ANA Discussion Forum

Post-Treatment => Headaches => Topic started by: Joe Meehan on April 22, 2009, 10:00:07 am

Title: Med's and wait/or Janet's surgical option?
Post by: Joe Meehan on April 22, 2009, 10:00:07 am

Below is an email conversation I had w/Janet who underwent her second procedure to correct occipital nerve problems for headaches/spasms some of which where connected with her AN surgery and some that may or may not have been (I hope I have that right). Surgery is the last resort but it is a resort and if my pain continues I'm certainly going to look at it. I don't want to be taking drugs the rest of my life.

She found Dr Ducic @ Georgetown Medical Center. You can Google him. He specializes in this type of surgery and he's one of the best. Her first procedure went so well eliminating headaches on the AN side as well as the other she decided to have one more surgery to get one last hot spot on the opposite side of her head. It looks like it went really well although it’s very early. The Dr did find a problem on one of her occipital nerves and fixed it. I'm so happy for her and grateful she continues to share her knowledge w/us.

4/20/09

Janet I've been wishing and praying for the best for you today. I hope you get that one last hot spot eliminated today.

I went to the Mass ANA gathering, it was fantastic. I let everyone know you were going in today, they send their best! Talked to Captain Deb on the phone. I learned a lot.

You are my go to person. I think you figured this out.

Anyway let me know how it went and how you are feeling. God Bless Joe

4/22/09

Joe,

Thank you so much for your well wishes and prayers. I read your recent post on the website and was happy to hear you are getting some results from the Botox. I was planning to post but I don't have my password in DC to login. (It must recognize that I am at a different computer.)

Anyway, I am doing great. The surgery went very well.  I am trying not to be too optimistic, only to be disappointed but so far I feel amazing. I am not sure I am capable of having a headache, as he cut the nerve.

While being admitted to the hospital, I started coughing which triggered  a timely excruciating nerve throbbing pain. He marked my skin exactly in the right spot. Dr Ducic found that the nerves crossed over the artery. He cut the nerves and removed the artery. He buries the nerve ending and attaches it to a muscle that so it won't cause problems. The plan was to either move it or cut it depending on what he found. He must have explored a good portion of the nerve route as my incision is fairly long. (L shape from the top tip of my ear to the nape of my neck in the middle.) I hope to get a surgical report so I can be more accurate as to what was done.

My head feels so calm. My skin is numb in the back. My eye feels normal. I cannot feel most of my incision. I feel a little soreness around my neck, appropriate to incisional pain. I have been taking Vicodin for that but it has been14 hours since I have taken one. I think I will switch to Ibuprofen, if I need anything.

I couldn't sleep last night because I felt so good! I kept thinking, "Is this really the end of these headaches?" It seems too good to be real. I will keep you posted. Feel free to pass this e-mail on to anyone interested.

I hope your new medication kicks in soon!

Best Wishes,

Janet

4/22/09

Hi Janet,

I can hear the joy in your voice!! I'm so happy for you. I know it is early but it sounds like he found the problem. I couldn't be happier for you. Could you imagine if it is finally over?

Surgery should be the last resort but you have definitly proven to me that it is the way to go if time and meds don't work.

Well I hope and pray the headaches are gone forever and you can move on to bigger and better things. Congratulations all your hard work and research has paid off!! Your journey which you have shared on the board will be an invaluable resource to people like me who are just beginning their journey to solve their pain issues. God bless you and keep you pain free! Joe

Title: Re: Med's and wait/or Janet's surgical option?
Post by: Jim Scott on April 22, 2009, 02:35:18 pm

Joe:

Based on the stunning success of Janet's surgery, I would have to seriously consider going that route, were I in your situation.  However, that decision, as always, is ultimately yours. 

Whatever you choose, know that you'll have the hopes and prayers of the folks, here.  Let us know your decision.  Thanks.  :)

Jim

Title: Re: Med's and wait/or Janet's surgical option?
Post by: leapyrtwins on April 22, 2009, 10:21:18 pm

Joe -

as you say, surgery is a last result, but I'm with Jim.

Based on Janet's very encouraging success, you might want to follow her example and have the surgery.

If nothing else at this point, you might want to schedule an appointment with Dr. Ducic and see what he thinks your outcome would be.

