[St George 2013]

Hello everyone. I don't think I've posted a thread in a long time And this will be a long one to update anyone who would like to read it.

I've been around here though....reading and posting when I thought I could help.

After 4 doctors told me I needed to seek a pain mgmt. doctor (last one being at Emory in Atlanta) I finally got it through my thick skull.

So I searched the internet for places closer to Atl but not actually in Atl. We are south of Atl about 45 minutes. I found a place that is a satellite office for a larger practice to the east of Atl. I like what I read and their Mission Statement said what I wanted to hear. Asked my PCP to refer me so I could get in quicker. Only took a week.

Over the last year I have been to 2 'pain clinics' and was not comfortable with either one so I never went back. I was very pleased with my visit yesterday.

My neurologist of almost a year basically released me in June stating there was nothing else he could offer me. Then on Sept 9th the neuro doctor at Emory went through all the physical things done in a 1st time visit never paying attention to the fact that I was on hydro 10-325. At the end of this 2 hour visit she said "since you are not on narcotics" and I stopped her there. She explained she only treated SFN prior to narcotics. Would have been nice if someone from Emory had asked me that when I made the appointment. Would have saved me and the doctor time and the insurance company $. She offered to refer me to Emory's pain clinic but she understands I don't want to have to drive that far since someone has to take me to the visits.

I had to fill out quite a lot of paperwork for this new pain clinic and I could tell when the doctor came in that he had already read it. He read through the MRI of my neck and back x-rays from last June and took the time to show me (disc from MRI) issues in my neck and explain that even though I don't have problems now I need to know the info in case of future issues. On to the SFN pain. He explained a lot of options, was never pushy about any of them and said he would do whatever he could to get some quality of life back for me. Because I have servere SFN and basically no A and C fibers left in my feet this will be a life long battle to keep the pain down. We discussed:

Pain medications
Sympathetic nerve blocks
What was the most severe pain so we knew where to start (feet)
Spinal Cord Stimulator which he said was my best bet.
Marijuana Trial being performed at their main office (spray in the mouth)

Right now the only thing I take for the SFN is 1800 mg of gabapentin a day (cannot go higher----mental issues start) and hydro 10-325 3 x's a day. (I had tried Lyrica and Cymbalta which did not work for me) This has not been acceptable to me for pain issues and I basically can't do anything. Standing and walking, driving or even riding in a car without my feet up off the floorboard cause the nerves in my feet to go 'crazy'. Cooking, typing etc set my hands off. That puts me in the bed for days.

So I'm starting on the pain patch Butran. He said to use my hydro for breakthrough pain. He said to give the Butran a month to see how it works for me. It's the lowest dose of 5mcg/hr. Put it on last night, had a 'high' for about an hour and then I guess it settled down and I do longer felt 'high'.

My feet are the most painful so we're starting there. I am going to have a sympathetic nerve block on Friday for my left leg/foot.

I've pretty much ruled out the SCS because I've had a rare uterine cancer and am in remission at this point but have to have rechecks with gyn and then onco every 3 months. And because of the neck issue. They say no more MRI's if you have an SCS. I can't take the chance that at some point I would need one and could not have one. I've never been really thrilled with the thought of the SCS being 'scared in' as they say. The only reason I am letting him do the nerve block is because he'll 'knock' me out for it I'm a chicken when it comes to anything to do with sticking something in my back. Had both my children (34 and 29 now) natural because I was so scared of having an epidural.

Ok....that's it for me. I'm hoping for very positive results of the nerve block and maybe be able to actually 'do' something for a change. Spending 99% of your time at home (not even able to do anything in the yard) is not good physically or mentally.

Thanks everyone and hugs for a pain free day

Debi from Georgia

[Hopeless]

Sure hoping you find relief.

[IllPn]

Hey we have something in common I did not want epidurals in my back either so had my two children natural as well Was no picnic when one was a forceps delivery My two were born in England Pain relief there is nothing like here back in the 90's
What do you have going on with your neck? Mine is a mess now and progressing along with my low back I probably have small fiber as have the symptoms of that and the test I had a few yrs back should some degenerative changes in the nerves -that was a ankle punch test.
I hope this works for you and goes well. Let us know how you do

[St George 2013]

Originally Posted by IllPn

Hey we have something in common I did not want epidurals in my back either so had my two children natural as well Was no picnic when one was a forceps delivery My two were born in England Pain relief there is nothing like here back in the 90's
What do you have going on with your neck? Mine is a mess now and progressing along with my low back I probably have small fiber as have the symptoms of that and the test I had a few yrs back should some degenerative changes in the nerves -that was a ankle punch test.
I hope this works for you and goes well. Let us know how you do

Thanks for reading my update. My brother was born using forceps and my mom said it was awful. My first born was 12 hours of back labor but only the last 3 were really bad.....of course my daughter had to be more difficult but my labor from beginning to end was only 5 hours. After she was born everything went crazy and my placenta would not deliver and the dr wound up breaking it up. They had to put me to sleep to do the rest. Once I got home it was complete bed rest for 2 weeks due to the chance of severe hemmorage (sp?)

