I think I asked this before, but to anyone who has had hamstring lengthening surgery--what's it like? Is the pain really bad? I know one thing everyone seems to say is it makes you really weak...

I am having the surgery on Friday, along with hip flexor lengthening...the bad thing is, I was supposed to have it a month ago, so that I would have more time to go to therapy and get stronger before school starts. Now I will only have about 5 1/2 weeks before school, and I will have to go to therapy during school too. Oh well, I guess I'll just hafta work really hard! :)

Anyway, any stories (good and bad) or advice would be appreciated...and if you believe in that sorta thing, I wouldn't mind getting some prayers too :angel: (I am afraid of going under anesthesia, even though I've done it before...I'm such a wimp, LOL)

I will pray for you Steffers and affirm that you will have a successful surgery that will benefit your life in many ways in the years to come.

Steffers, good luck! I'll be thinking about you! I'm really afraid of general anesthesia, too. When I had my botox injections in my psoas a few months ago, they gave me a general. I was shaking on the table when they put me out (I was sooooo scared), but all was well. Ask to be given a drug called Versed in your IV before you go into the OR-- you won't remember a thing. Ask for anti-nausea drugs, too. You'll feel so much better when you wake up.

How old are you, Steffers? I had my hamstrings done when I was 8-- that was almost 20 years ago! I think it's much less invasive now. I was in full leg casts for a few months. I don't remember the pain at the hamstrings, but I was pretty young. What I do remember was really intense rebound spasticity in my quads. That was rough, but I pulled through ok. Valium's good for that. That hamstring surgery is what finally got me walking independently around the house-- so, even with the weakenss, it's worth it. One thing you might have to think about down the road, (if you don't already have them) is AFOs. The hamstring release can cause genu recurvatum (knee hyperextension). Walking on unstable knees can really get you in trouble in the long term. My docs didn't put me in AFOs as a kid (even after the surgery); my mom and I are still wondering why to this day.

I'm really interested to hear how your psoas lengthening goes--I don't know anyone who's had it. My back trouble is caused by tight psoas, and botox didn't do a darn thing!

Take care, I'll be thinking about you!

Nicki

Steffers,

I had hamstring lengthening 6 years ago on the 22nd (I can't believe it's been that long!). It was a REALLY easy surgery. The hardest part was the general anesthesia, because it makes me so sick. (but I have a phobia of that kind of thing, so I'm probably being overly dramatic) I was in the hospital for a week instead of just overnight. It barely hurt at all though, only when I would fall out of my chair or something. I was in cylinder casts from hips to ankles for about 6 weeks. They slid down and cut my ankles pretty bad, that was the only rough part.

Like Nicki said it can cause recurvatum, which I had pretty badly after the surgery, and still have to this day, although not as extreme. I had a gait analysis done just a while ago to see if there was anything they could do for my increasing pain/decreasing stamina, and oddly enough the doc didn't mention AFOs, although when I read the report they were suggested. He basically told me to take yoga... I was bummed.

Anyways, it's an easy surgery, so don't worry! Good luck! :)

Thanks a lot to everyone who responded... you guys made me feel a little better, at least :)

NJenn, thanks for the drug advice....anesthesia makes me very nauseous. I am 19... the doctor told me that they usually do hamstring releases at a younger age but one good thing about doing it at my age will be that I can work a lot harder in therapy and (hopefully) recover faster. Is psoas the technical name for hip flexors? LOL if it is I will let you know if it is helpful. I forgot, he also said he may do my adductors (or is it abductors?) but wants to wait till he sees sees me under anesthesia to decide. (Joy, more pain :))

Wow... that's a lot of surgery, Steffers! Who are you seeing? It isn't Dr. Nuzzo by any chance, is it? He's kind of well known for doing everything at once. And yes, psoas is the hip flexor. Abductors are the muscles on the outside of your thigh, adductors are on the inside.