Good luck  :)

Jan

Title: Re: Med's and wait/or Janet's surgical option?
Post by: Joe Meehan on April 24, 2009, 09:27:59 pm

Hi Jim & Jan, Thanks for the encouragement. Yes it will be a last resort but it does give me hope that I could be normal again someday if the drugs don't work. I have ice packs on my head right now my neck and head are in lock down mode. I will confess however since getting the Botox and the Lyrica I have been feeling better no train wrecks this week. I'm going to give it a go for a while and if I continue to improve I will let the treatment take its course. Dr Feel Good is confident he can get this under control and I'm going to give him every chance.

In Janet's case I don't think there were any drugs that would have corrected her problem, surgery may have been the only solution. Every case is different and it may not be for me but if this is an option down the road I'm going to explore it. There are risks associated with every surgery but it is outpatient, no overnight & no major head trauma. The Dr assured her it would not make the problem worse and there was a good chance he could make it better. I'll take those odds. My wish is that I won't need it but I refuse to live my life like this much longer. All I do is manage pain 24/7 w/drugs. Life isn't exactly on hold or unbearable I love life and live it w/a smile but is it too much to ask to heal and be normal again? I hope not I want my life back and I'm going to do everything I can to achieve it. There is a glimmer of hope however and I will give it my best shot. Deep down I trust I will not need it but it’s nice to hear a success story..... It also gives me hope that there is a plan B.  :) Live is good the Sox just came back to beat the Yanks in extra innings and my endorphins are flowing.

Title: Re: Med's and wait/or Janet's surgical option?
Post by: bridgie on April 28, 2009, 10:09:45 am

I too hold Dr Ducic in my back pocket if other options fail me. Earlier this year I contacted him. He requires you to fill out a questionaire available on his website. Once you fill out the questionaire and send along related documents such as reports of your successful botox treatments and/or local injections plus a small fee...he'll review your records to see if indeed you might be a candidate for his particular "headache" surgery.

He did review my records and invited me to DC for an evaluation as I appeared to be a potential candidate. (Three botox injections and local injection and many other meds.)  He cautions you can't be treated on the same visit as the evaluation. There are numerous reasons for this.  I even went so far as to schedule an appointment with Dr Ducic but later cancelled.

I cancelled because in the meantime I became a patient of a really top headache neurologist. Although I've been evaluated at several top teaching institutions I'd really not been worked up by someone of my new headache doctors calibre. I believe this doctor has finally given me an accurate diagnosis. This lead doctor and his fellowship docs initially spent over 3 hours questioning me about my pain problems! According to this doctor one of my particular diagnosis that is causing me pain is trigeminal neuropathy which does not respond well to surgery. And since they've told me this I've verified their statement in medical literature. 

I'm simply putting my experience out there to bring up the point that getting an accurate diagnosis(s) is an important part of getting the best treatment no matter what we decide to do. Dr Ducic is concerned about this too. He even requires his potential patients have a on-going relationship with a local pain management doctor or headache specialist  before during and after his care.

Prior to becoming a patient of my new headache doctor I figured I'd exhausted medical management and surgery was now my only hope to go forward. Besides getting out of constant pain I wanted to be able to have a BAHA hearing implant implanted in the area where I suffer the most. This goal has been off the table due to my pain condition. I'd hoped Dr Ducic could address the pain problem and then maybe I could have the implant. I was very surprised my new headache doc basically said just do it. He has enough confidence that he can help manage this pain. He does feel I will have increased pain after the implant but even then he can help me without going further down the narcotic road. So rather than seeing Dr Ducic I'm heading straight to the ENT for the implant surgery now scheduled late June. Shortly after the implant procedure my headache doc will hospitalize me and begin the process to help me deal with this pain problem hole I've lived in too long.

I'm really excited for Janet. She is a beacon of hope here. There are likely some here that can be helped by Dr Ducic or other doctors trained like he is. Interestingly I searched around to see if there are doctors more local to me who trained as Dr Ducic trained. In my area there are. They all went through the same training program as Dr Ducic. One of them no longer performs this type of surgery. He didn't seem too enthusiatic about it either. Still, he recommends the doctor who is in charge of the training program and does not mention Dr Ducic even when I brought him up. The other local doctor I contacted does not actively advertise this headache surgery although he says he'll do it. He also went through the same training program as Dr Ducic. This doctor practices in the suburban community I live in. Neither my primary care doctor nor the only headache specialist in my local area (not my current headache doc) have even heard of this plastic surgeon performing this type of surgery here. In otherwords, he's not promoting it to the patient and doctor community. I think I only found out he was trained through the training program website or something like that. I'm not trying to be a buzzkill here. I'm simply trying to see this from all angles. When I asked my new headache doctor if he's had experience with patients like me having "headache" surgery he says he has and typically their pain problem is made worse. All this has me proceeding with much caution! That's my point here. Proceed with caution and get an accurate diagnosis.   

