What kind of Fusion would be best for ME?

[Susanna]

I think the time change from AK and you guys makes it look like a day a head of when I may be writing. Of course I did write pretty late last night. Audun started his job today (Friday), though he had met with the board for a meeting on Thursday night. But he does have to work on Saturday morning. This is part of working for a non for profit.
**It has taken me half the day to get this written, in that time I have finally gotten to talk to my husband, who had a good first day. He is hating the WI heat, as Alaska is so beautiful, and never above 70. This job is so below his capability that I think he will eventually be frustrated, but it is what it is.

The reason my pain neurologist wouldn't do another injection (they finally told me after I had the other doctor give it) was because I moved around too much during the procedure. I think it wouldn't have hurt anyone for telling me this. I don't understand what all the secrecy was about.

As far as the pain medication. I had been on it since Nov. 07 , and with the encapsulated shoulders, the pain just got worse and the pain medication got increased and increased and by March of 2010, the itching started. The doctor said that it was a sign that my liver wasn't handling the medication. As every pain med they would switch me too, would cause the itching. He felt we needed to give my liver a chance to repair itself so that when I have more surgery, I will be able to have the pain medication. The doctor that gave me the shot the other day (new doc for me) after discussing things, agreed with me that if I could handle the pain, (which I have been doing, as well as I can, for the future better good) I think my pain tolerance has risen since I got the frozen shoulders. The pain I can tolerate now is definitely more than the pain I could tolerate before it. But I do know when to say when. I also am not trying to do anything on any day of the week other than trying to survive. That is my mode, survival, right now.

I think that being off all pain meds since March has been good for my liver recovery and that hopefully when I have surgery, I will be able to take the pain meds to deal with it. It would be really awful to not have that to help me.

So right now, I am thinking about whether the radical microdicotomy is the way to go or to just go with the fusion. There is no date set to do the fusion after the microdicotomy. It was the ADR trail that said I would qualify 3 months after surgery if I still needed it. So I have been using that as a guideline to know if I will need a fusion as well. I'm still looking to see if there are any ADR trials that would work for L5/S1, if anyone hears of one. But I have pretty much figured that I will end up with a fusion. I just need to figure out which kind I will go with, if I am to end up with one. Thanks Greg for thinking of me and asking the questions. I never mind questions being asked, it just keeps me thinking which is important. The key of course is having covered by my wonderful United insurance!!

I appreciate, as always, everyones encouragement and friendship! You are all very special to me!

Susanna

[ajj1001]

Thinking of you during this really stressful time.

Just to let you know that things do work themselves out in these situations, my husband was made redundant a year after my first spine surgery and I had to go back to work to support us when I was able. He then got a job which wasn't as good as his old one but with a good employer. He discovered he to have open heart surgery and was off work for quite a while. They treated him really well. He was allowed to work from home, go home early when he felt tired. His job has evolved into a better one and now I am unable to work he is able to support me.

[Susanna]

Alison (that's your name?)
thank you for your kind remarks and thoughts! Regardless of my situation, I have much to be thankful for. My daughter went to go pick up a prescription for me today and found out that our insurance has been dropped. LOL, can you believe it! My husband just started his job today, and today we have no insurance! It is incredible. The pharmacy was really kind and gave me enough meds (they are for my migraines and Peripheral Neuropathy) to get me through the weekend for free. I need to get a hold of the insurance company (or rather my husband does) on Monday, before I leave at 10 a.m. for the month in the lower 48. Can nothing be simple?

Any way, after stressing and crying and calling my husband! lol, I settled down and realized that things will work out one way or another.

If I didn't have such a strong belief in God (I may have said this before) I would crush up all my pain meds (which I have a boat load of !) and mix it with a big bowl of my favorite Ice Cream and just go to sleep until I died. But instead, I believe that God has a purpose in this. And some how, his will will be worked out for our betterment. That is not to say that I wouldn't like a crystal ball to see what it is!

I am doing the best I can. Yes, I am in Alaska and my husband is in WI. This is to answer Runagain. If I ever have to go back to WI, I would be happy to hear about the doctors name.

You also asked about the ADR. From what I have read, the Pro-disk L is not the best disk for the L5/S1 area, it has too much movement. This is the ADR that my doctor does, and has recommended to me. But I do not feel it is the best ADR for me. I would have loved to have the Freedom disk but there are no trials going on right now to get into. There is another trial that they said I could be considered for, but the other day I got an email that says that L5/S1 is not included in the trial. I am looking at many different kinds of fusions. Haven't made a decision yet on that. So this is where I am. Just found out though that my injection I had on Tuesday, may not be covered by my insurance if it was discontinued. But I think we can get it all covered with Cobra. Just have to do LOTS MORE PAPER WORK! my favorite subject.

