Monday, November 17, 2008

The start of it all - T-Minus two days until ulnar nerve transposition surgery for cubital tunnel syndrome

This is my first of hopefully a bunch of entries on my cubital tunnel syndrome experience. So.. lets get to it : )

Why am I doing this? When I was diagnosed with Cubital Tunnel Syndrome, most information was from the hand centers telling basic causes, treatment, and a very very high level of how the surgery went. Doctors aren't always up front with how a surgery will go. So let this be a log of my surgery experience. (Added note 2.5 weeks after the surgery - hand feels pretty good. using it for light driving, typing is no problem. Walking around during the day now I am surprised at how little I notice I had a major procedure done on it 2.5 weeks ago)

First.. some thanks goes to James:
http://quitelucid.blogspot.com/2006/04/cubital-tunnel-syndrome-part-one.html

He posted his experience which pushed me more to post all of this - it was great he had his info posted, so hopefully this adds to it a bit. There was little out there of people's detailed experience with the surgery and recovery so I wanted to add to the little info out there from a patient standpoint.


Second.. I'm just typing as I think (and watch TV) so forgive the lack of cohesiveness in these thoughts here.

If you need this surgery:
1. Practice one arm activities here and there ahead of time.
2. Purchase floss picks if you dental floss, otherwise you wont be able to.
3. If the doctor doesn't provide anything to put around your arm for bathing (click here for example) then you can buy one or use a trash bag with tape around your arm. Yea.. its rigged but if the doc doesn't give you one you'll find something quick that works. Just keep the arm raised in the shower (or take only baths and not showers for two weeks and avoid this trouble)
4. Make sure you have extra pillows or blankets to raise your arm up on while resting.
5. Have as much stuff around as possible to prevent boredom - netflix is awesome and so is a nice cable package
6. Make sure you have some clothes that can stretch wide easily in the arms to fit around the thick bandage without squuezing it. Some stretchable cotton shirts (ie most t-shirts) have a seam on the sleeve where it is folded over and sewn. That can prevent it from being stretched the amount you need over the bandage. Like I said... its a thick bandage, so just check to be prepared.
7. If you will be recovering mostly alone - either living alone or others around you will be away working/school/etc then you want to make sure the food is easily accessible with one arm and you've bought stuff that can easily be opened with one arm. Note: water bottles are somewhat difficult. You can open them by squuezing the bottle between your legs.. but if its a very flexible bottle then when you twist it - it can overflow on your lap from squeezing the bottle.
8. Train your pet to stay away on command or figure a way to avoid it. My dog kept wanting to say 'hi' and almost jumped on my arm several times untill I figured how to avoid it (pillows on the bed to keep the dog on my Wife's side hehe) and the arm would stay on the edge of the couch during the day.



Useless tidbit: Neurologist said these nerve issues show up more in people that spend first 12 years in east coast/colder climates.

I developed numbness/tingling in my right hand in the pinky and ring fingers about 2.5 years ago. I was pretty sure it was carpal tunnel syndrome, since I worked all day and night (literally) on the computer, doing software development for a corporation during the day, and working in security software for my own company at night. I was on a plane when I first noticed it. About two weeks later the other hand started feeling the same way. It wouldn't go away. It was worse when I worked on the computer. I purchased carpal tunnel braces wrist braces and wore them during the day and at night, but the symptoms didn't go away. I went to go see a doctor in Allentown, PA at orthopedic associates. The tingling felt like it was in my ring and pinky fingers. At times I would feel a 'ticking' or pulsing (more like a click rather than a pain) at the base of my ring finger. Weird.. I know.

The doctor said I should pay attention of how I rest on my arms. Don't put pressure on the elbow (more importantly right beneath the elbow where you sometimes lean on armrests and desks at work - this compresses the nerve and can irritate it). Sleep at night with my arms straight, not bent, use a towel if needed wrapped around the arm to keep it straight. Some people naturally have a sublaxation of the nerve, which means as they bend their elbow, their nerve pops over the point on the side of your elbow or rubs on it. If you look at the inside of your arm, there are two points and between them the nerve passes (your funny bone nerve). The one you can see without bending your arm out is the one the nerve _can_ pop over and wear away at the nerve. This does not happen to everyone (oh ya.. disclaimer: Im not a doctor.. Im just sharing my experience with having CTS and what I seem to have found out during my experience). In my case, I did not have sublaxation of the nerve. In one arm the nerve moved close to the edge of the bump but never went over. In the other arm it was even less pronounced.

