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TwinmomTN
09-08-2012, 10:30 AM
I have tried to hold off posting of my situation for as long as possible hoping it would improve and I hate to be such a downer. I have been suffering from debilitating sciatic pain since approximately 7 weeks post-op. My surgery was April 20th so I am not quite 5 months post-op. My question is how do you know if scar tissue is causing sciatic pain? And IF scar tissue is the cause is it a hopeless case?? I have read about cases of this internet stating that nothing can be done and you are dealing with a lifetime of pain management. I have had a CT myleogram which looked "normal", a piriformus injection that provided no relief, and recently a L-5 nerve root block. I am currently on Gabapentin and Percocet but am still unable to function. Anytime upright exceeding 30-45 minutes always causes excruciating pain. Most days I struggle to try to walk 2 miles but some days not even that much. The only relief comes from lying down. Any insight into sciatic pain relating to scar tissue or any other possible causes would be greatly appreciated!

hasteffen
09-08-2012, 10:51 AM
Pam,
I have a friend going through this as well. She is on the forum and posted about this issue. She also had injections with no relief. She is 18 months post op now and seems to be doing well. I will say I think she pushes through the pain. If she thinks about it, it is much worse. She has gotten back to the dating scene and has thrown herself back into her work. I know this isn't the news you wanted to hear. You are still so early in you recovery. I wish you only the best
Heidi

TwinmomTN
09-08-2012, 11:00 AM
Heidi,

Thanks so much for your reply. What is your friend's username? I'd love to read some of her posts and
compare her situation to mine.

You will do great with your surgery. Try to occupy your time with exercise and
as much walking as you can. Of course, music always helps too.

Pam

leahdragonfly
09-08-2012, 11:00 AM
Hi Pam,

I am really sorry to hear of your sciatica. I did have some odd and unpleasant nerve-type symptoms appear around 6 weeks post-op on both of my surgeries. Both times I developed numbness in the left underside of toes, and foot, with tingling along the lower leg and some pain in the left upper leg. These sensations appeared suddenly and I was very concerned and disappointed. Then after a period of weeks they suddenly went away completely. I am now completely free of this except I do get a little left upper leg pain on days where I have been very active and overdone things.

It sounds like your sciatica is very severe and debilitating though, and I wonder if you have been in contact with Lenke's office recently about it? What do they have to say about it? Is PT an option, just to try? Sometimes a very skilled PT who actually does body work (not just prescribe exercises) can pinpoint a reversible cause of this type of thing.

Take care, and please let us know how you are doing.

TwinmomTN
09-08-2012, 11:13 AM
Gayle,

Yes I have been talking with Karen at Lenke's office quite often who suggested the injections. I did try a local p.t., but did not feel comfortable since some of the exercises they had me doing Lenke's office did not approve of. I also spoke to Janet, Lenke's p.t., yesterday who did not recommend anything beyond her 0-6 month regimen. I just feel so hopeless and like my life is over. Unfortunately, I have two 11 year old children that are basically without a mom. Unless there is drastic improvement in the pain in the next 3 months, I will lose my job. My marriage is suffering since my husband has to do everything at home so he has constant demands. Living the last 3 months in bed, I do feel like my life is over.

Doodles
09-08-2012, 09:44 PM
Pam--I feel so bad for you. That does seem like an awful lot of pain you are going through at this point. Do they want you to still continue with 2 miles every day even with that much pain. I had pretty much the same surgery and I truly doubt I was close to 2 miles at that time. Plus, I was on meds for over a year. SLOWLY going down. Could it be you need to just give it a rest for a few days? I really am just guessing. It sounds like you've tried a lot of things. I hope you can find some answers. Janet

mabeckoff
09-08-2012, 09:49 PM
Do you have bone spurs that could be pressing on your nerve/s?

TwinmomTN
09-08-2012, 10:16 PM
Sorry to be so ignorant, but how are bone spurs detected? I had x-rays at 8 weeks post and a CT myelogram in July, florescopy with the injections.

mabeckoff
09-08-2012, 11:31 PM
Sorry to be so ignorant, but how are bone spurs detected? I had x-rays at 8 weeks post and a CT myelogram in July, florescopy with the injections.

