Alan is getting his operation on his foot!!!
 

He went to see the Orthopedic surgeon yesterday.

He took 5 x-rays of Alan's foot. Then he made him stand in his bare feet and examined his stance, his arch, (everything about the lower extremities).

He told Alan, you need the bone shaved (under the foot ulcer), and you also need the muscle in your calf, extended. I see the way it's putting pressure on the bone underneath the foot". (I wasn't there, but Alan remembered everything the Ortho said).

So February 14 is the due date. He will be in a cast for 3 weeks (on crutches too), and then the shoe boot thing for another 3 weeks.

And the ortho is consulting with Dr. Fred. The ortho gave Alan a big folder thing with instructions on when to get the blood work. So Alan will follow procedure.

I guess it's all been pointing to this for a long time.

Alan is worried about one thing. Not the operation, he knows he'll be put out for that and he had no problem with the former foot surgery for his tailor bunions (he asked if this guy would do the other tailor bunion and the guy said "Is it giving you any problems?" and Alan said 'no" so the guy said 'we're not going there then".

But Alan is worried about the pain afterward because he'll be in a cast, and he has to shake his foot when he gets the PN pain. I told him 'they will give you something for the pain", He doesn't use any pain meds now, he just uses his massage thing on his legs and the pain goes away. Other than that, he just tolerates it.

But what happens after this kind of surgery is anyone's guess.

I would have asked the doctor how high the case will reach. I mean does it go right up to but below the knee (so he can flex the leg), or will it be a full leg cast??)

I wish he would have asked.

So he's having two things done, the shaving of the bone, and the extension of the calf muscle.

If anyone knows any info about these things, now's the time to start sharing.

lol

Melody

Melody
 

I know the surguries I'd had since I got PN took a longer recovery - Dahlek I'm sure will pipe in - but you need to talk to doc about best time to get IVIG in relation to surgery to help him recover best he can..... also, anesthesia seems to hit much harder with the PN - so I'd be sure to discuss with anestheisologist prior to surgery....

Well, hopefully Allan will be up and about by Spring. Let's hope this works for him. It has been a tough problem and I am sure he is sick of dealing with it. I am sure his surgeon will put his heart into it:p...great date for a surgery....Valentine's Day.

I'm glad someone found something positive about this surgery. I call it "Valentine's day gift to his foot". lol

and Kmeb, what do you mean Anaesthesia is harder with the PN?? What should he be looking for?. Alan has had foot surgery before and it was just fine.

And the odd thing was that they gave him pain meds for afterward, and he never needed to take a single med. His feet are completely numb (except for of course the PN pain between certain toes.

And about the ivig and the operation. We don't even know if he gets to get another IVIG treatment. they now demand a $500 co-pay with each treatment. That's not going to happen. Of course we are talking to people.

If he gets approved, (and the surgery is on the 14th of Feb), when's a good time to get the IVIG??

Mel

Mel,

I am sure the anesthesiologist will speak with Allen if they are doing anything more than a local. I don't know if he is getting a general anesthesia or regional or local. They tend to avoid general anesthesia as much as possible, so just ask.

Some people with PN have problems with some meds, but we are all different. Some people with PN, especially those with idiopathic small fiber, may have other diseases, some of which are associated with anesthesia complications. I am one of those lucky people who has general anesthesia problems....other folks breeze thru things. I am an anesthesia nightmare....but it might not be the PN....it might be what is causing the PN that also causes the anesthesia and drug problems for me in general. That said, PN is a disturbance in neurotransmitters and that is what an anesthetic does....so, yes it is always good to let the doc know....I bet you already have!:D

HI Mel and all!
I have problems with anesthesia too.....it doesn't work for me. They have to give me heavy doses of the stuff and Fentanyl based anesthesia doesn't work at all on me. I've wondered if it has to do with me PN or not.
I hope Alan breezes though this surgery and is up and running by spring!