The doctor told me it goes away in 90% of the cases, with that said he still did about 12 surgeries a week for it. My Step-Father had it years back and his healed up with no problem when he followed the conservative treatment. I was sent for a nerve conduction study and then told we would follow up in 12 weeks (I believe it was 12 weeks.. this was a while ago). I scored just under the norm of 50 m/s nerve speed on both arms if I recall. As part of the test they put a needle in several places in your hand and have you put pressure (ie they press on your finger - not the needle - and you push back). This causes a voltage/signal reading on the equipment. The specialist said 'yep - that nerve sounds crusty and unhappy'. To me it sounded like an 80's cheesy racecar sound... so I knew something was obviously wrong, as I was born in the 70's. duh. : )

My Aunt warned me about this test (this is an EMG test - ie nerve conductivity test) - she said it was worse than the surgery she had for her carpal tunnel syndrome, so I was kinda dreading the test. It was an absolute piece of cake. I hate needles, but they weren't bad either.. they just barely tap them into the skin, its not like a shot probably more like accupuncture. They are barely tapped in, it does pinch a tiny but though.

So I was careful in everything I did and went back 12 weeks later and had another nerve conductivity test. No change. No better, not worse. The test results were the exact same. So....he recommended surgery.

Let me also state for the active folks I'm also an avid mountain biker. I like technical - rocky - steep riding if its around. Who cares you say. Well, in PA when I lived there.. I enjoyed a lot of rocky riding and that I'm sure helped aggravated my arms a bit. Now that Im living in CA - the local trails are long (for instance my local 'hill' is 13 miles off road up the mountain to an elevation of about 5600 feet - http://en.wikipedia.org/wiki/Santiago_Peak), but it is not nearly as rocky as some flatter trails in PA (salisbury - walking purchase for instance). So biking out here my arms never hurt during and not really after either. During biking (in PA and CA) there was enough stimluation I guess that overrode any sensation in my hands to CTS. However it would seem two days later or so it would be worse after heavy biking in PA, not immediately after though. I could never say 'the night after biking it hurt' within reason of course (at Mammoth mtn bike park in CA this past summer I can say that night my arms bugged me at night after the first ride- but thats a lot of riding in a day). Let me say again, I tried not riding for several months but it didn't go away at all. No matter what conservative treatment I tried it would never get better past a certain point.

I tried anti inflammatories, less computer, no biking, etc. It never went away. I also was going to the gym a lot when this happened. I'm a thin guy, by no means stocky. I asked the doctors assistant in PA if going to the gym could cause this. She gave me this attitude like it was a silly question and said no we have guys that come in that are huge without these issues. In hindsite.. she was a dummy.. just probably in pre-med and already over-confident in her knowledge. What I had thought could have happened.. and later confirmed is possible with a hand/arm surgeon - is that indeed - parts of your anatomical structures can thicken and put pressure on the nerve. When going to the gym your body adapts - regardless of your size. Everyone has different physiology and reacts differently to activities. So I feel once they thickened and put pressure on the nerve, they never thinned out - if that is what happened in my case. It seems to fit though since it would get better but only to a point/

So. life has been a constant adjusting of activities. I stopped weight lifting and haven't done it since (btw.. when this first started and I would do tricep exercises I would feel a pain/pressure right near where my nerve was in the elbow.. but never felt it any other time in that area, and I stopped going within two weeks of that starting ). I've tried not biking, not working on the computer as much, etc for months on end with minimal change. If it really acted up (lots of tingling) and I took it easy for a few weeks.. it would get better.. but never fully go away no matter what I tried, even though it was very manageable at times.

I was planning a move to CA and the doctor said check with a doc in CA once we move. Right before we moved I was biking again a lot, and packing, etc and it really started bugging me. Even driving cross country was a pain.. luckily I had a good stay in New Orleans and other places to make me feel better : )

Once I was in CA I went to go visit a doctor out here and he felt surgery was the option at this point. I couldn't believe though there wasn't an 'easier' surgery for this. An incision 6 inches long, cutting the muscle, moving the nerve sounded excessive. Three months before I could resume full physical activity and biking? no way! No one seemed to know of an alternative. Finally I found one! An Indian doctor in Germany developed a technique for decompression of the nerve via endoscopic means. At last.. I don't have to get sliced open with a 5-6 inch incision.

The endoscopic method is called in situ decompression and is now finally gaining some momentum. NOTE: This surgery opens up the tunnel.. think of it as a tube through which the nerve travels. If the source of the problem is not the tunnel being too tight but instead another structure putting pressure on it (ex muscle/tendon) then this procedure may not solve the issue - as it did not in my case. I was told by Dr. Tsai though that he's only had two others it didn't work for - but Im just relaying my experience. It was worth it though for me to at least try that surgery..which I did.

