Experimental Treatment

[Sally Girl]

Yesterday we took our young adult daughter to a local board certified anesthesiologist who has obvious strong ties to Medtronic (a local corporation). We knew about those strong ties going into the appointment.

Our daughter has been battling Chiari/PTC and who knows what else for nine years. Six rough surgeries later and more questions than answers at this point. She has a possible spinal fluid leak(s) which is a whole other worrisome unknown. Her head pain is constant, unbearable, and very high doses of opioids and Xanax do not stop it.

The anesthesiologist we saw yesterday surgically implanted pain pumps in ten patients with intractable head pain. He threads the catheter to C-1 to C-2. All ten patients have had improvement with their head pain, some remarkably so. My daughter would be number eleven. This is an experimental use of the pain pump, but he feels it is safe.

He puts Bupivacaine and an opioid in the pump. My daughter tried IV Lidocaine infusions at The University of Chicago Medical Center which completely blocked her head pain until the infusions wore off (within two days). He said Bupivacaine and Lidocaine are very similar. So that alone gives me hope.

He said that spinal fluid actually flows more vigorously higher up, and he feels the pump works better when the catheter is in the C-1 to C-2 area.

What do you think, those that know about pain pumps?

Cheryl

[Mark N]

Cheryl, I investigate pain pumps but decided not to pursue getting one because I have adequate control with medication. It sounds like this can give your daughter some hope and as long as she goes along with it I hope it works. I wish her and you the best of luck and I hope you can come back and tell us what a wonder it has been in her life.

[lobelsteve]

As long as he does the trial of medication through a spinal catheter at those levels while she is in the hospital for 2-3 days for monitoring, what have you got to lose?

[Sally Girl]

I certainly will let you all know what happens. It will be a while though, to go through the process. Maybe two months.

Cheryl

[lobelsteve]

Why so long?
I can discuss a trial with a patient on Monday and get it precerted and done by Thursday.

[Sally Girl]

I think this from talking to one of the ten patients (my friend) who has the pain pump for migraine. He told me to expect it to be two months. But he could be wrong, I suppose. The surgeon did not say, and we didn't think to ask about a time frame. We go back and see him on March 3 for another consult.

My friend told me he had to go through psychological testing first. It was required. And it took a while to get the appointments and to do what was required.

My daughter's home health nurse thinks that maybe my daughter won't have to do the psych testing. She said this clinic has to weed out drug seekers with this testing. She believes that since my daughter is has been diagnosed and treated by experts for her particular pain conditions, and that it has been documented that the six brain/shunt surgeries did not relieve her pain, she may be a special case. So maybe my daughter won't be required to do the psych stuff. But who knows.

There is only one surgeon for the many pain clinic locations (eight maybe). So I suppose he is pretty backed up, as far a the surgery schedule.

I'm just guessing at all of this. But your question is a good one.

I'll keep posting as we go through the process.

Cheryl

[Stella Marie]

I have had a Medtronic Pump implanted for about 3 years now. It has totally changed my life for the better. Not psych issues are about drug seeking. Some individuals have a hard time having a foreign body implanted that continuously pumps medication and they have no control. There are times when the medication mix or rate of infusion may not be just right. Unlike oral medication, if the medication does not feel right you can not just stop taking the pills. You stuck until you can get back to the doctors office. Psychologically, some people can not handle that. One the upside, you only need 1/100th the amount of medication dose in the pump then you do orally because it goes directly in the spinal column. Hot bathes and hot tubs are not recommended. There is a wide variety of meds you can put in a pump. There is a great online support group for people interested in getting or those that already have pumps. It is called Pumpsters. There are alot of data on meds, the procedure, adverse events, etc.

Good luck.

[lobelsteve]

I have had a Medtronic Pump implanted for about 3 years now. It has totally changed my life for the better. Not psych issues are about drug seeking. Some individuals have a hard time having a foreign body implanted that continuously pumps medication and they have no control. There are times when the medication mix or rate of infusion may not be just right. Unlike oral medication, if the medication does not feel right you can not just stop taking the pills. You stuck until you can get back to the doctors office. Psychologically, some people can not handle that. One the upside, you only need 1/100th the amount of medication dose in the pump then you do orally because it goes directly in the spinal column. Hot bathes and hot tubs are not recommended. There is a wide variety of meds you can put in a pump. There is a great online support group for people interested in getting or those that already have pumps. It is called Pumpsters. There are alot of data on meds, the procedure, adverse events, etc.

