Small Rod Surgery

[Sara]

I am 24, an American Student going to University near Hamburg. I am looking into having surgery for my scoliosis while I am here. I saw a doctor last week, and he recommended a five centimeter rod placed in my lower curve, and another rod placed in the upper curve. This is new, I have only heard of the Harrington Rod, where the Rod is about 30-40 centimeters. I have beed doing extensive amounts of searching online, and can find no information on two small rods for scoliosis surgery. Maybe these rods are unique to Europe and/or Germany, maybe I am looking on the wrong sites, (my deutsch isnt good enough to surf the .de sites) but I truely need to find information. Also maybe there is information out there on a good doctor/surgeon/scoliosis treatment center near Hamburg?
Please help

[BZebra]

Welcome Sara!

First of all, may I ask you how strong your scoliosis is? How many degrees have you got?

This is new, I have only heard of the Harrington Rod, where the Rod is about 30-40 centimeters. I have beed doing extensive amounts of searching online, and can find no information on two small rods for scoliosis surgery. Maybe these rods are unique to Europe and/or Germany, maybe I am looking on the wrong sites, (my deutsch isnt good enough to surf the .de sites) but I truely need to find information.

Harrington surgery are no longer up-to-date in Germany for i guess nearly ten years now.
This is probably what you are lokking for: Halm-Zielke instrumentation

Cuurently the most reccomended clinic for scoliosis surgery in Germany is Schön-Kliniken in Neustadt / Holstein.
For further Information about the techique search the http://www.pubmed.com driectory for scoliosis and halm.

Also maybe there is information out there on a good doctor/surgeon/scoliosis treatment center near Hamburg?

We actually don't know ANY (!) good doctor, surgeon or scoliosis treatment in Hamburg. Neustadt / Holstein is quite near and at the same time leading in scoliosis surgeries, but for non-surgical treatment you should better go to the southern parts of Germany.

Maybe non-surgical treatment is still an alternative for you, depending on the degree of your scoliosis. If it is around 50 Degrees it is certanly worth tried befor surgery, even at the age of 24. Surgery can still be avoided then.

BZebra

[Sara]

My curve is currently about 48 deg, this has changed over the past two years, it was 37 deg, its getting worse. I am not sure if this measurement is my upper curve or my lower... just another question to ask the doc on my next visit.

I was in a brace from age 14 to 17, and it did actually correct my degree down to 25. My body responds well to treatment. But its been years since I have done anything about it, and currently the pain is unbearable and affecting my life greatly. I never leave my bed anymore. Pain killers do not work, and I am feeling desperate.

I have been treated by chiropractors for the past four or five years. Thou, regretfully, the last one to treat me, seemed to increase my pain. I would definitely consider all options, especially non-surg. I just want something done now, something that will fix me for good.

I am happy to be in Germany. Its more refreshing then the United States. I wonder if there are differences in treatment here, that I am not aware of. I wonder truly what are my options.

What exactly are my non-surg options? Brace? Chiropractor? Yoga (I don’t have the strength to do yoga)...

I am going to inquire further with the surgeon about non-surg options, maybe I can get another brace. When I was younger, I had my parents to do all my worries. I am a strong, educated woman now, and yet I have no clue what to even ask the doctors. I feel so overwhelmed and lost. I wonder if you could guide me... Do you know :

1. Other options I could inquire about (maybe I don’t know about)
2. What works? (I get so frustrated, thinking nothing actually works!)
3. A list of questions to ask the doc.
4. What am I missing?

Another question I have, maybe you would know.. If I was in a brace, and I was corrected to a wonderful 25deg curve.. does it ever stay there? Do braces actually fix it forever.. or does it always come back? Does it vary from person to person?

I appreciate this site, I appreciate there are people out there that care to help. Its wonderful. Thank you for your responses and all your help.
Sara

[netkitty]

Another question I have, maybe you would know.. If I was in a brace, and I was corrected to a wonderful 25deg curve.. does it ever stay there? Do braces actually fix it forever.. or does it always come back? Does it vary from person to person?

It depends on how long you wore the brace.
Mostly braces are not worn long enough, after growth is completed most doctores say that tere is no more correction possible. That`s only half right. The correction has to be fixed, by wearing the brace overnight for another few years.
If you had worn it until the age of 24, the correction would have been possibly fixed forever.

I am happy to be in Germany. Its more refreshing then the United States. I wonder if there are differences in treatment here, that I am not aware of. I wonder truly what are my options.

