sivyaleah
10-31-2005, 06:08 PM
After 6 months of testing, retesting, orthopedist and neurologist visits (including 1 neurosurgeon) I am at a loss about whether or not surgery is warranted.
I have CTS in both arms (and, mild CT in my right hand). Quite the annoyance. While certain activities set it off - for the most part daytime hours are bearable and I've modified my activities to a degree where it really isn't much of an issue. For instance, I've stopped using my PDA and cellphone indiscriminately, took the arms off my desk chair so I wouldn't be tempted to lean my elbows on them, have my husband do long distance driving, take breaks during days of heavy typing (I work on a computer all day), etc.
But - nighttime remains a huge problem. My hands go numb all night long to the point where I get little sleep because of it. I was on Ambien for about 3 months (2 actually - I was able to stretch it to 3 when I discovered 1/2 a 10 mg pill was as effective for me so I started cutting them in half - wish I'd done that sooner). Ambien works wonders - I sleep well, have no side effects at all, not even that much dreaded rebound insommnia.
At this point - my orthopedist can't help me other than surgery. Same for the neurologist. So, neither will prescribe the Ambien. I was referred back to my regular doctor, who I know for a fact is very conservative and will never let me stay on it even tho it's been approved for long term use.
My point is - is surgery called for when the worst aspect of it is not being able to sleep? It seems like a stupid reason to have surgery, you know? But on the other hand, it's kind of ruining my quality of life - not being able to get a sound night's sleep wrecks havoc with your daily life. Tired, cranky, moody, make small errors, etc. And yet, who on earth would chose to have surgery if your entire life isn't be effected severely by it?
If I go ahead w/surgery I'm leaning towards the neurosurgeon, who I believe is more qualified than my orthopedist to do this type of work. I love my orthopedist, and trust him (he did surgery on my knee last year and it went well) but when it comes to nerve problems, somehow I think it's better left to the expert in those issues. So, the neurosurgeon (whom I like too) said my case, while annoying and complicated by it being both arms, isn't in a severe stage yet and perhaps waiting a few months to reassess would be a good idea. He's not pushing me into surgery at all but did make mention that while my case is mild now, that doing surgery now would also have better results than waiting until there is more nerve damage and other associated problems that come with it.
Anyway, I'm venting more than anything but if anyone wants to respond or put in their 2 cents I'm happy to hear your opinions!
Thanks!
I have CTS in both arms (and, mild CT in my right hand). Quite the annoyance. While certain activities set it off - for the most part daytime hours are bearable and I've modified my activities to a degree where it really isn't much of an issue. For instance, I've stopped using my PDA and cellphone indiscriminately, took the arms off my desk chair so I wouldn't be tempted to lean my elbows on them, have my husband do long distance driving, take breaks during days of heavy typing (I work on a computer all day), etc.
But - nighttime remains a huge problem. My hands go numb all night long to the point where I get little sleep because of it. I was on Ambien for about 3 months (2 actually - I was able to stretch it to 3 when I discovered 1/2 a 10 mg pill was as effective for me so I started cutting them in half - wish I'd done that sooner). Ambien works wonders - I sleep well, have no side effects at all, not even that much dreaded rebound insommnia.
At this point - my orthopedist can't help me other than surgery. Same for the neurologist. So, neither will prescribe the Ambien. I was referred back to my regular doctor, who I know for a fact is very conservative and will never let me stay on it even tho it's been approved for long term use.
My point is - is surgery called for when the worst aspect of it is not being able to sleep? It seems like a stupid reason to have surgery, you know? But on the other hand, it's kind of ruining my quality of life - not being able to get a sound night's sleep wrecks havoc with your daily life. Tired, cranky, moody, make small errors, etc. And yet, who on earth would chose to have surgery if your entire life isn't be effected severely by it?
If I go ahead w/surgery I'm leaning towards the neurosurgeon, who I believe is more qualified than my orthopedist to do this type of work. I love my orthopedist, and trust him (he did surgery on my knee last year and it went well) but when it comes to nerve problems, somehow I think it's better left to the expert in those issues. So, the neurosurgeon (whom I like too) said my case, while annoying and complicated by it being both arms, isn't in a severe stage yet and perhaps waiting a few months to reassess would be a good idea. He's not pushing me into surgery at all but did make mention that while my case is mild now, that doing surgery now would also have better results than waiting until there is more nerve damage and other associated problems that come with it.
Anyway, I'm venting more than anything but if anyone wants to respond or put in their 2 cents I'm happy to hear your opinions!
Thanks!