Dr Bederman saw them, first on an Xray. I could even see them . I cannot remember if he did any other tests before surgery.

jrnyc
09-09-2012, 01:37 AM
bone spurs on my spine were found with MRI...

jess

golfnut
09-09-2012, 10:51 AM
Pam,
I feel so bad hearing of your severe pain. I know you've been in contact with Dr. Lenke's office often, but I would persist since you have not gotten much relief. There are others who have had similar issues during the first six months or so who eventually had the symptoms diminish. Obviously, until that hapens, you need some answers and pain relief. Maybe, like Janet (Doodles) said, you should break up your walks during the day and shorten the distance temporarily. You need to vent all of your frustrations on the forum and not be concerned with a post that isn't full of positives. I hope you get some answers soon.

TwinmomTN
09-09-2012, 11:26 AM
Thank you everyone so much for your responses! For those that had this and eventually got diminished pain, I'm wondering what helped or if it just got better with time?

leahdragonfly
09-09-2012, 11:32 AM
Hi Pam,

I am so sorry also that nothing seems to be helping. This is a very difficult recovery anyway, and having school-age kids at home adds to the difficulty.

I agree with Karen to keep contacting Dr Lenke's office and let them know how bad you still are feeling. You are way too young to have to live like this.

Take care,

golfnut
09-09-2012, 12:36 PM
Pam,
Do a search for "Confused Mom". This is Evelyn's thread, "Facing Surgery-Decisions . . ."who will have her yearly check up with Dr. Lenke on September 19. Go to post #155 and she has concerns about some pains which sound similar to yours and I think is doing much better. Possibly, you could send her a PM. I just noticed that I have 2 PM's. I hate it that I don't get an email notification any more and miss respondig to people.

Confusedmom
09-10-2012, 12:02 AM
Hi Pam,

I'm glad you posted. Everyone needs to know about this, and hopefully you will get some ideas. There was a woman in the Tampa area who had severe leg pain for a while who actually tried hypnosis and got relief. I tend to be skeptical of such things, but I also am a believer in whatever works!! Search under Tampa.

At this point I would call Kelly directly, not Karen, and explain exactly how bad your situation is. Use the words you used on your posts. I cannot believe Dr. Lenke will leave you in this condition. He will do a revision if necessary. If there is scar tissue, can't it be removed? If bone can, then why not scar? Also, I would think more imaging is in order at this point, since the pain is not diminished. If it is something progressive, like scar tissue or BMP pressing on a nerve, maybe new images would show it?

You have got to fight for yourself right now!!! You will WILL get through this!!!!!

Karen, Pam and I have been in touch for a while, but I don't think my pain was as bad as hers. I'll be six months at 9/19 appt., just five weeks ahead of Pam. My sciatica is much better, but not gone. But still I would say I'm able to function relatively normally. I cannot walk as fast or as far as I would like, though.

On that note, Pam, I do think you should ask Kelly about decreasing walking for a while. Maybe give the nerve some time to rest. Also, ask her when you can take anti-inflammatories. You should be getting close. If inflammation is the issue, that could be a godsend.

You are in my thoughts and prayers!

Evelyn

yacpatty
09-10-2012, 12:14 AM
Hi Pam,

Can't you talk to Dr. Lenke directly? There has to be an explanation for this especially from a doctor with his expertise. I would demand that he talk to you considering the miles you traveled to have surgery with him and then to be left with so many unanswered questions. Good luck finding some answers. Hold onto hope......the hope that this is not permanent and that something can be done to help this. I am praying for you.
Pat

hasteffen
09-10-2012, 08:31 AM
Evelyn, Is this the Pam that you shared my prayer with? I don't know why it took me so long to piece it together...

GOE
09-10-2012, 10:35 AM
I have tried to hold off posting of my situation for as long as possible hoping it would improve and I hate to be such a downer. I have been suffering from debilitating sciatic pain since approximately 7 weeks post-op. My surgery was April 20th so I am not quite 5 months post-op. My question is how do you know if scar tissue is causing sciatic pain? And IF scar tissue is the cause is it a hopeless case?? I have read about cases of this internet stating that nothing can be done and you are dealing with a lifetime of pain management. I have had a CT myleogram which looked "normal", a piriformus injection that provided no relief, and recently a L-5 nerve root block. I am currently on Gabapentin and Percocet but am still unable to function. Anytime upright exceeding 30-45 minutes always causes excruciating pain. Most days I struggle to try to walk 2 miles but some days not even that much. The only relief comes from lying down. Any insight into sciatic pain relating to scar tissue or any other possible causes would be greatly appreciated!

