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surgery update

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panther
panther Community member Posts: 251 Courageous
Well pre op appointment is now done I now know what the surgery plan is just have to wait till admission day now. It's scary to think it's only just over 2 weeks away.

This time they are removing the toenail on one of my little toes, putting a pin in the other little toe and posibliy injecting one of my feet where the bunion use to be because I've carried on walking on it and there's now a problem there!!

All being well this should be done as day surgery so fingers crossed. Though my gut feeling is this won't be the end of all the surgery but will have to wait and see.

Will keep you all posted.
Helen
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Comments

  • leg_iron
    leg_iron Community member Posts: 20 Listener
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    Hi Panther, good luck with your op. I can understand how your feeling. I hate the wait prior to surgery.
  • panther
    panther Community member Posts: 251 Courageous
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    Hi leg iron, Thanks for your good wishes for my upcoming surgery. Luckily I haven't got too long to wait I'm just getting fed up with it all this is now my fourth lot of surgery after agreeing to bunion surgery a few years ago.
    I've since being going through ongoing problems with the surgeries because of the cp so it's almost here we go again. At pre op last week they said you sound really bored doing these forms I bet you could do them with your eyes closed now you've done them so often!!

    Take care
  • leg_iron
    leg_iron Community member Posts: 20 Listener
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    I was like that when i was at pre-op in October last year. The nurse who did my pre-op assessment knew me well as she had dealt with me for about 5 years.

    I'm just about to return back to work after being off since 8th November after having my 5th op in 5 years. I dont want any more! I have had enough. Let me know how you get on.
  • acrossthepond
    acrossthepond Community member Posts: 36 Listener
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    Hi Panther,

    I wish you all the best with your upcoming surgery. I haven't gone through all that you have but I can relate to your frustration because just going back and forth to our various doctors can be exhausting.

    One of mine is still asking me to consider having a Baclofen trial to see if I can tolerate the drug intravenously. He still wants me to consider having that pump surgically placed to deliver the drug automatically. It's a big leap that could put me on a road even more similar to yours. I have much more research to do and second opinions to gather first.

    I hope that you will update us when you can. I hope this resolves your problem so that you can enjoy life more. It may not help with everything but every improvement helps.

    Regards,

    across the pond
  • Hymerkar
    Hymerkar Community member Posts: 63 Courageous
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    Hi Helen, sorry I havent been on here for ages. I seem to go through stages where I check in on a regular basis and then forget for ages.

    I hope your surgery goes well, and that it helps and improves your life this time.

    Across the pond - I take Baclofen in tablet form. I have 10mg tablets, and my GP has prescribed for me to take 3 daily. However, I dont take them EVERY day, I might take them daily for a month or so and then once my muscles have reaxed enough for me to be more mobile, I leave them, sometimes for up to 6 months. This has worked for me, and at least I am in control of it. Intravenous seems a bit drastic dont you think?

    All the best to both of you anyway, and HAPPY NEW YEAR to everyone on here

    Take care, and keep smiling,

    Karen XX
  • panther
    panther Community member Posts: 251 Courageous
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    Hi acrossthepond thank you for your good wishes I agree with Karen intravenous baclofen sounds a bit drastic I'm not sure I'd want to do it. I didn't get on with baclofen in tablet form though. Before getting ready for this next lot of surgery I was taking Dantrolene tablets and Voltrol tablets this combination of tablets has been the first lot of tablets that I've found have helped me and not given me bad side effects. They are the only ones I've been prepared to carry on taking much to my GPs surprise as I usually only last a few weeks or days before I'm back saying I can't cope with the side effects.

    As for the upcomming surgery I hope it will help but the previous surgeries have ended up putting me into my wheelchair more often rather than less. But I knew there was that risk when I went into it I still manage to walk about indoors but when out and about I need my chair, and at the moment it's difficult at times to have shoes on that's why I'm back in hospital in a few weeks hopefully then it will help with the problem but time will tell. I doubt it very much knowing what my luck is like.

    Take care all of you and will keep you posted especially once surgery is done and I'm going through a rather boring recovery and resting!!

    Helen
  • panther
    panther Community member Posts: 251 Courageous
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    Hi Everyone

    Just a quick update I had the latest lot of surgery yesterday they have removed part of my little toenail on one foot and put a pin in the little toe on the other foot.