Sponsor
Taimse
10-31-2005, 07:45 PM
You always run the risk of complications....did any of the doctors promoting surgery tell you about complications?
I have had complication following CT release in Feb. I am scheduled for hand surgery at an unrelated hand surgery facility next month to, hopefully fix or correct what is wrong. I was told last month, my a doctor in physical medicine and rehabilitation to go home and live with my pain ....that remodeling could be taking place. The surgeon I saw last week, was pretty concerned about EMG results done last month showing very little improvement and thinks it is probably nerve entrapment still... not totally released from Feb surgery.
I have had complication following CT release in Feb. I am scheduled for hand surgery at an unrelated hand surgery facility next month to, hopefully fix or correct what is wrong. I was told last month, my a doctor in physical medicine and rehabilitation to go home and live with my pain ....that remodeling could be taking place. The surgeon I saw last week, was pretty concerned about EMG results done last month showing very little improvement and thinks it is probably nerve entrapment still... not totally released from Feb surgery.
sivyaleah
11-01-2005, 12:38 PM
Yep, complication possibilities another reason why I don't want to have the surgery. As of now - I have pretty good use of the hand - it's the darn numbness which is my biggest complaint. Just doesn't seem like a good enough reason to slice open my arm(s) - you know?
CDauthier
11-02-2005, 12:08 AM
Sivyaleah,
Just had the ulnar nerve decompression and carpral tunnel release done on my left arm on Oct. 24th. I don't regret it a bit. I knew I had made the right decision in the recovery room as I felt I had my hand back again...it felt like it belonged to someone else before! :) My coordination, pain, numbness and tingling were distinctly better right after the surgery (the pain from the surgery itself is different...you just have to experience it to know what I mean). I had the same feelings in getting a neurosurgeon to do these proceedures. My GP set me up with an ortho hand specialist, but I cancelled and went to my neurosurgeon who had performed back surgery on me several years ago. If it was a broken hand, that's different, but neurosurgeons are more knowledgeable about the nerves...that's what they studied for years and years to become a neurosurgeon.
You will know when it's the right time for the surgery. I was told the feeling in the two fingers may not come back...but that's o'kay even if it doesn't...the motor skills are definitely better and that's what I was afraid of loosing. The tingling and pain associated with both the ulnar nerve and carpal tunnel are gone. There is some very slight discomfort left in the wrist that should be gone in a couple of days. The long cut on the arm at the elbow is very sensitive but it's getting better every day. When it gets too aggravating I just take a pain pill and don't even notice it.
Since I had both done at the same, it was done under general anesthesia. I had the ace banage removed on the arm two days after surgery and the soft gause protecting the wrist removed at that time also. Was told I didn't have to wear the sling unless I was somewhere where I felt vuneral and needed the protection. The wrist and the incision on the arm had terry strips...the kind they put on to protect incisions. I have two stitches on the wrist will which be removed Tuesday unless I decided to remove them myself sooner. The arm had a combination of dissolvable stitches and glue. The terry strips over the incision were the only thing that gave me fits, but as the doctor told me that I could start showering that day and they would come off by themself, I just showered and showered until they came off. Then it was heaven after that...still sensitive, but no scratchey tape strips blistering the arm.
Just be careful and not wait until it's too late to have a good outcome. Sleeping is a third of your life that effects the other 2/3 's of your life while you are awake. It's awesome to get a good night sleep now! Good luck with whatever you decide!
Cathy
Just had the ulnar nerve decompression and carpral tunnel release done on my left arm on Oct. 24th. I don't regret it a bit. I knew I had made the right decision in the recovery room as I felt I had my hand back again...it felt like it belonged to someone else before! :) My coordination, pain, numbness and tingling were distinctly better right after the surgery (the pain from the surgery itself is different...you just have to experience it to know what I mean). I had the same feelings in getting a neurosurgeon to do these proceedures. My GP set me up with an ortho hand specialist, but I cancelled and went to my neurosurgeon who had performed back surgery on me several years ago. If it was a broken hand, that's different, but neurosurgeons are more knowledgeable about the nerves...that's what they studied for years and years to become a neurosurgeon.
You will know when it's the right time for the surgery. I was told the feeling in the two fingers may not come back...but that's o'kay even if it doesn't...the motor skills are definitely better and that's what I was afraid of loosing. The tingling and pain associated with both the ulnar nerve and carpal tunnel are gone. There is some very slight discomfort left in the wrist that should be gone in a couple of days. The long cut on the arm at the elbow is very sensitive but it's getting better every day. When it gets too aggravating I just take a pain pill and don't even notice it.
