Upsetting news from the doctor...

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Regular Member

Date Joined Jul 2005
Total Posts : 229
   Posted 6/10/2010 12:19 PM (GMT -6)   
I had an appt. with my pain doctor yesterday and we were supposed to discuss my options of  what to do with this Complex Regional Pain Syndrome that has been my unwanted best friend since Aug. The three steroid treatments did nothing so my husband and I thought that we would be discussing the nerve block like the doctor had mentioned several times before. The doctor walks in and sits down and says" I can see how miserable that you are. It's all over your face. I thought that since the first injection worked a little that maybe we could get some progress by going forward but that just didn't happen. I've given the nerve block a lot of thought and since the right side of your throat is permantly paralalized I don't think that we should take the chance with side effects of the nerve block. I'd like you to see a doctor that we work with who does the spinal tens units and see what he has to say. He's a very good doctor and I trust him totally. If it's O.K. with you, we will make the referral and then give you a call with the appt." I start PT tomorrow to see if they can do something to relieve the pain. The doc did increase my patches to 75mg. just by looking at me. All I've done has been cry the last 6 weeks but I think it has been the steroids. They always  have that affect on me. I haven't cried once today (yet) so things are working their way out.
I'd like anyone who has any information one these spinal TENS units to please give me some info because I'm just a little on edge now. If it was my neurosergeon doing this I woundn't be worried but it he doesn't do this sort of proceedure..........Lot's to think about.
Nurse 2
Degenerative disc disease,osteoarthritis, status post 4 cervical spinal surgeries with plate insertions and fusion, Lupus, Sjogren's Disease, Fibromyalgia, bilaterial knee replacements, total left shoulder replacement, years of chronic headaches and chronic pain, asthma.
Find blessings in every day!

Veteran Member

Date Joined Sep 2009
Total Posts : 663
   Posted 6/10/2010 1:05 PM (GMT -6)   
Hi Nurse2, I am so sorry you are having such a horrible time right now. I don't have any info on the tens unit but I did want you to know that you are in my thoughts and prayers. I am sure there will be alot of members come by soon with much needed information for you. I sure hope you get some relief soon. Take care.
Gentle Hugs,
Fibromyalgia, Chronic daily headaches, Migraine disorder (with and without aura), GERD, High blood pressure, Depression and Anxiety
Oxycontin, Flexeril as needed, Lopressor, Lexapro, Omeprazole, Clonazepam as needed, Promethazine as needed for nausea from migraines

Veteran Member

Date Joined Jul 2008
Total Posts : 1559
   Posted 6/10/2010 4:57 PM (GMT -6)   
I am so sorry Nurse that you are having all these problems. I do hope for a little relief for you. Are you talking about the external tens unit?


I live to "Tame My Pain!" 

Veteran Member

Date Joined Sep 2006
Total Posts : 1713
   Posted 6/10/2010 5:35 PM (GMT -6)   
I have used an external tens unit on my lower spinal area over the s/i joints and it has been a tremendous help. But I think perhaps you may be talking about something else. At any rate, I wish you well and I will say a prayer for you.

Co-Moderator Chronic Pain and Fibromyalgia Forums
Believe in yourself.  Be kind to fellow humans and animals.  Take time to smell the flowers and the coffee.
And by all means, when you are down, ask me for help.  I will be there.

Veteran Member

Date Joined May 2010
Total Posts : 594
   Posted 6/10/2010 5:38 PM (GMT -6)   
Hi Nurse, so sorry you are suffering! I have also, only used the external tens unit. It was a great help! Sending good wishes your way! Take care of you!


Veteran Member

Date Joined Mar 2008
Total Posts : 2976
   Posted 6/10/2010 7:48 PM (GMT -6)   
((((((((((nurse2))))))))))). I hope the increase in the patch helps!

Is your doctor talking about an external tens unit or an SCS? I was supposed to go through a trial of a peripheral nerve stimulator (same device as an SCS, just the electrodes would be placed on facial nerves, not spinal nerves) a couple weeks ago, but it got postponed (again) due to insurance issues with the hospital & I don't have a new date yet because we are having a hard time getting 2 OR times 7 - 10 days apart (for the trial & then the implantation or removal) at the new hospital.


White Beard
Forum Moderator

Date Joined Feb 2009
Total Posts : 3601
   Posted 6/10/2010 8:48 PM (GMT -6)   
Hi Nurse2

I believe your talking about the spinal simulator, where the surgerically implant the electrodes into the spine. Is that what you are talking about that your Doctor wants to try on you to relieve your pain? If so there are a few people on this forum that have them. I will see if I can round up a few to come this way and see your post!

I wish you all the best!