I have spastic diplegia and I have had bilateral Achilles tendon lengthening when I was 5. When I was 11 we asked the surgeon who did this surgery if hamstring lengthening could not help to improve my crouch gait. We were told that lengthening the hamstrings could cause knee hyperextension and according to the doc, walking with knees falling backwards would be worse then walking with slightly flexed knees. Two years later, at 13, another orthopedist had the same opinion about hamstring lengthening surgery.

So, I'm 29 now and I only have had 1 surgery (Achilles) and have never worn AFO's.

As for the contractures, doc's and PT' opinion vary - some say I only have adductor contractures while others maintain that my hamstrings, calf and other muscles are shortened as well...

I do stretching and strengthening, horseback riding and wear SWASH. So far, this is what can I do about it :)

Just wanted to share my experience.

Good luck with the surgery!

Kat

Nope, it's not that doctor...I guess he said adductors.

My doctor previously said he wanted to do all that, AND break my hip bones and put a plate on them to keep them in the right position (I forget the technical name of that)...my parents DID NOT want to do the hip thing, so we stopped going to that doctor althogether for 6 or 7 years...which is the reason why I am having hamstring lengthening so "late" now, the dr. magically did not think I needed the hip thing anymore the next time we went. :)

I have spastic diplegia and I have had bilateral Achilles tendon lengthening when I was 5. When I was 11 we asked the surgeon who did this surgery if hamstring lengthening could not help to improve my crouch gait. We were told that lengthening the hamstrings could cause knee hyperextension and according to the doc, walking with knees falling backwards would be worse then walking with slightly flexed knees. Two years later, at 13, another orthopedist had the same opinion about hamstring lengthening surgery.

So, I'm 29 now and I only have had 1 surgery (Achilles) and have never worn AFO's.

As for the contractures, doc's and PT' opinion vary - some say I only have adductor contractures while others maintain that my hamstrings, calf and other muscles are shortened as well...

I do stretching and strengthening, horseback riding and wear SWASH. So far, this is what can I do about it :)

Just wanted to share my experience.

Good luck with the surgery!

Kat


I had Achilles lenghtening, too... I think the difference between you and me might be my knees are flexed a LOT, and my hamstrings are so tight that I walk bent over at the waist/hips as well.

So I think it should be worth it for me, but I am not really looking forward to hyperextending knees :/.... I think I might have to take people's advice and look into AFOs :)

Hey Kat,

Nice input, I found it helpful too, thanks! I'm new to AFOs. It's been hard--I've pretty much had to learn to walk all over again, as the ankle joint offers no range of motion. Therefore, balance is compromised. After 26 years of no AFOs, you can imagine what my feet looked and felt like, and my knees felt horrible too. Now, no foot and knee pain (!), but like everything else, it's a trade off. The weight of the braces is terrible, and knee socks in July are just wrong. Goodbye cute clothes!

Just curious, what is your functional level? Do you walk with crutches/canes? Are you an independent walker? How about chair use? How about you, Steffers? How do you get around? Just curious, if you're willing to share. I'm 26, spastic diplegia. I've been a part time chair user for almost my entire life. I think that's really helped save my joints to some extent, and has been the reason why I've kept going all these years. When I'm not in the chair, I use crutches outside, and walk independently in my house and around my yard.

As for contractures, I'd say it's a pretty good bet that all major affected muscles have some contracture at this stage in the game-- it seems like things start to "freeze up" in our late teens and 20s. I have major hip flexor contracture, adductor contracture, and gastroc contracture. I'm of the opinion that no amount of stretching can stave off contracture if it's going to happen. This is coming from someone who has used stretching as a pain management technique. I've stretched almost every day for as long as I can remember, and still have contracture. Kind of a fact of life for us spastic types :D

Nicki

My doctor previously said he wanted to do all that, AND break my hip bones and put a plate on them to keep them in the right position (I forget the technical name of that)...my parents DID NOT want to do the hip thing, so we stopped going to that doctor althogether for 6 or 7 years...which is the reason why I am having hamstring lengthening so "late" now, the dr. magically did not think I needed the hip thing anymore the next time we went. :)

I think that was a good call, on your parent's part. I know a lot of adults with CP in their 30's and 40's. Some have had major invasive surgery, some haven't. They all seem to still have the same complaints-- pain, fatigue, weakness, whether they've had surgery or not. I've learned over the years that surgery isn't the cure-all, but it can keep us up and walking for a little while longer :) Now that you mention it, though, I'm curious as to where my hip bone is in relation to the socket. I haven't had a hip xray since I was 16!