Since I had both done at the same, it was done under general anesthesia. I had the ace banage removed on the arm two days after surgery and the soft gause protecting the wrist removed at that time also. Was told I didn't have to wear the sling unless I was somewhere where I felt vuneral and needed the protection. The wrist and the incision on the arm had terry strips...the kind they put on to protect incisions. I have two stitches on the wrist will which be removed Tuesday unless I decided to remove them myself sooner. The arm had a combination of dissolvable stitches and glue. The terry strips over the incision were the only thing that gave me fits, but as the doctor told me that I could start showering that day and they would come off by themself, I just showered and showered until they came off. Then it was heaven after that...still sensitive, but no scratchey tape strips blistering the arm.
Just be careful and not wait until it's too late to have a good outcome. Sleeping is a third of your life that effects the other 2/3 's of your life while you are awake. It's awesome to get a good night sleep now! Good luck with whatever you decide!
Cathy
sivyaleah
11-02-2005, 10:19 AM
Cathy,
Thanks for the long, informative and encouraging post. And yes - sleep is an issue, my orthopedist said that too - how long can you go without a good night's sleep? It's funny - last year at my annual work review both of my bosses mentioned that they thought I seemed annoyed a lot of the time w/them. I told them that wasn't true (mind you - I've been here 18 years and since it's a small office I have a remarkably good relationship with both of them) and told them they were misreading me. I didn't elaborate as I didn't think it necessary to complain at the time but in retrospect I should have just told them the truth - I was in pain, exhausted and frankly, yes, occassionally cranky in general because of the lack of sleep (this was before my orthopedist took pity on me and prescribed the Ambien). Since then, I have been more vocal about my problems because it does effect my job to a small degree and they've been great about trying to help figure out ways to make it easier for me on the job.
I've decided to wait a few more months, reassess then. By the way, how did you ever go about daily activities having done both arms at the same time? That seems rather daunting to me - I guess you must have had to have someone help you do literally everything for at least a few days. What a misery. The neurosurgeon I went to said he would do them separately, which I prefer anyway.
Thanks again for your encouragment - it's highly appreciated!
Thanks for the long, informative and encouraging post. And yes - sleep is an issue, my orthopedist said that too - how long can you go without a good night's sleep? It's funny - last year at my annual work review both of my bosses mentioned that they thought I seemed annoyed a lot of the time w/them. I told them that wasn't true (mind you - I've been here 18 years and since it's a small office I have a remarkably good relationship with both of them) and told them they were misreading me. I didn't elaborate as I didn't think it necessary to complain at the time but in retrospect I should have just told them the truth - I was in pain, exhausted and frankly, yes, occassionally cranky in general because of the lack of sleep (this was before my orthopedist took pity on me and prescribed the Ambien). Since then, I have been more vocal about my problems because it does effect my job to a small degree and they've been great about trying to help figure out ways to make it easier for me on the job.
I've decided to wait a few more months, reassess then. By the way, how did you ever go about daily activities having done both arms at the same time? That seems rather daunting to me - I guess you must have had to have someone help you do literally everything for at least a few days. What a misery. The neurosurgeon I went to said he would do them separately, which I prefer anyway.
Thanks again for your encouragment - it's highly appreciated!
topgun
11-02-2005, 09:47 PM
I have CTS in the left arm and nerve compression in the neck area. I know what you are saying about needing a good nights rest. I have had the CT for about 7 months and with PT its getting better. That is the pain and tingling of the fingers. I still have area on the inside of the elbow about the size of a baseball that is numb and tingles. I have about 80% of my strength back in my hand but if I try to lift something like a 19 in TV with my arms spread out it hurts and is very weak. I also can’t tolerate putting my arm on a desk or anything hard. Just thought of bumbling my elbow hurts. But for the most part I’m slowly recovering without the surgery. I’m curious if anyone reading this ever made a complete recovery without the surgery? But again I relate to you about hand going numb while trying to sleep. A lot of times my whole are goes numb and wakes me up constantly.
sivyaleah
11-02-2005, 10:01 PM
Actually, my neurosurgeon did say the the CTS can go away on it's own sometimes. That is why he suggested reassessing in a few months - to see if whatever modifications I can make to my life will help me. CT can go away as well - I had it about 20 years ago, wore a brace for a time and it resolved on it's on. 20 years resolved - although now I seem to have a mild case again. But I'd say that was quite a long time to disappear :-)
And yes, not being able to sleep well really stinks!
And yes, not being able to sleep well really stinks!