I cancelled my sympathetic nerve block for tomorrow. I had spoken to a dear friend about it and she reminded me that we really don't need to start more than one treatment at a time or we won't know what works.

I believe I am getting some relief using the patch I just put on Tues night. I've actually been able to start reducing the hydro.

Ok the neck....The impression part of the MRI report says:

Advanced multilevel cervical spondylosis resulting in varying degrees of spinal stenosis and neural foraminal narrowing.

Whatever is going on is most pronounced at C4-C5, C5-C6 and C6-C7.

Guessing that's my neck ?....lol

I also had 5 lumbar x-rays and I pretty much can't understand what they are talking about but a spine dr in Atl said arthritis is pretty bad in lower back. I have some lower back pain at times but not much.

I am just so relieved to have found what I believe is a good pain clinic. Time will tell.

If you understand anything the above said about my neck please let me know. Guess I should really look it all up so I can understand. The SFN in my feet and hands have been priority # 1 for 17 months now

Debi from Georgia

[ger715]

Thanks for the update.

A little "off topic", but forceps were used for the birth of my first born. I think it is more difficult for the baby. My daughter had a slight mark on both cheeks where the forceps were used. There have been times where injury resulted for the baby; especially when the forceps were used on the temples. I never had epidurals for the birth of any of my three children either.

Did have a series of epidural injections (light sedation) for my lower spine early on with my Pain Management doctor. They did not help. I, myself, had a failed trial SCS. PM doctor wanted me to try another trial. I explained my fears of having a permanent SCS implanted and was not willing to have an implant; so another trial would be of no use.

I had spinal fusion (rods/screws/laminectomy) so am not able to have MRI's, but did have a myleogram which is very informative.

Have had the same PM doctor for the past 4-5 years. What has helped the most to deal with painful spine issues, along with PN of the legs and feet is narcotic meds (Oxycontin and Oxycodone(Percocet) for break thru pain) .

I don't know if you have tried the Morton Epsom Lotion (purchased at Walgreens and recommended by Mrs. D); but when my ankles and feet burn to almost the point of tears; applying the Morton Epson Lotion to those areas really tones down the burning. Also, the Lidoderm (prescription)patches (I usually cut in half) are very useful for the spine pain. Both of these items can be used in other areas of the body as well.

Hope family is doing well.


Gerry

[hopeful]

Hi Debi,
This is good news. I'm glad you finally found someone who listened and explained things. I hope the new treatment works!

[Susanne C.]

I am also very happy that you have found a good doctor who listens and seems aware of your needs! My doctor mentioned BuTrans patches a few years ago, but we went with the morphine because of the cost and ability to adjust upwards when necessary. I am curious how the BuTrans works for you, as we both have the complete absence of small nerve fibers in feet and legs.
I currently have good pain relief on the MS Contin, but as you said this is for the long haul and we need to have options.
Keep us posted!

[St George 2013]

Originally Posted by ger715

Thanks for the update.

A little "off topic", but forceps were used for the birth of my first born. I think it is more difficult for the baby. My daughter had a slight mark on both cheeks where the forceps were used. There have been times where injury resulted for the baby; especially when the forceps were used on the temples. I never had epidurals for the birth of any of my three children either.

Did have a series of epidural injections (light sedation) for my lower spine early on with my Pain Management doctor. They did not help. I, myself, had a failed trial SCS. PM doctor wanted me to try another trial. I explained my fears of having a permanent SCS implanted and was not willing to have an implant; so another trial would be of no use.

I had spinal fusion (rods/screws/laminectomy) so am not able to have MRI's, but did have a myleogram which is very informative.

Have had the same PM doctor for the past 4-5 years. What has helped the most to deal with painful spine issues, along with PN of the legs and feet is narcotic meds (Oxycontin and Oxycodone(Percocet) for break thru pain) .