This is a youtube video showing this technique.
http://www.youtube.com/watch?v=qttiyxBP0uM

Here is a study in an in situ decompression technique:
http://www.egms.de/en/meetings/dgnc2006/06dgnc190.shtml

Here is a doctor I spoke with in Germany:
"A novel endoscopic technique in treating single nerve entrapment syndromes with special attention to ulnar nerve transposition and tarsal tunnel release: clinical application."
http://lib.bioinfo.pl/pmid:16888558

Well.. I didnt really want to travel to Germany for as it was put.. a 'medical vacation'.

So I searched further and finally found someone in the US that did this procedure. Dr. Tsu-Min Tsai in Louisville, KY. He seemed to be an accomplished surgeon, he took part on the team that actually did a whole hand transplant. It was pretty neat to see the video of a guy that didn't have a hand for years get a new hand and he was able to move it. Frankenstein.

I was happy at finding this. The procedure involves cutting a small Z shaped incision and going in with a tube and cutting the area around the nerve away to release some pressure on the nerve. I called the office.. setup an appointment at the Jewish Hospital in Louisville with the potential for surgery if I needed it. They had a special rate at the local hotel. Btw - there is an _awesome_ restaurant nearby serving Mayan/Mexican cuisine. It was tasty.. but I would drive there and not walk from the hotel. We walked and got to a street corner at night and suddenly there was a flash and a voice said "you are entering a restricted area and your picture has been taken". This came from a device mounted on a light pole, so it seems that corner must have had some pimp problems or something. It wasn't restricted, there were businesses, etc on that street. Nonetheless, we walked back to the hotel (10 min) and drove to the restaurant.

It was confirmed after an examination by Dr. Tsai that I needed surgery... so I went downstairs for all the paperwork, vitals, etc.

The surgery the next day was a piece of cake. My arm was numbed before the surgery. They give you something in your IV to make you loopy and not care about anything, it felt quite good. Then they have you put your arm above your head and inject the nerve to numb your entire arm. They let you sit around for a while in bed and keep checking your arm to see if its numb. Then they bring you in to the operating room. I remember being pushed down the hall and suddendly felt warm and wonderful. I asked the nurse if she just gave me something in my IV. "YUP" she said. Nice! Then I was out.

I woke up and was out of the hospital in no time. My Wife and I went to the "Lucky Strike" restaurant for lunch in downtown Louisville which was a neat smaller city. Now.. this is funny. My arm is totally numb and in a sling. I felt great.. like I never even had surgery that day. So I go into the restroom. OF course, being a guy, we have our urinals, which Im standing at and... um.. checking the time. Well I am in the restroom alone and just looking around as Im doing my thing and suddenly feel movement in my shoulder, which wasn't numb. My arm was slipping out of my sling and about to fall directly in the path of you guessed it. Luckily the other hand saved it in time. I had to share that because I've been laughing for about a year for what almost happened.. so if you are a guy.. just be careful. My sling maybe wasn't quite large enough for a guy like me with long arms.. or it just wasnt in there all the way from me moving around in the car or something. There is a baseball museum there - think louisville slugger. Also there was a neat old graveyard where not only Colonel Sanders from KFC is buried, but also rows and rows of Civil War soldiers lined up like Arlington National Cemetary.

Later in the day (hours later) I was laying in bed at the hotel and still couldn't move my hand. The block started to wear off and I would seng a signal to my fingers to move and would get a slight twitch. 15 minutes later more of a twitch.. and so on until I regained full movement when I awoke the next morning .. that was a weird feeling.
I had some swelling around the elbow.. and pain if I rested it on anything. However a few days later.. my hand pain was worse than it had ever been. Usually it gets better. Not in my case. It was pretty miserable and I couldn't seem to get a straight answer from the doctors office "oh.. just wait.. each person is different'. I said shouldn't it be a little better? "Usually yes.. but everyone is different". Something didn't feel right though. Since I couldn't get a quick reply from anyone I think I emailed and got a response fgorm a guy there and he was very helpful and looked into it.. the doctor was out. Anyway.. I was told this procedure had only not worked on two people during the whole number of years doing it. In fact the doctor didnt even perform the transposition surgery now (as I was told by someone there) since this procedure basically always works. Well.. in my case it didnt. I was told it can take a year to recover.. fine.. but with how my symptoms were somewhat minimal compared to some people I figured it would be a quick results.

