Hello, I had a craniectomy in Jan. 24 2007 to remove an eosinophilic granuloma from the right front temporal region.
The recovery has not gone as planned. I have debilitating head pain two inches back of the surgery site that feels much like the pain of an abcessed tooth.I have tried Indocin, neurontin, topomax, lyrica. Nothing helps. At first it was constant now I have some days of relief when it is down to a dull roar. Just when I think I am finally getting better I am swallowed by the pain again and life stops for days at a time. It is more a pain in the head than a "headache" as the rest of my head is fine except for a two inch area.No external stimuli effect it except high heat and humidity.From my research I thought it was closest in definition to a"chronic post-craniotomy headache"and one neurologist I went to see agreed with me and told me the nerves may have stitched together wrong and it could take as long as three years to calm down. I don't know if this is the right diagnosis or not but I don't know where to go or who to see to find out. I have seen the two neurologists and they want to help but seem to be guessing a lot.The last thing one did was inject me with Botox. That helped for a while but it wore off. I have two friends who had skull surgery and they are fine. I am twenty months out and still suffering. Can you offer any insight or suggestions?
Treatment of postcraniotomy headache includes pharmacologic and non-pharmacologic approaches. As you may know by now, a lot of these therapies are not curative, they will not completely resolve the pain, but will improve your symptoms. Unfortunately in some patients, some pain may persist indefinitely, though with time most patients have improvement of their pain without further treatment.
It sounds like you have tried indocin, neurontin, lyrica, and topamax. These medications have been shown to be effective in some patients if they are used in the appropriate dose and given the chance to work. Make sure you have used the maximum dose allowed and have given the medication a chance to work (could take weeks).
Other possible medications that can be used include tricyclic antidepressants such as elavil and certain antiepileptics are effective (even when seizures are not occurring) such as depakote and lamictal.
It sounds like botox was briefly effective for you but wore off; this is an expected feature of botox, and reinjection is indicated if it had provided you with relief. Injections every few months may be necessary, and if they are helpful, you should explore this option with your doctor. Besides this, evaluation at an anesthesia chronic pain program for other types of anesthetic injection may be helpful as well. If you pain persists, evaluation at a non-anesthesia chronic pain program may help you learn to live with your pain and find ways to cope/manage it.
You may benefit from evaluation at a specialized headache center which may be able to provide you with insights as to the cause of your pain and management strategies.
Thank you for using the forum, I hope you find this information useful, good luck.
Thanks for using the forum. I am happy to address your questions, and my answer will be based on the information you provided here. Please make sure you recognize that this forum is for educational purposes only, and it does not substitute for a formal office visit with your doctor.
Without the ability to obtain a full history from you and examine you, I can not comment on what the cause of your headache is from. However, I will try to provide you with some information on postcraniotomy headache.
Postcraniotomy headache is not uncommon. Depending on the research study, up to 50% of patients can experience one after a craniotomy. It obviously depends on the location of the surgery as well as the extent. The general features of this type of headache is that it is maximal (worst) at the site of incision and it develops within 7 days of surgery. This type of headache has been classified into two types depending on how long it has been going on: acute post-craniotomy headache, which resolves within 3 months after craniotomy, and chronic post-craniotomy headache, which persists for 3 months following surgery.
The pain is thought to result from predominantly muscle, soft tissue, and superficial nerve irritation rather than from the meninges (covering of the brain) or brain itself. Certain surgical techniques (at the time of surgery itself) can be employed to reduce the risk of postcraniotomy pain.
I will continue this message on a separate post due to word count limitations.
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