White Beard

Forum Moderator

Date Joined Feb 2003
Total Posts : 13354
   Posted 6/10/2010 9:10 PM (GMT -6)   
Nurse so sorry to hear this too, but if it helps with your pain that would be great. If you are talking about the SCS implant please use the search here at the forum, type in SCS stimulators and you will find lots of info there too.

crohns disease dx 2002 & small bowel resection, still looking for remission whatever that is, chronic pain 22 yrs, added ulcerative colitis 6-05 to the mix, high blood pressure 28 yrs, aortic heart valve insuffiency, depression, osteoarthritis, osteoporosis lumbar spine, scoliosis lumbar spine, peripheral neuropathy hands & feet, COPD & on oxygen therapy, lupus & psoriasis and psoratic arthritis. Several other health issues just not enough room to list it all. Too many surgeries to list and too many medications to list. Currently on 17 different daily medications. Intrathecal pain pump implanted June 05.

Veteran Member

Date Joined Jul 2008
Total Posts : 2268
   Posted 6/10/2010 10:26 PM (GMT -6)   
If it is a Spinal Cord Stimulator, the key thing is to have someone who's got plenty of experience implanting them. My NS actually did do the implants, but I had my PM do the implant because he was willing to do it without sedation & could provide continued care over the years after the implant.

There is a ton of info about the SCS on this forum, but if that's what you're doing you should get a trial first & your experience with the trial will give you the best information about whether it will work for you. The surgeon should be willing to meet with you & answer all your questions even before the trial.

take care,

Veteran Member

Date Joined Feb 2009
Total Posts : 999
   Posted 6/10/2010 11:13 PM (GMT -6)   
Nurse 2, I know well the feeling when the dr comes in the room and does not have to ask how you are doing. On one hand, it is reassuring to know that the dr is that aware. on the other hand, we wonder why it has taken so long to get help when it feels like all is caving in around us. From you post, there seems to be some confusion about what procedure your dr wants you to have. There is an external tens unit that works by having electrodes taped to the skin in 2 or 4 places. The pads that contain the electrodes are not painful to put on or take off. You control the amount of shock that you receive. Again, it is not painful but can take a little while to get used to the feeling of the tingling going on constantly. I used a tens unit and still have mine although I did not find the relief I was looking for. It works better for some than others.
If the dr is talking the Spinal Cord Stimulator, then that is a totally different senerio. As was described in replies, there is usually a week trial period. If the trial goes well then the leads are surgically implanted along with the generator. If possible, can you clear up the procedure that you are looking at so we can give you greater imput. I know it has been a long haul but all any of us can tell you is to keep fighting and hopefully the increase in the meds will help until the next step is taken. I will check back in later to see if you are around.

Regular Member

Date Joined Jul 2005
Total Posts : 229
   Posted 6/12/2010 7:47 AM (GMT -6)   
Dear Fatherjohn,
I started my physical therapy yesterday and while it is minor to another other human on the planet, I feel like I've been run over by a car tonight. I can't sleep. My skin is sore. Oh well, I've been at this physical theraphy stuff for 38 years now so since it hasn't broken me yet I don't exepect it wll yet. To answer your question, Fatherjohn, my husband and I were in such shock from going from the nerve block procedure that we were so sure that things were moving towards that when the doctor came in with the whole change of game plan (which I had said all along that I would not go along with the nerve block) to this other procedure that we both just heard spinal unit and I don't think that it is like on of those things that I used to wear that clipped to my belt, now that I think of it because I remember seeing a metal like thing that had wires coming from it and my doctor said that he would let the other doctor do all of the explaining about how it works, etc. because he was the one who was going to be putting it in. It's awful to get old and lost your mind completely. It was a small metal thing , about the size of the old beepers years ago, if that helps. Anyway we were just so floored we just left and are waitiing for the calll for the appointment to see him and see how this thing works. Depending where they have to insert it, my anatomy night not be right to all ow insertion of the the thing. We will just have to see. God has taken care of me this long so it looks like he still has a little work to do.
Degenerative disc disease,osteoarthritis, status post 4 cervical spinal surgeries with plate insertions and fusion, Lupus, Sjogren's Disease, Fibromyalgia, bilaterial knee replacements, total left shoulder replacement, years of chronic headaches and chronic pain, asthma.
Find blessings in every day!