Nerves heal because of a flow in them called axonal flow. This starts at the spinal cord and moves an estimated inch a month in humans (its been observed directly in animals but direct human testing hasn't occured, only derived measurements from the healing process as far as I know). So if your elbow issue is resolved, it could take a year for the damaged segment to flow down from the elbows to the fingertips as I understand it. In one case I was told about a patient actually got worse after surgery as it seemed the nerve was dying, but it started healing and eventually got better. This is not the norm of course but these things can happen. I had asked about the risk of cutting the nerve and was told the risk of course exists but had never been seen by my doctor.

Anway.. over a year later.. no change at all.. so the surgery did nothing for me at all.
I lost nothing but some time and a little $ trying this... so it was an experience.. and I have no pain or numbness from that surgery, and only a tiny little 'z' shaped scar... so I would urge someone to look at this as an alternative as it seems to work for most people according to that center. I was told this procedure opens all 6 points of compression.. obviously not all causes of cubital tunnel though since I still had the same problem over a year after that surgery (or so we'll find out after this next surgery)


Since this surgery didn't do a thing for me...I went back to the doctor in CA.
We scheduled the 'full monty' surgery - ie ulnar nerve transposition. Since my symptoms were minimal compared to some people (no strength loss yet) right before the surgery he said he wanted me to get another nerve test. So literally the day before the surgery I went to see a neurologist for another nerve test (this would be my third - and now prob a year or longer after I first developed symptoms). The doctor had an ancient machine that he shocked the arm with (its a minor jolt) and they look at the response graph on the screen. I asked if this would give the same results as the 'more current' machine I had results done on in PA. He said it would yield the exact same results. Well.. it didn't. The software/machine used in PA was "Sierra Wave" EMG machine. This doctor (NOT Dr Tsai, Cook, or Smith) had what looked like an old eniac (ie ancient computer) contraption. The Sierra Wave is powered on a laptop. Big difference in look. Anyways.. he asked about my symptoms and I told him. After the test he said it didn't look like I had it and he called my doctor and recommended against surgery. I was a little irked because I wanted this to be over and everything/everyone else pointed to me having it. My hand surgeon (Dr. John Cook in Newport Beach) had a great personality. The office wait is long at times (try for the earlier appointments they seeem to be better), but he is a really good doctor. The fact the I had all the symptoms (I forgot to mention I also had tinels sign - when they lightly tap on the nerve and your fingers tingle) and two tests showing I seemed to have it but another doctor saying I didn't was aggravating.

So Dr. Cook sent me to see Dr. Harold Smith in Irvine, a fine neurologist and sleep disorder specialist (who also says be very very very careful of Ambien to anyone else out there reading this and recommended alternatives. In some of Europe where there is no prescription required it seems there may be permanent memory loss by young people taking a lot of this). Dr. Smith gave me the most comprehensive EMG I had. He tested the neck/back/shoulder/arms to look for double crush injuries (ie two points of impingement at shoulder/neck/elbow etc). He also looked for signs of ALS and other nerve disorders and thankfully didn't see any signs of it. He also checked for signs of permanent nerve damage and there was none of that either. The thing with nerve injuries is you have to be careful with the length of time you have them. Eventually permanent damage can occur and there may be no coming back from it. I admit.. mine has gone on for too long, however I was able to manage symptoms to make it 'manageable but still frustrating since it never went away'.

There are several components of the nerve that are tested, sensory and motor functions. He said in my case there was an abnormally fast response in a particular test on my nerve and I should thank my parents. I don't recall the portion I just believe he made the analogy of it being like the copper inside a wire. He then added it made no difference in day to day life - except in nerve resiliency and compensation - which is why he felt could be why I've had this for so long without reaching a critical point and the strength/etc has remained pretty strong.

Dr. Smith immediately said after the first test "I strongly disagree with the last neurologist.....you clearly have signs of CTS right across your elbow". I was still just a bit below 50 m/s around the elbow however the rest of the nerves he tested all measure at least 60 m/s in speed, so even though 50 m/s is the low end of normal.. in comparison to the rest of my nerves it was significantly different. I think I scored 48 and 49 for each arm across the elbow. He said its not necessary to immediately rush into surgery that day (like in the case where he sees damage occuring now) but I should look into it. btw.. when he did the needles for the test he claimed he did it without _any_ pain. The last time I felt a pinch in PA with different people giving me the test, but very manageable. He used teflon coated needles. So.. when the needle was put in my hand (and back later) it seriously didn't hurt one bit.. not even a pinch. The teflon coated needles made a big difference.