Title: Re: Med's and wait/or Janet's surgical option?
Post by: Joe Meehan on April 28, 2009, 09:38:12 pm

Hi Bridgie, Thanks so much for sharing. Anytime you are talking about further surgical procedures you have to eliminate all other alternatives. I had this conversation with my Dad today. I had a tough Saturday night but after looking through my journal I'm having less pain and none of the off the chart train wrecks. I told him I was going to give this treatment time before submitting any information to Dr Ducic. Dr Ducic did tell Janet there was little chance of making her condition worse which contradicts what you heard maybe it was specific to her case. She had obvious hot spots. A nerve trapped under her titanium plate and another nerve pierced by a blood vessel which I believe was noted in her surgical report.

Janet too met a lot of skepticism. She and her Drs did their homework. In her case it was a slam dunk. When she pressed on her titanium plate it radiated pain. Her surgeons noted the nerve pierced by a blood vessel in the surgical report so they knew about 2 of the 3 hot spots before even going in. What I worry about is narrowing my problem down. I really don't have a hot spot. I have very sporadic pain all over my head and neck. I guess it will be a process of elimination.

I have pain daily that I can set my watch by with a spasm just under my incision which if left alone will spread to my entire head in one giant contraction. The pain is absolutely crippling but it only lasts as long as it takes for the heavy doses of OTC pain meds and Diazepam to kick in. Since the Botox I no longer get the spasms there they have stopped thank God. I'm sure they will return once the Botox wears off but for now I'm spasm free in my biggest trouble spot. The headaches didn't get any better however.

What scares me is narrowing it down to the problem spot(s). I guess that's what they pay the pay these Drs. for. For now I will continue with Dr Feel Good and see how this progresses. I'm on pain meds 24/7 and I'd be in a loony bin with out them. As soon as they start to wear off I feel immediate pain. Thank God for modern medicine.

I hope you find your way through this maze. With eveyone's input I think we will. There is hope and that is all we need to keep us going. Joe

Title: Re: Med's and wait/or Janet's surgical option?
Post by: Joe Meehan on April 28, 2009, 11:02:02 pm

Hi Bridgie, I have a few questions:
1.   Do you have facial/jaw pain from your trigeminal nerve? What are your symptoms? Mine are muscle spasms in my neck/head followed by muscle tension headaches. Every muscle in my head knots up the worst being in my temples. I have nerve pain in my occipital area at the base of my skull on both sides as well as on the top/back of my head radiating to my temples, eyes and forehead. I have no jaw or facial pain. I have developed double vision but my facial paralysis has returned to about 80% from zero.
2.   What was your accurate diagnosis? How did they arrive at this decision? Did they conduct any tests?
3.   Did you keep a journal? My worst episodes are very late at night before bed and during sleep. I definitely think my headaches are muscle tension combined with rebound headaches which feel like hangovers due to all the otc’s I'm taking,  in my forehead.
4.   How long have you been living with this and what meds have you been on? I take Tylenol, Excedrin Migraine (my favorite), Ibuprofen, Naproxen (although it doesn't seem to work), Diazepam my life saver for spasms & Cyclobenzaprine (only at night it knocks me out and blurs my vision),1/4 tabs at a time for both muscle relaxants and my new anti nerve inflammatory Lyrica and Lidoderm patches as prescribed by my pain specialist.
5.   Do you know if there are any doctors that perform this surgery in the Boston area? Can you give me the web site for this specific training program? I’d like to poll some Drs. in the area here. It sounds like this surgery can only help a very narrow list of patients with certain nerve problems. That makes sense to me. What scares me is that the problem may get worse. That would be unacceptable. I couldn’t imagine this condition getting worse.
6.   So your treatment will require hospitalization. What kind of therapy will they conduct?

You can email me privately if you feel the need. I really appreciate the help.

