Trying to decide

[jackieg412]

Hi to all. I haven't been on the site much. But now I am faced with another decision. I now have an answer to some of the strange things that are happening. In January I was diagnosed with a condition called arachnoiditis . Of the 5 things listed to cause this problem , I have had 4. While most likely the spinal surgery did it ,I guess I won't ever know for sure. It is a progressive neurological pain condition.
So far , I am being treated at Rush University in Chicago. I spent a week there at mid June under going an intrathecal medication study. It determined that I am not a candidate for opioid medication. Then we tried clonidine with a numbing agent with some success. However, I was told that I would build a tolerance to that drug and they needed a back up medication. So priault was tried. It is made from the venom of sea snails. Really weird. I did not do well on that either.
A spinal cord stimulator is another option . in April the Dr from rush tried to get through the fusion to place the leads but could not do it. It would require another spinal surgery to remove a part of the fusion to create access to place the leads.
I know there are members that have this so please let me know how it was accomplished.
On Tuesday I meet with them again. I am armed with an arms length of questions.
Since this condition has no cure, I can only hope to treat it. The neurological symptoms are increasing and I have a brace on one leg to prevent breaking my foot. In June I tripped on the other and broke it. So it looks like another brace. After it healed I fell again but just scrapes and bruises this time.
I need to seek their guidance as to which treatment is the best option.

[LindaRacine]

Hi...

I've been approved for a spinal cord stimulator, but we've decided to try a one level decompression instead. (If that doesn't work, we'll probably proceed with the SCS.) I also had the trial placement surgery, and they couldn't get past the scar tissue.

My understanding is that a laminectomy has to be done to gain access for the paddles. (They can place the smaller test leads without a laminectomy, but the paddles always require a laminectomy.)

Did anyone mention a dorsal root ganglion stimulator? It's relatively new technology.

https://paindoctor.com/treatments/do...g-stimulation/

--Linda

[jackieg412]

First of all good luck to you Linda. Thank you for the information. I will add it to my list of questions.
The Dr did mention using a paddle. And that brought up the need for another spine surgery. We are trying to make that a last resort.
Remember I had a muscle fail and we are trying not to compromise any more.
The muscle transfer is doing well. It allows me to make most motions with my arm. A little stiff here and there but mostly good.

[LindaRacine]

Thanks Jackie... Are you on gabapentin?

--Linda

[jackieg412]

Not at this time. I have to stay clear of medication. It seems like everything gives me so many side effects.

[LindaRacine]

And, gabapentin certainly has its share of side effects. (I can't take it.) Nonetheless, if you could avoid another surgery, it seems like it would be worth the risk.

[jackieg412]

I agree. When I mentioned the side effects the Dr said there is a new medication that we might try but I don't know what it is called. I don't think it would be the total answer. The arachnoiditis needs care. There is no approved surgery to help with that. Also who would want a surgery directly in the spinal cord that may not help. It would be an attempt to cut the webbing between the nerves. It was never suggested by the neurosurgeon. The L5 level is comprised by a bone spur but he also said the risk is too great. He would have to undo parts of the fusion and e considered it too risky.

[titaniumed]

Jackie

I don't know what to say other than that I am so sorry that you are experiencing this.

I did stumble upon a site where(Oral) Medrol packs (Methylpredinosone) are used, which is what I was given for my cervical herniation's. You might recognize some of the medications used in this article.

Notice that they recommend using a rocking chair.....

Melissa was also a candidate for a stimulator, but declined it, and also quit her meds a few years ago.

https://www.practicalpainmanagement....tment?page=0,1

I cant imagine how painful this must be....

Ed

[jackieg412]

The pain is there but I am more worried about the neurological problems.they do seam to be progressive. I have a brace on one leg and may need one on the other.I see the Dr on Tuesday. I guess we will decide the course of action.

[babyboomer16]

Hi Jackie, I'm so sorry to see you have yet another problem to deal with. It seems that some of us can't stay out of the Drs. Office!! I was wondering why you are not a candidate for opioids medication? Is it the type of pain it is? Wow! This is a low blow for you!! I hope you find the answer to this problem!! Please keep us posted~~ warmly, Linda

[golfnut]

Jackie,
I am so sorry you are having these problems.

[jackieg412]

Thanks for all the nice wishes. I am not a candidate for opioid medication because of the side effects. I have severe nausea. This last time even direct delivered in the spinal cord and using micrograms of opioid meds, I vomited for three days. We used anti nausea meds but it made no difference. So it limits the meds we can use.
One medication was real effective.
I passed the neurologist test.

[babyboomer16]

Thanks for all the nice wishes. I am not a candidate for opioid medication because of the side effects. I have severe nausea. This last time even direct delivered in the spinal cord and using micrograms of opioid meds, I vomited for three days. We used anti nausea meds but it made no difference. So it limits the meds we can use.
One medication was real effective.
I passed the neurologist test.

OMG!!! I guess you are deffinatley allergic to opioids!!! I'm glad you found an effective medication. Glad they were diligent in finding something to help you. You've certainly had your share of medical problems!!!! Wishing you the best~~ I know what living with adversity is all about Jackie~~ warmly, Linda

[jackieg412]

Ed I read the article. It gives a lot of information. It mentions rocking. And I quess that is why I rock back and forth when I'm being bothered.

[titaniumed]

Jackie, You mean rock back in forth in pain.....A lot of us know, I paced after my surgeries in my recovery, almost wore the floors out in my home. This movement was probably a good thing....

Here are a few interesting videos...(For all of us)

Dr Tennant....Diagnosis and treatment of Arachnoiditis
https://www.youtube.com/watch?v=3epmtDBTj4c

Dr Burton.....
https://www.youtube.com/watch?v=wrvRf8fxmTY

Ed