I went back a few months later for another test with Dr. Smith. He is a funny guy too. The left arm was bugging me a lot more. He did the same tests again and the left arm had deteriorated and was now around 39 or so, so he thought it is time now to get the surgery. Summer was here so I figured I'd wait until after summer (since I had biking/surfing/etc ahead of me this summer). Now its November 17th and I'm schedule for Wednesday to have the surgery.. so hopefully a good follow up.

Btw...my concern was that at some seemingly unknown point, the nerves can deteriorate. You can develop ulnar claw. Do NOT let this go. Ulnar claw is not reversible and you will lose the use of your hand. You never know when this can happen.. so if you need surgery.. get it. The neurologist told me of several patients that developed it - scary.


Additional notes: I was not prescribed physical therapy when first diagnosed. Some doctors do.. but it seems there is debate if its more useful than just 'leaving the nerve alone' and making sure you stop damaging it if indeed it is from putting too much pressure on it.

Also it seems different doctors have very different methods after transposition surgery. Some in the past would put almost a cast on. I would think with this there is even more atrophy. I was concerned about this but today the doc said its not as bad as the knee (which I was comparing it to.. when I had knee surgery my leg shrunk considerably in two weeks). He said the arm doesn't respond the same way.. but I should still expect atrophy. Some doctors prescribe PT, mine did not. he said just keep flexing it to keep the nerve gliding and minimal scar tissue from forming around the nerve and Im presuming putting pressure on it.

The surgery Im going in for moves the nerve and it goes something like this (this is my understanding anyways, it may be a bit off)
1. Block the artery in the arm to stop or limit bloodflow.
2. Cut open the arm at the elbow, 5-6 inches or so...
3. One through the skin try to avoid cutting smaller nerves if possible. Sometimes it is necessary to move the nerve.
4. cut around the nerve to free it - small capillaries are cut. The 'in situ' method does not do all of this and thus they say preserves nerve vascularity, althoug the doctor did tell me there seems to be no negative affect on the nerve of 50 years of doing this, as the nerve has its own blood supply anyways inside of it.
5. cut the muscle that attaches to the inside point of your elbow. Cut at a zigzag because when it is reattached, the points of the zigzags will be sewn together to make the muscle slightly longer to limit stress on the muscle during healing. I am told it heals fine, and this doesnt seem to affect anything permanent in the muscle usage. I asked if people can feel the scar in the muscle under the skin, he said he hasn't heard that.
6. lift the muscle and move the nerve from your elbow under the muscle. I read on the net a new tunnel is 'formed' but was told there actually isn't one formed, the nerve is set under the muscle and it settles into its own pathway.
7. muscle is reattached - it is now 1/2 inch or so longer
8. artery unblocked
9. everything closed up and arm wrapped.

Immediately the arm can be moved, although with a big bandage it will be limited. The doc said the stitches won't be overstressed by moving it, plus the bandage limits the range for the first week. Nothing should be lifted. The muscle that is cut is responsible for moving the wrist up and down (ie when holding the hand parallel to the floor) so of course you want to be careful with the healing process.

Today at the doctor was the first time there seemed to be slight weakness in the left pinky and ring fingers. You put your hand flat on the table and he tries to pry the fingers apart. he never used to be able to do it and can now do it on my left ring/pinky fingers. Good thing I guess surgery is in two days. This shows possible slight signs of degradation of the muscle function. I didnt have too much of a difference in sensation of the fingers. This varied at times over the months. Sometimes the pinky would feel more numb when they put a roller with spikes on it on the finger.. today it felt pretty similiar _maybe_ a little less sensitive.

Another test they do is to have two points on a tool, and on the other side one point. Close your eyes and try to tell if it is one point or two points touching. If you cant tell in the ring or pinky fingers - then possibly nerves are troubled there.

4 comments:

Anonymous said...

I just found out that I have cubital tunnel syndrome last week after having numbing in my pinky and ring finger for a couple of months. My dr (in Allentown, PA)gave me a brace to wear for 3 months. Problem is, my elbow now hurts after wearing the brace. Never had pain before, just tingling. Keep posting, I have a feeling I'll end up having surgery too. Same situation, my nerve test came up slightly below 50 at 47, but compared to the rest, that is low.

Adam Tuliper said...

Ironically, thats where I first went to the doctor in Allentown. He wasn't aware of the scope procedure when I went there (orth associates) but that was also seven years ago so they may do that procedure there now. I'd consider it first, way less invasive.

Anonymous said...

So was surgery successful?

Adam Tuliper said...

Don't forget to see the updates at the end of the blog http://adamtuliper.blogspot.com/2014/11/wrapup-in-2014-six-years-post-surgery.html