Twinmom - First thank you for posting. I am guilty of being one of those who never wanted to post anything that might be discouraging to the rest of the group while going through my hard recovery. But the truth is it helps create a healthy balance and realistic expectations for those going ahead with surgery even with the best of the best. The awesome ladies my surgeons office put me in touch with before surgery had no issues during their recovery so I really had no reference point and felt I would be a downer sharing any negative experience.

Anyways in response to your post, I developed debilitating sciatic pain as well in my right lower extremity immediately after surgery. Infact a few days after surgery my mum noticed that my right hip and upper thigh was visibly swollen and I could barely stand to be touched there. The intensity continued to be very bad through my sixth month and like you anytime sitting for any decent amount of time caused pain. I tend to be very determined so I continued to push through the pain to get my walks in (typically 3-5 miles , 3- 4 times a week) to aid the fusion. However at my 6 month appt I was in sooo much pain and couldn't go back to work so I cut back on the walking drastically and literally took a month off from walking. I still took leisurely walks but it probably was nothing more than 1 mile a day. I can't say if that was what did it but by my 7 month I was in soooo much less pain and it has continued to taper downwards since then. So my point is don't feel too bad about not being able to walk more than 2 miles. I know we are all very strong individuals having dealt with scoliosis for sooo long and want to walk quite a bit since they say it helps with the fusion but I don't think the goal is to set off sooo much pain that we can't function. Maybe taper down your activity some and see if the pain subsides. Dr Boachie seemed to think that mine was caused by stretched nerves and he said that would not show up any studies (xrays/cts) so I pretty much had to hope and pray it would go away. He put me on gabapentin as well for the nerves so seems like our situations might be similar. I still have some pain but like I said earlier it has continued to taper down slowly so I am praying I'll wake up one day and realize its completely gone. I hope this provides some encouragement and hope to you that this pain could go away. Hang in there. You are in my thoughts.

TwinmomTN
09-10-2012, 11:17 AM
Thank you GOE for responding to my post and sharing your situation. It is comforting to know that someone else has been there and the pain did eventually diminish. I have also wondered in addition to scar tissue if the pelvic screw is irritating the nerve, since I am fused to the sacrum. It looks like this would show up on an x-ray. I am currently backing off on the walking in hopes that this might help.

Heidi, yes I am the one that Evelyn shared the wonderful prayer with which brought tears when I read it. Thank you for sharing the prayer. Evelyn has been such a wonderful supportive friend throughout these past 5 months. I met her at my pre-op day which was her 5 week follow up and we have been in contact since comparing notes, etc.

Evelyn, thanks once again for your encouraging words. At this point, I don't really feel inflammation is the main issue since I have had several steroids (medrol dose pack, piriformus injection,nerve block) none of which seem to have had a significant impact on my pain.

GOE
09-10-2012, 11:54 AM
Thank you GOE for responding to my post and sharing your situation. It is comforting to know that someone else has been there and the pain did eventually diminish. I have also wondered in addition to scar tissue if the pelvic screw is irritating the nerve, since I am fused to the sacrum. It looks like this would show up on an x-ray. I am currently backing off on the walking in hopes that this might help.

Heidi, yes I am the one that Evelyn shared the wonderful prayer with which brought tears when I read it. Thank you for sharing the prayer. Evelyn has been such a wonderful supportive friend throughout these past 5 months. I met her at my pre-op day which was her 5 week follow up and we have been in contact since comparing notes, etc.

Evelyn, thanks once again for your encouraging words. At this point, I don't really feel inflammation is the main issue since I have had several steroids (medrol dose pack, piriformus injection,nerve block) none of which seem to have had a significant impact on my pain.

I agree since I am not fused to the sacrum, yours might have to do with the screw as well so definitely have that checked out. FYI I also had the medrol dose pack twice (immediately after surgery) and at around 8 weeks and like you I did not feel like it helped the pain. I must confess that I have still not tried taking NSAIDS even though Dr Boachie gave me the go ahead at around 3 months. Just being overly cautious about my fusion but might be worth asking Dr Lenke and see what he says about that like Evelyn said.

