Take care and enjoy your visit with her this weekend.

Louise (SuzyQ) :)

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So far, so good. Victoria and her daughter have gone off for a walk together, as they have not spent any time alone since her amp.

I changed her dressing a while ago, and apart form 2 quite large clots, the hip wound in nice and clean. I truly think we are getting there.

When they come back, I have turned my lounge into a gym, and Victoria can do her excercises. She really is determined to do whatever she can to hasten the time when she can walk on her own and can be independent.

I think perhaps the reason for such lengthy delays in America for casting etc. could be the specialists are afraid of litigation. Over here it is much more difficult, but I think we are trying to catch you up.

It is so nice to see Victoria as she was 4 years ago, before her accident. She smiles all the time and doesn't have that grey look of pain in her face. I am blessed to have been given back my daughter.

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Guest bearlover

Good news! She will continue to Amaze you! :) B) Keep up the fight Victoria!

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I changed her dressing a while ago, and apart form 2 quite large clots, the hip wound in nice and clean. I truly think we are getting there.

When they come back, I have turned my lounge into a gym, and Victoria can do her excercises. She really is determined to do whatever she can to hasten the time when she can walk on her own and can be independent.

I think perhaps the reason for such lengthy delays in America for casting etc. could be the specialists are afraid of litigation. Over here it is much more difficult, but I think we are trying to catch you up.

Hi Anne

I'm glad that your daughter is well.

Tell me, why is she being cast whilst she still has an open wound? In the UK, you're not supposed to be cast for a new limb until your wound has healed.

Lizzie :)

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Hi Lizzie,

The reason she will probably be cast next week are twofold. Firstly the wound is quite high up, on her hip, and nothing to do with the amp site. Secondly the open area is now under 1cm wide, which they say will be closed by next Friday.

Obviously nothing is cast in stone, and the casting could be delayed, if neccessary. But, bearing in mind that she is walking quite freely now with the PPAM Aid, and that she is keen to proceed to the next stage, They have decided to go with her wishes.

The whole team at the hospital are very good at involving everyone concerned, including Physio's. OT's, nursing staff, patients and family. I am sure that nothing would be done if it were not safe, but I really do thank you for your concerns.

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I had hip surgery three years ago, Anne, and they didn't cast me for a new socket until my wound had healed. The doctor at the limb centre was very firm about not casting me until then. The same was true a year later, when I had knee surgery - this time the wound didn't heal so quickly and so I wasn't 'on my feet' until 12 weeks post op.

Lizzie :)

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Hi Anne,

I don't quite understand the rush to cast her. Especially with an open wound.

It could create more problems.

Cat

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Hi Anne,

Haven't been on for a while but have just caught up with your daughters progress. It's great that she's getting on so well.

Everyone heals in different time frames so don't be too concerend that other people are being casts for sockets before her. Gee I had at least 8 people get to rehab after me, and leave before me, they were all 20 years older than I was. It's not a race it's very personal. I had to wait 3 months for my first socket. Tiny little wound but not worth the set back. And then when I finally got my first it didn't fit after 4 days; -I had 6 sockets prior to leaving rehab. Some of the check sockets didn't even fit by the time they were fisnished and I was ready to try them on.

Fact is I was changing shape-what seemed like over night. So I figure that it's better to be really patient at the start take it slow and reap the rewards down the track-ie no set backs

Ps: If it makes you feel better my orthopeadic surgeon has a tool box like a carpenter-they all do; but without them they just couldn't do there job.

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Like Mel I haven't been here much lately either but it's great to read about Vikki's progress!

I too had to wait three months for my first socket and my wound wasn't completely healed then either but as it was only a very small area easily covered by a single plaster they went ahead with the cast.

Hope all goes well for VBikki when she gets her new leg!

Kev

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Guest bearlover

WOW!! :) Looking good! Keep up the fight Victoria!!! You will do great... Your a real inspirtiation!! :) :P :) :)

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Anne/Victoria

I stand corrected! Victoria is not only a tough little lady, but beautiful, as well.

Thanks for the picture, it was worth a thousand words.

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Thank you. I'm proud of her and all she has achieved so far. I've just dropped Victoria and her daughter at the cinema to see a film and will go back and pick them up at around 6pm.

Victoria has been allowed to go back early tomorrow morning instead of tonight. She went to her own home for the first time since her surgery, but it was probably a mistake. She realised for the first time that her husband had really gone.

I just hugged her for hours, and today she seems a lot brighter. As I have said all the way along, she is a gutsy lady.

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