    Thankfully the surgery was able to be done as day surgery so I got home last night and am now just doing the recovery. Have been advised to have my feet up for next few days just weight bear during transfers and then slowly start walking next week depending on the pain.

    Although on painkillers this time round I don't feel too drugged up so expect to see plenty of posts on here as I pass the next few days!! Stitches come out in 10 days so now it's just wait and see if further surgery is needed.

    Take care all will keep you posted although this time they aren't putting physio in they're letting me do the recovery myself!

    Helen
  • leg_iron
    leg_iron Community member Posts: 20 Listener
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    Hi Helen, thanks for the update. I'm glad everything went ok yesterday. Hope your being well looked after. Hope you dont get too bored. Day time tv it bloody awful!!

    Take care.
  • leg_iron
    leg_iron Community member Posts: 20 Listener
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    Hi Helen, take it easy and dont over do it. Have you got anyone to wait on you? Make the most of it!
  • acrossthepond
    acrossthepond Community member Posts: 36 Listener
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    Hi Helen,

    I'm glad that your surgery is complete and that you are doing so well. I do agree with the others in that you should be careful not to overdo things. Give yourself some time to heal before pushing yourself. You certainly don't want to undo your surgeon's work and potential create more difficulty for yourself.

    Now...as to the horrors of daytime tv, it's apparently an international, universal problem for which there is no quick solution that I know of. DVD's and other recorded favorites, good books and the company of good friends are some of the best ways I know to pass the time. I hope some or all of these help you. Recover quickly and stay in touch.

    Regards from across the pond,

    Joyce
  • panther
    panther Community member Posts: 251 Courageous
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    Hi Joyce and Legiron

    I did have someone waiting on me but unfortunately he had to go back to work at the weekend. I've tried to be good and don't think I've over done it today but I'm sure my partner would disagree lol!!

    Recovering from my surgery is the least of my problems at the moment last week before I had my surgery I also had an appointment with my neurologist.
    Amongst many thing the neurologist has decided to try me on anti convulsants which the gp has suggested I start taking next week!!

    The neurologist is unsure if some episodes I'm having may be epilespy so he's going to see me in 5 months time to see how I've got on trying the tablets. The neurologist and I have a bad relationship but then I guess anyone would hate someone who told you that your cerebral palsy was all in your mind not to mention other things along those lines.

    Take care both of you talk again soon
    Helen
  • panther
    panther Community member Posts: 251 Courageous
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    Hi Legiron

    Yes you are right day time tv is no fun!! Today is my first day of being able to walk a little bit pain doesn't seem too bad at the moment maybe I've just tempted fate by saying that time will tell.
    I still can't get shoes on either foot yet due to the bulky dressings stitches come out next Monday so I guess until I'm in shoes and walking we won't be to sure of if this surgery has worked, at least when I have shoes on I can see where I wear them out and can understand more how my walking has or hasn't changed at first today it felt very flat footed now as I've walked a bit more it feels more normal for me.

    Take care
    Helen
  • acrossthepond
    acrossthepond Community member Posts: 36 Listener
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    Hi Karen,

    Thank you for sharing the information concerning your dosages of Baclofen and your method of utilizing it. Unfortunately, very early on in my search for relief from pain, spasms etc., I was prescribed Baclofen. My very first dose made me sick to my stomach almost immediately. I have had the same reactions to Synemet and other medications. In addition, I react to medicines in the sulfate category too which apparently leaves my doctor without options.

    My doctor believes that I would benefit from Baclofen if it was administered directly into my body via the pump I have written about in earlier postings. That's why he wants to do the trial by giving me a spinal injection that would indicate whether I would benefit from the medication and also indicate whether I should undergo the surgery I mentioned elsewhere on this site.

    Since muscles in my legs and feet are beginning to contract and affect my walking ability, he thinks it would help/slow down this process and keep me from eventually needing a wheelchair. He might be right but I need to be sure that there are no other options that could help me put off surgery. To be fair, even I know that I have a short window before something has to happen. That's why hearing what you are all going through is so helpful.

    Thanks for your input.

    J
  • acrossthepond
    acrossthepond Community member Posts: 36 Listener
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    Hi Helen,

    Thanks for the breakdown of your medication regiment. I will try to find out if those medications are approved for use here and then discuss them with my doctor. Did your gp say why he doesn't like your taking them? Is there some conflict with some of your other medications or some dangerous long-term side effect that he is concerned about?