Here in Germany we have a special kind of physiotherapy for scoliosis.
It mainly works with directional breathing to derotate the chest.
It is very sucsessfull in scoliosis treatment but you can only learn this special gymnastik here in Europe and best in Germany.
Here we have two sanatoriums where you can learn it during a 4 weeks stay.

But its been years since I have done anything about it, and currently the pain is unbearable and affecting my life greatly. I never leave my bed anymore. Pain killers do not work, and I am feeling desperate.

I wear a brace for pain relieve and it helps me very much.

A 48 degree curve does not necessarily need a surgery.
You should try a brace for pain relieve first.
Surgery shoult be your last option, not the first.

Nicole

[BZebra]

I agree with netkitty. There are only very few cases in which surgery at only 48 deg is really necessary. There are far better and healthier pain killers than that where you don't have to take such a big risk.

I was in a brace from age 14 to 17, and it did actually correct my degree down to 25 [...] If I was in a brace, and I was corrected to a wonderful 25deg curve.. does it ever stay there? Do braces actually fix it forever.. or does it always come back? Does it vary from person to person?

Yes, braces can fix the correction for ever, but only under certain circumstances: First of all you have to begin bracing therapy before your growth is completed and secondly you really have to ware it, at least during night, till you are 21.

I was in brace from 13 to 18. From 18 on I wore it only during night time till I was 23. Now I am 25 and my curve is stable at about 30 deg. When I started bracing at the age of 13 my curve measured 58 degrees.

I wonder if there are differences in treatment here, that I am not aware of. I wonder truly what are my options.

What exactly are my non-surg options? Brace? Chiropractor? Yoga (I don’t have the strength to do yoga)...

You can for example ware a brace during night time. We've got a number of users (netkitty 35 years old, Allegra 28, Faultier B. 33, bluecat 24, sloopy 24, Tina1981 22, Toni 49, gerhard 32 ... ) in this forum who do this for pain reduction (quite successful) and also for stopping curve progression.
This is - except for the adaptation problems in the beginning, but I guess as a former brace-wearer you are aware of this - the easiest und most efficent way.

For bracing therapy we recommend to go to Stuttgart (all of the users I mentioned above have their brace from there). You should discuss this with a doctor there (Dr.Hoffmann, address see our [target=http://skoliose.net/forum/links.php#Korsett-Therapie]links section[/target]). If you then decide wearing a brace again, he will directly send you to http://www.rahmouni.de.

Unfortunately it doesn't make much sense discussing bracing therapy for adults with a surgeon or a doctor who is not specialised on non-surgical scoliosis therapy (there are only 3 or 4 real specialists in Germany).
They don't have any experience with that therpy and surgeons, of course, don't want to see this as a serious alternative to surgery, but it definitly is.

But their attitude is also understandable: In Germany 80% of all braces are no good. There are only very few places to go for getting a good brace. One of these places is www.rahmouni.de, probably the most experienced one. This is aswell the place I was send to many years ago to get my brace.

Another therapy which also can/should be combined with bracing is a stationary orthopaedic rehabilitation for about 3 or 4 weeks in this clinic: Askelpios Katharina Schroth Klinik.

You will be teached there a specific physiotherapy against scoliosis and you will get an exercise program to do at home especially designed for your curve-pattern.
In Hamburg you will afterwards have the possibility to visit, for example one time per week, a physiotherapist who was trained in that clinic to make sure you are doing your exercises correctly.

You can't compare it with yoga, it's far more specific and successful. Actually yoga is not at all a therapy against scoliosis.

--

So, what you should do next is arranging an appointment with Doctor Hoffmann in Leonberg near Stuttgart. You should mention that you are maybe interested in a brace, to make sure that you get an appointment after which you can directly go to Stuttgart to Orthopädietechnik Rahmouni for the model of cast. Otherwise you will have to come another day.

In case you decide not to get a brace, it is still a very good place to go. He will fill in the application forms for a stationary rehabilitation.
As a native English speaker with difficulties in German you should choose the clinic in Sobernheim. There already have been many patients from abroad who didn't speak German at all, so they have got experience with understanding problems. It's also the clinic were the method originally was develeped and they've got very experienced staff.

A visit at Dr.Halm in Neustadt should at the moment not be necessary for you.

I appreciate this site, I appreciate there are people out there that care to help. Its wonderful. Thank you for your responses and all your help.
Sara

You're welcome.