Good luck.

Excellent info. The psychological screen also looks for personality disorders, somatization. It stratifies those who would do well with just medical treatment from those who need medical and behavioral therapy.

Medtronic has a new gizmo for the pump that is a PCA remote control. Now some of the patients can get their own remote to add a bolus.

[Pharmacist.steve]

There are times when the medication mix or rate of infusion may not be just right. Unlike oral medication, if the medication does not feel right you can not just stop taking the pills.

My wife has had the pump almost 3 yrs and has the PTM ( Patient Therapy Manager) from the beginning and it is set up that she is able to control ~ 40% of her daily allotted mgs. Some 24 hr periods she never uses a "push" other days - when she is more active - she will "max out" the allotted pushes. If you have the 40 ml pump... it has this capability built into it.. to use the PTM...

[lobelsteve]

My wife has had the pump almost 3 yrs and has the PTM ( Patient Therapy Manager) from the beginning and it is set up that she is able to control ~ 40% of her daily allotted mgs. Some 24 hr periods she never uses a "push" other days - when she is more active - she will "max out" the allotted pushes. If you have the 40 ml pump... it has this capability built into it.. to use the PTM...

http://professional.medtronic.com/devices/synchromed-II-for-pain/programmers-and-accessories/index.htm

myPTM is a cool device. Cost is $800 but available as included with the implant surgery. The devices are not married to the pump and can be recycled for use with other patients. This is quite useful as they can be donated back to the clinic for patients in hospice who no longer have a need (pass away). The devices can then be used for the next patient.

[Pharmacist.steve]

http://professional.medtronic.com/devices/synchromed-II-for-pain/programmers-and-accessories/index.htm

myPTM is a cool device. Cost is $800 but available as included with the implant surgery. The devices are not married to the pump and can be recycled for use with other patients. This is quite useful as they can be donated back to the clinic for patients in hospice who no longer have a need (pass away). The devices can then be used for the next patient.

My wife has the older model based on a handsprings PDA.. it is more bulky than the newer model... but does the job. IMO.. it turns a very good pain management tool (implanted pump) into a EXCELLENT pain management tool

[Sally Girl]

My daughter is on Duragesic and can't do hot baths or hot tubs. Her dysautonomia also prevents her from doing anything "hot."

She had a lumboperitoneal shunt in her spine for over two years so she is used to having an implanted device.

She has never felt in control of her pain because nothing has ever worked well for her pain, except for IV Lidocaine and IV Ketamine infusions (the benefit was temporary).

So hopefully she will "pass" any pre-testing and get to try this.

She has a herniated brain which is being propped up by a titanium plate, intracranial pressure which has swung from high to low (possible spinal fluid leaking), five herniated and bulging discs, and dysautonomia. She has been through the wringer :(

Thanks for the input!

Cheryl

[krashleen]

Hi there Cheryl, I have Chiari, Ehlers-Danlos syndrome, and have had the PFD surgery with extraction fusion from the skull to c-4.

My doctor discussed the same treatment as your daughter.. and I have found since we bumped up the oxycontin to 40MG's three times a day with oxycodone IR for b/t that my pain level has been a very manageable -2-.

I got the whole spiel in regards to a psychological profile, and insurance approvals.

I just wanted to wish your daughter well, and I'm sorry that you have to watch this situation. There is nothing worse than seeing your child in pain.

Be well, and let us know what happens, k? Oh, and when I talked to my NSG about this treatment, he said I wouldn't be eligible for MRI's..

[Sally Girl]

Thanks, Krashleen. I'm glad your pain is controlled so well :)

Anna had a new brain MRI on Thursday, and she has a 7.6 cm by 2.3 cm pseudomeningocele adjacent to her craniectomy. Her surgery was in November, and this seems like bad news. We haven't heard from the neurosurgeon yet. She is with one of the Chiari experts.

If you would like her CaringBridge Site, you can send me a PM.

I don't know what is going to happen right now :(

Cheryl

[Sally Girl]

We saw the pain doctor again yesterday. He said we need to sort through the current neurosurgery issues first. But he sounds like he will be ready to go forward when we are.

His nurse said getting MRI's will be fine with the pump.

She suggested my daughter see one of their psychologists, but it is optional, she said. I thought it would be a good idea to do it though.

Cheryl