I cannot walk independently, I have to use a walker, and I also have wheelchairs for long distances (an electric one for school and a manual one for everything else--I have basically no arm strength so people have to push me in the manual one...I would just use my electric one, but we don't have a van with a lift so the manual one is a lot easier to transport). Didya wanna know all that? :)

One of my reasons for getting the hamstring surgery is I hope I will be able to use crutches instead of a walker afterwards...right now I am so bent at the knees and waist that I don't have enough balance for the crutches.

I had a hip x-ray a couple months ago, and they are a little turned in, but they are not bad...on the x-ray I actually couldn't even tell that they were turned, they just looked like a normal ball-and-socket joint to me (shows how much I know, LOL). If it weren't for the fact that I have a sort of indent in the hip area when standing, I wouldn't think they were messed up at all...do you have anything like that Nicki, or can you feel your hipbones at all (with your hand)? I am really skinny, so maybe that's the only reason I can :). (Does anyone know if being really skinny is a common symptom of CP, because the muscles have to work so hard?)

Ok sorry so long...

I cannot walk independently, I have to use a walker, and I also have wheelchairs for long distances (an electric one for school and a manual one for everything else--I have basically no arm strength so people have to push me in the manual one...I would just use my electric one, but we don't have a van with a lift so the manual one is a lot easier to transport). Didya wanna know all that? :)

Sure! Thanks for sharing! I think one of the drawbacks of this board is that we don't really know how everyone gets around, or what type of CP everybody has. I think it's easier to share things/make recomendations if we know this stuff! How about power assist wheels for your manual? They are wheels that have motors in the hub. They attach to your regular chair. The motors in the hubs provide 90% of the power, and your arms provide on 10%. But really, all you do is tap the wheels and the chair just flies! They pop off the chair and into the trunk really easy, just like the wheels on your manual. I tried out a pair today, and we are ordering them for me next week. They are so cool. The bad thing is that they're really expensive. But, insurance covers them. Maybe something to think about in the future?

One of my reasons for getting the hamstring surgery is I hope I will be able to use crutches instead of a walker afterwards...right now I am so bent at the knees and waist that I don't have enough balance for the crutches.

I hope the hamstring surgey does the trick for you! I think trying to go from walker to crutches is a great goal! Do you use a Kaye Walker (the kind that wraps behind). I ask because I've been thinking about getting one for days when the AFOs make my balance really bad. I'm really bent at the hips, when I wear my AFOs, so I know what you're talking about. Drives me nuts!

I had a hip x-ray a couple months ago, and they are a little turned in, but they are not bad...on the x-ray I actually couldn't even tell that they were turned, they just looked like a normal ball-and-socket joint to me (shows how much I know, LOL). If it weren't for the fact that I have a sort of indent in the hip area when standing, I wouldn't think they were messed up at all...do you have anything like that Nicki, or can you feel your hipbones at all (with your hand)? I am really skinny, so maybe that's the only reason I can :). (Does anyone know if being really skinny is a common symptom of CP, because the muscles have to work so hard?)