Doreen1
09-10-2012, 12:54 PM
Many continued prayers for you, Pam.

Warmly,
Doreen

golfnut
09-10-2012, 02:30 PM
I have never met Karen, but I agree with Evelyn, that you should ask to have Kelly return your call. Tell her exactly how bad it is and insist that something be recommended by Dr. Lenke. My thoughts and prayers are with you. I know you'll get through this, but the sooner the better.

TwinmomTN
09-10-2012, 03:58 PM
Karen at Dr. Lenke's office, said he recommended the trigger point injection and
nerve root block. Both of which I have had but have not helped the pain. When I
did ask Kelly to return my call she never did but had Karen to instead.

Confusedmom
09-10-2012, 05:19 PM
Pam,
Do you still have Kelly's new number? I wouldn't hesitate to badger her a little bit. Tell her all the different things you've tried and how you're still feeling. Leave that on her VM, and I bet she'll call back. If not, tell Naomi and ask her to put you in touch with Kelly. One time they actually paged her for me (when my insurance wasn't going through). They can't just leave you hanging!!! If necessary, I'll flag Kelly down for you when I'm there next week.

Thanks for your kind words earlier, too. Heidi, you made me cry with that prayer, as well, and I'm not a cryer.

Evelyn

Confusedmom
09-10-2012, 05:22 PM
Oh, one more thing. I was talking to my mom about you, and she suggested you ask for a resident to call back. That's another way to go if you can't get Kelly. One did call me after my five-week appointment. My mom is keeping her fingers crossed for you, too!!

Evelyn

TwinmomTN
09-15-2012, 10:04 PM
How many of you had physical therapy and at what point in your recovery? I am 5 months post-op and
was told by Dr. Lenke's office that I need to do p.t. I realize others have been told NOT to do p.t. so I guess this is supposed to help with the pain? I don't really understand how p. t. would reduce nerve pain
it seems to me that it would actually aggravate it. Can any of you nurses or other health professionals
please chime in?

Any feedback would be greatly appreciated.

loves to skate
09-17-2012, 01:46 PM
PT in some cases can help with nerve pain. For me PT helped with muscular pain and helped strengthen muscles but didn't help with my nerve pain. I would say though since we are all different, it is definitely worth a try.
Sally

Karen Ocker
09-18-2012, 02:45 PM
The sciatic nerve runs through each buttock down the leg. Anything which can irritate that nerve along its path can cause sciatica. If a buttock injection is not given in the right spot (right upper outer quadrant) an injection can indeed be given into the sciatic nerve causing sciatica. In my case if I lay flat on a hard surface my sciatic nerves get pressed and they complain. Over stretching the leg in certain ways, before it is flexible enough, can irritate the nerve.
With surgery many nerves were stretched from former positions. After surgery, as they awaken, they will complain and cause pain. All these problems abated over time- 18 months in my case.

TwinmomTN
09-18-2012, 04:39 PM
If I only knew the pain would get better, it would make it more bearable at this point. But to not know
what is causing it and to only be able to be up for no longer than 30 minutes without excruciating pain makes this so difficult to say the least. Was anyone else out there in this much pain while recuperating?

Confusedmom
09-19-2012, 12:04 AM
Pam,
Look at the revisions board. Definitely some people on there were in massive pain post-op. Also some on first time, but harder to find. You are not alone.

Evelyn

Karen Ocker
09-20-2012, 08:04 PM
Pam, You had a massive correction-better than mine. For sure your whole sciatic nerve had to be shifted. I did have sciatica post op which sometimes moved from one side to the other. I was on neurontin for nerve pain for 6 months post op. That helped the general nerve pain which narcotics do not touch. My suggestion is to consult a pain doc and get better pain relief using other methods. Walking helped.

I was fortunate in that my pain doc- I only used him for about 7 months and no more-kept my pain under control without too many narcotics so that I could rest and exercise. I wasn't totally pain free for 18 months. After 6 months I used Aleve and Tylenol arthritis with good relief.

It stands to reason that the bigger the correction the more one's nerves will "object" and "complain". Try not to let fear take over.

Confusedmom
09-20-2012, 09:28 PM
Pam,

Dr. Lenke's resident said yesterday that the pain should continue to lessen for at least a year!

Evelyn