Well, I need to get to bed. 2 a.m. I have sewing to do for my daughters wedding tomorrow. That should be interesting since I haven't figured out how to do anything but lay on my stomach, but I will figure it out.
I also need to get laundry done so I can start packing.

I have been in pain for so long, that I don't even remember what it is to live without it. It will be three years in Nov. that I have been in pain. I am guessing I have another 2 years to go, that should include recovery. I am praying that is it. I am not sure I have much more to give!

Good night, talk to you all in the morning! Oh and I'm so glad that Carmen is doing better!! I agree with you! about the minute thing! I wouldn't have waited. I am too impatient! lol
Susanna

[Susanna]

Hi everyone!
Just letting you know that I didn't fall off the face of the earth, just that I'm down in the lower 48 and don't always have an internet connection! I'm at a friends house in Stevens Pointe WI right now visiting for a couple days before I head over to New London WI to see another friend. The driving is killing me!!! I can hardly stand it! I have decided not to drive the 3 1/2 hours to IL to my Parents house to spend a week. I can do about 1/2 hour to an hour at best and then I am ready to die. My youngest daughter drove us the 1 1/2 hours from Eau Claire to Wausau and then I had to drop her off at friends. I have been on my own since then.

The shot I had before I left Anchorage was not very helpful. It took care of the bit of pain I was starting to have in my left leg and relieved a little bit of pain in my back, but not enough and it didn't touch the pain in my right leg. Fortunately the plane ride was only 5 hours and the plane was empty enough that they gave me all 3 seats to myself so that I could lay almost flat the whole way. I am praying the same will be true on the way home! Then my husband picked us up from the airport and I was able to lay on the back seat all the way from Minneapolis to Eau Claire (1 1/2 hours drive). So my trip was pretty painless. :thumpup:

3 weeks till the wedding and then back home to Anchorage. My husband is working at his new job. Some guy came in to talk to him about a job, just right off the street. He asked my husband for a copy of something. When my husband was gone to get it, he thinks he stole his set of keys. When he went to leave to come home tonight, he couldn't find them any where. Unfortunately, his wedding ring was on the key chain because he had taken it off for exercising and hadn't put it back on yet. Tell me, who leaves there keys on their desk all day? OK, .....I'm fine, I just had to get that off my chest! Hopefully his office won't be robbed tonight, because they don't have a security system. That is another thing I don't get! My husband reported it to the police. Of course, he never got the guys name or couldn't remember it. I am just so astounded that my husband didn't see through this guy!

So did I tell you that I am now scheduled to have my Microdicectomy on Aug 31? That's my day. My insurance should be all set back up by then. I need to call tomorrow and make sure everything is taken care of. Also that COBRA has been taken care of while we had no insurance. $1400 for one month! And we only needed two weeks! I have to call and see if they will only make us pay for the two weeks, but my husband is pretty sure we have to pay for the whole month.

One of my friends told me tonight that she wondered whether some of my symptoms could be related to my stress. I got so angry I almost walked out of her house and drove away. It took everything in me to stay seated. But I did yell at her and told her that I have medical proof that I have a herniated disk, and I have a tissue test that proves that I have Peripheral Neuropathy. How can people be so insensitive? Do they really think that they are helping by telling you that your pain is all psycological? Then she tried to back pedal and say that she just meant that if I was in a better state of mind that maybe I would get better faster. I told her, that I have been living in a beautiful house for almost a year and looking out and the most beautiful scenery, and I have been in horrible pain. Do you really think that it has all been in my head? I haven't been worried about things like I am now, this whole time. Why are even friends such jerks. She thought I was mad because I had had to much wine to drink. I didn't even have a buzz going. Funny, it used to be that one glass did that to me. Does being on so many drugs for so long, effect you so that even wine doesn't get you drunk anymore?

Well, I do have a stress headache now. So it's off to bed for me. I will check back with you all later! Just wanted you to know I wasn't dead, YET any way!

Susanna

[Katie]

Wow, you have so much going on! I'll take the time to write more a bit later (just up for a bathroom break in the middle of the night ). I did want to comment on your friend's suggestion though...and please don't shoot the messenger!

Many of us have found that stress really does make the pain worse...not sure why, but KBear has mentioned this in several posts. Now go have a bit more wine for both of us Hope you enjoy the rest of your trip.