Veteran Member

Date Joined Feb 2009
Total Posts : 999
   Posted 6/12/2010 11:43 AM (GMT -6)   
Nurse, I know what you mean that when the drs say something and you are expecting something else, it can be difficult to fully understand what they are saying. It is not until later that you come up with the questions and other remarks that you would like to ask. It is not like you can call them up any time and ask them questions. It sounds like the SCS unit or spinal cord simulator. Usually they do a 7 day trial first. That includes a small procedure where they don't knock you out but insert one or two wires along the spinal column and they have a rep there from the maker of the scs and when they think they have it in place, they can hook it up and see how it works. Then they tape the wires down and you have a small control unit that you can adjust the amount of electrical shock which allows you to see how well it works. I went back to work the same day when I had my trial but normally they would have you rest for a day or so.
After the week is up, they ask you how the scs worked for you. If you get relief then they consider the implant. That is a little more involved as they set the wire leads into the spinal column and implant a small generator under the skin. When do you go see the next dr who is to do the procedure? Keep in touch and I will help in any way I can.
I know what you mean when you say God still has work to do. We might not fully understand why God does what He does, but we still trust Him and look to Him for the strength and comfort we need. Blessings!

Veteran Member

Date Joined Nov 2008
Total Posts : 1037
   Posted 6/12/2010 2:05 PM (GMT -6)   
Awwww Nurse...I am so sorry that it didn't go the way you wanted it to... I know that your emotions are all over the place, mine too. It's unavoidable to have to ride the emotional rollercoaster while dealing with CP, so know that you are NOT ALONE.

As far as the TENS unit goes, I am assuming that you are talking about the one that you hook the electrodes to the part of your body that hurts, then adjust the level of electricity to that part? If that's what you mean then I say try it. I have had a few of these over the years and they don't make things worse so give it a try. Some Dr.s are scared to do anything but be conservative so maybe this new Dr. will help you more.

Good Luck,

Spinal Stenosis, DDD, DJD, HBP, Type 2 Diabetes

Methadone 120 mg. X daily
Oxycodone 30 mg. 5 X daily
Lisinopril HCTZ 10/12.5 2 X daily
Metformin ER 500 mg. X 2 @ bedtime
Novolin 50-0-50-50
Novolin R 0-50-0-0

That's all....but OMG!! isn't that enough?

Regular Member

Date Joined Jul 2005
Total Posts : 229
   Posted 6/21/2010 4:41 AM (GMT -6)   
Well, there has been no word from the doctors office about the referral so when I was at my physical therapy appt. last Fri. my husband went to talk to my pain doc's office about it. They couldn't understand it because they said that usually they do the referrals quickly. The receptionist was going to call and check on things and send my chart again. Thing is, he may have looked at the chart and decided to leave town rather than touch a person like me with so many problems. :) I'm sure that I'll be hearing something.
Right now I think I'm going to have to see my internest because all I want to do is sleep. I have suffered for years with not being able to sleep and I know that I'm on this Duragesic patch but I can't keep my eye's open. Most evenings I go to bed at 6:30p.m. and sleep until about 3:00a.m. I get up, get some water, go to the bathroom and get back into bed until around 6:00a.m. I could take a 3 hour nap in the afternoon too. I didn't have this problem with the patch when I first started it so I wonder if my anemia is worse. It wasn't that bad to begin with but my doctor put me on iron. I take it faithfully but I feel like someone has sucked the "life-force" out of me. I've stopped the 6 wks. of daily sobbing my eyes out due to the steroids and they should be out of my system now. I do have a little good news. The physical therapy has given me a little more movement in my arm. I can now, with some straining, touch my right shoulder and I haven't done that for 10 months. YEAH! It might be time for a little blood work. My 24 hr. urine was off (high) by 100 pts. and my rheumy said that she would check it again at my next visit-----3 mon. away.
Hope everyone has a good day. I hear the birds singing outside so it must be time to crawl back in bed and listen to their song for a little while.
Degenerative disc disease,osteoarthritis, status post 4 cervical spinal surgeries with plate insertions and fusion, Lupus, Sjogren's Disease, Fibromyalgia, bilaterial knee replacements, total left shoulder replacement, years of chronic headaches and chronic pain, asthma.
Find blessings in every day!

Veteran Member

Date Joined Aug 2006
Total Posts : 9607
   Posted 6/21/2010 9:42 AM (GMT -6)   
Well, there used to be someone here called tinman, he'd had the SCS implanted and talked about them...
He had it done on the cervical and lower lumbar areas, but he did not get good placements of them on the cerical
area and he'd caution you that they can move, and for that area to get the best surgeon in your whole area...
So my advise would be to seek out the best surgeon that can do these...
I sure wish I had ssome better advise for I'd say maybe try the radiofrequency ablations first...
Prayers for you and lots of soft healing hugz
* Asthma, Allergies, Osteoarthritis, Spinal Stenosis, Degenative Disc (Lower Lumbar S1-L3 and Cervical C5,C6, C8 and T1), Fibromyalgia, Gerd,
Enlarged Pituitary Gland, Sjogren's, Ocular Migraines, mild carpel tunnel, ect.... "Would be nice if we could use the edit button in real life"...


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