Joe

Title: Re: Med's and wait/or Janet's surgical option?
Post by: bridgie on April 29, 2009, 08:58:05 am

Hi Joe~
I'll do my best to answer your questions.
1. I get a mixed bag of facial and head pain. I would not call it tension like. My pain is pretty much constant. It can be burning, stabbing, sharp, gnawing etc. It can move around but rests in the area I've had surgery. This "neuropathic" pain can iniitate a horrible migraine attack.
3. I've kept journals off and on.
2. There is more than one reason I have pain and yes our own particular anatomy and physiology is the key which is why an accurate diagnosis is always tops. (Janet clearly had  specific mechanical problems) This requires a good intake or initial evaluation in the first place. After my intake and careful review of my history and testing I'd already had done my headache doctor (Peter Goadsby, MD) proclaimed I had trigeminal neuropathy which is not necessarily the same as trigeminal neuralgia although you can have neuralgia pain problems with trigeminal neuropathy--which I do. I also have a primary headache condition, migraines, which was activated via head trauma from my initial diagnosis (SCDS) and the 4 craniotomy procedures, mastoidectomy, and extensive debridement of my scalp. My initial craniotomy lead to a cascade of complications: ie. facial palsy and unexpected deafness. Steroid treatment for the palsy and deafness lowered my immune system and lead to a bone infection (cranial osteomyelitis). The bone flap was removed which has more than likely caused direct scarring to the dura which alone can cause pain. Although this is mechanical at this point padding the dura with a titanium plate may increase pain according to experts. Also the bone infection eventually lead to an cranial epidural abscess. The area still enhances when I have an MRI.
4. The above trauma and head pain and headache problem began ~5 years ago. I've tried a huge laundry list of meds. Various narcotics, antiseizure, antidepressent, triptans etc. Local injections too. Janet is right, each doctor specialist can be limited by their area of specialty. Like her, overtime with a lot of effort and frustration you zero in on the specialist with the right arsenal at their disposal.
5. Lee A Dellon, MD appears to be the mentor doctor to most of the peripheral nerve surgeons performing the so-called headache surgery including Dr Ducic. He runs a program called the "Institute for Peripheral Nerve Surgery." If you google etc you'll likely be able to figure out if there is someone in your area. I found it ineresting to find out what the local sentiment regarding this type of treatment is.
6. The hospitalization will involve removing me from current meds and getting me started on other meds. I'm still learning about what the specific therapy will involve. The idea is to attempt to break the pain cycle.

Joe have you asked your doctors if you might have a primary headache condition like migraine? In my case the trauma caused an inheritated migraine condition to really ramp up. I'd not had problems w/migraines until the trauma activated it. From what I've read, many times what we think is "tension headache" is really migraine and needs to be treated accordingly.

Title: Re: Med's and wait/or Janet's surgical option?
Post by: Janet on April 29, 2009, 11:48:33 pm

Yup, very important to have the right diagnosis before you consider surgery.  A diagnosis of migraines, occipital neuralgia or scar neuroma needs to be established.

My problem was that each specialty diagnosed me differently! I got a diagnosis that fit the treatment they could offer. I had to ask for all my diagnostic tests until I  was satisfied. Understandably, each was biased to the treatment within the scope of their practice. Each helped in a different way and I was thankful.  OK, I am going to say it. You are not only a patient but a paying customer as well. I found them to be reluctant to refer.  No wonder there is so much confusion.  Dr Ducic seemed to be the only one that was really interested in a correct diagnosis and worked as part of a team with the other specialties.

There is no standard of care. Headache treatment is still in the early stages as illustrated by so many opinions, treatments and theories on this site alone.

I think by the time you consider surgery, you have tried so many treatments that don't quite live up to expectations. We become a discouraged bunch living with side effects, pain and conflicting theories. Sometimes analysis paralysis takes hold and you just don't know where to turn.

I found Dr Ducic to be professional, upfront, realistic and skillful. Everything I had concluded and physically felt made sense when he explained the anatomy of the nerves.  After working in a large medical center for years, I know that the best resource to find a good surgeon are anesthesiologists and operating room nurses. They see all the doctors in action. They know how their technique compares to others and how they handle emergencies.  Other doctors tend to refer to their friends or are required to refer to the same hospital system. It is one of the perks of being a OR RN. You get the inside scoop.  I was way out of my comfort zone going across the country to a hospital where I didn't have connections. I did sense a level of respect for Dr Ducic and the staff spoke highly of him without my asking. In the end, I had to trust my instincts. Also, large medical centers have quality assurance committees. The hospital I worked at would never allow a doctor to continue with continued bad outcomes.  I saw many surgeons loose their privileges, only to relocate to smaller hospitals or required to go back to school.  I figured Dr Ducic has been doing this long enough to pass the grade. He sent me the operating room report in the mail without me requesting it.  Again, very upfront.

Another consideration was the proposed changes in the US Healthcare System. I have great insurance and wondered if I would have the option of being treated across the country at a later date.  Insurance companies have to be financially hurting with the stock and bond markets still slow. Cutbacks are a logical solution. Timing became a consideration.