I can't feel my hipbones, any more than normal. But, what little girl-fat I have is on my hips! I'm glad to hear your hips are pretty much where they are supposed to be. And, you're right, people with spastic CP tend to be skinny. There's a few reasons for this. One is prematurity-- if we're born premature (as most spastic diplegics are) sometimes we just don't catch up. Two, spastic muscles burn a lot of calories. We can get heavy, though, as we get older, and extra weight makes it even harder to move. I guess the answer is to keep moving in whatever way we can! I talked to a nurse at my clinic a few weeks ago about the baclofen pump. She said one of the side effects they see in clinic is weight gain because the medicine "quiets" some of the spasticity, and not as many calories get burned. I'm tiny too, btw: 4'11", and I weigh about 90 lbs.

Ok sorry so long...

Don't be sorry! I'm glad there's actually some activity on this board again. It was so quiet for a while!

Nicki

Nicki, I'm between levels I and II according to GMFCS :)

Kat

Textbook level III here. I love the GMFCS. I keep up with the psychosocial literarture on CP, and I don't understand why more people don't use this tool. It's so straight forward. It keeps everyone on the same page.

Nicki--

I've never heard of those wheels for a manual chair...that's awesome! I do have a Kaye walker (I think it is called "posture control Kaye walker" or something like that). I feel a lot more comfortable using that than crutches because balancing is so much easier...although I hope I can use crutches after the surgery because then I won't have to worry about steps and stuff when I go somewhere. :)

Well glad to know I'm not the only one who's really skinny... I'm 5'2" (or I would be if I stood up straight) and weigh 96 pounds. Having a high metabolism runs in my family, though, so that is probably part of it too...I actually eat a LOT, I just don't gain any weight :D

Steffers,

They're called e-motion wheels. They have a website. You really should check them out. I am ordering them on June 18th! They're very expensive (about $7000), but we're trying to get vocational rehab to pay for them. Hoping, anyway.

I'm sending you good thoughts for your surgery tomorrow! I'm sure everything will go well. Just give that body of yours the time it needs to heal!

Take care,

Nicki

Nicki, I'm between levels I and II according to GMFCS :)

Kat

me too! I'm closer to level II, but not quite there. I like this a lot better then those "mild/moderate/severe" labels :bouncing:

Hey people,

I just wanted to say thanks to everyone who said they would pray for me or think of me, because it is only 3 days after surgery and I am doing great. I hardly have any pain anymore and have been up and walking around...now I only hafta last a month with my legs sticking straight out. :)`

This is such great news!!!!!!! :bouncing:
I've been thinking about you, Steffers. Hang in there!

Nicki

Glad you are doing well Steffers !!

NJenn remember how you wanted me to tell you about the psoas lengthening? Well, I'd love to but my doctor didn't do it...originally he said he was doing those along with the hamstrings and would see about the adductors during surgery, but then he ended up just doing the hamstrings and adductors. I guess he decided that would be more beneficial...but if I end up still being flexed at the hips I'm gonna be mad, LOL.

Right now with the casts on I am a lot taller, hope it stays that way :)

Wow Steffers, I'm glad you are doing so well! I was soooo sick after my hamstring lengthening, I was supposed to stay overnight and ended up in the hospital for a week. I bet you will stay taller, at least for a while! I was near 5'7" after I got my casts off, and before that I was 5'4"! Of course I shrunk back down to 5'5", but that inch is really important when the rest of your family is like 6 feet tall, lol.

Wow Steffers, I'm glad you are doing so well! I was soooo sick after my hamstring lengthening, I was supposed to stay overnight and ended up in the hospital for a week. I bet you will stay taller, at least for a while! I was near 5'7" after I got my casts off, and before that I was 5'4"! Of course I shrunk back down to 5'5", but that inch is really important when the rest of your family is like 6 feet tall, lol.


I usually get sick from anesthesia but they gave me a different kind this time and I wasn't sick at ALL...they were giving me crackers and ginger ale a couple hours after and I wanted REAL food :)

Aww don't tell me you got shorter, I wanna stay tall!! :( What happened, did your muscles get tight again? Did it take a while or did you "shrink" right away?