CDauthier
11-02-2005, 11:52 PM
Sivyaleah,
I'm mean and bad, but not that bad.....only had my left arm done...(my "both" referred to both ulnar nerve and carpal tunnel problems fixed on the same arm at the same time)! I wouldn't recommend that anyone have both surgeries on both arms at the same time....carpal tunnel maybe, but not ulnar nerve for sure.
Every day I see a difference...feeling in the pinky and ring fingers are coming back, slowly but definitely coming back...other fingers are already better than those on my right hand. I have an ulnar nerve compression and carpal tunnel problems on my right arm and hand as well, but it isn't as severe as the left arm. Will probably wait til next year to have that arm done unless I see the deterioation worsen all of a sudden like I did in my left arm. I am once again able to pull bills and coins from my wallet to pay at a cash register without the line grumbling behind me because I was taking too long! :) I also noticed greatly improved motor skills in my left hand when working in my office today....makes me feel 20 years younger!
Take care of yourself and when you do decide to have the surgery, don't worry about that part....it's a piece of cake!
Cathy
I'm mean and bad, but not that bad.....only had my left arm done...(my "both" referred to both ulnar nerve and carpal tunnel problems fixed on the same arm at the same time)! I wouldn't recommend that anyone have both surgeries on both arms at the same time....carpal tunnel maybe, but not ulnar nerve for sure.
Every day I see a difference...feeling in the pinky and ring fingers are coming back, slowly but definitely coming back...other fingers are already better than those on my right hand. I have an ulnar nerve compression and carpal tunnel problems on my right arm and hand as well, but it isn't as severe as the left arm. Will probably wait til next year to have that arm done unless I see the deterioation worsen all of a sudden like I did in my left arm. I am once again able to pull bills and coins from my wallet to pay at a cash register without the line grumbling behind me because I was taking too long! :) I also noticed greatly improved motor skills in my left hand when working in my office today....makes me feel 20 years younger!
Take care of yourself and when you do decide to have the surgery, don't worry about that part....it's a piece of cake!
Cathy
curiousforever
11-12-2005, 03:59 PM
whoops.
can't find delete button. :rolleyes:
can't find delete button. :rolleyes:
curiousforever
11-12-2005, 04:05 PM
I don't think she had r and l done at same time-
watch how you sleep. I noticed that if you sleep with your wrist and arm curled up that it will worsen the symptoms. And how you sleep is such a habit that you don't notice it--unless you pay such attention.
I had ulnar nerve surgery in both elbows done (one elbow at a time) in early 2004 and had carpal tunnel in both arms. Opted to do nothing with that as it was not bothering me. Just had another EMG done due to more elbow pain, and my carpal tunnel in my right arm was GONE!! I still have it in my left arm...but it is gone in my right. GONE!!
But the ulnar nerve myelin is also gone :( so will have to have surgery and a nerve biopsy to find out why.
So, until it's more bothersome, it's ok usually to wait. You don't want to wait a long time though as you don't want permanent nerve damage.
As long as your doc is comfortable with waiting---wait. If he thought you would be deoing perm damage--then you should get it done sooner.
and the surgery is a piece of cake....out patient. got good meds..no real pain...
the hard part for me was trying to get docs to listen to me-they sent me to a freaking psychiatrist cause the ulnar nerve problem....never even told me I could have surgery and fix it. Just told me it was stress (AFTER the EMG results even) and said I was "hooked" on the 2 hydrocodone a day I was allowed by pain mgmt...which I happily gave up after recovering from surgery.
watch how you sleep. I noticed that if you sleep with your wrist and arm curled up that it will worsen the symptoms. And how you sleep is such a habit that you don't notice it--unless you pay such attention.
I had ulnar nerve surgery in both elbows done (one elbow at a time) in early 2004 and had carpal tunnel in both arms. Opted to do nothing with that as it was not bothering me. Just had another EMG done due to more elbow pain, and my carpal tunnel in my right arm was GONE!! I still have it in my left arm...but it is gone in my right. GONE!!
But the ulnar nerve myelin is also gone :( so will have to have surgery and a nerve biopsy to find out why.
So, until it's more bothersome, it's ok usually to wait. You don't want to wait a long time though as you don't want permanent nerve damage.
As long as your doc is comfortable with waiting---wait. If he thought you would be deoing perm damage--then you should get it done sooner.
and the surgery is a piece of cake....out patient. got good meds..no real pain...
the hard part for me was trying to get docs to listen to me-they sent me to a freaking psychiatrist cause the ulnar nerve problem....never even told me I could have surgery and fix it. Just told me it was stress (AFTER the EMG results even) and said I was "hooked" on the 2 hydrocodone a day I was allowed by pain mgmt...which I happily gave up after recovering from surgery.