I still am feeling fine. No headaches or pain behind the eye. A little tender around the incision. Creepy crawly sensations now and then. Taking an occasional Tylenol.  These nerves seem to take on a life of their own, so I am still cautiously optimistic and enjoying each day without a headache.  Do you remember my first posts describing my headaches? I was an electrical mess! I am a different person. If the unthinkable happened and my headaches resurfaced, there are a lot of drugs I haven't tried.  There is always a plan B.

I guess I am trying to say that you should to be comfortable with the treatment you choose. Thankfully, there is more than one right answer!

Best Wishes,
Janet

 







 

Title: Re: Med's and wait/or Janet's surgical option?
Post by: Joe Meehan on May 01, 2009, 12:33:18 pm

Hi Bridgie,

I can't believe what you've been through. I'm sorry I can't even say I feel your pain....I can't imagine. You have so much going on! I hope this works out for you I'm praying for you. I really appreciate your input.

I had someone slam into the back of my truck the other day with my three kids in the back seat. My head and neck needless to say locked up. They were fine thank God. Just what I needed. I think I'm in for a rough few days but nothing I can’t handle. If I had any luck at all it'd be bad.

Thanks for taking the time to answer my questions. I have a lot to learn. My pain is definitely hard to pin down I have both muscle tension/spasms and what feel like hangovers in my forehead. Maybe they’re rebound headaches from all the OTC’s? I also have what seem to be nerve inflammation hot spots that radiate pain. They may be migraines triggered by the surgery. I have no idea what to think at this point.

It feels like every muscle in my head spasms at times, others feel like nerve inflammation and some hangovers. The worst ones are the muscle tension head/neck aches. My temples actually knot up and the pain is crippling. I don't experience the typical migraine symptoms that my surgeon described. I'm not bothered by sound or light I don’t have an aura and they only last about an hour or so until the drugs kick in.

My neck spasms just seem to spread until everything locks up. I take heavy doses of my muscle relaxants and it subsides as soon as they kick in. I wish I could Botox my entire head. I do have forehead headaches milder that feel like a hang over I think they could be rebounds from the OTC's. I’ve got to get off all of them. Reading my journal is scary w/all the pain meds I’m taking.

The others seem to be hot spots w/inflamed nerves on both sides. They start in my neck go to the middle of the back of my head and make a bee line to my temples and behind the eyes. I have hot spots on the back of my head on both sides and the very top of my head. Since taking the Lyrica however it seems to be diminished somewhat. Lyrica is supposed to be an anti nerve inflammatory. The pharmacist said it didn’t work for his inflamed nerves he was skeptical.

You've made it quite clear getting an accurate diagnosis is a must, I agree. Janet spent a long long time getting one and I'll do the same. I think mine is mechanical and also rebounds from the OTC’s but only testing will tell I guess. I will take your info to Dr Feel Good and see what he has to say. I’ll keep you posted. For now it is continue with the drug regimen and hope. Joe

Title: Re: Med's and wait/or Janet's surgical option?
Post by: bridgie on May 03, 2009, 02:09:38 am

Janet~
Your explanations are valuable here. Your statement "there is no standard of care" is so true! Those words say a lot. The "headache" business just like the back pain business is big business and we need to become educated consumers.

Joe~
Google the international classification of headaches and read up. Note: "Chronic Post Craniotomy headaches" if you had a craniotomy. Becoming aware of the classifications and the treatments helped me ask better questions. Also there is a book called: "How Doctors Think" by Jerome Groopman,MD which helps us ask better questions and make better doctors of our doctors. And Dr Goadsby just published a book (2009) called "Headache a Practical Manual." 

Title: Re: Med's and wait/or Janet's surgical option?
Post by: Joe Meehan on May 04, 2009, 09:10:31 pm

Bridgie thanks for the info. I'll surf that site and learn more. Here is what they had to say.

Immediate post-operative headache may occur in up to 80% of patients after craniotomy but resolves in most patients within 7 days. Fewer than one-quarter develop persistent (>3 months) headache related to the surgical procedure. Posterior fossa procedures, especially suboccipital craniotomies performed for acoustic neuromas, are more likely to be associated with post-craniotomy headache.

The pathogenesis of chronic headache after craniotomy is unclear but may involve meningeal inflammation, nerve entrapment, adhesion of muscle to dura or other mechanisms. Modifications in the operative procedure, including the use of osteoplastic cranioplasty, may lead to a reduction in the incidence of post-craniotomy headache by preventing adhesion of muscle and fascia to the underlying dura.

There is such a laundry list I'm skeptical they can narrow it down. Joe