Three things
 

are going on at once?
OK think, read and learn as as possible about the surgery Alan will be having. The prep parts are usually the easiest, as is surgery itself. RECOVERY afterwards is a bum deal all around tho! Recovery, not using that foot at all, losing muscle tone and able to do only very limited exercising makes one weaker than ever imagined. I speak from experiences having had to be off feet, tho not in casts, for the last 2 years running [plus a knee surgery a few years ago as well]. Time to ask questions about physical therapy is NOW! For my knee surgery I'd done 4 weeks of PT before the surgery and another 4 weeks more 3 weeks after. Now is the time to learn the key strength building exercises that can be done at home in prep and what to do during recovery.

SECOND relates to the anathesia? Alan has a 'demeyelinating' condition with his CIDP. MS is also a 'demeyelinating' condition and many anathesias can do more 'demeyelinating' due to the meds used. The MS communities are the ones who are best versed about this. If you even do a search here, using 'MS+Surgery' I bet you will get an eyeful and earful...There are other meds used that can help avoid more 'demeyelination'. As long as the docs and the anathesiologists KNOW about the connection with that key word: DEMEYELINATION...I have had 3 surgeries since my CIDP onset and speaking up and loud about the D-word I've not had problems..ounce of prevention or caution for sure. CIDP and MS are different in that the D-word occurs at opposite ends of the body...so to speak -MS in the brain, CIDP at the 'extremeties'.

THIRD AND LAST, the IVIG and timing: I have been told by my neuro that a wait of 7-14 days...ideally 10 days after an infusion gives you most benefit for the condition you are getting the IVIG for, and yet you still have enuf 'boost' from the IG to help keep infections at bay. As for the pain pills? After surgery they WILL be a must! I didn't need to take my full 10-day supply of Oxy...I believe I only took 5 days for the first surgery, 4 days the second and 2 days the last. Along with a LOT of peri-colace for the Oxy side effects! Keeping well hydrated during recovery and moving about a little bit [ergo the pt at home exercises] will help stimulate circulation overall and minimize side effects for the long run.

Sure hope this helps ease your mind and preps YOU for the whole experience! Alan is truly lucky to have you to care for him! I did 90% of my recoveries on my own...and I know how hard it is just to get a bottle of water from the kitchen to my 'chair', then other trips. You should/must make him move as much as possible tho...surpising how a person can adapt and do it when they have to..I believe that helps speed up recovery too! - j


Roxie It does have something to do with the PN....now you know.

HI J!
Yep I do know! I sure get some strange looks from nurses tho when I say I want to talk to the anesthesiologist myself! I don't take that look for an answer anymore! If I have to have any more surgeries at that hospital I'm going to ask for that anesthesiologist because he was great! I've had some real turkey's before!
I've learned to bump up my Lyrica when I'm having something medical done now......never do the "wait and see" anymore!

Well, the ortho guy knows all about Alan's CIDP. He is also an expert in dealing with people with foot ulcers and neuropathy. I made sure of that when I called his office.

Yesterday when Alan went, they talked about his neuropathy. They had a good long talk and Alan explained how long he has had the foot ulcer, and how long he has had the neuropathy. The guy's a surgeon so I will have to put my trust in him.

As for the anasthesia, Alan has had two surgeries so far. The first was the GA for the tailor bunion. He went out like a light. Felt nothing.

The second was the angioplasty. He felt nothing then either.

He has also had light anasthesia when he had the colonoscopy. Felt nothing during that either. Thank goodness.

Now I have no idea if the guy is doing a local for the shaving of the bone, and the calf thing. I really don't think so. The doctor told him yesterday: "Depending on what Dr. Fred and I discuss, you will either have this done at Beth Israel, or on the 4th floor here (it's an annex of the hospital).

Alan said that the ortho said "Because you have a stent, and you are a heart patient, we don't want to take any chances".

So they are at least giving this a lot of thought before they proceed with anything.