Sorry I put the same message twice :)

Hi Steffers,

Congratulations on getting through your surgery. I think we should trade info; you and I seem to have a lot in common as far as what doctors have told us we've needed. I had hamstring surgery when I was 6, which I barely remember, but will most likely be having it again next winter. Did you say you are in casts now from that? How long will they be on? Are they telling you you're going to be weak for a while or pretty strong right away? Let me know!

I had the hip surgery you were talking about this past January, in addition to adductor (muscles that allow you to keep your legs together) lengthening on one side. The surgery has made my abductors (the muscles that allow you to move your legs out away from you sideways) very weak. Also my left hip flexor(s) is/are weak now. According to my doctor it's taking me a long time to heal because of my age (an ancient 29), but honestly I don't know if I buy it or if he's just trying to keep me calm. If you at some point want to know anything else about this surgery I would be happy to tell you about it. Sounds like you are cool with not having had it, though.

My muscles got tight again. It wasn't right after the surgery, but I'm not too sure how long it was before they started getting tight. A little tightness helped with the back-kneeing though, so it was ok.

Hi Steffers,

Congratulations on getting through your surgery. I think we should trade info; you and I seem to have a lot in common as far as what doctors have told us we've needed. I had hamstring surgery when I was 6, which I barely remember, but will most likely be having it again next winter. Did you say you are in casts now from that? How long will they be on? Are they telling you you're going to be weak for a while or pretty strong right away? Let me know!

I had the hip surgery you were talking about this past January, in addition to adductor (muscles that allow you to keep your legs together) lengthening on one side. The surgery has made my abductors (the muscles that allow you to move your legs out away from you sideways) very weak. Also my left hip flexor(s) is/are weak now. According to my doctor it's taking me a long time to heal because of my age (an ancient 29), but honestly I don't know if I buy it or if he's just trying to keep me calm. If you at some point want to know anything else about this surgery I would be happy to tell you about it. Sounds like you are cool with not having had it, though.

Hi!

Yep. I am in casts now, from the top of my thigh to my ankles...they only hafta be on a month, which is a good thing since it is really annoying to have your legs sticking straight out... I only have 22 more days left actually :D

I also had adductor lengthening at the same time. My doctor told me I have to walk around a LOT because the muscles get weak, which I am pretty much expecting to happen even though I've been walking around. Oh well. The pain so far hasn't been that bad, I thought it would be a lot worse, so don't worry about that if you have the surgery later.

I doubt I will ever have the hip surgery...my hips aren't even that bad and it doesn't seem worth it. I figure I will always be somewhat "messed up" and as long as I can walk around without pain I don't care. :)

Are you in waterproof casts yet? If they do change them to those ask if they can pad the bottom a little. It was awful when I had them on because they slid down and cut my ankles, it really hurt! But I could go swimming in them, and that was a big plus in the middle of the summer!

We asked about the waterproof casts, but my doctor said those were more for smaller casts or something like that (:rolleyes: ...whatever) My regular casts aren't bad on my ankles (so far, anyways) because they put lots of cotton down there...I guess you can't have that on the waterproof ones though :)

<sigh> I guess I spoke too soon about being perfectly fine...when I left the hospital, the only thing they really told me was, "Watch for feet swelling and toe numbness, and if it happens, call the doctor..." Well, yesterday my big toe and second toe were "tingly" and red and swollen on one foot, and so was the knuckle of my big toe....it's a little better today but I hafta go to the doctor later. :(

Did this happen to anyone? Is it because the cast is too tight somewhere?

It sounds like it. Let us know what the doctor says. Good luck!

My doctor said I have arthritis in my "toe joints", and because my knees have been straight in the casts it has put a lot more pressure on them than normal...so basically it's just swelling because of that...which is sorta good, I guess.

Sorry to hear that. Can you treat the arthritis easily?

I have had my hamstrings done at least twice. (I've had 5 surgeries, can't remember what was done when) The first time I had them down I was nine years old and didn't have a problem and the second time I was 17 and had even less of a problem. Maybe I am just lucky though! Hope this helps. :cool:

Katy and Spencer (service dog)