[Greg]

Wow, you have so much going on! I'll take the time to write more a bit later (just up for a bathroom break in the middle of the night ). I did want to comment on your friend's suggestion though...and please don't shoot the messenger!

Many of us have found that stress really does make the pain worse...not sure why, but KBear has mentioned this in several posts. Now go have a bit more wine for both of us Hope you enjoy the rest of your trip.

Susanna,

Almost identical to Katie I am up for a bathroom/tone the pain down before I go back to bed break and just wanted to say that I'm glad you are moving forward with the surgery but am sorry for you unfortunate events. As soon as you said some guy off the street asked about your husband and a job I got a bad feeling and I think you guys are absolutely right....time is the essence in finding that guy so good luck. And I dont think your friend was trying to be insensitive and imply that your pain is pyscological and all coming from stress. I think she merely meant that stress (just as well as your mood or depression) can increase the pain levels you are having and prolonge recovery after surgery. Now I'm not saying your stressed or depressed but those are 2 factors that tend to go hand in hand with back pain and seem to intensify the pain someone experiences. But after the long day (and painful life) you have had I could understand you not seeing her point right off the back and thinking she meant something different. Hopefully you didnt chop her head off Wishing you the best of luck with everything and I'll catch up with you more a little later when I'm not so sleepy and in so much pain

[KBear]

I can tell that my pain is worse when I am stressed and/or depressed. I used to think that was crap, but it rings true for me.

[Cindylou]

Ditto here. It doesn't mean you are not in pain, so understandable you wanted to knock her off her feet! It's just that stress does indeed contribute to our pain levels. Unfortunately, your friend, like many a friend, didn't broach the subject with any discretion, and that certainly put you on the defensive. A little tip: don't expect her to ever get it. And that's the truth.

[KBear]

Ditto here. It doesn't mean you are not in pain, so understandable you wanted to knock her off her feet! It's just that stress does indeed contribute to our pain levels. Unfortunately, your friend, like many a friend, didn't broach the subject with any discretion, and that certainly put you on the defensive. A little tip: don't expect her to ever get it. And that's the truth.

Definitely true. I think before surgery when I was in huge amounts of pain, not much made a difference, or if it did, it was like a band aid on a gaping wound. Now post op since my pain is minimal, I notice the little things that cause pain or relieve it.

[Susanna]

Thanks everyone! I knew I could count on all of you for a perspective that was level headed and honest. I had such a migraine last night while I was writing my reply to you all. And I was still so steamed. There were four of us in our little dinner party last night. My girlfriend, who is really physically fit and has never had an injury, her husband, who is a psychologist, and a friend of theirs who is a physical therapist. So it was a really hard for me, who has put on 30 lbs since I have seen them 2 1/2 years ago. Believe it or not her husband was the least attacktive! The physical therapist was even doubting that I had the right diagnosis of Systemic Sensory Peripheral Neuropathy, even though I have had a biopsy of my tissue that has confirmed it. He was like, "have you had a second opinion?" I was like,"what, do you think that the tissue biopsy was wrong?" So stupid. It would be lovely if they could figure out what is causing it and stop it, but the point is that they haven't been able to. Then he was saying that my "emotions" could be causing my feet and hands to go numb, and then I had to remind him about the biopsy, and he was like, "oh, yeah, that's right". So it was a bit out of control, jumping on Susanna time.

I do know my girl friend didn't mean to hurt me. But I am so sick of people who try to tell me my pain is in my head. Like the first doctor I saw.

I do a lot of praying and giving it up to God though and I believe that is why I have been able to survive off of pain meds these last few months. Not an easy thing to do. As many of you can identify with. Can you imagine your day without the pain meds?

I am exhausted today. I think all the traveling around to see friends and such has wiped me out. I was suppose to go visit my in-laws today, and I'm just taking the whole day off. My internal clock is so screwed up from Alaska to here in WI, and my body isn't adjusting very well. So I will go visit with them a bit tomorrow before I leave for New London. I have been burping up rotten eggs every other day and think it is nerves about sitting in the car, which is so painful.

I desire so much to see my friends, but my body is rebelling at every turn. So today I will give in to my body and just rest.

On the bright side, my husband called and the man that came into his office called to say he decided he wasn't interested in the job. My husband called him and asked if he "might have accidentally have picked up his keys" AND he DID! So Audun got his keys back with his wedding ring back. What a relief!

Well, I'm off for a nap, in the middle of the afternoon! I will check back with you all a bit later!

Susanna