I don't have any more information. It's a good thing I didn't go there yesterday. I would have had a page of questions. But I did write down several questions and they were all answered. I wish I would have thought to ask; "Do you do GA or a local". How stupid of me.

Oh well, we shall surely find out. This is all on me. It would have been nice to have family, my son , just SOMEONE to be a support system.

It's lousy when you are alone. All I can say is thanik god Alan has ME, because he'd be up the river, believe me.

About the moving around after the operation. The doctor said 'absolutely no pressure, keep 100% off your feet and only use the crutches. You can't put any pressure on that foot. So I told him that when he's better, he can sit down on the couch and lift weights or something, just to get the blood pumping. And we are going to see if his insurance will cover a wheelchair.

Anybody have any opinions as to the size of the cast?? Because they are going into the calf muscle, do you think the cast will be up to the knee, or up to the thigh???

Surgery
 

Melody,

I've had 4 surguries and other minor procedures when I had to be put under for short periods since I got pn.... prior to PN I had 3 abdominal surguries and oral surguries - and bounced back in about a week each time (and for the wisdom teeth in couple hours) - no problem... after PN - the anesthesia seems to stay in my system much much longer... I had a 3 1/2 hour surgery two years ago a few days before Christmas and I truly though I wasnt going to make it - the next week and a half I was so weak I had to use my walker just to go a few feet (and the surgery was on my jaw) - I dont even remember the holiday, just laid on the couch...... the stuff seemed to stay in my system for days longer then it ever did before... (also, I cant take pain killers stronger then tylenol and I'm sure that didnt help - but the other surguries were also just tylenol afterwards)....

My last surgery I had IVIG a few days prior - and talked to the anesthesiologist prior to the surgery and told her to go as light as possible with the drugs - and in regards to the drunken weak feeling - it did let up faster......

I know that surgery is no cakewalk but sounds like there is a good chance something positive will come out of this. It's great that Alan can have you at his side to get thru it.

Regarding anesthesia, I have problems with being too sensitive to it. It doesn't take much to put me out and away and when it is outpatient, I have a hard time waking up so I can go home. So from some of the other posts with other people having the opposite problem sounds like we are all different (no surprise). Since Alan has had surgery before, IMO it's good to use that as a benchmark which I think you are doing.

Good luck and very best wishes.

I don't have much more to add to what's here--
 

--except for best wishes for Alan (I'm glad they are finnaly going to do this) and to encourage you to watch and monitor all this like the mama hawk you are.

sounds promising.
 

Alan cannot live properly with an ulcer that keeps forming. Eventually there will be a serious consequence.

I do think the tendon surgery part, will be painful during recovery. He may not feel the
ulcer fix as much.

Two people at work had tendon repairs, and they had no problems with them.
There was pain for the first week, significantly.

Mrs. D.

This is how I look at it. Alan has lived with the PN pain for 18 years, even having to go on the fentanyl pain patch for a year, about 5 years ago.

Whatever pain he has from this tendon thing, (and I'm assuming it will hurt), well, as he puts it, it can't be as bad as what he went through 5 years ago when he had to go on 125 of the fentanyl. We had a friend with lung cancer who was on only 100 of the fentanyl patch at the same time Alan was on the patch. That's how bad his PN was 5 years ago.

So I gather, that once a person has tendon surgery (with or without PN as an additional factor), I gather they will be providing him with percocet, or some such narcotic until he no longer needs it.

When Alan had the bunion surgery, they kept telling him "this is no walk in the park, you don't know how painful bunion surgery is, etc. ".

He felt absolutely nothing, and never even took a tylenol.

So I gather the real pain, or discomfort he will feel from this surgery has to do with tendon. What exactly do they do when they extend the muscle??

And does he have to go for any type of PT afterwards. I wish he had asked these questions. I mean, we certainly have time until this happens, but I like to have answers and be informed before going into strange territory.

I do wish he had kept this appointment when we first made it way back a few months ago. He would have had the surgery already and would have been on the road to recovery.