    I can relate to your not having a great relationship with your neurologist. Since my move, I am finding that my new doctor rushes things along and isn't as accessible as I would like. It makes it hard to ask questions and even provide him with information. He has his nurse get the information concerning any general medical updates I might have. He usually just comes in and injects me and asks few questions. Unfortunately, that seems to be becoming more the norm in our medical system these days. I will have to see what happens but your information may provide another option without surgery. I will keep you posted.

    Good luck with your doctor. As you know, my neurologist recommended the surgery, in part, because my toes are curling too and affecting my walking. On the other hand, I have another doctor who is more skilled in Integrated (holistic) medicine who says my mind is having an effect on things and is at least some of the reason the toes are curling. She isn't a fan of my having the surgery but she has written a prescription for a rolling walker. She wants me to use that when I am going to be out for longer periods to help me with fatigue. When I can, she wants me to stay with a quad cane or nothing at all. She also recommended modified yoga and meditation and aqua therapy in warm water whenever possible.

    I know that seizures can occur in people with CP but I thought that those would be something that you would have from the onset rather than something that could occur later in life. You might want to ask your doctor about that. I would be interested in hearing what he says.

    Take care of yourself and keep in touch.

    Regards,

    Joyce
  • panther
    panther Community member Posts: 251 Courageous
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    Hi Joyce

    It's the neurologist that says he doesn't like dantrolene he didn't give me any reasons why and I will fight him all the way I think if he trys to get me to stop it.
    The gp is just happy I have found something that helps. The thing with my toes curling we know was a reaction to bunion surgery I had a few years ago, I trust the consultant that does my foot surgery 110% because he used to specialize in cp before he moved over to foot and ankle. That's why I don't believe the neurologists opinion, unfortunately for him I'm not sure I'll ever trust him his attitude towards me is so bad to start with.

    With regards the seizures I have a history of non epileptic seizures these look the same as epilepsy but in the past have been proved to be stress related and these ones can't be controlled by medication. Last year I started having these other episodes that are nothing like what I've had before hence there is now a new neurologist on the scence looking into them. Just my luck the last neurologist I had about 10 years ago who was very good has moved into research and no longer sees patients. So I am left trying to get on with someone new who doesn't listen to anything I say and who loves to give people with cp Botox.

    The gp has also asked this new neurologist for ideas on my cp I'm starting to wonder if the neurologist gets comission or something for every patient he signs up for Botox!!

    Good luck with your research let us know how you get on.

    Helen
  • acrossthepond
    acrossthepond Community member Posts: 36 Listener
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    Hi Helen,

    Thanks for the explanation. I understand how you feel about your doctor. I have had a few bad experiences with a couple of them myself. I can also relate to your having had a doctor move from clinical medicine to research. One of mine did the same because he was being pressured into spending less time with his patients. Rather than shortchange his patients, he decided to leave and do pharmaceutical research instead. I still haven't found a neurologist who listens as well or is as dedicated to patient care as he was.

    One more word about Botox. As an inter-muscular injection, I don't think you would have any problems with it conflicting with your other medications and causing you any problems. As long as your dosage stays in the recommended range, it should continue to work for you without any problem. It might stop working if your doctor increased your dosage beyond the recommended amount indefinitely. My doctor uses the same dosage but may divide it up into more or fewer injections depending on what the EMG machine indicates via the "static" sound.

    I hope you find something that helps with your seizures. It must be awful to have something just come over you without warning. I hope you find relief soon. I will let you know how things turn out for me when I see my doctor.

    Regards,

    J
  • panther
    panther Community member Posts: 251 Courageous
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    Hi Joyce

    Just seen your last post like you I couldn't take baclofen it made me really ill along with many other drugs I've tried over the years. I was starting to give up hope as was my gp.
    Then he prescribed Dantrolene and I love it, it is the first drug that has really helped with the pain and tight muscles without making me have side effects.

    To start there was some slight light headness and feeling slightly sick but it soon wore off only lasted a day or two. Now I take two 25MG of dantrolene a day topped up with 50MG of Diclofenac 3 times a day, and for the first time something is helping and I'm a lot happier.

    At the moment I'm building back up to those doses as I stopped it all to have my surgery and I couldn't wait to get back on it as my muscles went so tight when I wasn't on it.
    The neurologist I saw last week made a comment that he doesn't like Dantrolene and he was pushing me to try Botox injections, but he will have a fight on his hands because as I usually respond badly to tablets and medication I'm adament that as the Dantrolene and Diclofenac are working he's not going to start injecting me with something that I don't know how I'll react to it.