BZebra

[BZebra]

By the way, with Surf&Rail you can get a ticket from Hamburg to Stuttgart and back for only 50 € if you book early enoughe (ervery Monday morning).

Or you can travel during night for 29 € one way: Sparnight.

Greetings,
BZebra

[Tomma]

Or you can travel during night for 29 € one way: Sparnight.

Somebody said, this ticket does not exist any longer.

[Sabi]

@ Tomma


Sparangebote der Deutschen Bahn
Also a friend of mine (guess who it was ) told me this week that this ticket still exists.

The somebody must have told you something wrong.

Yours Sabi

[Sara]

Hello Hello Hello.

Its been a year.

I am now 25. I am now an American Student, studying in Bangkok. Hey, life is good, but my back isnt better...

I took your advise, (thank you again) and went down to see Dr. Hoffman, who immediately fit me for a brace. It has butterflies on it!

In Jan 2004, I had a new brace.

The thing kills me. It hurts so much. Over the last year, I have been trying so hard to work up to the 20 hours, wearing time, that he wants of me. I cannot.

The problem for me lies in the second hour. I put the brace on, and it is fine for about forty minutes. After which, it begins to hurt me so badly, and I wanna rip it off, and throw it across the room... I can only bare it for about an hour. And I believe my record of longest time wearing it was only two hours.
And then theres the wearing of it each day... I do not even make an attempt each day. I will go weeks without trying to put it back on again.

I think back to when I was 14 and got my first brace. I loved it. I took to it immediately, and was wearing it to sleep the first week I had it. Why should things be different now?

hmmm... I get older. Time goes by, and I am living my life... but things dont get easier. I sometimes hate my back so much, all the problems it causes, and I dont know how to fix it.

[micros]

Hi Sara,

I'm glad to read your lines!
I was wondering what you did and I am really happy that you went to see Dr.Hoffmann.
I know that wearing a brace is hard, really hard
But I think you can get it.
You should not compare the Rahmouni brace to the old one.
I suppose your old brace wasn't half that corrective than the Rahmouni one is. You should also consider that your curve was 37° and you were younger and therefore your spine was more agile/flexible, now you have 48° and your spine isn't that agile than it was( but this also means that your spine won't get worse easily).
I didn't wear a brace. I just can recommend you what I was told by people who wear a brace. I'm just gonna sum up some points:
- you don't have to close the brace completly, that means you can wear it
while the "lines" aren't drawn together, so it's not that tight.
- make breaks, try it for an hour, make a pause and then try it again
- do you have hematomas or something like this because of wearing the brace? If so, try some special creams like PVC 30 ( I think that's what Toni recommends often). I think you can buy it at Rahmouni.
But when will you see him again? you are now in bangkok.
- Don't give up!!
Believe in you and you will make it!you will bring home the bacon! ( do you really say this? I found it in an online web-dictionnary)
It's hard, I know, but it's really worth it!!
And it would be very good if you go to the Katharina-Schroth KLinik in Bad Sobernheim or to Bad Salzungen to learn "Schroth" physiotherapie.
I suppose you've been told about this by Rahmouni and Dr.Hoffmann,too.

I wish you the best

[BZebra]

I just gonna sum up some points:
- you don't have to close the brace completly, that means you can wear it
while the "lines" aren't drawn together, so it's not that tight.
- make breaks, try it for an hour, make a pause and then try it again
- do you have hematomas or something like this because of wearing the brace? If so, try some special creams like PVC 30 ( I think that's what Toni recommends often). I think you can buy it at Rahmouni.
But when will you see him again? you are now in bangkok.
- Don't give up!!

Hello Sara,

nice to hear from you again.

I can only underline what micros already said. There are certain "tricks" you need to know, otherwise it's rather difficult to get used to the brace.

First of all you should concentrate on ONLY wearing the brace by night (in bed).
20 hours per day is in my opinion too much for somebody who is already grown up and I believe not necessary any more.
Wearing the brace only by night will already keep your curves stable and will prevent progression.

Secondly you should try sleeping with the brace, and in the beginning DON'T close it at all (or maybe just a little bit, if you feel more comfortable then).
And very important: Try not to throw it out of your bed a few hours later, try to leave it on the hole night.