But he's stubborn. But, better late than never.

Thanks to you all.

Melody

Well, it sounds like everything is in order and you can have a great holiday! I am sure Allan will bounce back...he seems to be pretty resilient. You have good docs you trust, and like you said, Allan has YOU! Which is 5 star service.

I usually get bread and water left at the door!:eek: I am kidding.:D That said, hubby thinks caregiving is doing the dishes and wash, which he religiously does. I do have to give him credit for changing my PICC dressing a few years ago....once he told me to "shut up", nicely of course, but actually, I felt a lot better when he said that....I felt that he could handle it, and he didn't need my sage advice...and he didn't break aseptic technique. I envy people who are totally trusting of others providing care.

I once had a nurse steal my demerol shot, after a C-section. My husband was right there, and when we called her on it, she came back with one, so we know she had to have taken it....isn't that nice? She said, 'this will knock you out very well, since you already had one.' My hubby said, no, you didn't give it...you washed off her behind and left with the full shot....you never gave it." She huffed off. We should have reported her....but that was 30 some years ago. Now meds are much better controlled...but this kind of thing sometimes happens. I always ask too...what are you giving me, what are you putting in my IV? I must be a real pain in the butt....however, I have caught a few mistakes. Allan is very fortunate to have you standing guard.

Yeah, that's me. THE GUARD!!!! LOL

Mel

duh--dyslexic me....sorry for putting two LLs in Alan's name.

Go and look at the thread Merry Christmas. I finally learned youtube.

mel

Tendon repair
 

melody,
The tendon repair will likely be the painful part of the surgery. I had a tendon repair many years ago. I had a badly sprained and broken foot with a tendon that tore in my ankle. They put two pins in my foot and then took a plug of bone out of my ankle, saved the plug, then took a tendon that isn't used much out of the back of my calf. They sewed it onto the torn part of the tendon, put the other end of it into the hole where they took the bone plug out, then put the plug of bone back in my ankle with it holding the tendon in place. Twenty two stitches and a hard cast to hold things in place while it was healing, crutches were necessary and I could place no weight on it for 6 weeks.

Yes it was painful. But they did give me pain medication. Showering in the cast required one of those waterproof cast covers. And NO coathangers in the cast to scratch! :D

I hope this surgery helps Alan get back to his full ability to walk right. Good luck to him!
Billye

Wait a minute. All the doctor told Alan was that he was "extending the muscle". Is this the same thing that you had done?

If you think I'm telling this to Alan, well, forget it. It's practically freaking me out.

All Alan can remember about that part of the conversation was that something about his calf muscle (when Alan places his foot flat on the floor), well this does something to the bony thing and that's why he is getting the foot ulcer.

So the orth said "I'm going to extend a muscle in your calf".

From what you described, this is MAJOR STUFF HAPPENING. All he wanted was the bone shaved.

Somebody clarify if this is what alan is going to have to go through. This tendon bone thing.

good grief.

mel

tendon repair today
 

is not quite the same. It has become very sophisticated.

In order to extend the "muscle", you lengthen the tendon attachement.

One of my coworkers daughter had broken her foot, and the doctors then didn't treat her properly. So one tendon died and she was in alot of pain.

She had a laparoscopic procedure that fixed it all...minimally invasive, etc.
And she did not have too much pain either. Times have changed.

Thank you God, the heavens, AND MRS. DOUBTFIRE.

I was scared to death.

I'm still not telling him. He's too busy making rap videos.

I kid you not, he stood in front of the computer singing some neuropathy rap song. here's a sample....

My name is Alan C.

I've got Neuropathy. etc. etc.

He made up a whole neuropathy song.

You gotta love his sense of humor (especially since he never had one before).

lol

P.S. Mrs. D. do you think (maybe there's a slim chance), that this tendon thing, well, maybe when the ortho fixes the tendon, do you think there's a chance in hel* that his neuropathy pain (between the toes), might be lessened???