The epidural is a great idea but when I was researching my Spina Bifida I came across several references that did not advocate it for people who suffer the more severe symptoms and unfortunately I am one of the 10% who does.

I have a persistent and degenerative deformity of both my feet that the surgeons believe is caused by a muscle imbalance arising from the Spina Bifida. It wasn't dealt with in childhood, despite being obvious, and I didn't have surgery on my spine until I was in my mid-30's, which doesn't seem to have worked.

When they did try to give me an epidural they made at least 8 attempts, I actually lost count, but they all failed and left me in considerable pain until the general anaesthetic took effect. I am not keen to repeat that experience unless absolutely necessary, the surgery itself is painful enough!

Anyway, everything went well and the anaesthetist assigned to my surgery already knew which chemicals to avoid. He was very good to me and didn't seem to mind that I had educated myself on my condition. I recovered very quickly without any other discomfort other than a sore throat from intubation, but that always happens.

I hope anyone else who is facing surgery will use your fact sheet too, it really does give you the sense that you have a say in your own medical care.

Thanks again!

Type of Myotonia: Becker's

Country: England

Pete,

Will you be wearing a brace after the frame is removed? I've had a couple of friends with similar issues and they did seem to improve. It's a shame they didn't catch it early but spinal surgery is pretty scary for kids (and hard to keep them still afterward!). I hope you see some encouraging results when the frame is off.

I don't want to beat the topic to death, but I do want to explain that epidurals and spinals are two different things. Epidurals are called spinal anesthesia because they are in the space around the spine called the dura. The anesthesia never mixes with the spinal fluid (unless the doctor punctures through which does happen). A spinal is one shot of local anesthetic put directly into the spinal canal, whereas an epidural is a drip fed by a catheter into the dura.

I have seen many epidurals fail in normal, healthy women when I worked in labor and delivery. I don't think I would ever personally trust them for surgery like a C-section, knee replacement, etc. There can be patches that don't get anesthetized properly. Like you mentioned, some people are much harder to get anesthetized than others depending on the specific structure around their spine and even the condition of the paraspinal muscles - if they are well developed it can be difficult to insert the needle and feed the catheter. And unfortunately some anesthesiologists are just plain incompetent. At our hospitals they generally get two tries to do the epidural and if that doesn't work they have to call in another doctor. The only exception I saw was a military hospital and the guy was totally inept...I had to leave the room because it made me so sick to see how he bungled the insertion over and over.

Spinals definitely have a bit more risk but they always work. You are completely numb from the level of the injection down for hours. The main risk is infection or a slow leak of spinal fluid in the injection spot which can cause a headache, but is easy patched by using a few drops of your own blood. I had a spinal years ago with no side effects at all.

After your experience it makes sense to go with the general anesthesia, but I just wanted you to know that there is an option other than an epidural if you ever need the regional anesthesia instead.

Jan

Type of Myotonia: Thomsen's

Country: US

jan , this whole conversation is on anesthesia is very unnerving for me. this is kind of embarrassing but i had a Colonoscopy back 10 years ago and i'm due for another one sometime in the near future. when i had my first one i tried to tell them i might have to be careful with anesthesia , i even made them call my neurologist to make sure it's ok. he told them not to worry that it was ok. but i'm finding out that anesthesia is dangerous?

Type of Myotonia: becker

Country: USA the best !!

Ron,

Unfortunately many neurologists and other doctors who treat MC are totally unaware of the potential problems. We have to be our own acvocates in this area - the anesthesiologists take it very seriously.

A colonoscopy generally uses IV sedation anesthesia like Versed, Fentanyl, and/or Propofol so you should be fine. You are actually conscious and can respond to questions but won't remember it afterward.

It's the inhalation anesthesia like Halothane that can cause the problems as far as sedation. By far the most dangerous drug is a paralyzing agent called succinylcholine. If you are having actual surgery this is given to keep you from moving. Your breathing will become paralyzed, too, so you are on a respirator during that time.

With any type of procedure it's always good to mention to the doctors the potential for reactions with MC, and you need to tell the anesthesiologist both at the pre-op and again just before the surgery (since you often see a different doctor for pre-op and they may not convey it properly in the notes).

I once refused to let my mother get colon surgery until I could speak to the actual anesthesiologist who would would be monitoring her during the surgery. He came in just as they were getting ready to wheel her off to the OR and everyone acted put out that I was so insistent and holding up the schedule.

Even though I had given them extensive information during pre-op and they knew that my mother had suffered cardiac arrest from the MC during a previous surgery, the doctor on duty did not read through all the notes and would have used the same triggering agents that almost killed her before. You can't be too careful!

Jan

Type of Myotonia: Thomsen's

Country: US

I don't think that you are overdoing this topic Jan, it deserves to be discussed extensively. I was interested in your comments regarding the difference between an epidural and a spinal anaesthesia. When I had the frame fitted in June he definitely suggested an epidural to me and that brought back the bad memory, perhaps a more skilful doctor could apply one successfully but I remember all too clearly sitting on the side of the trolley and gripping a nurses forearm; I thought that it was to stop me from falling not to help me deal with the pain about to be inflicted!

I presume that in America patients have a right to discuss their treatment just like we do here in Britain? It certainly helps to do so as it made me feel more like an active participant in the decision making process than just a lump of meat on the operating table and I would encourage every MC sufferer to get involved in their own medical care when talking to the 'experts'.

It should be remembered, however, that everyone faces a risk when going under a general anaesthetic, no such procedure is 100% safe, but the risk is very small even for us MC patients as long as our susceptability to other problems is taken into account.

On the Spina Bifida, the protocal here is to operate on the spine as soon as it is diagnosed and surgeons can now do this on unborn babies. For some reason this was not done in my case even though the protocol existed when I was born, hence the failed spinal surgery when I was much older.

My leg and foot are in a plaster cast at the moment to allow the pin site wounds to heal and keep the bones supported. I'm going to be measured for a leg splint and I may have to wear it for the rest of my life but at least I should be able to walk and stand without the pain I used to suffer.

Next year we're doing the right leg!!!

Type of Myotonia: Becker's

Country: England

Yep, I too cant sing the praises of this site loud enough... also great 'community' spirit

Type of Myotonia: Beckers

Country: UK

I was given a spinal for Fibula/ankle surgery about 11 years ago, and no complications. I remember wondering if myotonia would be a problem. A framed leg you must of really had a bad accident, best of luck with recovery.

Type of Myotonia: Thomsens

Country: USA

Pete,

How are you doing with your post-surgery recovery? I hope the unusual cold there isn't making your myotonia a lot worse!

Jan

Type of Myotonia: Thomsen's

Country: US

Morning...well it is here!

Post op-recovery has gone very well thanks. I'm still stuck with the cast while I wait for a leg splint and boot to be made for me. I'm off crutches and down to a walking stick now, which is how I started!

The cold doesn't really seem to bother my MC, I know it does for other sufferers but for some reason it's never been a great concern for me. The worst part is ice and frozen snow for obvious reasons.

I hope everyone got through that awful weather in North America okay?

Type of Myotonia: Becker's

Country: England