    Hope what I've said may give you another option to look into Take care

    Helen
  • acrossthepond
    acrossthepond Community member Posts: 36 Listener
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    Hi Helen,

    Thanks again for the information regarding the medications you're using. I was not aware of these medications until you and others mentioned them on this forum.

    You mention that your doctor wants to try Botox. I can understand your reluctance to try something new but I will share with you the fact that I have been getting Botox injections for more than 10 years and I wouldn't give them up without a fight. Without them, I would be even tighter than I am and I would be in even more pain and distress. Unfortunately, many years without treatment because my CP is a mild case, allowed other problems to develop. I have issues with my back and neck etc. Since I can only receive Botox every three months and my dosage is at the max., it can't be used to help address all my issues. Botox is injected into the muscles.T hey can't spread it around to all the different areas I would need it injected in, so my doctor uses it in my legs and puts a smaller amount in my back.

    One problem I am having now, having just moved from one area of the country to another, is that not all doctors are equal and so the way they inject you can be different. The effectiveness of the injections can vary if the injections don't go deep enough into your muscles or if your doctor only injects the dosage into one or two places in your muscles verses splitting the dose and injecting maybe 5-6 areas.

    For me, it took a few rounds of injections before my original doctor and I found the right combination of injections and depth of injection. (My doctor used an EMG machine that emits a static kind of sound to determine the effectiveness of the depth. The static quiets down as the Botox takes effect.) My new doctor and I haven't got it all worked out yet.

    For me, Botox doesn't interfere with my other meds since it goes directly into my muscles. If anything, it has probably helped me not to need more/different drugs for different problems through the years. Now though, I have reached the maximum amount of Botox I can be injected with, and other issues continue to surface, which is why he is talking about the Baclofen trial/ pump.

    I will investigate your input and see if we have these medications available here in the states. If they are available here, I will see what my doctor says when I see him in March. I will let you know, but, if you happen to remember how your initial dosages were prescribed, that might help, since you tolerated it well, while you built up to your current dosages.

    It should be an interesting conversation. To me, it seems the doctors in the UK have more treatments available for adults than we do here. Thanks again.

    Regards,

    Joyce

  • panther
    panther Community member Posts: 251 Courageous
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    Hi Joyce

    Thank you for sharing how you have got on with botox I think if I had a better relationship with the neurologist maybe I'd explore it further but when the neurologist tells you when enquiring about what surgery I was having last week and I explained toes were being pinned due to toe curling after earlier bunion surgery he said your toes don't curl because of your cp your toes curl because it's in your mind you are making them curl. He also went on to tell me that the mind controls the body and the mind can convince the body of anything if you want it to.
    He said he would send me to a psychiatrist if they still had one but as they didn't he supposes he could treat me with botox just because he doesn't like the tablets the gp has put me on.

    As you can imagine with his attitude being like that there is no trust between us and I think for something with botox you have to have a good relationship and trust with your consultant.

    I started the Dantrolene at 25mg once a day for a few months.
    Then I increased to 25mg Dantrolene once a day and 50mg Diclofenac once a day for a few weeks
    Then 25mg Dantrolene two in the morning and one in the afternoon for about a month.
    Then I added another 50mg of Diclofenac to that at lunch time
    Finally after a few months I went on to 25mg Dantrolene two twice a day and Diclofenac 50mg one three times a day so I tend to do 2 Dantrolene and 1 Diclofenac in the morning, 1 Diclofenac at lunch time and then in the evening I do the same as the morning 2 Dantrolene and 1 Diclofenac to hopefully help me stop my legs from hurting during the night so I get a good nights sleep.

    Hope that helps when you make more enquires with your doctors. I'm due to see my neurologist in June as he also wants me to start some anti convulsants as it is unsure yet if some of the episodes I'm having at the moment may be epilepsy so no doubt he wil bring up the botox again then while I'm there.

    Take care
    Helen
  • Hymerkar
    Hymerkar Community member Posts: 63 Courageous
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    Hi Helen and Joyce,

    Thank you for giving me some interesting reading. It sounds as though the three of us are struggling with very similar problems with the leg muscles tightening and curling the toes. I really am not sure what the answer is.

    Glad to hear you got your surgery out of the way Helen, take it easy and dont try to do too much too soon and undo it all.

    Take care everyone.

    Karen X
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