And then, finally, if you manage to sleep in the open (or hardly closed) brace over a hole night, then you can start closing it a little bit more, and more, and more ...
You will be able to close it increasingly, not at least because of the "foam pads" (?? in German "Pelotten"), which will get thinner with the time, because of the pressure coming from your body (and that also makes it more comfortable to wear ).

My own experiences were the following:

During 5 years, in which I only wore my brace during night (in 4 years of them, I neither went to a doctor nor to Rahmouni for inspection) I could hold my curves stable at about 30 degrees without any effort, just by wearing the brace during night, taking me only one or two minutes per day for putting it on before going to bed and putting it off after getting up in the morning.
After these 5 years at the age of 23, I tried it during two years without brace, only wearing it from time to time against pain, whenever it occurred.
I didn't have major problems then, I just noticed that I lost height. So I went to Dr.Hoffmann again and let make a new x-ray. This x-ray showed about 8 degrees more cobb angle and about 6 degrees more rotation.
Well, after that I decided to restart wearing my brace like I did before, and, luckily, I got back my missing centimeter. So I guess one can presume, that my spine must be a bit straighter now, as an effect of the nighttime brace.

All in all you can say, that the brace kept my curve stable during 5 years (I've got 3 x-rays out of this time with about 30 degrees) whereas I couldn't hold the curve without the brace during the 2 years afterwards.

Thats why I can just recommend this brace, even if it is only during night. There is no therapy whatsoever with such a great efficiency compared with the effort (1-2 minutes per day ).
It doesn't even hurt when you are used to it, on the contrary, it gets rather comfortable.

Don't be too ambitious!!! Don't try to close it completely and do not want to wear it 20 hours a day.
Wearing the brace during daytime naturally handicaps you, but it doesn't when you are asleep. You've got nothing to do while sleeping.
And don't torment yourself with your brace. You are supposed to wear it over a long time (many many years), so in the long run it should rather be comfortable for you and not be a burden.

Keep trying, don't give up, but do it slowly and less ambitious.

Another thing (which is hardly your concern at the moment, but which you should know): If you wear the brace every night, the corrective effect will naturally wear of, due to the "Pelotten" which get thinner with the time.
If you want them to be replaced one day (for a better correction, a better effect), don't go somewhere near you (wherever you are then) but send the brace to Rahmouni per mail with the request of a renewal of the Pelotten and pay for this privately. Comparatively it doesn't cost so much, after all it's not a hole new brace. But if you go to somebody near you, they will mess it up. Rahmouni is using a special material for his "Pelotten", which is produced especially for him, and which has certain qualities to make it more easy to tolerate the necessary pressure (yes it does ) . You cannot use any material for this kind of brace, it would hurt so much, you would be dying (even more ).

So, I wish you Good Luck and success with your brace.
And if you have any questions: ASK!!!

The most important thing is not just to do something, no matter how, but to do it CORRECTLY, otherwise one doesn't succeed.

Cheers ,
BZebra

[Sara]

You guys are great! Really... I need information like this, and I am happy there are people that know what I am going through. The encouragement is the best!

So, I will try to wear my brace tonight, leaving it open.

Sometimes I try to sleep in it, I think I did so one time for three hours.

Bzebra, do you sleep on your back when you wear your brace? I typically sleep on my side, and it is impossible to do that with my brace on. It seems I can only lay on my back when I have it on, and it is hard for me to sleep on my back.

I have been having many symptoms lately... so so many! But two are really bothering me:

1. I think my breathing is becoming disturbed. I think that I often stop breathing when I sleep, and this frightens me. I also have such bad heart beats, that skipping heart beat, or speeding up... I think I will die of a heart attack in my sleep, and that scares me to tears. Have you guys ever heard of someone dying of a heart attack caused by scoliosis?

2. The second symptom I wonder about: I am tired twenty four hours per day. I tell my friends that I am lazy, but its not true. I am just always tired, and its been progressing over the years, becoming less and less active, and laying down more. I think it can be connected to my scoliosis, since it hurts even when I carry my purse as I walk from my car to the store (and my purse isnt that heavy). Is this common??

Just some additional updates: I am back in the states now. I have plans to travel back to Germany this summer, and I am hoping to stop in and see Dr. Hoffman... though, I am not sure why, if I havent even been wearing my brace. But, I will keep in mind the idea of my foam-padding needing touch ups, as I continue my visits to Germany, I will have that taken care of.