I don't know if you have tried the Morton Epsom Lotion (purchased at Walgreens and recommended by Mrs. D); but when my ankles and feet burn to almost the point of tears; applying the Morton Epson Lotion to those areas really tones down the burning. Also, the Lidoderm (prescription)patches (I usually cut in half) are very useful for the spine pain. Both of these items can be used in other areas of the body as well.

Hope family is doing well.


Gerry

Gerry you are so sweet Thanks for taking the time to read my 'long' post.

Back to forceps.....my mom said they caused the sides of my brothers head to be wavy.....maybe that is what's wrong with him ! Nope...wish I could blame his being an a-hole on that.....I think it's a specific line of family blood. I've seen his 'issues' in many other relatives of the same blood line. My son is the newest and has stepped away from us and his sister and her family.

I'm hoping that I struck gold with the first PM clinic that actually looked and felt like what I thought it should.

I do use the Morton's lotion. I think it helps sometimes and other times not. I have a lot of trouble with the outside of my left foot....That bone sticks out a little more than it should and will swell slightly but boy is it painful. The lotion didn't quiet it down last night. But I will keep using it. I have noticed when my ankles get that crampy feeling that the lotion soothes them.

That spinal fusion sounds scary as I am chicken with anything having to do with the back....oh....I've already established that above haven't I ?

I thought my son 'taking a break' from this part of the family would really bother me. He was a 'call his mom' at least 3 times a day son. And he just quit....I've only seen in once since the week of June 20th. When he and his 3rd wife got together and then married everything was great, fun, loving and so on for about 5 years. Then slowly things started changing....felt like I was walking on egg shells around them. And I HATE that feeling. We do text back and forth every few weeks and tell each other we love one another but that's about the extent of it. I do feel like a weight has been lifted from my shoulders since they are not in and out of the house all week and weekend long. Is that terrible of me ?

Boy did I get off the subject. Anyway.....I'm going to try this patch for a month and then go back and discuss with pain dr.

Take care.

Debi from Georgia

[Susanne C.]

Completely understand the relief of having adult children out of the way for a while! My eldest son, my "favorite" because he is just like me is also unbearable. He has taught on the other side of the planet since he was 22, and that is just fine. I am ready to ship one or two of his siblings off....

[St George 2013]

Originally Posted by Susanne C.

Completely understand the relief of having adult children out of the way for a while! My eldest son, my "favorite" because he is just like me is also unbearable. He has taught on the other side of the planet since he was 22, and that is just fine. I am ready to ship one or two of his siblings off....

Maybe we can ship them off together....lol

You know Susanne.....before I had the uterine cancer and went through chemo I would have crawled up in the recliner and cried myself sick for weeks after my son 'backed' away from the family. I am a much stronger person now. I know that whatever he is going through his 'head' is not my fault. Some of the things he texted me when this first started were just outrageous. Totally out of character for him. He is a narcotics officer (just started last year, was on patrol prior to that) and I think that has really gotten to him. And it's up to him when he wants to re-enter this part of the family. I love him and I tell him so on text every few weeks. He comes back immediately and says he loves me too. Weird. Never expected this to happen but it has brought a lot of relief my way. Took a weight off my shoulders that I really didn't know was there until he and his 3rd wife and step-children stopped coming over during the week and on weekends. I had got to the point where I was walking on egg shells around them. Scared I would say something that would later be misconstrued. He's been married to this 3rd wife for 7 years and the first 5 years were great. Our immediate 13 people loved being together, vacationing together every year for a week and so on. I treated his step-children just like my 2 biological grandsons.

Anywho.....yep....me and you got it going on with NO fibers don't we ? I still remember when the foot dr told me my biopsy results....I just cried....from the relief of knowing what was wrong. But I had no idea at the time what I was facing.

I am going to use this patch for a month and then go back and discuss with the dr. I had a stomach ache Tues night and all day Wed...went to bed with it hurting. I started the patch on Tues. But that seems to have disappeared thank goodness. And yesterday when I was resting on the bed my feet didn't actually 'hurt' but it felt to me like it was just under the surface....ready to explode at any time. That was strange.

I will keep you posted and thanks to all for letting me 'air' some of my personal issues. I'm an open book and it drives my husband crazy.

I am so happy the cool weather is here....my feet and hands love cool.

Debi from Georgia

P.S. -- I had written a prior reply to your 1st message but then it was gone. No telling what I 'hit' to make that happen....gonna be a good day.