Thanks again for everything!
-Sara

[Sandman77]

A friend site of mine is http://forums.scoliosis-support.com/

many around Asia region post there. Worth a visit

Plus of course www.scoliosislife.net <- my site

All I can say if the brace hurts to much go and get it adjusted, you need to wear if it is to do any good!

I wore mine for 6 1/2 year 24 hours a day...
After surgery though...

[Sara]

I forgot to mention, also:

I have been seeing my Chiropractor here in the States, twice a month. He stretches my back, shocks the back muscles, and then does the adjustments. I am also wearing a lift in my shoe.

Is there a possibility to ever actually get better without surgery? I wish to do the brace and the therapies and the shoe lift, and everything else...

I wish to get my height back!

-Sara

[anne]

Hallo Sara,

I'm afraid, my English is not very good (it's a long time since I've learnt it at school) but I will try to give you an answer.

1. I think my breathing is becoming disturbed. I think that I often stop breathing when I sleep, and this frightens me. I also have such bad heart beats, that skipping heart beat, or speeding up... I think I will die of a heart attack in my sleep, and that scares me to tears. Have you guys ever heard of someone dying of a heart attack caused by scoliosis?

2. The second symptom I wonder about: I am tired twenty four hours per day. I tell my friends that I am lazy, but its not true. I am just always tired, and its been progressing over the years, becoming less and less active, and laying down more. I think it can be connected to my scoliosis, since it hurts even when I carry my purse as I walk from my car to the store (and my purse isnt that heavy). Is this common??

These symptoms belong to one problem. There are some scolioses with consequences to the diaphragm (I hope the translation ist correct, in German it is called Zwerchfell). My doctor explained it as followed: When people breath they breath, but when someone with a scoliosis (high degrees and rotation) breaths, he works. And everything that works wants to retire and relax one time. But as we won't stop breathing when we are awake we will do so, when we are asleep and lose controll. These time without breathing can last rather long, 40-60 seconds and that 30 or 40 times in an hour. Consequence is, that oxygene in your blood gets very low and you will get head ache, your heart begins to beat faster, to bring more oxygene through your body and your brain will give an alert to wake up and what you feel is your heart beating very strong, and your blood roaring in your ears. It is impossible, to get a relaxing sleep (deep with alpha-waves), because your brain gives signals to wake you up, when the oxygene is too low. It is obvious that you are tired 24 hours a day. These are the same symptoms as people with sleep apnoe have but the reason is different.

I had all these symptoms and went to a doctor (pneumology) who luckily had experiences with scoliosis and breathing problems. Since then I have got an equipment, that blows air into my lungs while I am sleeping. I tell you, the first night with this apparation I slept so well and I waked up in the morning relaxed and felt very good and strong. I got used to it very fast and as the qualizy of my sleep has got so much better, I don't want to miss it any more and it accompanies me wherever I spent a night, holidays, workshops, visits. The equipment is called ResMed VPAP II ST.
If you want to get more information look www. resmed.com.

My advice is: go to a pneumologist (is this the correct word?) and get a date in a "Schlaflabor", where they take all the measures they need for a complete diagnosis. If it is necessary get used to a sleeping mask and you will see life is so much better. If there is no therapy there are riscs for cardiac infarct and apoplectic fit when you get older.

If there are more questions about it, please aks me. I hope my English was good enough to get understood, I'm better in reading than in speaking.

Anne

[Manue]

Hi sara and anne

i have read your texts and i have these symptoms too, and so i cant sleep tonight, but it's not always. I am 14 years old and wear a corset 24 hours a day but my gradzahlen no are very high 35° and 30° and the rotation is no too much
What can it be? every morning i wake up i am tiered (i wear the corset at night too)
thanks for answering mi
manuela

[Sara]

See, its the encouragement! It works man!

I put my brace on last night, before bed, and I closed it only slightly. I was able to sleep the whole night wearing it. Thats a new for me. I was even able to sleep on my side.

I am totally surprised, and shocked. I dont know why I didnt think of that before... and yet, I know now that it is only a matter of time before I will get it closed. I really should have asked you guys about this earlier... to think, I would have been a year ahead... but better late then never.

Anyhow, thanks again.

-Sara

[anne]

Hallo Manuela

what you need ist a qualified diagnosis. Ask for an investigation in a "Schlaflabor". Only a doctor of pneumology can send you there. The diagnosis they should look for is in German "Atempumpenschwäche".
If they confirm it, you should take it serious and get therapie. If not, you must look for other reasons concerning your symptoms.

Anne